AJ's Awesome Adventure

The Resilient Men in My Life

2012-01-31T21:16:00.001-06:00

Today was one of those days I anticipated to be emotionally draining right off the bat.

Somehow, the day decided to out-do itself and went above and beyond the call of emotional duty.

First up, an appointment with AJ's cochlear implant team. We decided to try the ESRT test a few electrodes at a time without sleep deprivation or anesthesia. Amazingly, between five adults and AJ we managed to achieve the ESRT! A new program was created from the results. (I will do a separate post explaining more)

And then.

We figured out his processors have been switched. Meaning, he hasn't been stimulated. As in -NOT HEARING A DARN THING. Cochlear implants now have this "safety/non-freak out" feature. The processor only works with one side and is programmed so that it will not work on the opposite side. Can you imagine wearing a completely different program on the wrong side? Ouch.

I have no idea how this happened, and it really doesn't matter. What matters is that we make sure the mistake is not made again. I'll be using the remote to test each morning to make sure we're copacetic.

My heart literally dropped the floor and I could not control my tears, not matter how hard tried. This was the last thing we needed. (How many times have I said that?) I started questioning things, so that's why he's not turning to his name, etc. All things you see in hindsight. It bothers me that I don't know how long he's been "off-line". When we put his implants on he freaked. He wore one home and when I tried two, he screamed and I got sick. Lovely. I felt so overwhelmed that we were in a broad sense, starting over. I can't stop his life to help him adjust-the world is a loud place!

After lunch, we went to downstairs to swing and he tolerated two just fine. The pattern I found today was that he was fine for a while and then just needed a break. He then tolerated them again...for a while. This is progress.

A few hours later, we ran over to the neurologist's for a quick, painless visit. We came home, ate dinner and listened to Pandora.

And he was happy. Gee whiz, kid. How do you do it? As he giggled with intense excitement over the fact it was bathtime, I felt amazed by my little dude. How.does.he.do.it. So resilient. He's always been that way. He has such an incredible aura about him. He inspires me to keep going. If his little body and mind can do it, than I can at least try, if not do it along with him. His smile is like an etch-a-sketch. Really.

During AJ's first appointment, my foot fell asleep. We were all sitting on the floor and I felt my foot fall. When I attempted to get up at the end of the testing my left lower extremity was completely asleep. In a very deep, odd way. It scared me. I tried to walk and it was this really weird feeling. Not that funny, ha-ha my foot fell asleep feeling.

And I thought, Oh My God. My sweet husband has this happen without notice. I was humbled. His MS has been playing games recently, which.... Has thrown us for a loop. We were blessed with a full year without symptoms. Although his recent MRI was stable, with no new lesions or activity, there are still some not-so-fun things happening. With no rhyme or reason. Which is incredibly frustrating. So, I took my tiny glimpse into his fight and tried to understand all that I could. So that I can be the best support I can for him. I can't explain how helpless we feel sometimes with all we've been given. Its just a fact.

My husband is resilient too, you see. And for that, I love him more than words can express. He knows. I know. And we move forward. I move forward with the strongest men I've known; the two resilient men in my life.

"I Don't Recall"

2012-01-25T19:17:00.003-06:00

My mind has been all too foggy lately. In fact, a friend posted "I have the attention span of a goldfish today" a few weeks ago and I've adopted that as my "I can't focus" creed.

Seriously. Last week it was the attention span of a guppie. On Monday, I slipped even further and said it was that of a sea cucumber.

So when a friend and I were chatting today and I couldn't answer the question of how many electrodes are firing on each of his cochlear implants...I hung up feeling moronic. I know, I'm my own worst critic. But seriously, this is stuff I know. This is something I KNOW. know I've asked his audiology team. In fact, I've seen the electrodes in all their charty glory on the computer screen not once, but multiple times!

Why couldn't I remember?

Oh yeah. I'm old.

In all seriousness, the sheer magnitude and variety of issues AJ has me juggling is making me increasingly perplexed. I'm finding it extremely difficult to focus on just one thing. Because when you focus on just one, the others fall to the wayside. Believe me, I know. It's a balance, they say. I'm still struggling with what to keep and what to toss in regards to this boy's massive paper trail. Do I really need all of his ER discharge sheets? Do I continue the mass medical binders with tabs for each specialty/area, or do I make smaller binders per specialty? I'm back to writing my daily to-do's specifically for AJ in a specific notebook. Its been my saving grace.

Earlier this week, while discussing his new conjunction, junction, whats your function...scoliosis! issue another friend asked, "I really don't know how you do it all. It seems like one thing after another." For the first time EVER, I agreed with her and said, "You know I don't know either. I do what I can."

And I drink wine. Wine helps.

A New Diagnosis, Plus...

2012-01-21T20:48:00.001-06:00

It's early Saturday morning and I'm up watching and listening to the snow plow on our street. I find them oddly fascinating. I know. Weird.

So, let's start with the new diagnosis.

AJ has functional scoliosis. He has what? Here is a short definition from this site:

Functional scoliosis: A structurally normal spine that appears to have a lateral curve (scoliosis).

Nonstructural scoliosis involves a temporary change of spinal curvature. This is caused by an underlying condition such as a difference in leg length, muscle spasms, or inflammatory conditions, which may produce muscle spasm. Functional scoliosis is treated by correcting the underlying problem. The spine itself needs no treatment.

Functional scoliosis is also called nonstructural scoliosis as opposed to structural scoliosis in which there is a fixed curve of the bones of the spine (the vertebrae).

You may remember Rona from this post. We're scheduling him for outside therapy appointments when he's off school and it just happened to work out that she was going to be at his clinic doing consults. We beat the snow and were able to see her yesterday for a consult. He had a rough start to the appointment...he thought he should spend the entire time in the net swing. He always has a rough time getting out of that particular swing because it calms him and turns him into a loose noodle.

I also think he is able to anticipate what is going to happen. As in, they are going to move my body is ways I don't want to be moved. He's a smart cookie. He was arching, pulling off his equipment, and I immediately took to the iPad to show him the "Time to Work" symbol. I then sat next to Rona and he calmed.

I've learned how these consults work. They are literally "fast and furious". Not in a bad way, but in a constructive way. His SLP and PT were also there, with his PT taking notes via laptop (when she wasn't concurring with Rona), and his SLP doing the paperwork and facilitating the ipad (when she wasn't working with her) while Rona did her thing.

As the words scapula, clavicle, rib cage, and "lats" started to float around, I began to feel amazed, as I often do. I've been around the block enough to know good therapists from bad therapists. Does that sound harsh? I was, for the 7,234 time, amazed and thankful for his therapy team.

And then they said it. "He's got some functional scoliosis going on here." Some what? Scoliosis has been a word used in association with AJ before, as in we want to avoid it, but not functional scoliosis. In short, he's growing SO FAST that his muscles are tighter than they already when growing.

Tight + Additional Tightness = Pressure on the spine = Functional Scoliosis.

It also equals pain for my little man, which is not ok with me.

I turned him around and had them show me, sure enough, a little curve. I could suddenly see how his left shoulder was all "wonky" and this strip of tight muscle pulling from his left shoulder to his right hip. No wonder he's all WONKY!

So what do we do? Soft tissue exercises. The good thing is that it is temporary and can be treated, we just need to keep on top of it. I had his PT show me what to do at home. I am SO grateful for the huge exercise ball Grandma Cheri got him. The first thing the PT did was put him on the ball and do some rotation and lengthening pressure maneuvers. We also need to get him in once or twice a month to check in with his PT/SLP/OT at the clinic.

I did the exercises twice with AJ yesterday after we got him. He was more open to me manipulating him than he was with his PT. When he's not used to his body being in a certain position, even if it feels good, he sort of freaks out. His security blanket is pulling it all in, tight. When getting him ready for a bath, All I could look at was his spine. I imagine I'll be obsessed with it for a while. His body felt better and he moves better after the stretching and lengthening. I don't want him to be in pain. At all. After I had my cry and moved on to the logistics of the whole thing, I started putting together the puzzle. Is this part of why he's frustrated at school and sometimes at home? Because he's in pain and uncomfortable and can't tell us? I would bet money on it.

I'm thankful its temporary and that there is something we can DO.

Rona also observed him eating and was thrilled with the progress he's made. She talked with the SLP on some things to work on to help lateralization of his tongue (he just doesn't want to do that!) and some other things. Nothing that we weren't working on already, but Rona always has some trick of the trade that works wonders.

I also learned that the most recent orthotic that we have for his left foot, is causing pronation. It's tiping his foot in, like this (the outline is normal placement of a foot):

image

His foot already turns in! He was casted wrong, which makes me not so happy. We lost our favorite orthotist last year. Sadly, who you see makes a difference. I hope we don't have to have him re-casted and that the current SMO can just be fixed.

Moving on...
Seizures
AJ only woke up on his own once this last week. Sigh. We did receive his Keppra level back-it was normal. As expected. Sigh. I've got a call into his neurologist to see if I should wake him or not. He's sleeping the same amount of hours (12 to 13), its just 8 to 8-ish now instead of 6 to 6 or 7 to 7. I think its a combination of the cold he's had all week, growing, and brain activity. Now that we've learned about his functional scoliosis causing him pain and making him tighter, I think that is part of it too. I also need to chat with neurologist about the ERST (see below) and whether sleep deprivation (forcing a nap during the appointment) or anesthesia is a better route. AJ did wake up on his own this morning and I was so excited to see his smiling face when I opened the door and he was standing there. Hooray! I hope it continues...

Vitamins
A few weeks ago I left a pretty excited message for AJ's dietician at the GI Clinic. I had found a "Complete" chewable gummy vitamin and wanted to share with her. The vitamin drops for infants don't have the right balance of what he needs at his age and are missing quite a few things. The regular gummies are missing essentials too. They are indeed, not complete. That word is drilled into my head. So imagine my sheer bliss when I find these Flinestone Gummies and they say COMPLETE! And, AJ takes them like a champ and requests more!

I got a call from his dietician. Turns out, these gummy vitamins are NOT complete. This is clearly a false advertisement and not only will Bayer be hearing from AJ's GI Clinic, but from this frustrated Mama. I had Jeremy take the empty bottle to work so he could give it to his dietician, just because. We decided these are better for him than nothing. But, of course I knew they'd be worried about something. They want to make sure he's getting enough Calcium. I downloaded a handout on the hospital website regarding how much calcium he needs for his age. I'm thankful he's now requesting milk!

iPad
Today was saw AJ sign the word "more" a lot. I mean A LOT. Repeatedly. Its his new way to say "I need to tell you something-I need my ipad." Which is quite brilliant if you ask me. Brill-iant. We're straddling a fine line of patience with this boy. I've been corresponding with the company that created his communication app, almost every day for the past few weeks. We are trying to hammer out some kinks. It is amazing to have an answer from the founder of a company in your inbox two minutes after you sent it.

We are still working out the kinks with having school trained on his iPad. Frankly, I am frustrated. But we are closer than we were before and I am trying to focus on that. In this post, I mentioned the list I was coming up with in regards to what the staff needs to know regarding his iPad. While the iPad is, pretty simple, organizing and knowing what needs to be used on a daily basis for AJ is a bit tricky. I mean, if I gave it to you and said go to iComm, storyboards, reorder moving "J" to "K", and OT with speech, hide playground, add ball and shaker, enter time ring into picture menu, then make sure to access the video...would you know what to do off the bat? Probably not. My list ended up spanning 5 pages and yes, included tables and highlighted section titles.

School
This year, so far, has been a year. I wish I could say its been a breeze. What I am learning? AJ is a curve ball, in every sense of the word. The programming for his school day, which was planned last spring/summer, is just simply not working effectively for our little dude. Meetings are taking place, like gang-busters to remedy and make things better for AJ. We are aiming to strike a balance between AJ's special education needs (SE) and deaf education needs (DHH). Right now, it is lop-sided, with DHH outweighing SE. Anyway, things are changing.

Cochlear ImplantsWe've now learned that there is not enough research to show how sedation may or many not change/alter the results of an ESRT. However, we have results from an "awake" ESRT AJ had last year, so we'd have something to compare it to. Given AJ's history, our CI Clinic has said they'd like to put AJ under anesthesia in the OR for the test. This kid doesn't do anything half way. Oy. We still have not decided whether to do this or not, but I've been obtaining additional opinions and doing some research of my own.

I'm also excited to announce that we've been accepted into a study through the University of British Columbia in Canada. The study is exploring parent experiences of the cochlear implant process for children who have special needs in addition to deafness. As I spoke with the staff at UBC, I had goosebumps. Hearing that someone actually realizes that our process is different. Amazing. Not only do they want to improve the parent experience, but also educate and assist professionals and CI teams to optimize delivery of services. The woman I spoke with, asked for a brief explanation of a few things to see if we qualified. Her response (after my 10 minute answer)? "Whoa. Um, yeah. You definitely qualify." I'm super excited about this and can't wait to share our contribution.

Vision
I've been going back and forth with the vision specialist in our school district. She's had a chance to observe him a few times. Following her observations I asked her for any suggestions or tips she could share to help AJ use is vision more effectively. The beauty is that the iPad acts like its own lightbox! It helps him focus. He still has a bad habit of using his hands to explore things, grab, or even eat without using his eyeballs. Grr! We're working on making him use his vision.

Snow
We've finally had our first few snowfalls. WOW. I think I literally shed a tear the first day I drove AJ in the snow to school. It took me a whole 15 minutes. All of the stress of selling our house and moving went away in those first few drives. I'm anxious for spring though. Aren't you?

"You Do It" Chart

2012-01-15T09:16:00.003-06:00

AJ has fallen in love with these frozen sorbet bars.

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I first found them around Memorial Day last year and thought we'd give them a try. Of course with intentions of increasing his oral awareness, biting, and fine motors skills. Not because they are fun. Heavens no. My brain works in strange ways, people. He didn't understand the concept and didn't want the tube anywhere near his mouth, so I chopped them up into pieces and put them in a bowl. He ate them with a spoon.

Fast forward to two weeks ago when he was eating everything and anything in site and I gave one to him out of sheer desperation. Guess who's eating them all by himself? Tube and all? Yep. I'm so proud of him! And, the fact that they are natural sorbet bars makes me feel less guilty about giving him more than one.

We are working on teaching him how to push the frozen goodness up through the tube. Sometimes he attempts it on his own, or bites the tube itself which pushes the goodness up. Other times, he's quick to just hand it to me. I don't think so, dude. "You Do It" is a very common phrase around here.

And then I stumbled upon this handy chart the other day.

Huh. The picture didn't turn out as clear as it looked on the camera.

Anyhow, I've posted the chart on the kitchen cabinet as to remind us what he can do on his own, and to facilitate helping him learn new independent skills. I laughed when I saw the dog dish and the word "feed" on the chart. Something so simple that I hadn't thought of. He loves to give Rocky treats, so why not practice scooping and pouring by feeding him too? Genius.

We're all about fostering AJ's independence around here. Sometimes, yes, we do things out of habit, in a time crunch, or even subconsciously. But he's proving more and more than he can do more and more so, we're going to do our best to encourage him.

Even if it means he gets to eat 4 sorbet bars at one sitting. Practice, right?

Choices

2012-01-12T11:20:00.004-06:00

There are many times during our journey with AJ where there hasn't been a choice to do something or to not do something.

But then, I think again and really think about how technically, there is a choice in all of things we do with and for AJ. While I would never think of not giving him his seizure medication, there is (technically) a choice to do so. There is a choice in taking him to this doctor or this specialist or even to therapy. I could go on.

The choice for us was made a long time ago. Give AJ absolute everything and anything he needs. Period.

Still, we often come under fire for the choices we make outside of AJ. While it doesn't change our choices or follow through, it often comes as a surprise to us. AJ is always a part of those other choices in some way or another. We try to find a balance between being AJ's parents and being Jeremy and Heidi. Sometimes we succeed. Sometimes fail. We keep trying.

Obtaining my BA has been difficult in recent months. A funny thing happened when I stopped whining about it and sat down and devised a plan to schedule my time better. It worked! I made the choice to earn this degree so I'm going to own it. Figuring out that I'll be graduating 3 months early has also been a huge motivator.

I'm proud of my sweet husband for not only going for but achieving so many of his own goals. I ran across some paperwork yesterday from 6 years ago that had written "obtain my Nurse Practitioner" on it. He's going for it and I'm so very proud of him.

I have sat on the couch and wallowed. Pity-party central. Tears. Fear. Panic. They are paralyzing. I mean, straight up paralyzing if you allow them to consume you. It may not show, but I can be a huge fraidy-cat. Straight up. While certain experiences with AJ have given me thicker skin, sometimes I'm still sensitive. Allowing our son's diagnoses to consume us, any more than what they already do consume, is not a choice we are making. We both need to have something to focus on and enjoy outside of being AJ's parents.

That does not change the fact that we want the best for AJ. This does not mean a fancy house, cars, and all the latest toys. It means planning for his future, as his needs continue to increase. It means having the ability to hire help when we need it, pay for the therapies and equipment that he's going to need. At the age of 5 AJ is already being denied services. We are not going to be able to rely solely on what our state or other resources may provide him in the future. Who knows how long all of these things are going be in existence. AJ will not thrive on settled or skimping by. I refuse to put him in some dumpy home when he's older just because that is what the state will pay for.

Bettering ourselves for the sake of ourselves and our son? That's a smart choice if you ask me.

Silver Lining

2012-01-12T10:46:00.000-06:00

Well, yesterday was interesting.

He has repeated the same pattern that happened last weekend on Tuesday, so I let him sleep until he woke himself and then took him to school. Yesterday, he was in a deep sleep again when I opened his door. I gotta say, I'm missing the "beep, beep, beep...vroom, vroom, vrooms" in the morning. It is so very rare for him to be that deep in sleep at that time in the morning.

For a solid week we have been talking with AJ's school team about the observation by one the district's special education gurus. Which was, of course, scheduled for yesterday. So, I felt it important to wake him. He did great during breakfast and getting dressed, but was a bit "off" in the car. I figured he was just tired. As I drove up to school he looked like he was drifting off to sleep. Ok, so he's really tired. He was wide-eyed when we parked and I dropped him off as usual.

A few minutes after I arrived home the staff called me, describing a seizure. "...annnnnnnd he just fell asleep," she said. Ok, let him sleep. I called the neurologist office and waited for a call back. I drove up to school, honestly, to check on the staff. I knew if he was sleeping, he'd wake up refreshed. Sounds insensitive, doesn't it. Such is the life of a special needs mother-sometimes.

The silver lining lies in these events:
+ Upon arriving at school I popped in to talk to the health room nurse. I could tell by her body language that what happened did not cause the staff to panic.

+AJ actually having the seizure at school helps the staff recognize symptoms.

+ While he was sleeping, two of his aides sat on the floor and navigated AJ's iPad, going through things that a typical school day does not allow time for.
+ I had the opportunity to chat about the seizure in detail with his school team.
+ I had the opportunity to sit on the floor and chat with the special education guru for over an hour, with various members of his school team filtering in and out of our conversation.
+There truly could not have been a better day for the guru to be observing AJ.

While I certainly would not like to repeat yesterdays, I am thankful for the silver lining.

Who Is That?

2012-01-07T21:30:00.000-06:00

With time certainly comes changes. Yikes.

I spent today with my Mom. While the day was indeed productive, it proved to be mostly a girls day. A much needed girls day.

What I didn't need was to see pictures of myself as a 5th grade cheerleader and 8th grader. Double yikes. I had a good laugh and then moved on to photos my mom brought home from her office. A collage of pictures from my senior year of high school.

Who IS that girl? Sure time brings age and the normal,typical changes you experience as you grow and mature.

But there were things I suddenly missed about myself. This fresh face was staring back at me. Sitting on the shore of Lake Michigan ready to take on the world. Full of life, not tragedy. I looked....Like someone else. I look in the mirror and don't see one iota of that girl.

Do I want to be 17 again? God, no. But there are parts of my personality that seem to have somehow died off. I'm much too serious. Most of the time. No really, ask my husband. He'll tell you. I'm constantly on edge. Worrying about whats going to happen next that going to feel like a sabotage attack on my family and our future. Feeling scared and letting my fear completely consume me. I can turn a silly situation into a serious tension-filled situation in seconds. I'm available for parties. Inquire within.

Don't misunderstand me as having a pity party. I certainly was not. I simply recognized some not so great ways of how I've changed. And in that moment I vowed to change.

In Which I Am a Super-User

2012-01-06T10:46:00.001-06:00

I anxiously picked up AJ's iPad from the UPS delivery center the day after Labor Day last year. When we opened it, it was a bit overwhelming. The same thing happened when learning about his cochlear implants and my iPod...in different degrees of course. Technology has a way of making people nervous.

We spent the rest of September choosing a communication program/app that would work for him. From October into now we've been building said program. Changes to the program are constant and will never stop.

In November and December we saw AJ really take to the iPad. He peeks around you to look at the screen to see what's on his agenda next and signs for it. We've been working with him on using our pointer finger to scroll, swipe, and point on the screen. We've added pictures to the picture glossary. We've built storyboards (daily routines) and adjusted them A LOT. AJ has been able to predict his morning routine for long time now, but its so cool to see him "ask" for something.

A few weeks ago I walked into another room after getting him dressed for school and suddenly heard "swing. swing. swing.swing.swing. swing.swing.swing" and then footsteps. he had picked up the iPad from his bed, tapped it a million times, obviously, on the swing, and then brought it to me to say, "Mom, I want to swing." That was the moment that solidified that my child understood the power of his iPad. That he understood his held power in communicating.

School has given dozens of examples as to how he's using the iPad. So much so it is now being written into his Individualized Education Plan (IEP). In addition to that, a brilliant plan has been conceived to train AJ's team on the iPad. My initial thoughts regarding the staff was to have each of them take it home and explore. The current plan is so brilliant it makes my heart all a-flutter and stuff.

Our school district's "iPad Guru" is coming to train the staff on AJ's ipad. While I won't get into too many specifics as to how it is going to work, let me say I'm thrilled to know everyone will be trained congruently.

Enter the "users". I've said before that AJ has a large school team. 11 people. This makes establishing who needs to know what important. We'll be identifying the "super-users" and the "users". In order to do this, we need to figure out who needs to know x,y,z, and who needs to know a,b,c. For example, does his gym teacher really need to know how to change a storyboard? Probably not. Do his teachers and aides? Absolutely.

I've earned the name as the only current "super-user". Therefore, I am putting together a list of what the staff needs to know. From there I'll break it into the two different user categories. Rest assure I am not the only person creating a list. A few of us are and will "cahoots" (get together and talk about it) in the near future. In the meantime, you'll be happy to know that my list has started with "How to turn the iPad on and off, including use of the swipe "turn off feature". Things you don't think about until you manually go through and think, "How.do.I.do.this...In.Steps."

I didn't know what I was doing until I sat and played around with the iPad. Its all through trial and error.
This technology is simply amazing and I'm so glad we were able to supply our little man with a way to speak his mind. You have no idea. I chat with Apple at least twice a week and have been in consistent contact with the company that created his communication app. The support is amazing.

So, its "Super-User" Mom to the rescue, or whatever!

Wednesday's Wisdom

2012-01-04T19:02:00.002-06:00

Opportunities to find deeper powers within ourselves
come when life seems most challenging.
-Joseph Campbell

First Day Back

2012-01-04T18:51:00.000-06:00

(Tuesday)

Today was AJ’s first day back at school following Christmas break. I woke up victorious, having gotten a full night’s sleep for the first time in weeks. AJ chose today as the first day to sleep in the last two weeks. Each morning we wake to “beep, beep, beep, doo doo doo, doo, spinny thing, vroom vroom”…you get the idea. Because AJ needs his seizure medication around the same time each morning, there is no more true sleeping in for this family. Unless… Jer and I are in Hawaii. There was lots of sleeping in there. Sigh.

Anywho, I had to wake him, which was rather uneventful. He had a few seizures during breakfast and maybe two more after breakfast-or what I’d call his attempt to be a bird. His platform swing…wait. Did I tell you we put it up? And he loves it? He does. The bolt came out of the joist on New Year’s Eve. We’ve had a bit of a sad boy, but then we pull out his ginormous new body ball (yoga ball) and he’s giggly again. The swing should be up by this evening.

Moving forward again…usually we swing after getting dressed, as he knows that’s the next thing in our routine. Sadly I told him no we couldn’t swing and signed broke while I said it was broken. When saying, “Do you want you ball?” I received a big smile and manic signing of please occurred. I love that little guy.

So roll on the ball we did until it was time to go. He stopped in the middle of the driveway and starred at me whining a bit. Hm. Odd. Lightbulb! He’s got to go potty. Sure enough, that’s what it was. This is what makes things so frustrating at times as he knows what in blue blazes is going on and needs a way to tell us. I know, you say whip out the iPad. Well, we’re learning quickly that there is no perfect system (other than saying aloud what you need, honestly) to this. I knew what he needed, so we went.

We arrived at school and he was tired, but excited to be there. I spent my morning listening to the pleasant hum of the humidifier while I did homework, sent out 435 emails and making 1,765 phone calls. It was one of those days.

When I picked him up from school he was sleeping, and slept a good 2.5 hours. He woke up happy and bubbly. Happy and bubbly until 11:30pm. We swung A LOT and he ate A LOT. All was normal.

I often find myself going over days like this over and over in my head to try and see if there was something I could have done different. I decided that if I find him sleeping that hard again, I’ll allow him to sleep until the latest time possible and take him in to school late. We’ll play it by ear. Sleep is very important to kids with epilepsy-it certainly is for our little dude.

Goals for 2012

2012-01-02T21:39:00.003-06:00

I've never been a fan of the word resolution. Whenever I hear the word, I think of Nicolas Cage in the movie National Treasure 2 repeating the word "resolute". I know. I'm weird.

By definition the word resolution means the act of answering; solving.

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Um, that doesn't sound very new beginning-ish to me. Does it to you? Life is not a problem to solve. A puzzle? Sure. But the true definition of the words just doesn't seem to match up with the idea we all have with the New Year.

So, I set goals instead of resolutions. Goals for the new year. I find this time of year very fresh and new, so why not clear my mind and make some fantastic goals?

Here are a few of my goals for 2012 (in no particular order):

+ Read more often.

+Watch some of the movies people always gasp! at me for and say "You've never seen that?!"

+Attend church regularly and work on my relationship with the Big Man Upstairs

+Write at least 10 letters to family and friends who least expect it. That means setting aside time and using a piece of stationary, a pen, and kind words.

+Continue with yoga and practice yoga at home at least 3 times a week.

+Submit my book for publishing.

+Complete the next year in my 2 1/2 year journey to my BA degree. (If you haven't found it yet, a few weeks ago I put a fun little ticker on the very bottom of the blog to keep myself motivated-or something)

+Thoroughly prepare for AJ's IEP in May to make sure what happened this year-does not happen next year.

+Battle the fear that often paralyzes me.

+Bungee jump in Italy.

Ok, not the last one. Were you still reading? Te-He. There are more, but I won't bore you. Those will stay tucked in my trusty notebook. Er, one of my 9,456 notebooks. Am I the only person who never finds the same one to write in?!

A Very Happy New Year!

Catch Up

2012-01-01T22:02:00.002-06:00

Two months without posts leaves an awful lot to catch up on. Doesn't it? Oh wait, you're the reader I'm the blogger. Sigh.

In speed fashion, allow me to catch up:
October:
AJ was Harry Potter for Halloween.
CI Appointment tweaks his low frequencies. Its like magic and suddenly he's keeping his coils on. Research starts on how we can accurately achieve an audiogram for AJ.
AJ has another round of botox in his left hamstring and calf. His physical medicine doctor suggests a SMO for his left foot. The orthotic company was able to use the same cast used for his UCBs (received in September) for the SMO.
State insurance officially denied our appeal for physical and speech therapy.
We joined the local YMCA in effort to give AJ pool therapy more regularly.
November:
We discontinue therapy after school and make the decision to make clinic visits during his break periods.
State insurance denies another authorization request for physical therapy even though time has gone by in which we were hoping they'd forget about him and grant us visits. No cigar.
We discontinue therapy after school and make the decision to make clinic visits during his break periods.
Breaking Dawn Part 1 premiered and I was (sadly) a bit disappointed.
AJ ROCKS his iPad.
Despite my best efforts, Thanksgiving was stressful.
AJ surprised us and attempted raw carrots with success!
December:
We do live in Wisconsin right? Where is the snow?
School for this Mama becomes increasingly difficult and she wonders what she was thinking trying to do this right now. Less than two years to go....Less than two years to go....
We received AJ's new SMO for his left foot. We finally found shoes that will work with both the SMO and the UCB.
AJ ROCKS his iPad even more and begins to seek it out to make requests.
AJ's first-ever Christmas, er Holiday Program, was a complete disaster. I'm biting my tongue very hard not to go into specifics.
We took AJ to Christmas Eve service at church and he did absolutely wonderful.
Our Christmas was nice and laid back.
Jeremy applied for his Masters program.
On New Years the hubby and I stayed in, watched a movie, and went to bed early. Yep. Total Party Animals.

Let's pretend today is December 31st, ok? One of my goals for the new year is to blog every day. I know. A tall order. Let's think positive! Also, I've changed my blog settings to allow commenting without signing in, so please feel free to leave us a message!

PECS Book

2011-11-06T05:39:00.000-06:00

I've mentioned AJ's PECS before. PECS stands for Picture Exchange Communication System. Taken from this website, here is the easiest way to explain PECS:

PECS begins by teaching an individual to give a picture of a desired item to a “communicative partner", who immediately honors the exchange as a request.

At the beginning of the 2010 school year (his 2nd year in preschool) his school SLP and I decided it was time for PECS. She made him a small PECS book from a small binder (think day planner size). After asking if she had another binder the same size, I made one for him to use at home. Since I am in the middle of making him his 2nd (BIGGER) PECS book, I figured I should get these photos on here ASAP! I was thrilled to finally find the pictures on our old laptop to share with all of you!

Supplies Needed:
Small Binder
Velcro "Rough" & "Soft"
Pendaflex Poly Clear "EasyView" File Folders
Cardstock or Construction Paper

Computer/Word Document

Laminator/Paper Cutter/Hole Punch

First, eyeball how long your velcro strips will be and cut to size. Choose either the rough OR soft but make sure to cut the same "texture" for mounting on the top of the binder and each page.

I chose the "rough".

I used the label sheet for the folders to decide on the right size pages.

Cut your folders in half first.

Then cut to desired size.

Make sure they fit, then hole punch. Er, it is a bit tricky to line it up.

I made marks with a pen.

(Make sure your binder surface is clean!)

Mount your velcro on the front.

And on each page.

I created a table in MS Word, making sure each row/column was 2x2 inches.

I inserted pictures of AJ's things and also used general images from online.

I cut red pieces of cardstock 2.25x2.25 inches to back the photos. Red is the color AJ is drawn to.

I ran the pictures through my laminator

*NOT PICTURED*

I then cut them, cut squares of "soft" velcro and placed

a square on the back of each picture.

Here, I've put them into categories.

When we first started, they were all mixed together.

And finally, here are some photos of my little man

COMMUNICATING!

2011 ToysR'Us Differently Abled Toy Guide

2011-11-02T09:39:00.001-05:00

It's Here!

This year's ambassador for the guide is Eva Longoria. While I must admit, walking into ToysR'Us sends me into toy overload, I LOVE LOVE LOVE that they put this guide together. Every.year. This year's guide seems much larger than years past. Way to go TRU!

Go HERE for the guide's home page, where you can read about it and download a digital copy. If you choose not to download a copy, you can find the catalog in the stores. It is usually displayed along with the weekly flyer. If they are out, try asking for one at the customer service desk.

**Check out the little dudes on Page 20, 22, 28, and 31!

Tuesday's Happy 10

2011-10-25T16:19:00.001-05:00

Things that have made me happy this week:

1. AJ using his PECS book consistently at home.

2. Finding the perfect gift box for the perfect gift for a friend's birthday.

3. The smell of homemade applesauce cooking away in my crockpot.

4. Finally getting somewhere with AJ's sensory/play room in the basement.

5. The release of Breaking Dawn: Part 1 being released in less than a month! I am so excited! This Mom and I already have our tickets and plan to devote our day to ~~Edward~~ the movie. I'm not into much, but its so nice to have a little escape from the every day. After all, isn't that why we go to the movies? Sparkly vampires make everything better.

6. AJ spontaneously sitting on his floor and playing with his firetruck and monster truck. Hooray!

7. The new series Pan Am. LOVE. I love that time in history and its a show I know Gram would have loved too. If I was going to a Halloween party I'd totally dress up as a stewardess.

8. Shredding of old documents. I've spent the last few days using a $20 piece of therapy called the shredder. Like writing, it has seriously helped heal some old wounds. Along the same lines, I finally tossed out a binder we were given when AJ's hearing loss was diagnosed. A usable binder, sure. But it was linked to something emotional. It looked phenomenal in the bottom of a black trash bag. I've wondered why I've been hanging on to every document for AJ. Not anymore.

9. This song:

*Yes, this is on the Breaking Dawn soundtrack. Don't be so surprised!

10. Playing some ridiculous "guess the song" app with my hubby when we go to bed at night. Laughing at each other is so fun.

In Which Things Are A Total Mess

2011-10-23T09:29:00.000-05:00

After AJ's ER visit last Sunday, I decided to keep him home Monday and Tuesday. Monday he was full of energy and helped me make applesauce. Of course, I keep him home to rest and he's restless. On Tuesday, I woke up with this feeling in my gut to keep him home again. My gut was right, we spent the day alternating between his bed and his net swing outside. He was tired, lethargic, and definitely not himself.

Wednesday morning brought tears when I put on his implants in the morning, which was odd. By 10:30am school called me to come pick him up. He had cried for the last two hours and just would not calm. Of course when I picked him up and took him home he was happy go lucky. But still, not quite himself. He had a huge lunch and then we headed to the pediatrician's office. I had made an appointment on my way to school to pick him up.

The ped visit was a waste of time and gas, as nothing presented itself. I have been in "CI mode" regarding his behavior that I was on the path of an ear infection or perhaps just a virus that might have come back to bite him twice. No such luck. Although he was pretty cute giving himself the exam. He took her stethoscope and placed it on his own chest and put the otoscope in his ears. Other than being reminded of the discomfort that comes with his constipation nothing else presented.

Thursday, we tried school again and luckily he had a pretty good day. That evening was parent/teacher conference. His conference went well and I always wonder what it would be like to talk to one teacher. Because we had 8 people to talk to. I much prefer these short meetings to IEPs, since IEP meeting (at least ours) are always loooooong. What we took away from the conference is that AJ is doing really well despite all his bumps in the road. What is interesting is the comments we hear from those that have seen him grow over the last 3 years and see the changes he's made during his school day.

We had a chance to explain that AJ has grown 4 1/2 inches in a very short period of time. We met his new school OT. We learned he's not only doing the Ling 6 perrrrfectly, he's doing it for 3 different people in 3 different environments, with 3 different styles. This thrilled us and frustrated us at the same time. We are keeping the length of AJ's school day the same, although we are toying with the possibility of increasing one day a little. His current schedule leaves him very, very tired at the end of the week, and sometimes he's worn out by Thursday already. I could go on, but let's just say given all he's asked to do, he's handling it quite well.

Friday morning went well and AJ was happy to go to school. I pulled him early to take him for a consult with his PT. As I suspected, he is a total mess. she didn't say it, but I know her well enough to know that he's in he roughest shape she's seen him in a long time. He's still growing and has NO IDEA where his body is. I've learned that trying to explain growing and how it messes up your sensory system for a child with cerebral palsy AND sensory intergration disfunction (SID) is like beating my head against a wall. So I'm just going to say he has NO IDEA where his body is. We came up with a plan and I spent the next 45 minutes swinging him.

The plan consists of a combination of pool therapy, swinging/vestibular input, vibro-tactile imput, TENS (e-stim unit), and botox. He's turning his foot leg in from his hip AND his ankle/foot itself. New territory. His hip relaxed during swinging, but his foot did not, until about 10 minutes in. This plan also requires me to adjust my perspective and remember that AJ is not just dealing with one thing. Its not just his CIs. When he had that seizure last weekend I was totally in seizure mode, not anything else. So when he threw up, my brain didn't even think about him having a stomach bug. Because I was in seizure mode. It's so much at one time, I'm finding it hard to focus. But we're going to keep trying.

Yesterday was a disaster. Early in the afternoon AJ crashed and spent the rest of the day in pain, yelling at us. No matter what we did, it was wrong. Swinging wasn't enough, the TENS unit wasn't enough. He didn't even enjoy the inpromptu bath we gave him. He got to a point where he just kept screaming and screaming and screaming and we didn't know what to do. It was him telling us he was overstimulated and needed quiet and no one touching him. He didn't even want his nightly body massage. I put him in bed and felt his little body relax, a teeny tiny bit. I left the door open and soon found a little man standing next to my bed. He had seen me carry in a bowl of snacks. We sat and snacked on my bed for a while, with smiles and giggles and all. He then took my hand and led me to his bed, where he politely asked me to go to bed by signing please.

Heart. Melt. Tears.

I am so worried about him I can't breath. Of course yesterday morning brought on the worry of seizures. He was fine. I feel so helpless. I worry something bad is going to happen and I'm not going to be able to stop it. I had thought by now, in my oh-so-altered-life of parenting that we would have been quote unquote "done". It did not work out that way. This is never going to stop, is it? I think we are both coming to terms with this, in different ways. It has brought a lot of stress and frustration, and change. A change in mindset and how we look at the future. While we were swing AJ in the backyard last night, I mentioned that the amount of stress we were feeling is the reason so many couples with special needs children end up divorced. While we consider ourselves strong people, sometimes...it is just too much. For both of us. Don't be alarmed that I used that word, I'm simply stating a fact. The stress is completely different from raising a typical child. Yes, parenthood is stressful, but this is a different type of stress. It.just.is.

Its Sunday morning and AJ's awake. Giggling in his bed. And we are both hoping that today will be a better day, in some way.

Thanking My Lucky Stars

2011-10-17T06:04:00.001-05:00

AJ made another trip to the ER yesterday. I'm not really sure what the combination was at any given time, but it was a long seizure together with gastroenteritis (stomach bug). The two things that made me freak? I've never seen him vomit with a seizure before and on the first attempt to using his Diastat pen, it was broken. He's fine. I know, how can I just say he's fine?

Well, first we had an amazing team at the ER. Not that we have bad ones, because we never have. But, this was a good crew.

Second, a Flight for Life case came rolling in while we were there.

And I just can't shake these thoughts out of my mind.

Talk about perspective.

AJ had rolled over to take an impromptu nap, in a foreign place, so I knew he was tired. I covered him up him up and chatted with my Mom. As we sat there, someone whisked in front of our room, pulled the curtain across the glass doors as far as it would go and closed our glass doors entirely. It didn't take long for me to spot the Flight for Life jumpsuits and the yellow stretcher. There was a small child on it, with an ambu bag and chest compressions being done as they were rolling by.

In that moment, a sense of guilt rolled over me. How dare I be so freaked out, when my child is sleeping so peacefully and this child is in the next room with 50 people trying to save his/her life. Yes, I know I had every right to be freaking out internally, but that type of thing really puts you in perspective.

Let me say that the staff was extremely professional and the scene was nothing like the chaos shown on TV. They did a great job of keeping everyone calm and "in the dark" if you will.

A few hours later I made my way to the restroom (thinking I really should not know exactly where the restroom is in the ER) and of course, my curiousity was in full force. There was one pair of shoes in that room, sticking out from the curtain. Hm. My mind immediately went to the worst case scenario.

The staff kept coming in apologizing profusely; I didn't care that things were taking longer. I bit my tongue from asking about the room next store because I knew they wouldn't tell me.

As we left, the room was completely empty, lights off. The room had been turned over for another use; ready and waiting.

Did the child survive? Where was he or she? Was the child in surgery? I've been thinking about this child, his or her family all night. How unfair life often seems to Jeremy and I in this journey of special needs parenting. How often we become frustrated that no one "gets it". All of that disappeared in an instant and I felt incredibly blessed and guilty at the same time that my child was sleeping during his ER visit and was back here at home in his bed. He was fine.

I just read a post on another blog about a little boy who passed in the middle of the night from a seizure. He was 4. FOUR. This seizure stuff is serious stuff people. And yes, it scares the crap out of me. The timing of this post was not the greatest, but who am I to complain?

I'm still thinking about that Flight for Life child, and saying prayers that he or she is well, wherever they might be, and thanking my lucky stars that my child is cooing in his bed so early in the morning.

Even I Forget Sometimes

2011-10-07T08:15:00.002-05:00

I posted that gigundo update and totally forgot to mention his epilepsy. Oops. I've been finding it hard to focus on just one thing with Mr. AJ. Probably because he's got so much going on.

EpilepsyThe day after our fun trip to the ER in August was followed by a 24-hour EEG here at home. He was such a trooper. Seriously, I'd rather have these people come and do one again than do it in the clinic. He was extremely tolerant with having the leads put on ...the only part he didn't like was the air compressor. Yeah. After they use the goop to stick the lead on, they cover it with a small piece of gauze dipped in this nasty glue that smells like a cross between gasoline and acetone, and then use an air compressor to super-fast-dry the glue. Those suckers weren't going anywhere.

We received the results of his EEG about 3 weeks later. AJ has normal activity during the day and "some" abnormal activity during drowsiness and sleeping. Meaning, he's still having some seizures when he's drowsy and sleeping. While I let out a huge "whew" that he is ok during the day, it still bothers me that he's having any seizures period. How could it not? Having activity during drowsiness and sleeping is very common for those with epilepsy. His neurologist's nurse gave me the example of a child who goes for a sleepover. It is very common for a child to have activity if they are not on their regular sleep pattern. Sleep is important for children with epilepsy. Great. Another reason for my to worry and fret over AJ's sleep. Not only does he need it in relation to just plain being a kid, but also for rest from what his CP does to his body, now he needs it for his brain to rest.

Fast forward to yesterday and AJ has his first seizure at school. It lasted about a minute or so and he was staring off while his arms went limp. Fun stuff. He was agitated after so they let him lay in his favorite little quiet room and after 3 minutes, he popped up a whole new kid. He had a great lunch and afternoon at school.

Sigh. I jump every time my phone rings while he's at school, thinking its school calling me with something wrong. Guess I'm still adjusting. Crazy. The nurse called and told me about the seizure and that was all. As part of our seizure plan, this was normal protocol. But I still wanted to run into that burning building, all hollywood slow-mo and save my baby from that burning building of seizures. But it was over and done, with nothing to do. I don't do well with doing nothing.

It is a very common misconception that just because your child is on seizure medication they are fine. More seizures? Up the medicine. I have learned, through a very patient neurologist and his amazing nurse, that this is not always the case. It can't be perfect. While I don't want it perfect, of course I would rather my child not have seizures. Duuhhh. But, I'm grateful he did have his first seizures one year ago (already?!) and at least now we know and he's on medication to regulate things. So, yeah. Around the circle we go.

Fall Update

2011-10-04T12:59:00.000-05:00

School
AJ's been in school a month already and is doing fairly well. His day is very, very busy bouncing from different staff who are working with him. Through collaboration between his SLP/TOD/myself, they created a daily log sheet that usually comes home with him daily. Since there are at least 11 different people working with him on a daily basis, including three different aides, information is much easier to relay via the form. It also gives me a chance to see how he did i.e. auditory therapy or circle time, if they need more cleaning wipes for his glasses or extra clothes. The back of the form lists his strengths, things he needs to work on and had difficulty with, msgs from his teacher, and reminders. Genius.

Here is a list of the professionals AJ works with @ school:
Teacher of the Deaf
Regular Mainstream Kindergarten Teacher
Special Education Teacher
Aide #1
Aide #2
Aide #3
Speech Therapist
Auditory Training
Physical Therapist
Occupational Therapist
Specially-Designed Physical Education Teacher

He is currently attending school for about 4.5 hours per day. We'll be meeting soon with the school staff to see whether we should increase his day. Because this is his first year going "full days" (meaning not a combination of short & long days) the decision was made to ease him into the routine. I am astounded at how well he is doing working with so many people throughout his day. He's transitioning easier from one activity to another and having less meltdowns. Especially now that we've been unilateral with his CIs.

CIs
Unilateral? Yes. Well isn't he bilateral? Yes. AJ's been struggling wearing both his implants for quite a while. Since last Spring if we really want to get into the nitty gritty. We've been unable to get an audiogram with his left implant (which is 1 yr 3 months old). Yes, still. And it is by no fault of his audiologist. AJ simply does not respond like "typical" CI children. Yep, I'm labeling. More on that later.

Way too much flipping of the coils, even when his bandana is on. Something has got to be sounding wonky to him. But how do we change the maps so they don't sound wonky, when he can't tell us, much less respond to the stupid tones in the booth. Can you tell I am super frustrated? I've contacted another audiologist (since AJ's is out on maternity leave) and am hoping to get a fresh pair of eyes, ears, and expertise on the situation.

Last week I sent him to school with his left implant only. He had the best day he's had of this school year so far. No flipping. We've spent the last few days with the left on, then switching to the right. Something is giving him bilateral summation when he's wearing them together. I'll be putting both his implants on tomorrow to see how he reacts now that he's had each on individually. I'm determined to figure this out. So I guess he flipping was for a reason. It's AJ way of telling us it sounds wrong and he doesn't like it.

PT
Our appeal with AJ's state insurance was denied. End of the road for that approach. Our new insurance denied right off the bat, so we're fighting that, but I'm not holding my breath. I've given them every thing needed to prove he needs therapy, a hum, that it is medically necessary. They still deny.

AJ has had one session of pool therapy since the end of August. Due to schedules, 515pm is the only time he can be fit in, and that is with his therapist staying after hours (He's awesome). 515pm doesn't work for AJ's schedule. The only reason we got in the one session was because of other patients cancelling, I was able to bring him in sooner. Even so, AJ decided to single-handedly close the warm water therapy pool that day and we spent a measly 10 minutes in the big pool before he was turning blue and shivering. The kid just doesn't do well in "cold" water. There was a 5 degree difference between the pools that day and he was freezing. Crazy.

So we're brainstorming. He's regressed-big time. He's been wearing his TENS unit EVERY night for the last week or so. He's growing, with his muscles so tight he can't put his left heel on the ground (unless the TENS is on). There are a number of gyms here that have warm water pools, so we are looking into that. Last week we cancelled therapy due to the virus he's been battling for almost 2 weeks now. Which means 1) he didn't get his therapy and 2) we weren't able to get in the pool with AJ and his therapist to learn the specific things they want us to do in the pool with him. There need to be more hours in the day.

Last week we picked up his new UCB orthotics and his new night splint for his left foot. Thank goodness we finally got it. I need to have a major pow-wow with his PT as his mobility is really compromised at the moment. AJ stands in front of his carseat in the car and just stares because his body isn't allowing him to climb up. I facilitate a smidge to get him going, which he does, but it is so hard for him. The other day he slept 145pm to 6 and then 11 to 7am. Can we say growing?

OT
I was not informed until last week that AJ has not been having OT at school. This due to the fact that a new OT had not been hired to replace his awesome OT from last year. There have been lots of changes for AJ's school and district this year. The decision was made over summer to not have private clinic OT during the school year, so I'm a bit upset I didn't know there was no OT in place. Yesterday I learned someone has been hired and will be starting soon. Whew! I know, I know, things can't be perfect. But when you have child with special needs, part of you doesn't want to allow these important people in your child's life to do things like take a vacation, or (gasp!) leave.

iPad2
Speaking of OT, using a pointer finger, isolating that index finger from the rest, is a fine motor skill that is worked on by OT's. So maybe that is part of why I was upset. We got AJ's iPad2 a few days after school began. It.is.the.coolest! I've loaded quite a few app's for him already and will do another post all about what we are using for him right now.

Yesterday I met with AJ's SLP and TOD. I purchased a communicate app called Proloquo2Go, which we discussed and played around with. A few things came up in conversation, which prompted me to email the company yesterday. Unfortunately, I did not receive the answer I was hoping for. The program comes with several choices for voices. They ALL sound like a synthesizer. I'm totally serious. It boggles my mind that there are so many other apps/etc that we use for him that have real sounds recorded and even real voices! So why, a program of sheer sophistication does not have this, boggles my mind. We were hoping for a "record a voice" option. They are not rolling out this "product" until later this year at the earliest.

Why is this such a big deal? A few reasons. AJ is a cochlear implant user. This type of sound, computer-generated, is one of the hardest auditory fields for him to hear. Now, before you get your undies in a bundle and tell me that CI children don't have issues hearing electronics, let me say this. These voices are REALLY BAD. I mean, seriously. We all had trouble understanding them. Words don't sound as they should. The little boy voice that they offer is Kenny-but it sounds like an underwater smushing of sounds that comes out like a blurry "Penny" when he says, "Hello, I'm Kenny...." Not cool.

In addition, it is very important to all of us that AJ's voice really sound like a little boy's voice. Because he's a little boy. And if this is going to be his voice, then it should sound right. Not like a smushed or blurry anything. Lately, he's been making some fantastic new sounds, some of them sound like what for normal children are early versions of words. Like when a child comes up with a name for something and its totally not the correct name. Different tones. It makes me smile, and I imagine what he's trying to tell me. It is usually when he's excited, but it thrills me to hear something different than a whine or shreek. You have no idea.

We've decided, for right now, to go with a different communication app which allows voice recording. This program is also a bit simpler and will make his initial choices easier. We can build from there. I am also working on creating a set of new PECS books for AJ. His current books are too small and there is no room in the binder to add more pages! We are also going to begin categorizing his pictures i.e. food & drink, toys, activities, etc. I'll be making two books, one for home and one for use at school, so we are consistent.

How does AJ like the iPad? Eh, he likes it. Somewhat. He knows what he has to do with a certain light show/firework type app to make the lights move. He's got the swiping down. Now we need to work on the pointing. There is a "read me a book" app that he seems to pay attention to, which requires you to point on the arrow to turn the page. This has been helping him learn the difference between swiping and pointing. He's got the capability of using that index finger so we're going to use it!

Speech/Feeding
This appeal to our state insurance was also denied. Fortunately our primary approved! We have an appointment today and I am anxious to get his clinic SLP's feedback. I think he's also regressed in this area. And I'm a bit concerned about his drinking. So much so I thought maybe he had an ear infection and took him to the doctor last week. (He didn't). Maybe he's playing me for fool just because he doesn't want to drink anything except his new favorite juice/water mixture. I have noticed him having a hard time swallowing/choking on his seizure medicine and sometimes with gulps of liquid. At his last swallow study it was mentioned that part of his anatomy may be too large and may block/make swallowing difficult. Needless to say, its been on my mind lately and I'm in the middle of scheduling another swallow study.

He hasn't had too much luck with hamburgers/hot dogs with buns. Not enough feedback. So, we toast the buns, and we still toast his bread, to give him some feedback. The kid still loves to eat. No worries there.

GI
Our last GI appointment went extremely well. AJ weighs 27lbs 6 oz. He grew over 4 inches in a year. So yeah, he's growing up! Just not out. The GI was ok with his status and we don't have to go back for a year. We also discussed AJ's issues with constipation. It was decided he had chronic constipation, which was causing the urine accidents he kept having. All that stool was pushing on his bladder. Lovely. We were given a script for Senna and told to use this in conjunction with daily Miralax to keep him regular. We are still giving him the Kid Essentials-but he doesn't drink it. Sigh. So we're going to start mixing whole milk with the KE and see if he'll drink it that way. We'll keep trying.

Hippotherapy
I am so happy for Fall, as it is my favorite season. But I am so sad that means no more hippotherapy for AJ.
He absolutely LOVED IT and most definitely benefited from it. We are definitely signing him up for it again next Spring. There is something truly magical about horses.

Hopeful
AJ's little body is going through so much right now. His sleep patterns are NOT normal and its rare he sleeps through the night. Which is a huge change for us. He's tired from being sick, tired from growing, tired from battling his overall tightness. And yet he keeps on moving. He's regressed, A LOT, which worries me. Yet he smiles..most of the time. I'm hopeful that his body will give him a break sooner than later and that we'll get everything figured out with therapies. etc.
.

What Saves Me

2011-09-21T19:49:00.000-05:00

I've written before about my sweet boy's amazing morning smile. I've been trying to capture a picture of his uber early morning cuteness and well, it shouldn't surprise you that he turns into Mr. Growly Face when he sees my phone in my hand (does anyone use their camera anymore?).

It is usually mid-afternoon when my patience begins to run thin. The removal of his left coil has occurred 8,438 times. He's tired, I'm tired. We're a mess. We somehow make it to and through dinner. We move on to bathtime, which always brings a huge grin and rapid signing of the word "bath". Bedtime follows, with the hugging of the greatest.pillow.ever and the tossing of his lavender-scented stuffed labrador out of his bed.

Bedtime brings much needed rest to my little man and moments of peace for me. It is the only time of day when I am too tired to think. My mind shuts off, for the most part, and I do my best to stay awake until a non-ridiculously early time for bed. Some nights I sleep well, some nights not so well. I never know what the night will look like. Gone are the ~~days~~, er nights of sleeping through the night. And yes, I have slept through the night since I became a mother. Night-time is my time. Whether I'm out with the hubs at a movie, with a friend, doing homework, laying on the chaise with the laptop, or sleeping, its my time.

When morning arrives, I open AJ's door and find this smiley, happy little boy. Its like Christmas every morning. And I sure do love my present. He is sooooo excited to see me! If he could talk I'd imagine he'd say things like "Mommmmmmmmmmy!" or I don't know, something else in a really excited voice. It is by far, my favorite part of the day. It rejuvenates my soul to start the day and get my little man up and at 'em. I forget about yesterday's lack of patience. I don't think about therapies, or splints, or spasticity, or communication modes, or calories. I think about nothing and enjoy my son's amazing smile.

We recently took a weekend trip to a cottage up north. While I intend to write a whole blog post about that trip, a special moment occurred the last morning at the lake. We shared a room with AJ, which had a full bed and twin bed. We heard him get up and did the whole "pretend we're sleeping gig". That lasted all of one minute, when I had to pop up and peek at him. He saw me and crawled off his bed. I was sure he'd walk to the door. Instead, he wandered to the side of our bed and climbed up and over his Daddy. He cuddled with us. For us few minutes. And it was amazing. This was the child who took years to warm up to just our bedroom, much less our bed. He has never cuddled, in bed. Ever. It was a sweet, sweet moment for both of us. Another gift we've been waiting a long time for.

So, while I'm a little sad I wasn't able to get a picture of his morning routine of cuteness, part of me honestly doesn't feel like sharing it. It is something that happens between my little man and I every morning. So many mornings I woke up to an empty crib, filled with heartache. And no, I don't think about those days anymore.

But I am so blessed to see his amazing morning smile. Every day.

Those Eyes

2011-09-14T20:10:00.003-05:00

This past weekend I had the awesome opportunity to hold babies. Yes, little peoples. With gorgeous big eye balls, silly smiles, and cute little dimples galore.

Four days later, my heart is aching. I'm sure it has something to do with this video that someone posted a few days ago. Anything with adoption pulls at my heartstrings, but this one really got to me.

One of the hardest things I experienced with AJ's adoption was visiting the orphange. All of these big eyeballs and smiling faces excitedly shouting, "Hola! Hola!" as we walked in the back door. When the door opened to the front of the orphange, out to the courtyard (surrounded by a high brick wall and barbed wire) AKA the playground, older children bombarded us with "Hola! Hola! Hola!". The look in their eyes was something I had never, ever experienced. "Are you going to be my Mom?" My own mom wanted to load them all in a shopping cart and jump on the plane. I was right there with her.

Knowing that my son would not be alive today if our adoption case had gone a month or so longer does not cross my mind often. Simply because it was not his reality. But it does make me grieve for his brother.

At some point in the last few years I wrote a post about AJ's biological brother. Jose was brought to the same orphanage when he was 6 months old. Their birthmother brought him in when she could no longer feed him. This, despite the fact adoptions ceased in Guatemala six months earlier. I haven't thought about Jose in quite a while, again, because he wasn't our reality. At the time we were told about him, it felt like a cruel joke. Knowing adoptions were closed and that he was literally "stuck" with no place to go. But looking back, knowing he was never a possibility made it somewhat easier to draw that line. To unattach ourselves from the possibility that was...impossible.

A few weeks ago one of our neighbor's son was outside. I turned around and saw the son and his little friend peaking over the fence at me. "Hola!" they shouted, as their big brown eyeballs stared back at me. I had a strange flash of what could have been...AJ and Jose together. I have never had this thought before. Honestly. But the sudden presence of Jose in my mind completely caught me off guard. He's been on my mind since. I have no idea where he is. I doubt the orphanage is still open, since the owner was arrested on bogus charges. If he is alive, I hope that he is well cared for. If he is no longer with us, I hope that he has found peace and love in God's arms. It kills me to know we could have given him a life of love and a life with his brother. Wait-no we couldn't have.

My heart aches for another child. No decision seems absolutely correct. None are easy. Which makes it all the more troubling. Holding babies fills my heart with so much warmth. Don't misunderstand me to be some 16 year old who things that having a baby is all fun and games. Y'all should know me better than that. But the yearning keeps growing stronger and I don't know where to go with it.

My mother-in-law once told me that there is never a perfect time to have a child. You are never totally ready. It is true that some people wait until after school, until after their career has reached a certain level, until they have enough money, or a big enough house. We weren't one of these people when we set out to become parents. It may come as no surprise that many have discouraged us from having more children due to AJ and all of his whoo-ha. Discouraged us from pursuing careers and countless other ambitions. I haven't known Jeremy and I to take the easy route anywhere. While we've wished for the easy route, it still hasn't come. I think we've begun to accept that this is our reality. Why should AJ's disabilities discourage us from having another child? I mean, besides the instant "gasp!" that enters your mind when you think of it, look past that. It wouldn't be so bad peeps.

It took me a few years to understand what "Oh gosh, and he's your first," meant. I know understand it. Completely. We don't know any different.

As I was driving the other day, I decided on a girl's middle name. Which is further than we've ever gotten in the world of girls names. We've never been able to decide on a first name. But I know that if we ever have a girl, she'll have the perfect middle name. This epiphany lead to more tears (I should be banned from driving long distances) as I thought of the babies I held over the weekend, AJ, and Jose. Having an impact on a child's life has brought me more joy than I could have ever of dreamed possible. I love being AJ's Mom.

I'd love to be a Mom again.

Magic Carpet Ride

2011-08-31T06:14:00.000-05:00

When AJ first began toddler group at the age of 2 years-11 months, there were three times during the course of group time where the kids would sit on carpet squares. They'd grab them from a pile by the door, and put them away when they were finished. It thrilled me the last few days of group, when AJ finally began sitting much better for the beginning circle time and understanding the concept of holding his carpet square as he was guided to the door, and then dropping it in the pile.

When AJ began preschool it was disappointing to me that AJ was not able to participate in morning circle time, again, on carpet squares. At the end of his first year, on the very last day actually, I saw him sitting with his friends, sans carpet squares but on the actual carpet.

During his second year of preschool he learned to consistently sat on his carpet square for morning circle time, the ENTIRE circle time and learned to anticipate the routine and participate. He sat and paged through books with his classmate. He learned to stay on his towel for quite time, the entire time. While he struggled with different events (ie Holiday Party/Santa's Visit), the consistency during his normal routine was amazing.

Fast forward to last evening at Meet the Teacher Night for our little boy who is now in kindergarten. We left the house in a rush on the muggiest day we've had in a few weeks. Eww. For some reason it is always hot and muggy on Meet The Teacher Night. I was a bit nervous, even though I knew who his teacher would be. She had called earlier in the afternoon to chat, which put me at ease. Less to try and "report" on such a crazy night. AJ technically has three teachers. He has his Teacher of the Deaf (TOD), Special Education Teacher, and the main homeroom regular Kindergarten teacher. AJ will be spending most of his time between his TOD and his Special Ed Teacher.

As I stood in like with AJ's TOD to meet the main homeroom kindergarten teacher, I felt a bit of panic rise up inside me as we entered the room. It was a huuuuuge room. To the right I noticed a huuuuuge carpet, in a rainbow of colors. One row was red, orange, green, blue, purple. One huge carpet square. How cute, I thought. But definitely not appropriate for AJ. It took literally seconds for me to deem this environment not appropriate for my kiddo. He would be totally.lost. We spoke with the teacher for a few minutes, whom of course knew AJ already (everyone seems to know this kid) and said she had seen me around.

Meanwhile, AJ was outside in the hallway with his Daddy, having a massive meltdown. This always happens at Meet The Teacher Night. We begin our routine of early bedtime and longer days, and he's exhausted. He had gone to bed at 6pm the night before, so when 6:05 rolled around and he was at school, when he's normally in his PJs in bed, he was noooot happy. Along the way we ran into many of AJ's classmates. We love being part of such a special family. It is amazing.

We made our way down to his Special Ed teacher's room and chatted about AJ's new iPad2 that we were anxious to pick up last night after all the school shenanigans. AJ's daily schedule is the topic of a meeting between the teachers today, so I should receive a phone call on that later. For the month of September, he'll be attending M-F until 1:40pm. At the end of September, we'll reevaluate and adjust his pick-up time as needed.

Our last stop was back in his TOD's room, where AJ made himself at home by finding the fan and...the carpet. A smaller carpet, with a lovely texture that he sat down on and rubbed to his little hearts content. At that moment, I knew he'd be fine. While his TOD and I chatted more, AJ found the carpet even more comfortable, as he crawled into fetal position on the floor and wanted to sleep there. As we were preparing to leave, he explored the room and found the sink right.a.way. Crazy to see him walk right up to it and be able to reach everything-he's that tall!

I've had small moments of sadness, thinking about how my little boy is in kindergarten...but he's really not. It bothered me to buy and sharpen pencils, knowing he won't use them. He does not know his colors, numbers, letters. He cannot spell his name. While my mind has mostly adapted to this reality, every now and then there is a zinger or two that hit just at the right time that I lose it. But last night was not one of those moments. The minute I saw him sit down on the carpet, I knew he was in exact the right place. It was the right place, the right carpet, and it was indeed, magical.

Winding Up

2011-08-26T05:38:00.001-05:00

Its 4am and I'm wiiiiiide awake. Funny what stress does to you.

Our sitters have been swamped with summer classes and visiting their families, so Jer and I haven't had a whole lot of time to ourselves. I was thrilled when an "old" sitter (old meaning she's had a big person job for over a year now and left us back then) offered to watch AJ for us.

On Tuesday we went and saw the movie Crazy Stupid Love, which was SUPER GOOD. As we walked out to our car, reminiscing about our own dating journey and all that goofy love cloud chatter that happens after watching a movie you relate to, I got in the car and gasped aloud as we pulled out of the parking lot.

I forgot to give AJ his seizure medication that night. I panicked and panicked, as we've NEVER missed a dose before, all the while Jeremy assured me AJ would be fine. We had started our afternoon at a much-stressed over GI appointment and then, since the weather decided to cooperate, I rushed home to grab pants and AJ's riding shoes and then drove to the sticks for riding therapy. We got home, shoved some food in our mouths, and left for the movie. And I totally forgot to give him his Keppra.

I called the sitter and asked if he was awake, he had just gone down 20 minutes earlier. Waking him up to take the medicine would have been a holy disaster, and odds are he would have choked on it. Waking him up would have required a full wakeup, and, well, we chose not to.

Fast forward to late Wednesday morning. AJ wakes up (he's been sleeping late due to growing) and doesn't want to get out of bed. He gives me his famous morning smile, but keeps folding over his pillow. I walk him to the potty and he folds over the toilet, but no screaming-translation, I'm done get me off this thing. I lift his dead weight body up and see he's having a seizure. And by seizure, I mean drooling, the whole nine yards. Not a cluster of absent seizures like we had seen a few weeks ago. I set him on his bed and watched him till it stopped. Then when he was back up to par we tried brushing his teeth. More seizures. His body goes weak.

Oooooooook. New territory. I sat him back on his bed and watched my child seize in complete horror. No other word to describe it. These were definitely seizures, no question about it. He'd be fine for 30 seconds to 1 minute and then seize for 30 seconds. Off and on. I ran to grab his CIs and had already given him his morning dose of medicine. There was a profound amount of drooling, lip quivering (this is new) and mild twitching jerking of his upper body. I called the neurologist's office right away. But after a few more seizures and no calls back, I had already started pulling stuff out of his drawers preparing for the hospital. This was in-between making sure he was still breathing and patting his legs, calling his name all through a stream of tears like something out of a freaking movie. Trying so hard to try and stay calm for my little boy, but crazy freaked out at the same time. As if calling his name is going to snap him out of it. I called 911.

He was sitting upright, but lethargic when the paramedics arrived. It seemed to take forever to get clearance to go to our hospital of choice, but we finally got it and I followed in my own car. I did not want to get stranded at the ER again.

If there has been one perk to Jeremy's new job, it is that he's been able to attend two important events in AJ's life. The GI appointment the day before, and now a trip to the ER. AJ was fine, crying and fussing when we walking in to his room, so we knew he was feeling better. All in all the visit was very short and no exact reasoning was given. A combination of the lack of medication and mayyyybe his fall last Sunday might have readjusted how his seizures are triggered. That is much less likely than, um, my kid didn't get his medicine.

I left the ER with a rather tired boy and we stopped at McDonalds, because he was starving. He napped as soon as we got home and was still tired when he got up, but a much happier little boy. We had friends over for pizza and it was a nice night. It was nice to take my mind off of what had happened a few hours earlier. However, I am making a rule. No one is allowed to take pictures of me on an ER day. Yikes.

Fast forward to yesterday morning, where AJ woke up happy as a lark and in much better spirits. Only to have leads put on his head for a 24 hour EEG here at home. I didn't cancel the appointment because, well we want to know if he's having clinically silent seizures (no outward symptoms) and we need to have this done before school starts-next week. Clearly, he showed he could have symptoms the day before. Anyhow, the last EEG we had was torture, for both AJ and I, so I was wound up as to how it would go. He's done amazingly well and hasn't tried to pull that sucker off at all. He even did well when she was putting the leads on. I must say, the tech was fantastic, but I was prepared for horrible AJ to show his face, and he didn't. The only part his did not like was the air compressor. Yeah. They put the leads (electrodes) on his head with glue, then she saturated a small gauze piece with nasty smelling glue, then sticks a small sprayer type thing in a hole on the electrode and blows cold air on it all to dry the glue super fast. His head is wrapped with gauze and then a stocking type thing, that leads down to his tail of wires and into the unit itself. He looks like he's wearing a turbin on safari. He did really well yesterday carrying the unit in a fanny pack over his shoulder. I'd give him breaks from carrying it when he was eating and if we were sitting and playing. But beware when he gets up to go and you have the unit not attached to him. Yikes! Of course, saying "HEY!" didn't help, because.....he couldn't hear me!

Which, is extremely difficult when your now hearing child via the wonderful magic of CIs can't hear. ALL DAY. What an amazing discovery as to how much he uses his hearing. Anyhow, he was annoyed at me looking at books, because he couldn't here me. Or his pop-tube, the puzzles, the microwave. All things he KNOWS make noise. Very cool, in the grand scheme of things. By the afternoon I wasn't thinking it was so cool. Our tree trimmers chose to come yesterday-I didn't anticipate them being here all day. Since AJ needs to be 20-40 feet from this schmancy laptop they've set up here in the house, we were homebound. Which would have been fine, if I could have taken him outside. Chainsaws, ropes, falling tree limbs, chippers, and such do not provide such a great environment for a 5 year old. He was stir crazy and so was I. My adrenaline wore off and I was questioning why I chose to do this after yesterday's ER visit.

We went out for a family dinner last night, thanks to the same sitter. I was never more thankful she's a nurse and was not freaked out when I told her what happened and if he has a seizure you push the button on the pack and log his activities, etc. Love her. By 9pm, my stomach was in knots and I was exhausted. By 11pm I was even more exhausted.

AJ and I were up at 4am, for different reasons. I think the last two days finally caught up with me. While I did sleep last night, out of pure exhaustion, tonight not so much. I feel myself winding up instead of down. Watching your child have a seizure, and not just an absent one where he stares off into the distance, is seriously trauma. Holy crap. And while I harbored most of the Mommy guilt the night I didn't give him the medicine, clearly, this kid needs his medicine. There IS a logical reason for me to be so diligent and timely in giving him his medicine. Because if the medicine helps us avoid the trauma of watching my son seize and having his brain wig out, then guess what, 2mL twice a day should not be that difficult. And yes I am human, I'm not perfect, but there is something about watching your child seize, that if you know it could have been avoided, that just plain sucks. It makes you feel guilty knowing you could have done something soooo simple to avoid the consequence.

Just in case, I've set an alarm on my phone for his dosing times and I'm considering getting one of those baby video monitors for his room. Maybe not for use all the time, but it would definitely make me feel better I think. My guess is he slept in so late the morning of the seizures due to having more seizures earlier in the morning. Poor little dude. I guess the most common time to have a seizure is in the morning and if he missed his night dose, then he missed the leveling off it gives him to avoid those. Lovely.

I'm relieved he's handling the EEG equipment so well, I think that would have made things so much worse. I'm anxious to take all of it off...well, let me rephrase. I am not looking forward to using the remover solution, which they tell me, removes varnish off of wood. Nice. And I'm putting this on my child's head. I'm not looking forward to that, but I am looking forward to having a hearing boy again and taking him to the park for some fun.

Now, I'm going to try and get another hour of sleep, before I get up and help my husband pack for his trip.

I hope its a quiet weekend.

Tuesday's 10

2011-08-18T16:27:00.000-05:00

1. I've been up since 3am, so I might as well blog, right? Blame it on way too many Diet Coke's yesterday/last night and the fact that I heard our German Shepherd stuck under our new bed-again. Seriously. What possesses him to end up under the bed, when he can't get out? I'm still not sure how he got under there.

2. My husband is asleep next to me, yet his Facebook status shows him online. Hm. Facebooking in your sleep? That's a new one.

3. This weekend is officially "Buy AJ his iPad 2 weekend". Jeremy and I are so excited. We spent over an hour at the Apple Store a few weeks ago playing with the iPads on display. Seriously. What else is there to do while waiting for your table at P.F.Changs? We were both impressed that all of the iPads had multiple augmentative communication systems for users to play around with. If I would have let him, I'm pretty sure Jer would have spent the evening on the Puzzle app. Too cute. His Otterbox just came for his iPad. It made me cry. We are beyond anxious to get our hands on this amazing piece of technology and open a new world of possibilities for our little dude.

4. Our little dude, who is little, and isn't little. At last week's neurology appointment, AJ weighed in at 26 lbs. Say what? NOT COOL. Leave it to AJ to worry me a completely different body system while were at an appointment for his brain. On the flip side, he is now 37 inches tall. 37 inches tall! He's always grown up instead of out. But this is a little ridiculous! The boy is all legs. His neurologist was worried, because his last weigh-in (at urgent care) was 30lbs. Well, it was an estimate. He wasn't actually weighed that day. That eased things a bit, but the 26lbs is still a cause for concern, as it would mean he's only gained a pound in over a year. We have an appointment with his GI doc next week and I'm sick just thinking about it. I'm already feeling guilty in a million ways about his weight. What are we not doing that we should be? Sigh.

5. Speaking of his brain...we're still on the same dose of Keppra, 2mL twice a day. It is hard to say if this episode while vomiting a few weeks back was him being lethargic due to the illness, or true seizures. His neurologist is suspicious of clinically silent seizures. Meaning, is AJ have seizures and we don't know about it. Like, as in, no symptoms. So, we're doing a 24 hour EEG. That should be fun. A company will send a technician out to hook him up here at home, then wrap his head like a mummy, complete with cords down his back running into a backpack. Then its my job to keep this on his for a full 24 hours. I can already tell you, this is NOT going to go well. But, I am hoping we get at least a few hours reading to see whats going on with the little guys noggin. And, his neurologist and his nurse were thrilled to hear we were getting him an iPad, it seems these things are working wonders with their patients!

6. At the suggestion of another wise special needs Mommy, I found an awesome baby mirror type-thing for the car. I've been hyper about watching AJ in the car. Like.a.hawk. As a result, my neck was getting a bit funky from cranking my head in his direction a million times a day. The mirror is about half the size of my rear-view car mirror and clips nicely onto my visor. It also has a ball mechanism, so I can rotate and move it around to just the right angle. LOVE. Yesterday was our first day using it, and my neck was patting me on the back the whole ride. I could see him, and I felt a bit better.

7. Our new insurance kicked in a few weeks ago and much to our disappointment, PT and OT were denied. On the up side, feeding was approved. Sigh. AJ's PT and I made the decision to keep his pool therapy going, every other week, until September at this point. We'll take it on a month to month basis. He's amazing in the pool. You should seriously see this kids face when we turn the corner for the community pool. He lights up like a Christmas tree. Totally adorable.

8. I'm turning 30 this week. A bit of shock and awe in that statement. I'm definitely ready for my 20s to be over. I'm hoping for that magic fairy dust that declares "I don't care what people think" and "Do what is best for you". Anyone have a pouch they are willing to share? Seriously. My 20s were packed full of uncertainty. While I do not, in the least bit, regret being what is considered a "young mom" at 25, being a young special needs parents has taken its toll on me. I look in the mirror every day and feel 40. I guess that's what stress does. Does anyone have botox or lipo in their pouch too?

9. AJ was finally fitted for his new UCB's and his night splint yesterday. He was casted 3 times yesterday. NOT a happy boy. I don't blame him, but there comes a point where his wailing and carrying on brings a ball of stress and a sense of discomfort to the space and people around him. Hopefully they'll come in soon!

10. We are finally moved and getting settled into our new home. After 2.5 years of talking, talking, and talking then trying to move, we've finally made it. Leaving our first home was bittersweet, and we both experienced emotions this week that were unexpected. AJ has adjusted remarkably well. Out of all the things I thought of that might upset him, none of it did. What did though, was the noise. We moved from country to city living. I truly didn't realize how quiet it was by us until we moved. If you think about it-it is amazing that the sounds bother my Deaf child. I mean, seriously? That is amazing. But he wasn't thinking it was so amazing. It has helped to sit on the front porch and watch the "noises" as they go by. Hearing them in the backyard, he was confused and just upset by the sounds. Pointing out what the things are has helped, as well as exposing him to the sound difference between the front and backyard. We LOVE having a backyard. LOVE IT. We did it all for our little man, and couldn't be happier.

Holding Pattern

2011-07-28T11:27:00.000-05:00

AJ finished summer school today. When did summer fly by, and why didn't I notice? He did extremely well, with all his sessions, he only had one horrible day. The rest of the days, he was thrilled to be there. I'm planning on driving by his school a lot in the next few weeks, just to keep his brain connected to the place. His visual memory is amazing, so I have no doubt he'll recognize it when we pull-up, or even play on the playground.

I'm nervous as to how he's going to react to the new house. He's been there before, but I'm really hoping he adjusts well. It will be a lot of change for him. I'm also nervous as to what I'm going to do with him for 6 weeks before school starts. Yikes. Did I mention how much he loves school?

I'm frustrated about AJ's recent approach to potty training. And I'm nervous that school, or someone or something, may ask us to stop potty training him. We've been at this over 2 years. And I'm exhausted. 2 years! For a while, he totally had pee'ing down. Let's not even talk about poop. As much as we try to ask if he has to go potty, and try to remember when he went last, the recent chaos around here has not helped the 'schedule'. What is so frustrating is that he has the control, whereas many children with CP don't. He can "feel it" just fine! I've tried, several times to teach him how to pee standing up, and he just doesn't understand the concept. Which is fine for now, we'll still have him sit and go, but that creates more dependence on his aide at school. I don't know. Its an issue, and I'm frustrated. Period.

I've purchased, labeled, and placed all of his school supplies in his backpack. Yep, I'm that Mom. I feel better knowing I won't have to run out and try to find 12 blasted glue sticks at the end of August when everyone is sold out of all the required school supplies. No doubt there will be something his teachers throw on the list that wasn't there last week when I printed it, but I'd rather run out and get one thing in the midst of moving rather than the whole list. Besides, my label maker makes me happy.

As with all things Heidi & Jeremy, this moving extravaganza has turned into chaos. We were supposed to close yesterday. Yes, yesterday. We are hoping for next week. All of that calmness and "I'm not overwhelmed or panicking" I wrote about last week, is now present. I just want it all to be done and over with. We are stuck in a holding pattern. Nothing to do be sit around and wait, while packing some last minute things. Everything as planned, is now haywire. Which, in theory, makes me feel incredibly dumb. Because I truly should know better. There is a fine line between the optimist and the pessimist. Jeremy and I are both on that line. Not purposely waiting for that shoe to drop, but given our past experiences, we usually assume it will. With moving, we were silly enough to think it would go somewhat well. The best laid plans....

Mahalo Molokai

2011-07-18T13:27:00.001-05:00

I can't believe its been five months since our trip to Hawaii. We spent 8 days there...the perfect amount of time for us to unwind. We flew into Honolulu on a Friday afternoon and stayed overnight close to the airport. The next morning we flew to Molokai, which is the island nestled between Maui and Lanai. Holy We Are In The Middle of Nowhere. It was breathtaking.

Our hotel was the only on the island. The restaurant was 20 paces from our room.

Did I mention it was on the ocean? Did I mention our room was right on the ocean?

We had a gorgeous view of Lanai.

Find one of the many small paths between the greenery and your on the sand.

We spent the week touring the island-all 38 miles of it.

Heading to the West End we spotted this gorgeous spot.

On our first night in Molokai our hotel sponsored a benefit for the Special Olympics.

Did we want to go? Absolutely!

We tried local food favorites. This is "Loco Moco":

And had ~~lots~~ some of these...

There are more Packer Fans on Molokai than you would think!

We went off-roading and snorkeling...

And went to the beach...

The most gorgeous black

sand beach on the East Side-Halawa Bay.

(I had a print made of this shot for our new house-LOVE.)

We enjoy doing lots of nothing...

Night strolls on the beach...

Learned about and cracked our own macadamian nuts!

And celebrated 10 years of marriage.

I wasn't quite sure if this trip was going to doable, especially the night Jeremy bid on the timeshare week someone had donated to a charity event we attended. I was thinking about it logistically. Who the heck is going to watch AJ and, and, and... It all worked out. A very special thank you to Jer's Mom for watching AJ for the entire week.

We had an amazing time and really had a chance to reconnect as a couple. I was silly, he was silly. We laughed until we cried. We relaxed and talked about the future and talked about how we need to do this more often. Perhaps, not a trip across the country all the time, but we found ourselves totally re-energized and ready for life. We needed recharging. We hope some day to make it back to Molokai, but for now, we'll enjoy our amazing memories.

Sunday Heap

2011-07-17T19:57:00.001-05:00

~Last week Monday we had our telephone court hearing regarding the denial of physical and speech & feeding therapies for AJ. Our primary insurance stopped paying for these therapies eeons ago, stating it was just maintenance therapy. I'm still not sure how any therapy with a child, much less a 5 year old, can be considered maintenance. Anyway, knowing our state insurance was covering these therapies was a huge blessing. Even though they've denied before, we've appealed, and luckily we were given sessions before the hearing date. Appeal dropped.

But this time, they weren't budging. I spoke briefly to AJ's therapists, and went in a bit more nervous than I thought I should be. I took the pages upon pages of each denial letter, grabbed a highlighter and pen and picked them apart. I rehearsed as much as I could (other drivers on my route to and from AJ's school probably think I am the weirdest person alive talking to myself).The judge called and clarified this hearing was for two therapies. Yes. We started with PT, where I went on and on about how he needs it, and although I try my hardest, I am indeed, not a professional physical therapist. Mind you, the judge states she did not have a copy of the physical therapy denial letter in his file. Well, that's nice.

We moved on to speech and feeding. Now that I think about it, I don't think I touched on feeding nearly enough. I was stuck in the speech rut. Especially since this goes back to when AJ first arrived home. All in all the conversation, er rather me blabbering on for 45 minutes.

In the end, I am told that the petition AKA decision will be given by mid-September. Well, that complete defeats the entire purpose of the hearing. AJ was denied services at a very, very crucial time. The plan was to prepare him for the upcoming school year. The tentative plan is for AJ to attend kindergarten till early afternoon each day, every day. There is no way he will be able to function for multiple therapies per week after school.

Instead, he has regressed. He is tripping and falling constantly, the tightness in his leg has traveled back up to his arm and shoulder again. His UCB (orthotic foot inserts) are too small, so in addition to getting him in for the night splint, he now needs new UCB's. When calling to make the appointment, I learned his orthotist is out on medical leave (you learn quickly not to go to just anyone to fit your child for orthotics). The soonest we could get in is mid-August, which means we'll be lucky if we have orthotics by September. Anyone want to know what his leg/foot/arm/shoulder are going to look like if we wait that long? I don't.

In the meantime, I got creative and used my hairdryer to heat the plastic of his UCB and then stretched it out. They use this process at the orthotic office, so I thought my ghetto attempt might work, minus the industrial heater and professional tools and, er gloves (OUCH!) they use. It worked. And I'll keep doing it until we get new ones.

As far as therapy goes, I'm not sure where we are headed. The plan was to only continue on with feeding therapy 1x week once school begins. While I know he won't function well after school if we try the same therapy frequency as last year, I'm not sure what is too much, but I know what is too little. Since the appeal is virtually useless in relation to summer services, they might, just might approved a set number of therapy sessions for the future. And we'd be stupid to not utilize those sessions. We have a lot of thinking to do.

~AJ has another ear canal infection. Yes, my worst fear for summer has happened-again. On Friday I decided to take him to urgent care after pool therapy. The kid loves pool therapy and his ears didn't need to be on, so I thought it was a win/win. It was a waste of time, and money as we have private paid for AJ to have certain therapies this month. Live and learn Mommy. After dealing with a less than friendly and helpful lab technician and the rude staff at the particular clinic we frequent for urgent care, I decided this was our last visit. It is time to find a new pediatrician who is closer and to whom I'll be more likely to go to when things of this nature pop-up.

My poor little man was so miserable. He sooooo knows the routine. We go to the doctor, the look in my ears, I scream, Mommy drives to pharmacy, they don't have the script ready, so she gets mad and we drive to get some food, then come back, all the while I sit with the saddest most pitiful face, complete with bottom lip and tear action. This is one area I am proud to say I am not patient with. Dear pharmacy, allow me to plop my dehydrated, crying, in pain child on your counter. You really want to make him wait?

Antibiotics take effect almost immediately with this kid. I mean it. He woke up the next morning oh so happy and full of energy. And hungry. Good Lord. We put on his left ear (the infection is in his right) and he did great all day with it. He napped and also slept through the night, which was a big relief to both Daddy and I. We are so spoiled that AJ has always been a good sleeper. When he doesn't it throws the whole house off. Even the pooch. Today, I cringed and held my breath as we put on his right ear. No tears. He was bilateral by mid-morning and stayed that way all day. Whew...I had visions of last summer and it was frrrrreaking me out. In short, I love antibiotics. :)

~During Friday's pool therapy, AJ's PT once again reminded me how horrible his leg/foot look. So I'm back to taping him with kinescio tape and the regular regimen of trying to keep him loose. Its really disappointing that his tone is kicking in all the way up his left arm and shoulder too. Boo. She mentioned the word Baclofen again. As in the medication. I've mentioned the Baclofen pump before, and while we've deemed that would not be appropriate for him (and now there is new research showing the Baclofen in pumps may increase seizure activity), now Baclofen as a regular medication may be needed. Groan. She didn't say anything else about it, and I didn't push. I'll just keep on doing the regimen and we'll hope for the UCB's, night splint, and a miracle.

~Last weekend wasn't particularly fun. AJ had A LOT of absent seizures. And I mean A LOT. Jeremy counted upwards of 60 just in the morning alone. All a few seconds in length of course, but yeah. That many. Which means his medication isn't doing the job anymore. Well, he did throw up that morning, so that could have made it worse since his meds didn't stay put. He seemed better after a nap, but then they started up again. I put in a call to his neurologist. We did a blood draw to check his Keppra levels: which I am anxiously awaiting. Since he's grown so much, odds are its most likely just a dosage change. I sure hope so. EEG's are traumatizing for this kid, so I was glad to hear they didn't want to put him through that. Since he had seizure activity, we don't have to do the EEG to see if there's been activity. I also asked if taking his Keppra a bit off schedule could cause the activity. It depends, each kid is different. Oh generic answers, how I dislike you. I think its safe to say it does for AJ.

~We spent yesterday morning in our bedroom with AJ serenading us with tunes on his keyboard. Daddy even joined in with lyrics. We packed our entire closet and dressers into boxes. Things are more and more sparse around here. We are making terrific progress and I'm still not overwhelmed. Imagine that. I think one of the biggest calming factors is that we've hired movers. I was wishy-washy about it from the beginning, but it has proven, by far, to be the best decision we've made in regards to the move.

~Tomorrow is Monday, which means its "I wanna quit school" day. The day in which I whine and feel overwhelmed and question why on earth I decided to go back to school in the midst of all of this. Monday's the last day of the class week, which means the weekly big project or paper is due. Tuesday rolls around, which will mark the beginning of Week 3 of this class, and I'll be fine. I am contemplating taking more than one class per 5-week block once AJ is in school in the fall. The only issue is financial aid only allows one class per 5 weeks, so I would have to pay for additional classes. My university requires that you get your feet wet with a few classes and show you can handle the workload before they'll allow you to add additional classes to each 5-week block. I would love to finish my degree sooner than later. Its either more classes, or a part-time job. Both freak me out. The job because I have visions of AJ needing me in some capacity, whether it be picking him up from school when he's sick, or needing to go to an appointment and I'd have to work. There are still enough of those appointments that I'm just not sure I could find something flexible enough. But, I am willing to look.

~Jeremy is researching programs to begin his Master's/Nurse Practioner Degree. Wish him luck!

~AJ absolutely LOVES riding horses. We've gone ahead and signed him up for the 3rd session, so he'll be riding until early September. Here he is in all his glory:

Sweet Moments

2011-07-13T20:58:00.002-05:00

Yesterday was a day which usually lives only in dreams.

As he does every morning, AJ flashed me the biggest grin in the history of grins when I opened the door to his bedroom. This moment, each day, is by far my favorite moment of the day. I drove AJ to summer school enjoying the sunshine, the cool breeze, and my recent iTunes uploads. After dropping him off, I ran to the store to purchase Jeremy some new duds for work. I picked up a very happy boy from school and we came home for a snack. Back in the car we went, with AJ's smile in full force.

We drove to the post office, where AJ charmed the hearts of every single person in the building. Our next stop was the grocery store, where he proved he is officially too big for the child seat. He did well as I encouraged him to "hold on to the cart" as I was packing the groceries. We stopped at his favorite Chinese place for his favorite fried rice, and came home to eat lunch with, you guessed it, Mr. Smiley.

He laid down for a nap while I packed more boxes and did homework.

After waking up from his nap, AJ was delighted to discover we were once again leaving. As we walked up the gravel road to the horse arena, his little eyes lit up like diamonds and he squealed in delight. "Horses! Horses!", I could feel him saying from his heart. AJ enjoyed every second of his session and had his own giggle-fest when the horse trotted. He left cool, calm, and collected.

When we arrived home, AJ fully cooperated in the second favorite part of my day. He saw his Dad, and erupted with a huge squeal of excitment as he ran toward his Daddy. It is, quite honestly, the sweetest moment I get to witness between my two boys.

Days like this fill me with positivity. Hope. And a taste of the normal. While technically, summer school and hippotherapy are educational and therapy....for once, it didn't feel that way. I cannot express how refreshing it was.

Monday was our telephone hearing regarding our appeals for the denial of AJ's physical and speech therapy. In preparation for the hearing, I spoke with AJ's PT. She listed all of the things we manage for AJ, and said, "You need to ask them when you get time to be AJ's Mom." That sentence has been on my mind all week. This is perhaps, the very reason, why Hard Moments are the way they are. While I am AJ's Mom, I am all too often wearing multiple hats at the same time. The Mom hat seems to be less worn than those that are seasonal.

Yesterday was a day full of sweet moments. Moments where I felt like just a Mom.

Hard Moments

2011-07-08T22:03:00.001-05:00

We didn't plan anything for AJ's birthday last week. Mainly because it has been nothing short of insanity around here. On a whim, I decided to take him for a birthday lunch at our favorite Latin-American restaurant. Since it was a beautiful day, I asked to be seated on the patio.

It was the most depressing lunch I've ever experienced. I went in with no expectations whatsoever, mind you. We take AJ out to eat enough that he understands the concept and since the boy loves to eat-it is a win/win. This was the first time I had taken him on my own, without Jeremy. His presence was sorely missed. Suddenly, I was whacked into reality land. My child doesn't talk.

In fact, he didn't make a peep the entire hour we were there. Our waitress was working way to hard to earn her tip and for some reason talked to AJ at a much louder decibel than she did to me. He didn't respond. "Here you go buddy," she said. He stared off at God knows what and continued to methodically dip his chips in salsa. "Are you hungry?" "Do you want a spoon?" "Be careful, its hot," she said. Usually his lack of participation is deflected by the conversation between Jeremy and I and the server. Because we are talking, the spotlight is directed away from AJ's inability to talk. Don't misunderstand me, we certainly make him part of our conversations.

I asked him several times if his food was good. "Is it good? Mmmmmmmm." "Do you want your juice?" "Say, more please." "Mommy loves you." I felt so foolish. I felt like I was talking to myself. A train passed and I tried my hardest to get him to look. Its way to far for him to focus and see, I thought. He ignored me. I picked at my enchiladas and did my Mommy duty scrapping the rice on AJ's plate into the middle to help him get it on the spoon, instead of the patio. A couple was seated on the patio and I felt the eyes of curiousity shifting to our table-a lot. Just ask what the damn things are, would you? I left a healthy tip (even though she annoyed me, AJ made a huge mess and I'm that person who tips heavily on behalf of my child) and we left.

I sat in the parking lot and bawled. Perhaps I shouldn't have picked his birthday to make such a journey solo. I really didn't think it was that big of a deal. I cried until we returned home, when soon it was time to change and schlep out to his first hippotherapy riding session. No time to dwell.

Lately, AJ's pool therapy sessions have been at times where the club's day campers are in the pool. Clearly, I am used to a quiet house because 25-30 kids in a pool make me cringe and go into sensory overload. But today, I could not stop staring at them. Watching how the children interact with each other and were just able to move their bodies in ways I can only hope AJ will learn to. How the lifeguard blew her whistle and all of the children stopped (ok, paused) and listened (listened like kids sorta listen). They were independent, as independent as grade-schoolers can be, and enjoying life. AJ was enjoying every second of his pool time, but I know the reality of why he's really in the pool. Today, I just couldn't turn reality off.

I've been hounded as to what we are doing for AJ's birthday, and to be honest, I'm sad about his birthday this year. I'm not in a mood to put on a pretend face and have a huge shabang, only to hide my true heartache at such events. I'm still debating on hosting a little shin-dig for his little friends, but I think that's all we'll do. Last year, I felt the need to press on with AJ's birthday despite Jer's brain issues. Considering Jeremy doesn't remember any of his son's birthday party and all AJ cared about was the swings, I'm not sure it was worth it.

I am not sad that AJ turned 5. I am so proud of my little man. He's not a baby anymore and shows me more and more every day that he's turning into a little boy. I am sad that he does not understand the concept of "Happy Birthday" being sung to him. I am sad that he doesn't understand what a birthday is-even the childlike concept of this is the day I get lots of presents and cake! I am sad his hearing age is 7-8 months. I am sad his language age is 6-8 months. Months. Not years. Sad at how many words and sentences I speak every day and receive no response. At all. I am tired of hearing about all the things he has yet to do. I am sad he does not know his colors, numbers. I just read that most children at the age of 7 are reading chapter books. Say what? He can't sign or say Mommy when he needs me. I am all too often overwhelmed when he screeches or whines and I cannot decipher exactly what it is he wants. I melt at the sight of AJ's smile when he sees his little buddy at summer chool and wish so very badly I could snap my fingers and provide siblings for him. So many things make me sad.

I remember sobbing, uncontrollably, to one of AJ's therapist's last year. It was the first time I've ever lost it, in front of anyone other than my husband when talking about AJ. She had had the balls to speak the truth to me and I stifled my crying until three years of holding it in broke me and I sobbed aloud, "It wasn't supposed to be like this!!!" The therapist cried with me. I'm feeling that way again. Surrounded by the normalcy of others and our grave differences is literally suffocating me. Days have become unbelievably full of these hard moments. And I'm not sure why. I'm grieving. This, a fact. But why such a full-on sadness? I feel like were stuck and things are never going to change or improve in regards to AJ's communication skills. Is it my fault? What I am I not doing enough of? I feel guilty for being tired and for getting angry that I'm doing all that I am supposed to and we're still not getting anywhere. Isn't this my job as a mother?

Hard Moments Are Hard.

Thursday's 10

2011-07-07T17:05:00.000-05:00

1. We are on our second week of summer school and AJ is loving it. This kid would loooove year-round school. I am very impressed with his summer school staff. I saw immediate growth on Day 1, just sitting and watching him with the staff. One the first day he did conditioned play perfectly, responding to 12/12 sounds. Stinker. Now if he'd only do that in the booth at his audiology appointments. I've purchased an empty coffee can in hopes that this will help him keep the idea consistently across different environments. They use a coffee can at school. I mean he did the whole hold the block to my cheek, waited, listened, and dropped the block in the can. He's totally got it.

2. AJ turned 5 last week. I'm not sure how or when that happened. How is he getting so old, so fast? Luckily, he was able to finally participate in hippotherapy riding on the day of his birthday. He rode a horse named Dell and fell asleep while riding. His body was so relaxed. Watching him ride brought on some tears from this Mama. He looked so grown up in his helmet, riding a horse. Why no pictures? Because I forgot my phone aka camera. The therapy certain paid off, as his gait has been much slower and more controlled. Yesterday he rode again, riding Chubs, a smaller horse, who seemed to keep him awake! He rode backwards a few times and even got to experience a trot a few times. Being on a smaller horse gave him the opportunity to sit at face level with the OT and other facilitators working with him and Chubs. I saw great eye contact, turning to his name, and turning to either of the girls when they talked to him. He also let out some hilarious giggles during the trot. Again today his gait is slower and he seems to be more controlled. Except for his left foot.

3. Oh the left foot. In the words of AJ's PT, "His left foot looks horrible". Yes, it does. It is turning in so much it is hindering his walking. So even though his gait is improved with the riding, his foot is messing things all up. Meet AJ's newest piece of equipment:

photo credit

Behold the night splint, in all it's glory. We have an appointment to have him casted/fitted for it in the next few weeks. He'll wear it at night while he's sleeping. At least I hope he will. The DAFO (thats what its called) is designed to gently stretch while resting. I'm not going to get into what the next steps are if this doesn't work. We're just going to be positive and hope this splint, along with the massaging, e-stim unit, and keeping him mobile will do the trick.

4. A few weeks after the regular school year ended, I spoke with the school district vision specialist. AJ is very hit or miss with his vision. During his IEP I stated I would contact the vision specialist to see what suggestions she might have for exercises/things for us to practice using his vision here at home over the summer. She had some great suggestions and we've been incorporating them into our daily routine rather easily. He's able to follow point prompts, but not long-distance point prompts. For example, if I point to the front door from the couch, he follows. If Rocky comes running with the frisbee across the front yard, he tracks Rocky running. Now, get him to stop and listen (with success) and then point prompt with the verbal use of "look!" and he's lost. He hears the sound, but for some reason he's not connecting to look at the object. He hears planes, trains, the huge tractors and fast trucks that barrel down our road, and even the squeaky stop-and-go of the garbage truck yesterday. But despite standing in the middle of our driveway with me saying look and pointing, he was lost. So, we'll keep working on it. It is more difficult for him to figure these things our considering he was pretty much without two of his senses for a very long time.

5. I cannot get enough of this song:

6. We were graciously given a telephone interview instead of a court date regarding our appeal to the State regarding their denial of both physical and speech therapy for AJ. After reading a 9-page letter written by the reviewer who denied the case, writing paragraphs upon paragraphs as to why my son, who should really just be called Case #XYZ should not have speech therapy, I needed a few days to cool off. Wow. I am hoping the judge hears the truth from myself and his therapists as to why AJ needs therapy. I'm so baffled as to who would think that we want our kids to have these therapies just for fun. Weeeee! Get real. I am super thankful that we do not have to travel to the not-so-nice area of Milwaukee for a court date.

7. Our house looks like a cross between a newlywed pad and a frat house. There is stuff everywhere, as I've begun sorting and purging as we are packing. Our bedroom lamps are sitting on plastic totes. Maybe we should have Ramen noodles tonight as a tribute to our early days as a couple! I am not feeling overwhelmed though, which you would totally think I would be. I'm going about things rather orderly and we actually have a lot already packed, so there isn't too much more to do.

8. It is hard to believe I have finished three courses toward my Bachelor's already. I'm enjoying my new class, Children's Literature. I took the class years ago at a different university and it was my favorite class. I love learning about Caldecott & Newbery award winners, researching authors, and learning the history behind children's literature. It certainly is a whole lot more fun than polynomials.

9. AJ's ear canal infection last summer was awful. Awful. It took us months to get him to wear both of his cochlear implants again. When our summer heat showed up, I found myself terrified to take him outside in the humidity. We cannot have this happen again. On a whim, thinking I was a complete schmuck for considering this, I called our ped's office and asked if there was a way to prevent this from happening. Absolutely, she said. We are using swimmer's ear drops. Hopefully this will deter the humidity from creating another beastly infection for our little guy. But I'm still nervous about it. Just so you know.

10. Kate Middleton is stunningly beautiful. Isn't she? I'm not one for fashion, but I find myself clicking on online bits about her wardrobe wherever she is at that exact moment. She could make a burlap sack look good.

Cardinal Cuteness

2011-06-24T10:52:00.000-05:00

Getting his new duds.

AJ's Buddy, AJ, Daddy

Shaking hands with the coach.

Running home.

What is this thing on my hand?

{And why is it pink?}

Snack Time.

Throwing.

I'm Done.

Hiya Mom!

Tuesday's 10

2011-06-22T08:59:00.001-05:00

1. AJ is tall enough to reach the middle of the kitchen countertops and is tall enough to climb out of the hammock swing on his own. I'm trimming his fingernails around every 5 days. Growth.spurt.

2. AJ negotiated a curb/step all on his own the other day, without any assistance. I total free-step. It.was.amazing. It was all in normal walking stride too.

3. Check out Mr. Mini-Golf:

4. AJ begins summer school next week. I am POSITIVE he will be all smiles when we pull up to his school and may just leap out of the car. He'll have summer school 3 days a week until the end of July. While I had moments at the end of this school year of really missing him during the day, I sorta, kinda, do dread summer. AJ is not that kid who sings "schooooool's for the summerrrrrrrrrrr" on the last day. He loves school. While we do our best to include fun activities here at home, its just not the same environment. I can't seem to cram in as much as they do at school. He's at that age where home is boring. Outside is fun, the park is fun, anywhere but home is f.u.n. So I am thankful he'll be getting a taste of school, and he'll have the chance to carry-over some skills from last year. Of course, he had a huge learning explosion at the end of the year. Always. That kid.

5. Totally random thought-I have 7 laundry baskets. Seven. Why do I have seven laundry baskets? Why do I need that many?

6. AJ partcipated in a local challenger baseball league in the beginning of June. So many amazing parents, amazing kids, and amazing volunteers. The league was started by a member of our very own Milwaukee Brewers, Marcus Hanel, and his wife. When I called to inquire about the program and sign AJ up, I had no idea that I was speaking to an MLB player's wife! The program really is wonderful.

(Pictures coming-for some reason Blogger won't upload for me right now)

7. I'm hoping we'll have some consistent summer weather soon. It is supposed to be beautiful this weekend. We're having a rummage. I haven't done a rummage in, oh 5 years, so this should be interesting.

8. AJ's 3rd hippotherapy riding session was cancelled yesterday-due to the weather. That is 3 in-a-row we've missed. I really, really, really hope he can ride next week. It is a very good thing I signed him up for more than 1 session!

9. I am trying my hardest to get through a book a friend gave me. Even though the book is barely an inch thick, I'm stuck. Same goes for a yogi book another friend shared with me. Why can't I get through any of these?!

10. I'm a bit hesitant in posting this, since we're still kinda waiting to see when the other shoe drops. And, we're pinching ourselves to make sure this is really happening. Jeremy unexpectedly lost his job a few weeks ago. He was offered and accepted a new position for a large company that has a large presence here in the Milwaukee area. We are SO thankful. In addition, we found a new home in Waukesha. We *should* be moving early August. The best part? Well, ok, it truly isn't the best part of this all. What makes me excited? The house is 10 minutes from AJ's school. 10 minutes! We're hoping once we are moved and settled, we'll be able to relax. Just a little. That would be nice.

Character

2011-06-11T19:04:00.000-05:00

While starting our final sort through/packing, I stumbled upon this book from my first year in college.

I have no idea how my brain comprehended the contents. Seriously. I saved the book because it was used my in favorite college course, Foundations of Education, and reminds me of my favorite professor. And, all my notes on the inside and back covers make me feel smart.

The first page I turned to boasted this note I had written in the margin:

"No one should display bad character in anything that they do"

Am I displaying poor or bad character as a special needs mom? Am I setting a bad example?

The title SuperMom was given without my consent. I do not remember signing a release allowing that title to be used in reference to me, myself, and I. I was not given a kick-ass costume when AJ was placed in my arms. No sequins, leather, or push-up anything. I don't need push-up anything, by the way. No costume, no super powers. My costume usually consists of undone hair, whatever clothes are clean (and most likely have some issue or another), flip flops, or tennis shoes.

And yet I feel like I have a responsibility to fill that role, without even thinking about it. I've devoted this blog to the ultimate truth about life with a multiple special needs child. Most of my posts have been borderline depressing. C'mon. You were thinking the same thing. I can't change the truth peeps.

So the question remains-am I displaying bad character?

Should I be putting on the smiley face for one and all?

A friend called me stoic the other day. I was shocked. Not an adjective I would matched with myself. I cry. I BAWL. I lose it. I cry so hard I can't breathe. I get emotional. It happens when I least expect it. I equate it to being punched in the face a hundred times. Eventually, you get knocked out and fall to the ground. Sometimes, I'm so numb I can't breathe, much less cry. The crying comes a few minutes or hours later. People are programmed to respond to positivity. I've learned to spin some sort of positivity to spare the person the akwardness and to spare me wanting to rip them to shreds for not understanding. It's almost as if "AJ's doing so great!" is supposed to erase all the difficulties we are in the midst of right now. It doesn't. As much as I truly wish it did, it doesn't.

So. Bad character?

Nah. Maybe I'm just a bad-ass Mama-Jama who speaks the truth. The whole truth.

Thursday's 10

2011-06-02T10:57:00.000-05:00

1. On a whim, I gave AJ apple wedges the other day. Not only did he eat them, he DEVOURED them. Talk about a huge feeding goal-CRUSHED. I'm not sure what type of apple they were (the apple dippers from McDonalds) but he loved them. They were a bit sour, but strong, so of course he loved them! We've since seen him devour granny smith apple wedges-YAY!

2. AJ had another round of botox in his left leg last week. We'll see. When we saw his CP doctor, I was delighted that he turned to her right away when she greeted him and made immediate eye contact. Considering she called him "socially akward" during our last appointment, I'd say that is progress.

3. We spent Memorial Day with Grandma & Grandpa in Iowa. We had a blast and even went to the waterpark!

4. I am not sure how, but in an effort to make our lives less stressful we've somehow managed to make it more stressful. How does that work?

5. How in the world is it June? I'm not kidding. AJ has less than a week of school left. I'm doing a little panic dance, not sure how I'm going to keep AJ stimulated over the summer. Despite having summer school, therapies, baseball, and hippotherapy on the docket, I'm still super nervous he's going to regress. After all, this has been our result the past two summers.

6. I scored a brand new backpack for AJ for kindergarten next year...for $4. Plaid Cuteness. So excited.

7. Along with that excitement re: #6 is a whole lot of fear and uncertainty. I'm on the fence as to whether or not the fear and anxiety is all new people, new routine related or fear and anxiety over my son's cognitive delays and his inability to communicate. A multiple choice question in which the answer may very well be D: all of the above.

8. We are anxiously awaiting the arrival of our niece-little baby faces make everything sweeter.

9. Yesterday, our realtor walked us through that dream Victorian I've been salivating over since AJ began preschool. It was amazing. Completely impractical, out of our league, and in dire need of a huge renovation, but it was beautiful to walk through. He brought a little sunshine to our morning.

10. Over the weekend, we unexpectedly lost our sweet, sweet Sunny. He was our yellow labrador/great dane mix and lived 10 full years. We boarded the dogs, which we haven't done in years. We received a call late Saturday night stating they suspected a case of bloat. What is bloat? We granted permission for Sunny to be taken to the emergency animal hospital. They confirmed it was bloat. We made the decision to have him put down. We are so thankful to the amazing staff at the boarding campus. They caught his symptoms right away, and stayed with him until he crossed the bridge to doggie heaven. They also made sure our other dog, Rocky, was loved and well taken care of until we returned from our vacation.

It was weird when I only had one dog in the car. Weird to have two dog beds with only one dog. Weird when I turned around to scold Sunny for being too anxious to clean up after AJ eats his breakfast...and he wasn't there. It is quiet. It is odd.

Rocky was super tired when we picked him up, which is no surprise since the dogs play outside 4-6 hours a day there. He seems fine, eating, playing, and back to the normal routine. What is freaky is how calm he is. He's always been the calmer of the two, and ah-hem the better trained dog since we got him as a pup, but WOW. He was feeding off of Sunny's hyperness. Yesterday we left him alone for the first time and he was just fine.

On Tuesday I picked up a clay disc with Sunny's pawprint pressed into it. Tears.

We miss you Sunny Dog...

Lavender Lab

2011-05-22T10:38:00.001-05:00

During one of my weekly trips to Target, I spotted an endcap with some adorable animals on it. After browsing I found this:

His name is Lavender Lab. He has 100% lavender aromatherapy packets inside! The scent lasts for 5 years. Give a gentle squeeze and place him on your child's pillow during the day. To read more and find other cool stuffed animals (like the Sleep Sheep) click HERE.

The Easter Bunny brought this for AJ and he loves it. Because AJ's olfactory sense is so strong-translation-his sense of smell is amazing-I knew this would be great for him. The lavender scent helps calm and soothe him to sleep. Most of the time....

Where's your faith girlfriend?

2011-05-20T07:15:00.000-05:00

I dunno.

If someone finds it, please let me know.

Yesterday AJ was denied physical therapy. Well, technically they approved 6 visits from now until November, stating it was follow-up to a home program. In English you say? This means his therapist is supposed to "check-in" with me and see what we're doing at home once a month.

Um, no. Total wrench in our plans for the summer. Remember how I mentioned AJ loves his pool therapy?

We're meeting today to discuss a plan. A plan that has very narrow options. Today is also a big day in terms of "will we have a place to live in a few months" and a sudden reminder of Jeremy's brain getting funky.

I grew up Lutheran, as did Jer, although we were in different synods. Mine was middle of the road with a bit more strictness than other churches of that synod, and Jer's was liberal. So much so that I was freaked out when I first attended his church when we were dating. This congregation greeted one and another, shook hands, and moved around the church. HORRORS. In my chuch, we barely turned around and said hello.

We married in Jer's church, which became our church. AJ was baptized there, but soon after we felt unwelcome. It was a period of uncertainty in our lives, just before AJ was diagnosed with anything, and we felt laser beam eyes stare at us as AJ cried and fused in the back pew of the church. As we moved to the cry room, we read a sign that said, "Please keep your children quiet, the glass is not soundproof." We realize now that we took the sign our of context, but it was enough to make us never return to that church.

We ignored the church idea for a long time, afraid of the indirect rejection happening. It is amazing how things change when you have a special needs child. Over a year ago we found a church closeby. After watching some sermons online, I found myself in tears. I sent an email to the pastor entitled "Lost Faith". In which I literally spilled our guts and asked pertinent questions that I had no answers for. His response was understanding, encouraging, and heart-warming.

We've attended the church a few times, and even though they have a buddy-program for children with disabilities, we still haven't taken AJ. Why? Too scared. Yep. We feel a connection when we attend, which is what is supposed to happen, but we still shy away from it.

Throughout our journey with AJ, I've heard things like: You are the best parents in the world. You are a saint. He is so blessed to have you as parents....my new favorite line to despise-you were his savior. Um, no. I know you are trying to make me feel good, but really it just pisses me off. I am human, just like you. I do not want to be put on a pedestal because guess what, pedestals fall. I'm confused as to God's plan in all of this. Some days I think it was meant to be, other days I'm completely at a loss.

What doesn't kill you makes you stronger. Well, I'm feeling like Pop-Eye already, and I don't really need to be any stronger. (And yes I like spinach) When is enough, enough? I realize that I have not experienced things such as genocide, the tsnuami in Japan, or homelessness. I realize there are people who are experiencing much, much worse.

But given all of that, we're still feeling how we're feeling. Who's bright idea was it to have my husband's brain go hay-wire when we've got our hands full with AJ? When is enough, enough? "God will never give you more than he and you can handle together." Well, we're not together. Perhaps that is a problem, perhaps not. All those quotes annoy me honestly. And don't try and push your faith on me because its your faith. Not mine. My faith has been shaken again and again. I know He's there, I just want to pick his brain. I know, I know. You shouldn't question the Master Planner. Well this planner wants to. Let's have coffee and hash this out.

Everytime we feel like things are turning around, something else happens. Oh I know, woe is me. Pity in the USA. But this is my blog, and if I want to share my absence of faith, I will. I was numb when his physical therapist called me yesterday. I gave her a line about remaining positive, but really? I wasn't. I was numb and at the end of my rope. I'm numb about Jeremy's MRI today. I'm just numb. I've lost the ability to hope, to hope for the best possible outcome. It has been along time since we've had the best possible outcome. Sure, the little things are natural highs-but we all know they never seem to last as long as the lows do.

Faith is a tricky thing.

Thursday's 10

2011-05-19T06:59:00.000-05:00

1. AJ's IEP earlier this week went well. 15 people: 2 hours. In short: AJ will be in full-day kindergarten next year. He will keep his 1:1 and we'll be adding special education to his education plan. A handful of the people at the IEP are going to pow-wow and figure out what his day will look like. After that, I'll meet with them and we'll make changes, if needed. He qualified for ESY (Extended School Year AKA summer school) so he'll have 40 minute sessions 3x week.

2. Per #1, I have the sudden urge to go and purchase school supplies.   Seriously, I can smell them. The smell of new notebooks, crayons, and pencils excites me. I'm positive the supply list for kindergarten is longer than it is for preschool. HOORAY!

3. AJ put his coil back on his own head yesterday! It was a random thing that I happened to witness. Total awesomeness.

4. We're seeing a HUGE decrease in ripping off the whole kit and kaboodle AKA cochlear implants and glasses. HUGE. In fact, I cannot remember the last time he went to pull the whole thing off.

5. AJ brought me a spoon and a Frosty the other day. He had gone in the drawer, grabbed the spoon (which is not new), grabbed the Frosty off the table, and brought it to me in the living room. When I asked what he wanted, he signed "open". For him to put these two ideas together, pardon me, three ideas (I want to eat the frosty, I need a spoon to eat the frosty, I need an adult to help open/access the Frosty) is HUGE.

6. AJ is officially signed up for his challenger baseball league and hippotherapy (horse-riding therapy) over the summer.

7. AJ had an evaluation with the SLP Guru who is the co-founder of the intensive therapy program he attended last fall. She was very impressed with his progress!  She observed AJ eating with his own SLP, and we talked about his trunk, balance, sensory needs...we talked about it all. She is amazing, and I am so thankful we get to check in with her at least once a year.

8. AJ is doing a much better job of waiting for his food.  Last night, when he was clinging to my legs as I was trying to move around the kitchen, I told him to go sit in his chair, and pointed in the direction of our kitchen table. He walked across the kitchen, into the dining room, and climbed in his chair. Hello Receptive Communiation. Oh how I love you.

9. I made Pillsbury brownies the other day. Yep, right out of the box. They were DELICIOUS.  They tasted just like homemade. I won't be buying those again anytime soon though. Between hy hubby, his brother, and myself, they disappeared very quickly.

10. AJ was denied speech therapy through his state insurance. Currently his primary is Jeremy's insurance and the state serves as a secondary. He is getting to an age/stage in his therapy career that getting services will be an increased challenge. Part of the challenge being that he is doing so well. For now, AJ's primary is paying for speech 1x week. Well, he's seen twice a week. Once for feeding, once for speech while he's in the pool. I'm not giving up speech in the pool. Sorry peeps. It looks like we'll be covered for one visit, and we'll be paying for the 2nd session per week ourselves. All in all, AJ's had 4 1/2 years of therapy, with, quite honestly, only minor hiccups. We have to be thankful for that.

Sunday Sermon

2011-05-15T08:27:00.000-05:00

Last night was the first night I've really slept in over a week. Stress and uncertainty do not allow restful sleep. At least for me they don't.  I'm sure you won't be surprised when I say a lot is going on right now.

1. AJ has been growing at a merely INSANE rate. He's fitting into 4T (one pair was even a 5T with the waist rolled!) pajamas, 3-4T shirts and 3T pants. This is crazy. He has never, ever it into clothes that were the same size as his age. Just last summer he was wearing 18 month shorts! I'm trimming his fingernails at least once a week. His sleep patterns are a bit off, with lots of napping. While this is a GREAT thing, it is also a novel thing. We are not used to him growing like this. It's a whole new experience for Mom and Dad.

2. With the growing, comes the tighteness, rigidity, and spasticity of his cerebral palsy. Grr. Despite some rough days, and some really rough days of walking, he has not stopped walking. We only had one day of tylenol for the pain, which is good. When he tightens, we increase massaging his legs and entire body, we put him on the treadmill, a lot, we take him to the park to climb (and naturally stretch his muscles), he wears his TENS unit, and we pray. A lot. For some reason when you are in the middle of the tighteness, you feel like its never going to go away.

3. I lost one of AJ's tennis shoes, with his $600 orthotic inside of it, the other day. Can we say, panic mode?! Jeremy found it hiding behind one of AJ's curtains (they are thick and reach the floor). WHEW. Of course, he is growing so fast, I've noticed he's just about at the point where the orthotics are too small.

4. AJ had an appt with his orthopedic surgeon two weeks ago. He was thrilled with how AJ looks. I do believe he even said the word impressed. Best news I'v heard in a long time. Follow-up is scheduled for 8 months. I love it when they increase the time between follow-ups.

5. AJ has been enjoying his pool therapy. Let me rephrase-totally loving his pool therapy! He receives PT and Speech together in the pool. Yes, my child with a cochlear implant has speech in the pool-while he can't hear. Makes sense right? We are jumping on the bandwagon and going to use the aloksak bag method of allowing him to hear in the pool, wearing one of his implants. In short: you put one implant in a waterproof bag, place the coil on his head, cover with a swim cap. He absolutely loves the water and this child has NO FEAR. Scary for Mom, tons of fun for AJ. You know, the usual heart attacks boys give their mothers....

His body immediately loosens when he hits the water. It is so amazing. Since AJ already thinks he's a porpoise, it would be great if he could just live in the water. They work on things like rotation (it is very hard for him to rotate his body to the left), strengthening...they do it all. I often have a hard time as his therapists call his name, and he doesn't respond. Aloksak bag, here we come!

6. A few weeks ago AJ's PT and I had a chance to chat during his pool therapy (her student was treating AJ while we were chatting). The words baclofen pump came out of her mouth. My reaction was typical, asking factual questions and becoming very quiet, very quickly. As we were leaving, a young mother with three completely normal children kept staring at us. AJ was extremely upset he was done swimming, and continued his pathetic and LOUD wailing in the locker room. As she left, she gawked one last time and I asked her if I could help her with something. She backpedaled-stuttering "No" as she walked around the corner. As we left the building, AJ continued to wail and I could not walk/run fast enough. It is amazing how awful a complete stranger can make you feel. I already frustrated because he was wailing, then for people to take notice and give you that "Whats wrong with your kid?" look, I just lost it. The emotional erruption regarding the baclofen pump happened once I hit the car and was hidden from public.

A baclofen pump is a round pump, the size of a hockey puck, that is placed under the abdominal wall. A catheter is fed (inside his body) from the pump around to his spine, to administer the medication, which would decrease his spasticity. The continuous medication tends to work better than say an oral dose. I relate it to insulin shots vs. an insulin pump. AJ already has tibia torsion and the concern is now with his increased growing, whether his femur will begin to grow incorrectly due to his muscles being tight and turning it in. Femur issues could lead to hips issues....are you overwhelmed yet? I am too. You can check out the pump HERE. Ironically, the baclofen pump is made by a company that also manufacture insulin pumps.

My mind would not allow me to process another surgery, much less something the size of a hockey puck protruding from my child's abdomen. My very small child's abdomen. I complete shut down, which is why there was no "Hey, were getting a baclofen pump for AJ" post on this blog. Since the original conversation, I agreed to a meeting with his physical medicine doctor and his physical therapist together to discussion the pump at length. Although (and I just have to add this), his physical medicine doctor's first reaction was that his sensory system can't handle it right now. I'm not going to lie, that was my first thought too. Whew. We'll see what happens.

7. When Jeremy finished school, I decided I wanted to look into going back and earning my Bachelors. What started as a call, purely for general information, led to my enrollment and my first class beginning the day after Jer's ended. Ok! I am pursuing my Bachelor of Arts-English through the University of Phoenix online. AKA I wanna be a writer. It was, dare I say, easy until two weeks ago. This past week I found myself angry and bawling at 2:30am finishing a paper. What was I thinking?! I'll keep plodding away, and keep reminding myself that a new class begins in two weeks.

8. As you may remember, we applied for Family Support Program funding and this year, we qualified. A very long story short, all of AJ 's items were approved including......an iPad 2! We are so excited!!! I will write more in another post.

9. A few months ago we had a parent-teacher conference for AJ which left us with the options for AJ for the next school year. Another year of preschool (this would be his 3rd year) or kindergarten. We, honestly, hadn't thought of kindergarten as an option-yet. Alas it is. I had a meeting with AJ's awesome teachers late last week and we pow-wowed about AJ's options.   It was a great meeting and I think we are all leaning toward the same option.

10. Why did we meet? Because AJ's IEP is tomorrow. This is the first time, EVER, that only his school staff will be present. Which knocks our number of people at the meeting to 14 (or around there).   Well actually, I think that might be the same, since we are taking away outside and have added school staff. Oh well, you get my point. Because AJ's cognitive delay is, uh-hum, is what it is, we are doing a re-evaluation at this IEP, and pulling in special education as well as the school psychologist. Fun times. I don't think Super Mom's are supposed to have vodka in their coffee mugs, but I'm seriously thinking about it.

11. Our house has been listed for 5 1/2 months. When did that happen? Seriously. We'll be closing on this house between mid-June and mid-August; due a unique situation that is our saving grace at the moment. However, with a few small trips planned, and our realtor getting married in another country, we got the ball rolling on finding a new house. Insert: mega stress. This process, of course, in true Heidi & Jeremy fashion, has gone all wrong.  With having one city to choose from, two huge dogs, and other issues, we're rather limited. Without boring you, lets just say we've found a house, we hope to offer on it next week, and pray in the meantime no one else sees it or likes it. Because it is our only option at this point. I have seen more mold, mildew, crooked basements, wet basements, and nastiness to last me a life time. I have cried more tears of uncertainty than I swear I did when AJ was diagnosed with all of his whoo-ha. We had high hopes and excitement for house-hunting. This was our first experience, and it failed miserably. I feel like screaming, "Could something just go right?!" We're keeping our fingers crossed.

12. AJ begins his challenger baseball league in early June. It is 5 Saturdays. AJ also begins his hippotherapy (horse-riding therapy) in early June. Dad's excited for the baseball, I'm excited for the horse therapy. During his IEP tomorrow we will be discussing AJ's eligibility for ESY (Extended School Year) for the summer. Clearly, he qualifies, but we'll discusss how many days and the duration. He was also continue all of his private therapies over the summer.

13. AJ ate a regular peanut butter and jelly sandwich-without the bread toasted-last week. This is monumental. He's over the toddler forks and spoons, so I'm off to the thrift shop today to see if I can find some salad forks. Regular forks are a bit too big but the salad size are just perfect for him. He's doing a phenomenal job in feeding therapy.

14. On Friday AJ had another evaluation with the SLP Guru. She was impressed with his progress since she saw him last. Lots of things are going to change. He's growing up, and its so fabulous to see him make so many gains. It truly makes me a proud Mom. And, truth be told, added more fuel to the fire that gives me the energy to keep doing all of this. I was just about on empty. Hooray for AJ!

Apron Strings

2011-04-16T18:15:00.000-05:00

My Gram used to tell a story about one of my uncles.

He had expressed his desire to join the military, even though he was legally underage. He stopped talking to her, in traditional teenager temper-tantrum form, and would direct all of his questions to Gram through his siblings.

Gram's boss noticed she was distracted at work and asked what was bothering her. She shared the situation; to which her boss asked, in his oh-so-pragmatic-voice, "So what's the problem?" She began to hem and haw and "Well.....well...," herself out of actual giving an answer as to why she didn't want her son to go into the military.

After a long pause her boss asked, "Anne?"

"Yes, Judge?"

"Do you have a scissors in your drawer?"

"Yes." (she pulls it out).

"Good. USE IT."

Later that night, during dinner, my uncle asks his brother, "Please ask Mom to pass the peas."

She passes the peas and says, "Please tell your brother I signed his service papers today."

It wasn't until I was eye to eye with a 4-pack of fruit cups that I realized I too have apron strings.

I know it sounds strange. Fruit cups? Yep. Most of the time the messes created at mealtimes don't bother me. There are few foods that bring out my sensory issues: oatmeal, the residue from cinnamon cereals, and fruit in syrup. Blech. Somehow, I started draining the canned fruit AJ eats before cutting it into pieces (when needed). I've avoided buying the fruit cups for a long time, for fear of the syrup. And forget putting them into AJ's school lunches. Oh no, we can't have that.

These little suckers seemed to be haunting me. I debated and debated. And then I bought them. After owning up to my tight-tight apron strings. The only way he's going to learn is by exposure. Believe me, I've already applied this theory to many other situations that my brain debates constantly.

It isn't about the fruit cups, ya know. While I consider myself as AJ's advocate, even I have faults and apron strings. Its been a few weeks since I began this post and I'm happy to report that AJ is doing just fine with his fruit cups a la syrup. He's also showed us that he is able to climb in and out of his carseat, safely, all by himself.

A few weeks ago I had the opportunity to join Jeremy on a weekend trip a few hours from our home. I initially decided not to go, for fear AJ would not do well with us being gone again after his rough reaction to our Hawaii trip. I decided to go. In addition, I did not write my in-laws a 12-page detailed instruction list. I gave them the basics (which they are already familiar with) for morning and evening routines and then, are you ready, wrote the words "HAVE FUN!" in the middle section of the single page of directions. Oh, and I hand wrote it-it was not typed. I think that deserves some sort of control freak brownie-points or something. I enjoyed the weekend and guess what, AJ had a blast with his grandparents. Another string snipped.

He's growing up so fast. And I'm doing my best to let him.

8am on a Monday

2011-04-04T08:16:00.000-05:00

It is 8am in the morning. I just ate a poptart for breakfast, curled up in bed with the laptop. The hubby is curled up in a comforter on the couch and AJ is still sleeping. So why am I not sleeping? Darn you Mommy-insomnia.

AJ's been sick for about 2 weeks. A cold has been going around his class and all the kids have had trouble getting rid of it. So I thought nothing of it other than-bad cold. Fast forward to last Friday and AJ takes a visit to the pediatrician. Bronchitis. Fast forward several hours, Mom and Dad have it too. We all get the same medication. I thought it was hilarious, given the situation.

We felt pretty good on Saturday night and went out with friends. Yesterday, we crashed and burned. I had been leading with "feeling better" points, but AJ took that over yesterday. He begged to go to sleep early and then bee-bops in and out of his room for several hours.

I tried to go to bed early last night, only to be distracted by the flashes of light that were outside our bedroom window. Quite the electric storm and lots of thunder boomies last night. I turned on a movie and fell asleep.

2am I hear giggles coming from AJ's room. I go in and change his pull-up and try to get back to sleep. More lightening. Restart the movie. AJ keeps on giggling. Jer wakes up coughing and the broken sleep continues. AJ's always been a great sleeper, so it is rare for him to be up, and we're used to not being woken up during the night. I don't do so well with broken sleep.

I kept AJ home from school today again in hopes he will be energized for school tomorrow. While he's feeling better and running around like a maniac, he's still sick. Jer stayed home too. Its rainy and ucky out. A good day for PJs, chicken soup, and movies.

It seems like we've all be sick forever...or at least AJ and I have been. We have not been so lucky this winter. I'm so ready for Spring and nice weather....

Why It Is The Way It Is

2011-03-23T15:40:00.001-05:00

A few weeks ago I spent the day with a friend. We picked her kids up from school and drove exactly 2 minutes. It might have been less, I don't remember, because we were looking for a house with black shutters. Anyhow, I remember thinking thats it? We're here already?

I've gotten some flack for being freaked out about showings for our house and how "OMG" I make the whole situation. To me, it is OMG.

When when we first decided to advocate for AJ to go to his current school, we started talking about moving. That was over two years ago, when we toured the school and knew it was the right fit for AJ. After taking our parents and showing them where the school was, and their comments being "Where are we going?" and "How much further?!" and "You can't drive this every day" we knew we weren't crazy.

We thought about it and thought about it and came up with reasons why we should wait. We knew it would be difficult. We knew it would be hard. We knew AJ's school district would eventually say "No, he can't go there anymore." We even packed up boxes one summer and planned to list/move in the fall. It didn't happen.

All of that stress transfers into today's stress of actually having our house on the market. And now I realize all of that avoidance has made it that much harder. I have no desire to approach our home district about schooling for next year, yet that's just what we'll be doing in May because of how the timing of all of this played out.

They say selling your home/buying a home is one of the biggest stressors in life. Um, yeah. I totally agree. Even though we already went through buying with this house, we have never had a house on the market and then looked for another house. And while I hear of stories of people who have had 173 showings and have had their house on the market a whole lot longer, I don't feel that makes our situation any less of a situation. Because I'm feeling the stress.

I have a hard time keeping our house in exact showing order. I have a child with an agenda a mile long and two gigundo dogs. The cat doesn't count, she's self-sufficient. This housing market is tough. I take the suggestions our realtor gives us and own them. I take the feedback we get and (after fuming for a few hours because I take it personal) work on what I can. There are some places I actually do draw the line. No I'm not putting in new windows, did you fail to notice the new furnace, boiler, flooring, bathroom, and kitchen cabinets?! Hint Hint!

I clean my little heart out and try to have our house look how it does on our online listing.

Hello. My name is Heidi Schmidt. I'm a control freak. Nice to meet you.

The little things mean something these days. If doing those little things will sell my house, well then heck ya, I'm down with that. (Did I just type I'm down with that?) Things that stress me out? Trying to juggle two dogs, who for whatever reason love to snooze in the living room, when you want to clean your carpet. Or your kiddo who purposely spills his apple juice 10 minutes before you have to walk out the door before a showing.

All of these things happened last night and this morning, just before our showing. The showing I learned about yesterday. Requested for right smack dab in the middle of the day. AJ's sick and I'm sick. Fantastic. I kept AJ home and packed all of us, dogs too, in my HHR and took off. Sadly, I left the horn at home. Its all we needed to complete our clown car. Seriously.

We ran errands and then I decided to drive back to the house to see if the showing had happened yet or not. Our realtor had once mentioned that we could park close by and just watch if we wanted, instead of leaving for the full-time. When I came back and realized no one had been here, we parked in the neighbor's drive and waited. I saw a car pull up with the prospective buyers and left.

Fast forward through lunch in the car, dropped AJ off at therapy, enjoying a Starbucks, picking AJ up and discovering the dog had jumped the fence (backseat) and ate a yogurt, we finally made it home. To where I anxiously ran in the house looking for a realty card. Usually the realtor's leave one so you know they've been there (I didn't know that, did you?). No card. I have no idea of the showing happened or not. Grrrrrrrrrrrrreat.

We've had several showings now, and each time my little heart thumps with all sorts of emotions. The more we have, the more anxious I am in hopes that this showing someone will make an offer.

An offer that would make our lives easier. I cannot fathom driving two minutes to AJ's school. There is a huge different between 2 minutes and the current 4 hours I drive each day. I can't even imagine how much time that would give me to do things without calculating how much time I have for insert activity here minus driving time. I am constantly turning down appointments for both myself and AJ because of driving times.

I miss seeing picture of my baby boy on the walls. We've been prepping to move for so long, I haven't a clue how long they've all been down to make our house look "homey yet generic". I'm ready for a new space to call our home. And yes I know our situation is unique and at the latest we'll be moving late summer, but my habit of wanting everything "NOW!" just like most of us is rarin' and ready to go. I know I know I know. But its still hard. And stressful. You can't please everyone, but you want so badly to please at least one person so that they'll like your home...which allows you to move on with your life.

They say its not personal. It is soooooooooooo personal. At least to me it is. This has been a long time coming and now, its just dragging. Like a ball and chain. Blech.

I'm picturing our new house with a big bow on it, with a note on the kitchen counter that says "Just a little something to completely change your life."

Love,
Your New House

Tuesday's 10

2011-03-15T21:15:00.000-05:00

1. Well, its OFFICIAL!  Jeremy earned his Bachelor of Science in Nursing degree! Two years of hard work and he's finally done. He did a happy dance last night...I'm sorry all of you missed it!

2. We qualified for funds through the Family Support Program 2011! We are thrilled! What this means: We can use these funds to purchase equipment for AJ, pay for respite care, even a fence for the yard! I was amazed to learn that funds can be used for everything from studs to drywall to equipment or toys for a sensory room for AJ. Once we move, we're dedicating a space in the house to AJ. A sensory/play room, full of all his equipment/toys/and bins o' stuff! We will be contacted mid-year to make sure he still qualifies (ummmmmmm ok) and to discuss how they'll distribute the funds. HOORAY!

3. Today was Gram's birthday. She would have been 91. Ironically, I ended up honoring her today. When I was in high school I worked at a retirement community. For a few years a group of us, from the same high school worked in the prestigous dining room of the independent living wing. When I saw the mass of media Gram had, I knew exactly where it should go. I donated her media collection, everything from Casablanca, Bob Hope Specials to JAG and The American President. Everything her generation will enjoy, and more. Happy Birthday Gram!

4. I saw an ambulance today, on the opposit side of the median and headed the opposite direction, stuck in traffic for almost a full minute. The ambulance was going "Lights and Sirens" which means its an emergency (not like being in an ambulance isn't an emergency) and that means you MOOOOOOOOOOOOOVE!!! Did you hear me screaming?!!!! Two cars sat in the right hand "turn or go straight lane" and they didn't budge. Turn right and bust a "U-turn" people! Ridiculous. I've been in the back of an ambulance, scared beyond belief, with my young son. And in that ambulance I had a brief conversation with the medical staff on how frustrated it is when people don't move. So this is my plea-MOVE PLEASE!!!

5. A classmate of mine from high school was tragically killed last week. While we weren't close, I still remember his smile. I don't think I ever saw him frown. EVER. He was a jokster, a class clown, but with class. At the tender age of 30, his death is a shock. Facebook has played a huge part in uniting everyone and sharing news. Our class lost another classmate during our Junior year. We've been through this before-and I think its a bittersweet bond our class shares.   I imagine Mike would say something like, "Life is short, people. Live it up!"

6. I'm anxiously awaiting information regarding a challenger baseball league. I read about the league last year in our UCP newsletter and we figure AJ is big enough to participate this year. Exciting!

7. All good things must fade, right? We had two weeks of "YAY! Botox!" and then AJ started growing again over the weekend. He's having a bit of an issue walking and is super tight. Sometimes I secretly chant to his brain, "send the message to loosen the muscle, send the message to loosen the muscle." Apparently his brain doesn't have ESP.

8. No Katy Perry, I'm sorry to say I never feel like a plastic bag...drifting through the wind. Sorry.

9. AJ has used a tricycle over the last few weeks at school. Last week, when the weather seemed warm enough to be outside with a hat/coat, I pulled out his tricycle. He's sooooo close to riding on his own. I'm thrilled he gets the concept, now we just have to teach him how to pedal independently.

10. I've been researching locations for AJ's birthday party. Let me say, the rates for a birthday party at a water park are insane. Insane.   For just a few hours of swim time, a cake they provide, and a small space. I think we're going to go with a different plan.

Naturally

2011-03-14T14:35:00.000-05:00

Last night Jeremy and I watched a few shows from our DVR list, one of them being "Off the Map". If you haven't seen it, its the newest creation from the minds of those who created Grey's Anatomy and Private Practice. We said we wouldn't get sucked in. We did.

The episode was called There's Nothing to Fix. {You can watch it by clicking on the episode title} While there are always multiple story lines, one in particular sucked Jer and I further in.

A set of new adoptive parents brings their baby girl to the clinic. Something is wrong, and they aren't sure what. The parents share how they've traveled in a group and everyone else's baby is perfect, and they can't even get her to burp. One blood test later, the child is diagosed with leukemia. Options: return her to the orphange or keep her and deal with the leukemia. The parents forge forward, until the mother is drapped in a gown and mask and someone hands the baby to her. She freaks out and leaves. The mother decides she doesn't want to parent, so they ask the clinic to call the orphange. Before the orphange comes, the father is found next to his daughter and pledges to be her father, even when that means divorcing his wife. He picks the baby girl up and knows exactly what his purpose in life is.

Now, set aside your thoughts about my corny review, and realize I just about bawled myself right off the couch while Jeremy said "Awwwww," aloud.

I don't think parenting comes naturally to all. I really don't Clearly, this woman was a good actor because I wanted to reach through the screen, punch her, and scream this baby neeeeds you.

One of the questions I despise hearing is "How do you do it?"

I think I've changed my answer to this question. It used to be "You just do." For some it is that way, for others it is not. Parenting is hard enough. Parenting special needs, and multiple special needs is a whooooooole different ball of wax. I chose to be a parent. To me, thats very black and white. Either you are a parent, or you don't want to be. Black. White.

As soon as I saw my son's referral photo, he was my son. Plain and simple. I took on the duty of getting him home as soon as possible. If that meant filling out a billion forms. Fine. If that meant interviews. Fine. If that meant visiting him in a foreign country twice. Absolutely. We were fighting for him even before he was in our arms. We've always felt a sense of urgency when it comes to AJ.

When he was diagnosed, that only made us fight harder. Ugh. That mother character from the show is still rubbing me the wrong way.

When AJ was placed in my arms for the very first time, I knew I was meant to be his Mommy. Walking away has never been an option. No matter what, we keep loving. We keep fighting on his behalf. Because to us, its natural.

What's He Doin'?

2011-03-06T21:03:00.003-06:00

Physical Therapy
AJ had another set of botox injections a week ago. Both in his left leg, hamstring and calf. To read about the use of botox with cerebral palsy patients click HERE.

This was his second set of injections and I was a bit unsure, considering we never figured out how well the first ones worked. After seeing his PT last week, I'm thrilled to report that the botox is doing its job. It seems the dose was just right, and loosen him just enough. Too much and he'd be more woobly than he already is. Now is a critical time, where we need to keep him loose and are once again using Kinesio tape on his left leg to deter his leg from rotating in.

After a lot of back and forth between AJ's PT and his CP doctor, we've also added UCB orthotics to his apparel. Instead of taking him in to have a new UCB molded, therefore billing insurance, yada-yada, his PT thought maybe there was a way to take apart his AFOs (that we had stuck in a drawer) and use the bottom as a UCB.

After consulting with AJ's orthotists, we took his old hinged AFO (like this one):

(Image from here)

and took them apart. By using the bottom piece, voila-UCB.

(Image from here)

They are working well. AJ remembered what they were and when we only put the one piece on his left foot, he picked up the other piece and handed it to me, raising his right foot. Apparently, he likes to match. While he doesn't need both, they must make him feel balanced, and its certainly not harmful for him to wear both.

Botox usually lasts 4-6 months, but with AJ's super high metabolism, his will last around 2 months. This is a critical time for consistent physical therapy, taping, the UCBs and using his TENS unit, treadmill walking. Basically whatever we can do to keep him loose and encourage proper movement/alignment while he's nice and loose. It is amazing to feel his hamstring loose instead of feeling like a rope.

Occupational Therapy
AJ is doing a great job pulling his own zipper on his coat up and down with the help of a small keychain (bigger surface to grab). We are dressing in standing every morning, after we pick out our own clothes of course. Some day soon I hope he'll start to hold on to his dresser instead of me!

He opened his door by himself this morning, so I'd say we've met that goal. He's also started opening the screen door, walking out to the porch, turning around and slamming the door in my face. Lovely. I'm actually thrilled he's doing this. His use of a fork is much improved and his cup skills have just skyrocked. He's showing an increased interest in Mom and Dad's big drinking cups. Oh boy. He's now able to lean over the bathroom sink (its kitchen height-so this is a challenge) and reach the knobs for the faucet. More like touch them. I give him another week and he'll be able to turn it on himself. And yes, I actually am excited about this.

We're still working on stickers. Why the boy insists on crunching them in his fingers I don't know, but we'll keep trying. He actually doesn't try to eat them or destroy them anymore-so thats progress.

Feeding Therapy
We're working on what I call Fair Foods and Sides. AJ's had hot dogs, like any other kid, cut up and then cut up again. He graduated to the dog, cut into regular slices. Now we're on to eating a hot dog in a bun. He blew me away two weeks ago, when his feeding therapist reported he bit into both the dog and bun-together. Just the week before we were separating the two to try and get him used to one at a time. We'll be moving on to burgers on buns, chicken sandwiches, corn dogs, and any other type of mash-up foods that we can think of. In addition to that, we are working on vegetables of all different textures. Its definitely not a taste thing, its how its presented to him. Adding cheese sauce to things like broccoli or cauliflower helps AJ manipulate the food and break it down easier.

We are increasing AJ's sessions with his feeding therapist (who is an SLP), adding one session per week where we will work solely on SPEECH. During our last visit with AJ's CP doctor, she voiced her deep concern for re: speech therapy for AJ. While there is nothing big enough to show up on AJ's MRI, there are definitely some short circuits going on. He is severely apraxic. While he is, clearly, understanding and his receptive language is exploding, he has no way to turn it around and respond...turning the input into output. And he wants to!

School
AJ had his first tear free week last week. HOORAY! I'm so proud that he's approaching novel activities with less protesting. He gets super excited when he sees me packing his lunchbox because he knows that means he's eating lunch at school. I was a bit worried how he'd do after being off for five days before going back last week-and he did just fine. HOORAY!

We'll be having our parent/teacher conference next week, which will be chalked full, believe me. It is an important meeting, with lots of information to cover. It feels like an IEP, just with less people. We'll be discussing his upcoming IEP (in two months), ESY, next year, and I have a typed outline updating his school staff on all he's doing outside of school.

Neurology
We recently saw AJ's neurologist and received the "all clear". He'll stay on the same medication dose for his Keppra and we'll follow up in a few months. He was pleased with his walking/stability, his head growth, and he interaction during the appointment. While at the appointment, his neurologists asked how he was doing socially. To which I replied "horribly". I shared that AJ's CP doctor and I had had the same conversation, at length, just the week before...where she literally said my child was "socially akward."

{We know}. I'll post more on this later.

CIs
AJ's repeatedly taking of his coils. All the time. It has become a huge problem, and by the end of our day has tested all of our patience. That's all I'll say at this point.Well, this weekend he didn't do it as much, so I guess I will say that. We saw his audiologist at the end of February and were again, not able to get an audiogram. We'll try again in a few weeks.

Weight/GI
AJ weighed in at 27lbs at the neurology office, which was super exciting. He's fitting into 4T pajamas, 2T and some 3T pants (rolled), and 3T shirts. We haven't seen GI for almost a year and I'm starting to wonder what they'll say when we go in May. AJ needs to take a complete vitamin and I cannot get him to take them, AT ALL. Note: The gummie vitamins are NOT complete vitamins. I have crushed with a pill crusher, crushed it to smithereens with a mortar and pestle, mixed it into yogurt...and he KNOWS. He just knows. Sigh. I will keep trying, but until we are on regular regimen of vitamins, we continue to give him the supplemental drink- Kid Essentials. He's eating, he's growing, and that's all we can ask for....

I can't think of anything else at the moment!

The F-Word

2011-03-01T12:24:00.005-06:00

I decided to finally post this...because as with most things in our life that have to do with AJ-ignoring it won't make it go away.

Ellen, one of my favorite bloggers (and whom I frequently link to) wrote this post a few months ago. She kindly gave me permission to borrow her post.

The "f" word in my life is AJ's future; it's not something I talk about a lot. On purpose. Looking that far ahead unsettles me. The more I keep trying to envision what his future might be like, the more anxious and depressed I get. For the most part, I've set my sights on the present of AJ and what he is doing, rather than what he might do someday. It's been a good thing for both of us. A healthy thing.

I don't have my head buried in the sand. We have already determined guardians for AJ and continue to work on other logistics of his future. But the thought of AJ in a home for the disabled? It makes me cry. I am tearing up as I type this, and I've had to stop a couple of times. My mind goes to bad places when I think of it.

AJ in need of a special home?

AJ without me and Jeremy?

How could we do that to him?

Who would protect him and take care of him like we do?

No, he could never go to a home.

But what if it were the right thing for him? He'll need to be independent.

Would he be able to change his clothes himself or would there be someone to help him?

GULP. How will he communicate his wants and needs?

What kind of friends would he have?

What do those homes look like on the inside, anyway?

What kind of job would he get?

How could I not kiss him every day?

How often would we visit?

And so on and so on. My mind spirals off into all sorts of irrational thoughts. And I know they are mostly irrational, given the fact that AJ is four and a half years old and still has lots of growing to do and progress to achieve.

There is a home for adults with disabilities near a store I frequent while AJ is in school. A group of residents would come in sometimes; a mix of adults with mental disabilities. I'd spy on them the entire time as I'd walk the aisles, watching them talk, laugh and enjoy themselves, while shopping with the help of their aide. I felt glad for them.

A few days after I read Ellen's post, I was at the store. And so was the group of residents. As they were checking out, I literally hid in the back of the store. Bawling. Thinking about Ellen's post...about AJ's future. Picturing AJ as one of them.

The truth is, I'm not yet at the special-parent developmental stage where I can think of this. It's still too painful. And yet, what's helped me help AJ is researching things that could benefit him. While we celebrate each and every one of AJ's small successes and moments, the fear of the future is never far away. My child cannot communicate-effectively-to anyone-what he needs or wants. THAT, is scary as hell. While we jokingly refer to one of AJ's PT goals as sitting on a bar stool with his friends in college, I wonder whether or not he'll be in college.

The constant back and forth is what drives this fear of the future. I have digested and accepted that my son is Deaf and has Cerebral Palsy. It has been years since that was introduced to my brain. But AJ's recipe for life? Its FULL of ingredients. That seemed to be optional (even non-existent) in the beginning. He has this, oh now this, and well, this. Adjust. Readjust. Adjust again. Repeat. All of it makes me want to get off the merry-go-round and puke every now and again. It never seems to stop. All of these ingredients make constant changes to his future.

And for someone to say, "Oh, he'll be fine." You don't know that. No one knows that. Fine is not, and never will be a word in my vocabulary. Because AJ deserves more than FINE. I want him to have an extraordinary future, not just a "fine" one.

Dollar Dino's

2011-02-24T12:38:00.001-06:00

One of AJ's recent preschool units was on Dinosaurs. I stopped in the local dollar store to see if I could find a bag of small dinosaurs to sort.

Well, I hit the dino jackpot!

While I didn't take pictures of all of our activities in process, I did take some.

Laundry bag:I set out the bag of wooden dinosaur cutouts (see 1st photo) as a reference for the shape of a dinosaur. I drew a dinosaur with a Sharpie-freehand.

Carefully, I cut on the inside my marker lines-cutting through both

sides of the bag-which made 2 dinosaurs.

We dipped the poly scrubbers (1st photo) into fabric paint and

made spots on our dinosaurs.

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Foam Circles:
We used the green, yellow,and purple circles for a balance activity.

I placed two of each color on top of each other to give them a little dimension. Place them on the floor and stomp from each circle. Note: Save the circles and for future use with a homemade game of Twister, dice, or another activity, such as making a circle frame craft with your child's picture for his/her grandparents . I thought this package was great with the variety of colors...for $1!

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Stamp:

The stamp looked like a dinosaur footprint to me!

(Look at him use his left hand!)

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This came home in AJ's backpack one day-they made soap dinosaur eggs! It took a good few days to use up all the soap, but at the end AJ had a pterodactyl!

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Not Pictured:

*We decorated our wooden dinosaur cutouts-we had plenty leftover for future use. Idea: Tie their tails together to make dino-garland.

*We sorted small dinosaurs by the number of feet they had.

*I printed out dinosaur coloring pages and cut the sponges into small circles. We dipped the sponge circles into paint and made spots on our dinosaurs.

*We played with 3 different dinosaurs (play size-also found at the dollar store) and felt their different textures, weights, etc.

Food Ideas:

Macaroni & Cheese with Broccoli Trees-What herbivores eat!

Speckled Chocolate Easter Egg Candy-Dinosaur Eggs

Dinosaur Fruit Snacks

Dinosaur-Shaped Chicken Nuggets

Chocolate/Vanilla Pudding Swirl-Mud/Swamp

Click here for more cool food ideas...I think the "swamp mud" sounds awesome!

Tuesday and Thursday's 10

2011-02-24T10:55:00.001-06:00

1. We seem to have a lot of people stalking our house. Like, slowing down and passing very slowly. Now, if only they would call and schedule a showing. We've been looking at houses online again and have a lot of new listings. Exciting! Our house looks so bare...I'm starting to miss pictures of my little man and our families on the walls.

2. Last week was a total tease, we had 50 degree weather for several days. This week, we were hit with more snow. Our area wasn't hit as hard as those around us, but its still snow! It is supposed to be an early spring. How about an early early spring?

3. AJ and I both have wicked colds. His has turned from a head cold to a chest cold. Poor thing. We're full steam ahead with humidifiers, even a pot of water on the stove (our house is super dry) and Vicks vapor rub. I kept him home yesterday, in hopes of kicking this thing to the curb, only to find out he does not have school for the rest of the week. 5 days off, with a sick kiddo who doesn't like to cuddle, doesn't watch movies or cartoons, and gets bored very easily. Fun. Surprisingly, he's in a very good mood, he just sounds like he's hacking up a lung when he coughs.

4. We've gone a full week already without a bedrail on AJ's bed. Another big boy moment. He's stayed in bed every single night. He's a CP kiddo, in a regular twin bed (in size and height), with no bed rail. Amazing. That is a smile behind the blanket....

5. For a while I was making our laundry detergent (FelsNaptha, Borax, Washing Soda). It was super cheap to make , and I'm a stickler about how much I'll pay for laundry soap. I started grating the bar soap in my food processor upstairs, but mixing everything together downstairs because the dust from the powders lingered and really bothered me. I couldn't breathe. After doing some research, I found out the dust from Borax is toxic. Lovely. No wonder I couldn't breathe. I follow Bonnie's blog and kept reading about Shaklee products. Actually, I think I was really stalking her blog! After asking her a million questions about the products, doing my own research, and cleaning my oven with oven cleaner (which I will NEVER do again), I'm now a Shaklee customer. No more mixing my own stuff and not being able to breathe. I absolutely love their stuff. I'll be writing more in another post.

6. Jeremy and I have been going on regular date nights. It's been heavenly. We've been trying to think outside the box instead of going to the same restaurants or just going to a movie. Last night we ventured to one of those restaurants where its changed hands and names a billion times in the last few years...the food was great and the atmosphere was perfect.

7. Is there any produce that is grown in the USA?!! I overheard a conversation the other day that tomatoes in the stores are picked green, then sprayed with CO2 to artifically ripen them. EWW. I don't know if thats totally true, but it was enough to totally gross me out and make me hate buying produce from the store even more. Spring is coming...with summer following and that means farmer's markets. And maybe the CSA I mentioned in my last post. I don't know about you, but I think grapes from Chile taste gross.

8. AJ signed "bath" so beautifully to me on Wednesday night that I cried. There seems to be a correlation between motoring him through the motions while teaching him signs that really connects things for him.

9. I'm staring at a package of Pampers sitting here on the counter (no we aren't announcing anything, they are part of a gift) and its making me realize two things: AJ truly is no longer a baby and reminding me of how much I love that stage in life and wish another baby was in our future.

10. This past week was the one year anniversary of my Gram's death. I really have no idea how its been a year already. We honored her memory by having dinner with my family and telling stories. Some our own, and some of Gram's. I found myself at the best bakery in town yesterday. I'm not sure why, I just ended up there. She'd always insist on stopping there after her dental appointments. Which totally makes sense, right?! It was just across the street you know. She'd be super excited to know they put a new location 10 minutes from her house. Their apple turnovers are "The Best", she'd say. Since it was evening, they were out of almost everything already. Including Gram's beloved apple turnovers. But, thats ok. I got ham and rolls instead and walked out with fond memories of my Gram.

Tuesday's 10

2011-02-15T22:36:00.001-06:00

Since I so look forward to checking two of my favorite blogs on Tuesdays to see their top 10 thoughts, I'm jumping on the Tuesday bandwagon too....

1. Despite my brave attempts to stave off replacing our garage door opener, I think it finally bit the bullet. It usually gets cranky during super cold weather and forces us open and close manually (horrors), so I wasn't surprised when it wasn't moving. It was the grizzly grinding sound coming from the motor that was just awesome. Super-Duper.

2. Today was AJ's 2nd rockin' day at school. Three novel activities were tried...with no tears. I LOVE good days. They fill my heart with such joy.

3. I've been researching local farms that participate in CSA. With our house on the market, we won't be planting a garden this year and I'm anxious to keep a nice stock of healthy veggies and meats in the house. I'm also looking to add more fish into our menus. We all love fish, we just don't seem to eat a lot of it. Anyone have yummy recipes? Share!

4. We returned from our trip to Hawaii just a few days ago (blog post coming soon). My carry-on still smells like coffee and coconuts. It's awesome.

5. I need to figure out a way to spread out AJ's appointments. Period. We work with over 25 people on his team and somehow, appointments seem to get stacked together all in a week.

6. There seems to be a Steve Carrell marathon on lately. Which usually means if I watch said marathon I'm bound to see Paul Rudd too. Love them both. They make me laugh hysterically...

7. Was Valentine's Day really yesterday? Despite being exhausted from our trip home, I stayed up late on Sunday night, frosting graham crackers, adding candy hearts for stamps, and handwriting each of AJ's classmates names in the TO and his name in the FROM areas on the edible "love letters" that were his valentines this year. I made three batches of rice krispie treats and created "Hershey Kisses" by using kitchen funnels and then wrapping them in foil...complete with a little piece with a msg from AJ sticking out.
Am I insane? Probably. But since AJ's protest during our vaca hindered him and Grandma from doing these projects...I didn't want that to ruin anyone else's V-day. And we all know how I/we feel about his school team. Jeremy and I spent the evening working on a project for his current class and watching our loaded DVR. I am NOT complaining...we certainly could not have topped our week+ in paradise.

8. Speaking of classes, Jer only has four weeks left of his class and then he is officially done with his BA. I'm trying to plan a special celebration for him (shhhh don't tell him) but nothing seems to live up to his amazing accomplishment.

9. AJ has this obsession with ICEE cups. I found them one day, on a whim, at the Dollar Store. Odd. But, its a bold flavor, its cold, and packed solid in cups. Easy to eat and perfect for his decreased oral awareness. I know, horrible nutrition choice. Lets just get over that. I now have little hands that stand at the fridge and slam the refrigerator door after you've attempted to open it, and reach upward toward the freezer. Sigh. Its becoming quite a problem and I fear an ICEE strike, via Mommy, is coming.

10. I felt completely relaxed when we left Hawaii. Slightly stressed while traveling home. And broken-hearted when I saw my sweet little boy's face when we pulled in the driveway. His uber tear-stained face, complete with snot drippings and eyes shut, screaming for his Mommy and Daddy. I'm super thankful we had the opportunity to go on this vacation, I'm super glad we went, we had an amazing time, but he wasn't ok. He wasn't fine. And it broke this Mommy's big heart to see the culmination of his week of meltdown. Yesterday's jet lag brought crabby to this household and today brought uber stress. Relaxation, where did you go?

Do You See What I See?

2011-01-30T21:32:00.000-06:00

It is 5:30 on Saturday evening. I'm sitting at our kitchen table, staring out our massive picture window in our dining room. I've been sitting here since 5 o'clock, when I suddenly realized it was still light outside. I see pretty white snow, thick solid icicles hanging from the gutters, willow trees, a massive field, and cars passing to and from on the 4-lane highway that runs past our house, each with white and red twinkling lights.

If you were sitting here with me, would you see the same things?

I would venture to say no.

Not all of us see eye to eye.

AJ's life is filled with countless professionals. Physicians, Therapists, Teachers, and More. Almost sounds like a store title. Pick one from this aisle of expertise. Complete with tags declaring a guarantee that aisle 2's ideas won't line up with aisle 5's. And lets not even start on the the other departments.

And here I stand, with a shopping cart, ready to fill it with anything and everything to help my little man succeed in life. How do I choose between whats just icky, processed generic fit-into-a-mold information and natural, certified organic information?

I suppose it would be safe to assume that my shopping cart would be where everything melds together and ends up looking as beautiful as Sunday Dinner. The truth is that sometimes I'd rather just be a 5-year-old with one foot on the base and my hands steering the cart...as I zoom through the store of professionals not stopping to look back.

All these different hands, different opinions, different backgrounds of expertise. All with the best of intentions. A big kettle of brew and I'm standing with a giant spoon.....

I've struggled over the past few weeks to inform, condense, and make sense of our recent happenings. Which means a lack of blog posts. After telling my husband I was having trouble with posting on the blog, his answer was this:

"Life is grand. We're going to Hawaii in 4 days. End of story."

Quite a post, hey?

Our house has been on the market for a month already. Of course there is drama surrounding that...of course.

Last week I received a call regarding AJ's transportation to school that completely threw me for a loop...and made us do some serious thinking. AJ's made it through two winter ear infections, and is still walking despite his continuing growth spurt. A recent follow-up with his CP doctor allowed me to look at things from the "CP side" of AJ's life. It was a refreshing and eye-opening visit. It was another appointment where I left in tears. GOOD tears, knowing he is in the best of hands and that she's truly in his corner.

I've been busy prepping for our vacation, which is finally upon us. Printing detailed instructions, packing, and doing last minute errands. We are so excited to spend time, just the two of us. While we are gone, AJ will be partyin' it up with Grandma Cindy.

AJ's doing ok at school. We've had some bumps in the road recently. His therapy sessions are either fantabulously great or horrible. There has been no middle ground to speak of. We're beginning to think about his next IEP, which will be in the Spring. AJ's tall enough to get off the toilet by himself-which is really freaky when you're not expecting him to come around the corner. He can sign "open" and is emerging with "push". He's holding his arms up and vocalizing for "up". He's doing this waving thing...although I'm not sure what it is for certain. I'd like to think its waving.

He's displaying a not so great behavior of taking his implant off...and pulling his glasses off. Which means he's maturing, but the behavior is not so welcome. We're looking at adding a therapy to his schedule and doing a disco-shuffle with all of his therapies. I'm not sure how this is going to work out yet.

Like I said, big shopping cart and giant spoon.

But you know what?

We're going to Hawaii in 4 days...

Loose Reference

2011-01-19T10:36:00.000-06:00

I found myself overcoming yet another bout of writer's block today. So after dropping AJ off at school, I'm home, for about another minute or so, and I've been writing.

I'm sifting through the early chapters rearranging, adding, subtracting, editing, and using the printed copy of our old website as a guide.

And kicking myself. Oh, Heidi. I can't even follow it. It's so sugar-coated. Sugary sweet. Like syrup all over the counter and you just can't get your rag, soaked with hot-hot water to clean it all up. I didn't write about how anything felt. Was I numb? Where we numb? Probably. Tricking ourselves into seeing past reality and our ever present fears.

I read things like "He can sleep through anything!"...followed by a cute smiley face, and groan. Oh its so wonderful! It's like envisioning myself hosting a party, not really wanting to host a party, putting on a fake smile and being an oh so wonderful hostess.

Blech.

That doesn't mean our parenting journey has been all bad, because it hasn't been. I just wish I would have been honest back then. Both with the website, and with myself.

So, I'm using the website printout as a loose guide. Very loose.

There will be no syrup in this book.

Just Jello.

Amberwood & Canister Thoughts

2011-01-04T22:04:00.004-06:00

Since my eyes are starting to do googly tricks while painting, I figure its a good time to stop for the night.

Last year we made our first trip to IKEA down in Illinois. We met up with friends and happened to wander -ok, I saw the sign and gasped, causing Jeremy to hit the breaks and begin checking me over for medical issues. Oops. Anyhow, I saw a Tuesday Morning sign and we were soon browsing the aisles.

I found three short pillar candles, brown in color, with a divine scent of Amberwood.

(like these)

I'm a lover of patchouli & amber aromas, earthy smells with depth. I knew exactly what I wanted to do with them. And besides, they were a steal. We were just beginning to prep the house to move. We had decided to keep the dark blue/light blue paint colors in our room, and accent with cream/chocolate/black. Ok, I had decided. Jeremy chipped in by saying something like Uh-Huh Ok Whatever. His approval usually isn't a stretch, unless I suggest anything yellow or pink. Those are an automatic veto.

I came home and placed the candles on the white shelf in our bedroom... still wrapped in their protective plastic wrapping.

Today, I opened all three. It was rather ceremonious to me, which can be considered to be a good thing or a bit odd as we are talking about candles here.

Each day that goes on, that I am in hyper-overdrive move mode, makes this whole thing more and more real. I mean, I unwrapped the candles. That have been sitting on the shelf for over a year and a half. Things are getting done and while I'm completely exhausted, its beginning to look amazing.

My mind is full of so many memories. Memories of when we first bought this house. How we didn't know where to begin, and had no idea what we were doing. No.idea. Jeremy has always been good at demolition, be it baseball bat or box cutters (that would be knocking down things and tearing up carpet) and I've improved on the bringing-it-to-life role. I remember standing in the kitchen with my Mom, chatting with excitment about the new kitchen curtains she was going to make for us. Which lead to the wine colored walls that I was ~~swearing at~~ battling tonight, but ya know. Tastes change.

We purchased our first set of new furniture for this house and spent all night painting the living room the night before an adoption homestudy.  The night before that I suckered a friend into painting our bedroom that dark blue/light blue combo. We failed sorely at "fixing-up" our bathroom for several years before we bit the bullet and hired a contractor to do the gut and remodel. I spent hours painting AJ's nursery dresser while my Grandmother supervised and we chatted. We slowly but surely found the yard again. We've made friends with lots of plumbers and other handy-skilled workers. We've replaced pumps, roofs, I could go on.

We've learned a lot from this house. We've learned about quality work and quality products. That blood red is never a good choice of color for you living room walls. That hard work-done right-pays off. We've learned what its like to own a home and everything that comes with it. We've worked with some amazing people and are a whole lot more experienced than when we started. Trust Me. We are not gardners and most certainly not tree-lovers! That we won't ever buy cheapy-cheap faucets or cheap paint and most importantly, won't cut corners!

...I find painting relaxing. I should say I find it relaxing most of the time. I prefer to work without using painters tape.   Cheap paint is just that, cheap. Buy a good brush and good paint and save yourself some insanity and money. I spent a good hour tonight doing the brushwork above the countertop lip in the kitchen. Without tape. And loved every second. It forces me to take it slow and steady, concentrate, and keep a steady hand. It brings Zen. I know. I'm insane.

As I was painting, the design for our next kitchen popped into my head. The object(s) of inspiration?

Canisters. There has been a set of canisters in our basement since we moved here. They belonged to Jeremy's paternal grandmother and somehow they had ended up here, at his maternal grandparents home.

For years he's been asking me to hang on to them. Their base color is white, with a beautiful black paisley pattern with accents of bright blue and green. I never paid much attention, except the last few weeks I've been looking at them on the shelf each time I go downstairs. Hm. Weird.

And tonight, they made their debut. Suddenly my head was filled with ideas of a faux-granite countertop, black with a gloss finish to really fake people out on the granite thing, the large dining table in the basement black with a flat finish with chairs painted to match with grey velour chair pads. Blue walls?   Green walls? What shade? And a pendant light at the sink. A glass bowl....no a dish...with decor balls? No... Definitely the brushed nickel finish and oh I saw those drawer pulls at Target, those would be perfect..............................................

My mind was running wild! It kept running, into new ideas for a living room. How I literally want the same bathroom in our new house. And then it hit me. Other than AJ's future room, never before had I thought about what our new home would be like. While the decor/furnishings really don't matter, it sure is fun to dream up ideas. I had forgotten how much I love this sort of thing. While I'm no Genevieve, I do like to dabble in this house stuff.

It sure beats constantly thinking of therapy appointments, goals, and stressing over everything.

And those candles? Oh, those are going with too. I'm sure I'll think of just the place for them in our new home.

Noodle Ornaments

2011-01-01T11:06:00.000-06:00

AJ and I made noodle ornaments for his Grandparents this year for Christmas. I got the idea from an ornament I made in 3rd grade...that I still have.

Supplies Needed:Macaroni Noodles/Any Small Variety of Dry Pasta

Shape to Trace

Ribbon

Hole Punch (not pictured)

Craft Glue

Spray Paint

Cardstock or Construction Paper

Scrap Piece of Cardboard

Trace and cut your shapes & Punch your holes

Apply glue and smudge it all over with your fingers...

Call your craftyman...

Place macaroni on glue. Try not to cover the hole you punched.

Carefully flip to and repeat on the other side.

Allow time for the glue to dry.

Adults: Spraypaint one side at a time with your color of choice.

Metallics work really well.

Add ribbon and a year tag, and VOILA!

Here's to A New Year

2010-12-31T17:49:00.000-06:00

Today certainly did not feel like the last day in December. Our weather has been more like spring the last two days, with today's temperature hitting 50 degrees and melting all of our snow.

I'm not sure how a new year is upon us.

Already.

2010. We are not sad to see it go, to say the least.

My sweet Gram left us on Ash Wednesday. AJ's 2nd CI surgery (May) seems like it was lightyears ago and was relatively uneventful considering the events that followed. Jeremy's scary diagnosis of multiple sclerosis threw both of us completely out of our element...as if we had such a thing to begin with. Let me assure you, when you are 28.75 years old, you do not think about such things happening to your life partner. AJ's birthday was a blur, as was his 2nd CI activation. Each attempt at a mini-vacation was soured. The pressure to move became overwhelming. And lets not forget AJ's new diagnosis of epilepsy.

Each year, Jeremy and I hope that this will be our year. Not for smooth sailing, or that easy-button on the Staples commercial (nice but not realistic). For a few less bumps, for a break or two, for less drama, less stress, less tears.

Despite all this, our marriage grows stronger. We laugh at each other constantly and worry about each other just as much. We're growing into our own groove as a family, which has its ups and downs. Friendships have grown stronger, some have grown weaker. We have reached the depths of being so emotionally drained, that we can't function. We hold each other up, grieve with each other, and support one another. We take care of each other.

I grew a bit more into my own this year, and continue to do so. Jeremy's career blossomed and opened new doors and opportunities aplenty.

AJ has grown and tolerated all that goes on around him like the SuperStar he is. He just amazes me. He wakes up every morning with a clean fresh slate smile that can take on the world. Despite my heartache about certain things, AJ has made tremendous progress.

I find it so hard to believe that he'll soon turn 5. 5 years old. When did that happen? He's lost his baby face and now grins at me with total boy naughtiness glimmering in his eyes. He's everywhere, and into everything, just like little boys should be.

What will 2011 bring?

2011 will bring us a new home. Around 4am on the morning after Christmas, it suddenly hit me that it was our last Christmas in this house. With the realtor coming last night, it feels like everything is suddenly happening, very fast.

We are hopeful Jeremy will remain symptom-free. We are hopeful AJ's communication skills will increase and that he'll continue to make such terrific gains in his additional therapies. We are hopeful our move will go as smoothly as possible and that we'll find the right house with ease. We are hopeful for some positive changes in our lives!

I hope to finish my book sooner than later and stop holding back what I really want to say. Contrary to popular belief, I do have a filter. I rather large and thick one...depending on the context. I am also hoping to take more time for myself and figure out what exactly I want to be other than/in addition to being AJ's Mom. I'm looking forward to turning our new house into our home. Jeremy is looking forward to his dartball tournaments and finishing his BA (very soon!) and moving on to his Master's.

2011 also brings our 10th wedding anniversary and our first long vacation EVER to Hawaii. We lay in bed most mornings and sigh at the thought of just sleeping all day...with palm trees swaying in the breeze.
I'm still not sure how we've been married 10 years already....

Happy New Year!

Wordless Wednesday

2010-12-29T14:38:00.000-06:00

Blue Christmas

2010-12-28T20:27:00.002-06:00

I've really been slacking on the posts, haven't I? I would love to promise that will change, but I can't. Rest assure our craziness has not deterred me from thinking of awesome blog posting titles and subjects....

The kitchen cabinet redo was finished the week before Christmas and looks absolutely amazing. We are so used to having open cabinets, that it sure is different opening a door to look for something. I spent most of last week engaged in a mental battle of what had to be done/finished before Christmas vs. what needed to be done to finish the house. It was quite the battle. Even so, I was still asking Jeremy to take bins down to the basement on Christmas Day.

Jeremy and I managed to get the Christmas cards out before Christmas this year...which is quite an accomplishment. I swear, I pick THE putsy-ist projects...but they always turn out amazing. We spent many nights, while watching our DVR'ed shows, cutitng twine, fishing line, and putting them together. Thanks, Honey.

Christmas was full of surprises, lots of love, and blessings....

AJ is on winter break this week...with a smidge of a cold still lingering. At least he's not the booger monster like he was early last week.

He's doing well at school, with lots of new gains. He recognizes the "Good Morning" song they at the beginning of each day and knows what is expected of him re: taking his picture from his teacher, standing up, and placing it on the board. Without.being.prompted. Oh how I wish his toddler group teacher at CCHD could see him now. Huge progress.

He no longer needs a sensory break during his morning routine and the time between bathroom trips has increased dramatically. Were talking 2 hours here people. Yesterday marked 1 year that we've been potty training. I was told it would take a year. Right on. Can you imagine we've been at this a whole year? The school staff has a photo of the potty next to the door...which he now goes and grabs independently to tell them he needs to go potty. Soooo exciting. Now, if we could just poop on the potty consistently, that would be marvelous. He's back up to snuff with using the PECS during his speech time, which is another huge gain. He had regressed quite a bit after coming back from Intensives, so we are all thankful he is back up to where he was, choosing between 2-3 pictures.

While I'll detail his PECS book more in another post, here is AJ's 1st PECS book:

Vision
It was brought to my attention that AJ's having trouble with using his vision using his PECS. He seems to pay more attention to the book when it is coming towards him, not in front of him.

Sigh. When you have a child with multiple needs, you pick your battles. AJ wearing his glasses on the way to school is one I chose not to fight, until now. When it was brought to my attention that the staff was seeking exercises to help AJ increase use of his vision, I suggested that I start by keeping his glasses on in the morning. He was such a good little boy the first day we tried it last week, he didn't try to take them off at all. I was so proud. The following days, not so much.

You see, its quite a process to get all of his head equipment on and getting it to stay put is another feat. When he pulls his glasses, he ends up pulling his implants off, even with the wig tape, and I end up pulling over 7 times to reassemble him, which doesn't work out because then the tape doesn't stick as well and I'm using very inappropriate language on the way to school. Not exactly the language experience I am supposed to be providing for my kiddo. I am hoping that by waking up his eyes earlier in the day, he will use his vision more appropriately and we can avoid adding vision exercises to his already packed schedule. His ophthalmologist has assured me multiple times that he has no other issues other than near-sightedness and a slight astigmatism.

Cochlear Implants

We are scheduled for his 6-month audiogram for his left implant (the new one) tomorrow. Since we don't have an audiogram for this ear yet, I'm anxious to see where he is. That's right, we have no idea where he is hearing on the left. No dB markings on an audiogram chart. Don't ask why we don't have an audiogram yet. We will be getting one tomorrow, or I'll be bringing him in every week until we get one.

We seem to go through a fair number of ear hooks for his implants. So I was not surprised when the sitter reported she lost one and was panicking. I pulled out our stash and placed another one, only to have it fall off. A small piece of plastic below the "blinking light" is broken off, so a hook won't stay on. I've switched to his backup and will take the other into the clinic tomorrow...along with a coil that I found stuck to the underside of the airconditioning vent in the floor in AJ's room. Huh. We lost that eons ago.

AJ is growing like a weed. I mean, GROWING. To the point of pain. This growth spurt, between ages 4 and 5, is the worst until he's in his teens. GRRRRRRRRRRREAT. He's eating us out of house and home, and he's only 4 1/2. Yes, he's a boy, and boys typically eat you out of house and home, but he's setting a record. I'm sure of it. Despite his growing, we've managed to keep him walking. Deep massages, his TENS unit, long baths, vibration, and lots of home PT is helping a lot. So are naps. He's been on the treadmill and his ball A LOT here at home. You can just see his body relax when he's stretched out on the ball.

We are thankful that we received a quick response from insurance and have been granted more PT sessions. His PT did a 90 minute session two weeks ago and it did WONDERS. Our normal sessions are 45-60 minutes. In January, all of his PT sessions will be 90 minutes. We are working towards better balance in standing and in walking. If he's tight, it is extremely hard for him to bend down or bend a leg to put on his pants, etc. He lacks the balance required for those types of activities. Insurance thinks he's doing so well, they'll stop covering him soon. Which is amazing. We had to stop and think of what we wanted to put as our goals for AJ on this last submission to insurance. The goal is for him to be discharged and only have to see his PT intermittently for periods of growth and spasticity.

Our new sitters are PT students, so it thrills me when I can ask them to do something with him and they know exactly what I am talking about. BONUS. Or they notice when he's tight and needs lengthening. I am just in heaven with these ladies.

AJ loves working on the trapeze bar, yep my kid with CP can use a trapeze bar, and the gigundo therapy ball at his therapy clinic. I've caught him down in the basement a few times, which is...awesome.

And he's tall enough to do this...

OT
He's doing well in OT too. We are still working on dressing, which is slow-going. He's attempting to put on his own socks. AJ is trying so hard to open doors and is able to pull his zipper pull up and down on his own. is also able to hold his bowls/plates with his left hand now. See?

Feeding Therapy

Feeding therapy is going well too. We've been using a VitaStim unit under his chin (pictured below), which works wonders. It speeds up his swallowing and gives him a lot of oral awareness. The VitaStim is a lot like his TENS unit, using electrical stimulation, but on a smaller area. He's acutely aware of when she turns it up too. It's quite interesting to watch him. We are working on getting him to eat hot dogs with a bun (with the dog not cut, so he has to bite it with the bun) and revisiting toasted sandwiches. He lost interest in sandwiches for a while there. He's drinking from an open cup so well, its amazing. He's even able to hold it up even while he's not taking a drip. He'll take a sip, then continue holding his cup up, then take another sip, then put it down.

Today, he had a fantastic session. I mean, it just might have been the best EVER. He self-fed himself a toasted PB&J sandwich, pears, and raisins...without putting his fingers in his mouth to push food to the side...he used his tongue and we could hear beautiful active chewing. His feeding therapist was thrilled, as was I.

Auditory Therapy

We had our best auditory session EVER last week. I'm am very anxious to see how he does in the booth tomorrow. He turned to novel sounds at 6-9 feet distance and really engaged with his therapist. While going through one of the eval's, we discovered he was making some great progress. Considering I leave most of those sessions frustrated and in tears by the time I start the car to leave, this was major progress.

Dental

AJ's teeth, miraculously, are cavity-free. Unfortunately, he still hates the dentist. He still has extremely weak teeth, which we need to keep an eye on. I was quite pleased with his new dental resident, which was a relief. His thumb sucking is pushing his teeth in and out, so we're doing our best to keep his thumb out of his mouth. When I asked why is causes a problem, I also found that not having your top and bottom aligned also makes it more difficult for a person to bite and chew. Well, AJ doesn't need anymore challenges in the eating department, so we're keeping a close eye on him. As he gets older, it keeps decreasing, so we're thankful for that.

Seizures

AJ is so much more alert and aware, its shocking. The seizure medicine is doing its job. I've also seen less and less staring at his hands and self-stimulation. And although I still have to turn my eyes from the right side of the road when I pass where he had his seizure in the car, I am thankful he had it and that we now know about his epilepsy. School reported one short, stare-off-into-space seizure a few weeks ago. Jeremy and I think we have seen a few, but it is so hard to tell. Is he ignoring us or is it a seizure?

I've placed a call to his neurologist's office to schedule another EEG. Ugh. I am not looking forward to that. I wonder if its inappropriate to bring a bottle of wine with me.... The EEG itself is painless, its just a bunch of wires stuck on AJ's head. Its the sleep deprivation, for both of us and his sensory overloaded screaming during the ENTIRE test that does me in. Oh Well. We'd rather know what his brain activity looks like now anyways.

Communication & Cognition

I have repeated the phrase "AJ is non-verbal" over 10 times, to both friends and strangers, and I think its helping it sink in. Even so, I'm devasted. We have given so much faith into hope, hopes that the implants would bring him up to speed in the two areas he was lacking...and here we are grieving again. I find myself asking if the grieving will ever stop. Does that sound dramatic? Perhaps to you, but it is a real question Jeremy and I ask each other a lot.

AJ's inability to communicate what he wants often leads to AJ screaming and crying at the top of his lungs (and his cry is dramatic, pathetic, and oh so pitiful) and me going through the rolodex of his typical wants/needs in my head. When I don't stop on the right tab, it leaves both of us, all too often, on the kitchen floor sobbing together. He's frustrated. I'm frustrated and frustrated for him. I feel like a failure. My patience is tested day in and day out. Lately, I've been short on it.

There are moments where he leads us to what he wants and I'm able to translate for him (ex: leads me to microwave or stove: Mom, I want something warm to eat). He's communicating better at school for potty time and food times. But what about the rest of a human life? Leading me to the refrigerator is not going to get him very far.

We're working with the PECS, and teaching him power signs, because we all believe he's capable of signing what he wants/needs. We are working closely with his school staff, who are as always, simply amazing. We're doing what we can to help him. But sometimes, it is just too much.

His cognitive delays were never more apparent than at Christmas. Where I was delighted to see him sit on Santa's lap at school, but heartbroken when Santa asked him what he wanted for Christmas and....silence.

Jeremy and I believe Christmas is Christ's birthday, as He is the reason for the season (I really don't like that saying as it sounds so cheesy, but there it is). With that said, we do the Santa thing too. Most of us remember Christmas from when we were young and love to watch our own children discover the magic and wonder of Santa and all his wintery friends. You go to church, you do the Christmas program, you explain the nativity, you pray, I even had plans to make a Happy Birthday Jesus cake. There was no magic, and a Mom with a very broken heart. A pity party? Perhaps. But one that I'm still feeling a few days past Christmas. Yes AJ is 4 1/2, and of course I wouldn't expect him to walk out Christmas morning, gasp and run into the living room "Mommy Mommy Santa came!". But the teeny tiny moments I guess I was expecting, like even the moments we experienced last year when he was younger, were null. Our company was great, the food was fantastic, but inside, my heart was crying.

After AJ finished the Intensives in October, AJ's PT and I were discussing how AJ is a great example of how treatment works. She went on about how we were great parents and have worked so hard with him, that this is why is doing so well. She then went on to say that most special needs parents hit a wall, a point where they are just so overwhelmed, they just can't anymore. She still hadn't figured out how I was still doing it. I'm not sure either. But I think I've finally reached that state. So much to juggle all at the same time. *Deep Exhale* I just wrote this huge post over the course of two days and I'm exhausted just writing it.

Listen To Your Chocolate

2010-12-15T22:43:00.000-06:00

Lately our lives, and house, seem to be taken over by those plastic bins. There are rows and rows in our basement of said bins. You know, the ones on sale every week in the store ads, with the popular color choice right now being red and green...

We are 3 days into our kitchen cabinet redo. Meaning, a very experienced cabinet dude is here. After a year and a half of staring at our cabinets without doors on them (with all so wonderful intentions to paint everything ourselves), I caved and listened to my chocolate. He has stripped, bleached, stained, and sealed our existing base cabinets. The new crown molding is up, and makes me sigh every time I walk into the kitchen. The old scrolly-looking piece over the sink, while appropriate for a 50's kitchen, is now gone, which makes the kitchen look a bit more modern. The new drawers and doors are downstairs waiting in all their glory to be installed tomorrow and Friday.

In the midst of the cabinet redo we've had a handy dude here putting in new storm/screen combos on some of our windows, changing outlets, and doing other various things. Today there were four different people, besides me, mulling around our house. I was just the cruise director.

Roughly 95% of the contents of my kitchen contents are in...you guessed it...bins. Totes. Call them what you want. And yes, these are of the red and green variety. We've done a lot of eating from paper plates, takeout, and meals that don't require cooking on the stove top. Everything is everywhere, in every room, except the bathroom, which seems to be the only room I can keep just the way I like it. Hm.

This week has been rough. Ok, thats an understatement. I'm finding it hard to fit in SuperMom's schedule into my life. I know, SHOCKING. I'm finding it hard to focus on just one thing. This has been the first week where someone, other than myself, Jer, and Grandma, has picked AJ up from and taken him to school. My mind is so focused on getting this house ready to list that there isn't room for much else. I felt horrible as these big brown eyes looked at me standing in the doorway this morning..."Mom, why aren't you coming with me?" Sometimes being AJ's "translator" is heartbreaking. I know my baby boy too well sometimes.

So this afternoon, when AJ came home with a rash and the sitter mentioned he was picking at his ears, I hopped in the car and drove him to urgent care. We don't mess around with the ears. Sure enough, he has an early infection in his left ear. Thank you gut. You come in handy oh-so-often. He was also tested for strep, which came back negative.

I definitely could have continued on with my day without AJ's medical drama, but it wouldn't change the fact that the show must go on. It has been ridiculously hard for me to watch other people mulling around here doing work. Things that I may not be able to do, but for some reason my brain tricks me into thinking, or rather goes into SuperMom mode, and I think I should be doing. Things are stressful enough around here, you can imagine my reaction more chaos.

After I put AJ to bed tonight, I took a long hot bath. I thought about how difficult the week has been, how everything is misplaced. Messy. How life is messy. How I've finally identified my strengths and weaknesses, learned what I truly can and don't have to do all on my own. How I absolutely love my small Christmas Tree that sits on the corner of my bathroom vanity. How I absolutely love Gram's tree sitting in my living room, in all its grandness. How amazed I am that so many things are getting done around here all at once. How thankful I am for skilled workers who know what they are doing and while I'm stressed while they are here, the final product relieves a different type of stress. This process won't last forever, but we're at a point where we must keep going. I'm trying not to do it all-all at once.

AJ gave me the sweetest smile when I put him to bed tonight. He asks to go to bed by leading me to his bed, standing at the foot, looking up at me with those big brown eyes, and slowly reaching for his implants, gently pulling them off. As he snuggled his pillow, he gave me that smile. The smile that reminds me of why we are living and packing our lives in bins. Why we are having windows and cabinets done. Why we are moving in the first place. For a sweet little boy who deserves everything we can give him. There is light at the end of the tunnel.

And I, for once, am listening to my chocolate.

Why Turkey Why

2010-12-04T17:59:00.002-06:00

I suppose I should post about Thankgiving while I still have a picture with pumpkins on the blog. Never mind that today is December 4th.

Thanksgiving was a very stressful day. For those around us, it may not have seemed so, but we've gotten pretty good at playing the game and putting on the smiles.

I thought it would be less stressful not hosting. I was wrong. I had forgotten what it feels like to hop-skip-jump to different places on a holiday. Especially with a kiddo. While we were at our first stop, AJ did well, although I was watching him like a hawk. He was staring off a lot, which caught my attention right away and I quickly became nervous. While I don't think he had a full seizure, I do think there was some abnormal activity going on. Since he has had a seizure while on medication (about 2 weeks ago-at school) I was on high alert. I guess you get that way when your kid has seizures. Despite my anxiousness, it was lovely visiting with family and friends...and petting puppies.

We left late (if anyone ever leaves one place to get to another on time, please share your secret) and picked up my Mom for our next stop. Where I swooped AJ into the bathroom pronto so I could give him his seizure medication (late-which made me upset). He took it well, and I though all would be well with the world. Not so. AJ ate two bites of mashed potatoes and proceeded to have a complete sensory meltdown.

In the middle of his meltdown, a sweet little girl came over and asked me a question. She's definitely in her "Why?" stage. Her mother had warned me beforehand that she wanted to play with AJ, but she explained he needed to eat first. The girl had asked her mother why AJ didn't talk. She had reminded her that he talks with his hands instead. Kudos to that Mom, by the way.

The sweet little blond girl walked up to me and asked, "Why doesn't he talk?"

I answered (feeling like I was lying or not telling the whole truth because AJ only has 5 signs he uses), "He uses his hands to talk."

"But WHY?" said the little girl.

To which I said nothing and fought some major tears that were welling up while AJ was screaming in my lap.

Her mother distracted her and I was off the hook.

What do you tell a sweet young child, who is full of innocence, when they ask such a complex question? It was simple in her eyes. I want it to be simple too sister. My heart was screaming to act how her face looked, like she wanted to whine, "Well thats not fair!!" No, its not. I felt like saying, "Yeah, I wanna know too why he doesn't talk. Lets sit down on the floor and play Candyland and solve the world's problems."

AJ was done, and we left just as quick as we came...or so it felt. Despite the meltdown, it was nice to see friends we hadn't seen in what felt like forever and laugh, even if it was just a little.
After I dropped my Mom off, the tears started. I missed Gram so much that day. The emotion hit me like a ton of bricks and I was not expecting it. The day was hard to begin with; but adding a new routine for "The Day", AJ's meltdown, the why question, and the guilt of not spending more time with Mom, I was one cooked bird myself. I did not expect the day to go perfect. Because they never do, and that's ok. But my heart was hoping for some calm and peace and an opportunity to give thanks. To not have to worry or stress about anything for just a little while. Instead, I was stressed. Jer was stressed. I missed cooking and hosting. Jer missed my cooking, our hosting, and the leftovers.

I am thankful for my loving husband, my amazing son, our parents, my closest friends, AJ's team, AJ's ability to hear and listen, massages, and Starbucks. I am thankful for so much. But the stress? Eh. Sorry stress, I'm not thankful for you....Oh, and pumpkin pie. Love me some pumpkin pie. And Twilight. Can't forget Twilight.

Her First Nomination

2010-11-27T08:14:00.002-06:00

Just as I was thinking about closing up shop on this blog...my hubby tells me I was nominated for The Top 50 Mom Blogs on Babble.com. Who? What???

Yep, he found the list on Ellens' blog...you can find me here. **Click on the alphabetical tab, its easier to find.

The Top 50 have already been chosen...but I still feel awesome about being nominated.

It is an odd feeling to put your story out there and not know who, if anyone is reading. I guess someone (outside my immediate circle) IS.

Thanks Peeps!

Its the Most Emotional Time...Of The Year

2010-11-18T18:12:00.001-06:00

This time of year is always rough for Jer and I. We don't even need to talk about it, we both know how the other is feeling.... This year is no exception.

The beginning of November marked 10 years since Jer's Dad passed. I'm not sure how that much time has lapsed. I do know that I am blessed to have a part of him in my life every day...as Jer has his Dad's personality to a "T". He makes me laugh, even when I don't wanna laugh. He reminds me not to take all things in life so seriously and that its ok to "piss on it" once in a while. As I just re-read the last sentence, I realize that you'd have to know Jer or his Dad to really get that sentence and see the humor in it.

A few days after Thanksgiving 2007 we learned AJ was deaf and my Dad was in the hospital. Five days into December 2007 we learned AJ had cerebral palsy and we lost my Dad just minutes later.

This time of year makes me think of all of those things...especially the people we've lost.

Gram had this insane obession with an appetizer I make...bacon-wrapped waterchestnuts. While she always called it rumaki (which is really bacon-wrapped shrimp), I never corrected her. She always looked forward to them and it was always the first thing on her appy plate. Finding whole waterchestnuts this time of year is always a challenge, but I'd go to 4 different stores to get them because I knew she loved them. I saw a bottle of chili sauce at the store today (an ingredient for this appy) and felt a deep sadness.

{I've shared the recipe for Bacon-Wrapped Waterchestnuts below}

Gram always insisted on yams, not sweet potatoes. There is a difference, she'd say. She taught me how to make them her way...and after that, it became my job to make them. She'd laugh at my commentary when I clean and prep a turkey ("Eww", "Gross", "Ahhh!"-when its slippery), "Blech", to mention a few choice words). She'd watch me closely as I made the cranberry jello mold. She never did notice I made it with sugar-free jello. Horrors! :)

She'd insist on a grandiose table setting, which always meant my Mom and I would be running around like chicken's with our heads cut off trying to make it just perfect. Gram would always tell us girls what a good job we did. That made it all worth it. Her famous apple pie was always made the morning of Thankgiving (right, Mom?!) and I swear I 've never tasted a pie like it. White Zinfandel (she'd call it ZinFondle) was a must, as was the green bean almondine. No green bean casserole!

When Jeremy came into my life, and it was clear he was staying put, she was determined to make sure he had enough to eat. It took quite a few years before I broke down and told her he doesn't like turkey all that much. Dark meat if anything. She took note and made sure Jer got his dark meat.

When AJ arrived, her Thankgiving meals were all about watching AJ. What she ate became less and less, she focused her energy on watching AJ eat and entertain us all. Nothing else mattered except AJ.

She'd be disappointed that I'm not hosting Thanksgiving this year. It was a very difficult decision for me to make. Although I do hope that in that disappointment, she'd understand why. While I have no doubt this year's Thankgiving will be wonderful, it will be different. I miss her every day and find it incredibly odd to talk about her in the past tense.

It is amazing to think of how well I knew her. If she was here, she'd ask how AJ is doing on his seizure medication, she'd ask him "When are you going to talk?", and call him handsome a million times. She'd be making sure I was prepping each meal her way and kindly enduring my constant chatter. She'd have the conversation with my Mom about the silverware and asking if she could help in anyway, to which the both of us would kindly shout "No!" She'd ask whether my book was finished. She'd tell us where to go in Hawaii on our anniversary trip next year. She'd tell stories of her island adventures...no doubt throwing in an embarrassing tale or two about me.

I will be forever grateful for the time I was given with Gram. While she won't be joining us for Thankgiving this year, I'm sure she'll be having her favorite appy and a glass of Zinfondle. Yep, I'm sure of it.

Bacon-Wrapped Waterchestnuts

2-4oz cans WHOLE waterchestnuts

1 lb bacon-uncooked

1/4 cup mayonnaise

1/4 cup chili sauce

1/2 cup brown sugar

Cut bacon strips in half. Wrap 1/2 slice of bacon around each waterchestnut and secure with a toothpick. Place in a shallow baking dish Mix mayo, chili sauce, and brown sugar. Pour over bacon wraps.

Bake @ 350 for 45 minutes.

Some New Things

2010-11-16T20:31:00.001-06:00

AJ blew raspberries on Saturday.

I know, to most, not monumental. But to us...it is. I actually had to physically stop, listen to the sound, and then look at his mouth to realize what he was doing...because he's never done it before. He continued down the hall, sputtering sweet raspberries out of his mouth all the way into the living room.

I heard them again yesterday, and today in the car.

One of his very first goals for speech @ school was to blow raspberries. At first, I thought it was such an 'odd' goal to have. I mean, really, who thinks blowing raspberries is essential to life? I knew why it was a goal, although it is a little funny to see the word raspberries written in regards to your child's education. It is a huge step in oral motor strength and a whole bunch of other things having to do with his mouth that I won't explain...but trust me, this is awesome.

He's responding to more and more verbal prompts...close the door, sit down, no (followed by putting the forbidden object back before I even motion for him to do so), climb up in your chair, put it down, bye-bye, turn it on, turn it off, I could go on.

He's decided that bathtub (sans water) is his new play area. Which rocks, because it means he's crawling in and out of the tub all.on.his.own multiple times a day and my PT brain is doing a happy dance all the while he's collecting toys in his new sanctuary.

AJ's breakthroughs are momentus. I mean, its almost as if Zeus is calling down to us with lightening and thunderbolts to get our attention-HEY! This kid is making progress. It is a gentle reminder of how sweet it is to not take anything AJ does for granted.

As we were heading home from feeding therapy tonight, I heard a sound from the backseat that made me slam on my brakes and turn around (no worries, there were no cars around me).

"AH-BEH-BEH"

Yeah. How awesome is that.

All of these new things, combined with an "AJ had a good day" report from school and a nice long hot shower have made this wicked crazy day end on a good note.

Family Match Game

2010-11-15T21:10:00.000-06:00

One of the first theme for AJ's preschool class was Families. I picked up this at Walmart one day (because Daddy likes Curious George and it was cheap):

And ended up making our very own Family Match Game!

I made a simple two column/three row table in Microsoft Word. I cropped as needed, then copied and pasted family photos into each space, sizing each to 2.5x 2.5 inches. Easy Peasy.

I printed each sheet twice...

Then cut them out...

Then matched everyone up to double check I had everyone present...

Then laminated them and cut them out. I place them face down, with the white side of the paper facing up, and AJ has to match his family and friends. We are working on a set of 4 right now (which means 2 people), but I made this with the intent to make it more challenging as we go along. I plan to add our pets and his school staff to this game too.

FUN!

School Experience Book

2010-11-15T20:50:00.000-06:00

I asked AJ's school staff to take pictures for this school experience book. They took pictures of each part of his day along with photos of themselves (thank you!). You'll have to use your imagination on this one, folks. The book chronicles our day with a story flow like this: We drive up to school...walk in the doors...there's Mrs. X...and there's Mrs. Y, and there's Z......then its snack time...then we eat lunch...then we have gym...then rest time...then Mommy picks you up...you get the picture. This book was extremely helpful when AJ returned to school after being out a week for Intensives. I also use it on Sunday nights a lot, to prep for the new school week.

I found a "school" themed pack of scrapbook paper in the $1 bin at Target last year and held on to it, knowing I would use it somehow in the future. I made the cover with scrap cardstock, scrap crayon printed paper, and a sticker I got on clearance (last year) for 25 cents.

Pumpkin Spice Scented Play Dough

2010-11-15T20:26:00.000-06:00

I found this recipe for homemade play dough. As if that wasn't exciting enough, the recipe included ideas as to how make your play dough scented. We've made the pumpkin spice scented one, I'm anxious to try the apple pie one too.

Homemade Play Dough

1 cup flour

1/2 cup salt

1 TBSP cooking oil

1 TBSP cream of tartar

1 cup water

Food coloring

Add-Ins: spices, glitters, etc.1 tsp or more

(add to your liking-I used about 2 1/2 tsp of pumpkin pie spice)

Measure ingredients into medium sized pot-mix them well before heating. Over medium heat, cook the dough, stirring constantly until it forms a ball. Turn the dough onto a board and knead until very smooth. It will be warm to the touch, but try to knead it until it becomes a nice, smooth ball. Cool. Store in a ziploc bag or plastic container.

JDRF Walk 2010

2010-11-07T13:50:00.001-06:00

This year, Jeremy formed a team for the 2010 JDRF Walk to Cure Diabetes. The walk was held at the zoo with the theme "Follow The Yellow Brick Road". Our team name was "Dr. Jain's Crew". We had quite a team, and despite it raining the first 10 minutes of the walk (literally, we crossed the start and it started to rain) it was a great day! Thank you to all of the walkers on our team, to everyone who donated, and to all of those who, like Jeremy, continue to thrive while living with diabetes!

Dr. Jain & Jeremy

Dr. Jain's Crew
JDRF Walk To Cure Diabetes 2010

To check out some awesome stuff JDRF has going on (like the artifical pancreas project!), click HERE.
To see a really cool timeline of how far treatment of diabetes has come and more milestones, click HERE.

Make-Your-Own Mud Pudding

2010-11-07T13:16:00.000-06:00

As I've mentioned before, AJ's preschool class has themes throughout the year. This last Spring (I said I was behind in posting, this is like way behind) one of the themes was The Farm. They also used the book Mrs. Wishy Washy. I did some searching on one of my favorite websites and found this:

Pudding in Baby Food Jar Recipe-Great to Use the book Mrs. Wishy Washy

Supplies:

1 box SUGAR FREE chocolate pudding

You must use sugar free or it won't turn out

Baby food jars (emptied/washed/dried)

Milk

*Optional: animal crackers

Measure 1TBSP AND 1 TSP of pudding

Place into jar.

Add 1/4 cup milk

Place lid on tight and SHAKE!

It will darken as it thickens...

Add some animal crackers...

Enjoy!

For the original recipe and a printout of the directions, click HERE.

Condensed Mommy

2010-11-07T08:05:00.004-06:00

I have about a hundred or so things to blog about. Instead, I'm going to try this bulletin point style.

Here goes:

-AJ finished the Intensive Therapy week like the rockstar he is. Jeremy was able to take off work and was there with us for his last day. I can't say it enough, I'm SO GLAD we did this. I'm working on a montage of AJ's therapy journey (its been 3 years), ending with the intensives. I'll post it soon.

-The Intensive experience led to the possibility of me becoming a Parent Mentor. I cannot explain how exciting I am about this. While I have connected with many, many CI families, the Intensives was the first time I saw other children with brain injuries...and their parents. I received some information via email last night, so I am very excited to pursue it.

-AJ eased back into the school routine with a bit of trouble. Not too much, but enough to make me anxious. By Wednesday he was back into the routine, and we were all relieved.

-I won the Flaky Mom of the Year award on Wednesday. I scheduled 3 appointments following his day at school. Didn't I say I would never do that again? That was a horrible day. Why? Because I totally forgot about the last appointment until we were finishing his therapy appointment and I screamed, "OMG he has CP clinic today." The day, unfortunately, deserves its own post, which will come soon.

-Our sitter is officially our sitter no more.

-We went to the pumpkin farm twice this year. Once on his school field trip and once as a family. Another post coming soon.

-I am thanking my lucky stars that the weather forecast predicts 50s this week. We are back to having me paint the house (the outside), so hopefully I can finish. I was really discouraged when I could see my breath and had to scrap the car windows last week.

-We have slowed down (not by choice) on getting the house ready. As always, AJ runs the show around here. I haven't had the motivation to do much of anything. Our plan is to list the house in January. Wish us luck.

-The dogs got baths. They weren't happy. I think we are the only people who go through multiple dog beds a year. I'm anal about washing them-constantly.

-Jeremy was in Indiana this weekend on a business trip. I'm so happy to have him home...even though he thinks he has strep throat and will be gracing urgent care with his presence this morning.

-AJ's doing well with his seizure medication. He was out of it on Friday, and school was concerned. After a panicked call to his neurologists nurse, I calmed and collected myself. He's had a heck of a week and he was probably just tired. Exhausted is more like it. AJ is allowed to be inconsistent, heck, he's been consistent a lot lately, so I guess I can see how that was concerning when he just didn't wanna. I up'ed his medication on Thursday, so I thought maybe he was overmedicated, but we'll see. We have a plan of action.

-I was thankful to return to the school routine and have a bit of time to myself. I met a friend for coffee and it was heavenly. I probably should have stayed home and gotten things done, but I treated myself instead. I'm looking into yoga classes near AJ's school, and am very excited to begin volunteering again for his preschool program.

-I'm still debating on whether or not to make our Christmas cards again. Seriously, this is quite a debate in my head. If I don't, that means another normal thing I used to do, out the window. If I do, I will spend hours picking the right design and hours making them, and do I really have time to do that? I should make the time. Seriously.

-From the Intensives we learned AJ could benefit from quite a few items of different equipment. We are working on purchasing what he needs: SPIO vest, treadmill, bolster, arm constraint, leukotape, I'll stop there. Merry Christmas AJ, here's your bolster. He has regressed a bit being a week out from intensives, but we are doing are best to keep up with the carryover. That darn foot is just my nemesis.

-AJ and I made and played with pumpkin spice scented playdough this weekend. SO easy to make and he loved it!

-AJ's on a typical toddler diet lately: chicken nuggets and grapes. Thats all he wants. So either he's going to be a spokesperson for a frozen nugget company, or he's going to become a grape. Oh! Then he could do the Fruit of the Loom commercials...

-We participated in the JDRF Walk to Cure To Diabetes. It was a huge success, despite the rain! Big surprise-a post coming soon.

-I've been driving around looking at houses near AJ's school. I fell in love with a Victorian near the college. Oh my. I parked and sat and admired it for 10 minutes. Sigh. As I drove down the street, its a street of all larger older homes, including other Victorians, and GASP, the park is at the end of the road. Can you imagine? At the end of the road! Not at last 10 minutes by car. I can't even imagine that. AJ and I could walk to the park. Yesterday my anxiety over moving took over my excitement, but today I'm back to dreaming of that house.

-I'm sick, just sick that there is Christmas stuff in the stores already. Ugh. Come on people, Thanksgiving is a great holiday. You need to sell more than an endcap of berry wreaths and turkey printed paper plates/cups. Lets not skip what we are Thankful for. Annoying.

-AJ is making great progress with his PECS. He's on Phase 3, choosing from 3 pictures. Another post to come. I made him his own book, so I'm anxious to show everyone how we did that. Someone introduced the phrase "Bridging the Frustration" to me. I love it. It is a bridge. I love seem him and and less frustrated. But I still want him to learn to speak. Just have to say that.

-Did I mention AJ has apraxia? Oh yeah. That's making it more difficult for his to develop spoken language too.

-We are looking into therapeutic riding for AJ. Hippotherapy (riding) and Aquatic Therapy were both suggested for AJ at the Intensives. AJ rode a pony this summer and absolutely loved it. It would be GREAT for his pelvis, hips, and TRUNK. Some of them charge, and of course most close for winter, but I've got the information so we'll be doing more research. We're also considering getting a pass to the waterpark we went to during Intensives. He had a blast and did so well. Its close to his school, and when we move, a few minute drive at most. So exciting.

-I have projects we did over the summer I still have not posted. Make your own mud pudding, Floyd our Fish, all sorts of exciting stuff.

Like I said, lots to post about.

Intense Progress

2010-10-28T16:57:00.002-05:00

Well, I'm exhausted. AJ's exhausted. And we have one more day until we can both collapse...although I'm sure he needs it more than I do at this point.

AJ has been participating in the Partners for Progress Intensive Therapy Program all this week. Partners for Progress was started by Rona Alexander, PhD, CCC-SLP, C/NDT and Linda Kliebhan, PT C/NDT. I've had a lot of questions about what exactly this intensive therapy week means/entails, etc. I made sure suggest a website for the program, which I was thrilled to hear was already in the works! For now, here is a tidbit taken from the brochure-I've added my own take on things in italics:

Partners for Progress (PFP):Is a non-profit organization dedicated to assisting children with special needs and their families in improving functional abilities for maximum independence, quality of life, and participation in home, school, and community.

PFP provides short-term intensive therapy programs which are designed to supplement community based or school based therapy programs by targeting specific functional activity, or by working through obstacles that may have caused a plateau or regression in function.

Short-term intensives are individualized programs specifically designed to meet the needs of the child and his/her family in moving forward. They include a combination of physical therapy, occupational therapy, and/or speech therapy and usually involve 4 hours or more of therapy per day over a 5 or 10 day period (we are doing 5 days).

Parents/caregivers and other family members participate as partners in short-term intensives, providing support, learning and developing carryover strategies and working through obstacles that impede progress.

Theraputic Philosophy:
PFP utilizes a combined therapeutic approach maximizing the backgrounds of the experienced staff. Neuro-Developmental Treatment (NDT), Sensory Intergration, Manual Therapy, and other theraputic modalities are combined, incorporating state of the art theory in areas of motor learning and motor control. Regardless of the functional outcome desired, programming focuses on buildng on the strengths of the child while minimizing problems/impairments that may interfere with progress. Short-term intensives may include emphasis on evaluating the effects of adaptive equipment for seating, mobility, or exercise, and other therapeutic modalities such as taping, compression garments, electrical stimulation, augmentative communciation devices, and splints/orthotics, including their role in programming and carryover at the completion of the intensive.

Staff: Rona and Linda ROCK. They've both treated AJ in the past. Oops, that was an adlib from me. Whoopies.

PFP was developed by Linda Kliebhan and Rona Alexander, experienced pediatric therapists who for over 25 years have provided direct treatment for children with special needs including short-term intensives throughout the United States. Both Linda and Rona are an intergral part of the planning, development, and implementation of the short-term intensive progreams at PFP. They are joined by other experienced therapists from Wisconsin and other areas of the country....

Documentation and Communication with Other Professionals:A videotape, (pictures), (Powerpoint presentation), and a written summary will be provided to the family at the completion of the intensive, highlighting the areas of progress and strategies for continued carryover. PFP staff will also be willing to speak directly with other professionals involved in regular programming for the child, when requested by the family.

======
While I won't get into specifics today, I will say that AJ is making huge progress. INTENSE progress. This week has most definitely been intense. For AJ, for me, and for his awesome therapists. There are a few kids participating that are out of state, and quite a few therapists that are out of state that have gathered for this week of therapy.

This experience has been life-changing for me as a Special Needs Mom. I am so proud of our little man. AJ has benefited from this program, and then some. I can't even explain it. When we started saving for the program, which is NOT covered by insurance, I was leary. Of course I knew it would be good, c'mon. It's Linda and Rona. But I wasn't sure how AJ would fit and how it would help him specifically.

I am SO glad we saved our pennies and were able to have AJ participate in this program. SO GLAD.

Comfort

2010-10-23T14:37:00.002-05:00

There seems to be a huge misconception that Jeremy and I are comfortable with everything that has happened in our lives in the last few years.

Let me clarify. NOOOOOOOOOOOO.

I've been thinking about writing a "What to say to someone when their life doesn't fit the mold, and then some" script. Seriously. I have come up with a few pointers, but not an actual script. Because another special needs parent may not want to hear what I want to hear, if that makes sense. But what I have gathered, in this "new-age" idea of embracing our children and pushing them not to their limits, but to their POTENTIAL, is that we don't want to be ignored.

I was raised to tell the truth, and while I fell short of doing so when I was younger (don't we all), I am quickly making up for that stint in my journey as a mom. AJ is complex. His story is not simple. It took me a good year to share his story in just one sentence. Add in that I am naturally a very detailed storyteller, you've got a motor-mouth on your hands. Most recently I've found myself refraining (I know, exciting right?!) from sharing things when people have made casual comments....

And it kills me.

I feel like I am portraying AJ as an incomplete person. This may sound wildly strange to everyone reading this, but its true. And then I thought about how I think part of my sharing AJ's story, with details, is my way of trying to help people understand. Knowledge is power, right? I dug further into my own noggin and realized that sharing AJ's truth helps me heal the wound that was created when no one told me what was going on with him.

Didn't I say I was going to talk about all of you? Gee Whiz.

It is no secret that sharing AJ's story, or anything, like "Hey, my kid had a seizure in the car last week and I called 911 on the side of the road," makes other people uncomfortable. But honestly, I encourage you to stop and sit in whatever words are spoken to you. Don't run, because you feel uncomfortable. Yes, I know it is shocking that I, the person sharing this devastating news, would realize that you are going to be uncomfortable.

But let's all think about this for a second. How long does your lack of comfort last? A few seconds? A few minutes? We may loom back into your brain every now and again, but do we dwell there? No. Be uncomfortable in that moment so that we, the people experiencing whatever was just said, can feel less isolated and less like a freak of the normal world.

People tell me, "We don't know what to say." Well, you can't fix it. So start from there. Don't try to fix it. But say something. At least something. "I don't even know what to say" is an EXCELLENT thing to say, if you don't know what to say. Why? Because you are aknowledging my world. Aknowledging my pain, my act of reaching out to you. Staring, or ignoring, crushes the heart. Ok, at least it crushes mine. Is it so much to ask you to be uncomfortable for a few seconds so I can feel some relief in numbers? I don't think so.

Being a special needs parent has given me a completely different outlook on life. It really makes me sad that I see so much selfishness...everywhere. It saddens me that AJ's "stuff" freaks people out. He's still AJ.

While I've posted before on how it is sometimes irritating to hear that this was "God's Plan" or His Purpose, or he won't give you more than you can handle...there is a reason that can be bothersome. I, as the person living this story that made you so uncomfortable for a few seconds, definitely feels like I've got more than I can handle. Those words don't act like magic fairy dust or ruby red slippers and make it all disappear. They don't make me feel better. Well, Heidi, you certainly have a crappy outlook on life, don't you? No, I don't. The Big Man Upstairs and I have been dukin' it out for a long time, and continue to do so. And no I'm not sharing that story.

Oh Heidi, you've never been on the other side. Well, yeah I have. I was recently in an uncomfortable situation myself. I was with an acquintance who clearly just needed to blurt it out and have someone there for her. I was uncomfortable. Really uncomfortable actually. I paused and then said "something"...and she started to cry. I recognized the type of tears that were flowing and stayed put as long as she needed me. We didn't say anything else to each other, we were just together.

That my friends, is comfort.