Surreal

Hello Friends.

It's been a while, eh?

I've been contemplating a post.  I suspect this is what happens often in the minds of bloggers.

The norm goes something like this...There you are, walking through the aisles of Target when suddenly a blog post title pops into your head.  The post begins to write itself in your head as you continue shopping, etc...

Except there haven't been any moments like that in a while.  I have so much to say, but no way to put it in any type of order right now.  So know this friends...it will come.

But I do want to share something with you...

Yesterday AJ walked into the bathroom and got into the bin of things I have sitting on top of the counter.  I heard something knock into the wall in his bedroom and went flying in his room only to smell something.  It was sweet, sultry, earthy, spicy, and delightful all at the same time.  But I couldn't find the source.  What IS that, I thought?

AJ had wrapped my perfume bottle in his blanket.

This may seem like a ridiculously simple event, but it speaks volumes.  At some point in my mid-twenties I became very practical about girly things.  My perfume collection narrowed to two, and has since narrowed to one selection.  I'm sure that perfume normally does not last as long as this particular bottle has.  It is the scent I have worn the six years AJ has been home.

For AJ, the scent coming from that bottle was his Mommy.  AJ is very sensitive and acutely aware of two senses: touch and smell.  Just as we carried AJ's baby blanket back and forth from Guatemala so the dogs could get used to his smell, AJ learned what his Momma smells like.  He couldn't hear me and couldn't really see me, he could only feel and smell me.

He smiled and giggled when I found the bottle.  He picked it up and handed it to me.

Translation: Here Mommy.  I love you.  This is you, and I love it, so I love you.  Don't ever change it ok?  Ok.

Sometimes I have to pinch myself and make sure that all of this is real.  That this little boy is here, mine, and that the past six years have really passed.  Moments like this make it so new.  I have to pinch myself in realizing things will soon change.  My heart aches for Mimi to smell me too.  Does that sound weird?  I know it does. But it makes so much sense to me.  I'm trying to think of the perfect thing to leave with her when we visit.  A bear? A blanket?  A piece of clothing?  I don't know.  I suppose I'll have to decide spur of the moment with the orphanage staff as to what we can have "stay with her" and only her for that month between trips.  This season of waiting is incredibly hard and surreal all at the same time.  How is that possible?  I don't know, I can only testify that it IS.

I often wonder if AJ loves us.  And sure, to the outside world he does and he's happy so it appears that all is well in his world.  But recently, I've struggled deeply with his inability to communicate certain things. I want to know when my baby hurts, when he loves, when he is angry, and when he is scared.

So for him to explain how he feels to me, in his own way, well...that was a very real moment for me folks.

Silver Lining

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.

Goals for 2012

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.

 image

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!

Change is in the Air

Yesterday was AJ's transition meeting. All in all, it went well. I am so grateful that AJ has a GREAT therapy team. Not only did they bend their schedules to be here at the last minute, they prepared current reports on AJ, allowing me to present the school district representative with a packet of information. Now begins AJ's formal evaluations. His current OT, PT, and TOD will do those evaluations, with the school districts staff OT, PT and TOD observing and reviewing their reports. AJ will need a few other evals as well.

As it stands right now, AJ will need the following services:
Physical Therapy (PT)
Occupational Therapy (OT)
Speech & Language Therapy (Done by an SLP-Speech Language Pathologist)
Feeding/Sensory Therapy (Done by SLP)
Teach of the Deaf
Audiologist
Vision Specialist

His IEP meeting will be in June.

AJ's TOD has been encouraging me to write up a "brochure" of AJ. After all, everyone is going to come to this IEP with their own reports, it is only fitting that we have our own report on AJ. Today, she brought me some samples of packets/brochures that were made by other parents of D/HOH kiddos. I am sooooo excited! Everyone knows I love paper...I know I'm weird. As I started flipping through them, I instantly thought I want AJ's to be in color and to be spiral bound. God help the local office supply store clerk that happens to be working the day I bring them all in to be bound, etc. :)

As I was reading through, I came upon an audiogram. It was a "type" of audiogram I had never seen before. There were responses as 10dB.

I cried... Realizing that my baby boy is closer than ever to hearing. He is closer than ever to having his own audiograms that show results above profound and severe levels. We are so close to being on the other side of the fence.
We can't believe the ticker says 19 days. Really?!

Ninja with a Pink Cup

Part of the fun of having this blog is to come up with some INSANE post titles....

We have lots of updates so I thought it would be easier to smush everything in one post, than several separate posts.

Cochlear Implant Process Update
The case worker sent the letter of approval to the insurance company and to our surgeon's office. She also emailed me a copy, per my request, which I received a few minutes ago. We need BOTH primary and secondary insurance approvals or denials (in our case-approvals-just waiting on the state) before they will schedule AJ's surgery. We are on day 51 of waiting for the state's approval.

In the meantime, we are packed and ready to go for his overnight stay at the hospital. Everything except the things we use on a daily basis, like his cuddle Tigger, pillow, my contacts, etc. Daddy went out and found button up shirts for him and all of his zip-up/2-piece button up "Hef" pajamas were set aside for the hospital stay and post-surgery.

In preparation for our super-sensory kid wearing a bandage on his head for a few days, we have been wrapping his head with an ace bandage. He looks like a little ninja :)

Physical Therapy
AJ is definitely growing again. He's backed off on the walking...again. His hamstrings are wicked tight. I mean tight. It has been a while since I've seen him take a few steps and fall backwards-almost tipping. This would be his hamstrings tightening and actually pulling his body backwards-making him fall. Back to the infant massage several times per day.

His PT has been amazed with his fast progress recently. Both the stairs and the stepstool were goals on our last IFSP. We are now walking him up and down the stairs. We are still to encourage him to crawl up and down, but need to faciliate the walking. We have also moved on to getting into his car seat on his own and the beginning of potty training. We were lucky to have his PT here twice this week :) Today, being that it was a warm 34 degrees out (haha) we had him make his first attempt to climb into his carseat on his own. He did better than his PT expected.


Occupational Therapy
We continue to work on dressing. We dress him in standing, which some people find odd, but it helps improve his balance. He can pull his shirt up and down, take off his socks, and put his arms in his shirt in like a pro. Workin' on the whole pants thing.

We are also working on marking paper (coloring), ripping paper, and dare I say it, cutting. His OT brought a special scissors last week that we've been trying with him. AJ's midline (bringing hands together to middle of body) has been improving, so we hope this will help with stacking blocks and putting objects "in" a container.

Language/Early Education
Due to the holidays, we didn't see AJ's TOD for a few weeks. She was extremely impressed with his progress when she saw him last week. He turned to the drum upon first presentation...same with the cowbell. I get such a kick out of watching AJ watch his TOD sign. :) We still have yet to make a decision on which communication option we desire for AJ...but his TOD is patient and answers any/all questions we have. We are sort of in limbo at this point. But by the time he has surgery, we need to make a decision-at least a path to start on.

AJ's TOD and I discussed, at length, our tour of Lowell. A few days after our tour we had a bit of scare. We were unsure if our district would contract with Lowell. Certain school districts do not want to do so and claim they can provide the kids with services in their own district. This may be true for some kiddos, but in our opinion, not our AJ. Not yet anyway. Thankfully, after several phone calls, we're in the clear. We will have our transition meeting, with our Birth to 3 coordinator and the School District Rep, in about a month. A few weeks after that will be his first IEP meeting which will include those two people as well as AJ's new teacher at Lowell, and his current therapy team.

Yesterday, he was all about signing "more", when I wasn't looking. While he was feasting on my Mom's awesome BBQ pork, he decided to sign more while I was flipping through a magazine. Great-Grandma was watching him, as was I out of the corner of my eye. Sure enough, he'd sign when I'd go back to the mag. Stinker. It may come as no surprise that I haven't been able to get his signing on video yet....

Since we wrap his hands individually with coban, so I decided to try wrapping his hands together on Tuesday. He sat for 15 minutes and watched his light toy and didn't fuss at all. The next day he was coming to midline and signing more like a champ. I think I'm on to something.

Explanation: Coban is a self-adherent wrap that sticks to itself, but does not stick to other materials or skin. You can find it by the bandaids at the drugstore. But I will warn you its $5 for a tiny little roll. AJ's PT and OT introduced us to Vetrap. It is most commonly used on horses and comes in a variety of colors. Vetrap is made by the same company as coban, and is virtually the same thing-it just costs a whole lot less! I get AJ's HERE.

Feeding Therapy/Oral Motor Therapy
Bah Humbug. Over the last two weeks, AJ has gone from drinking his milk and water like a champ, to not drinking anything at all. We have tried everything to get this kid to drink. Then he started doing the same thing with food. Talk about a food & drink aversion. This...is NOT good for a child who is supposed to be getting 1500 calories per day and is walking around all over the place. AJ's eating/weight issues are one of my biggest stressers. Most of you know that, and know that it really bothers me when we have a setback or issue in this department.

At feeding therapy yesterday, his SLP gave him banana milk in a special pink cup. The cup is called a Flexi Cut Cup and can be found HERE. We have the middle sized blue cup, but the pink one is a smidge smaller and works well for him. He had great lip closure, NO leakage, and loved the milk. Whew. His SLP thinks that he probably gulped too much liquid while drinking recently and that sent him backwards. He did drink some of the milk in his sippy, and went back and forth between the two cups and his scrambled eggs. He drank 16oz of banana milk yesterday. We have to slow him down and teach him how to control the cup, taking breaks between sips.

His SLP was very impressed with his use a fork, his ability to turn it around and know when he wasn't the correct way. She was excited to see him go after some eggs that had slipped out of the bowl and onto the tray. What's so big about that? He went after them with his fork, not his paws. He's using his fingers to push foods (raisins, fruit loops, etc) to the sides of his mouth. We have to watch him with the raisins as she thinks he's not chewing them properly and swallowing them when they become "slippery" and flat. We also need to help with his bite & tear skills...meaning when he eats soemthing like chicken nuggets offer him a nugget to bite and tear while he's still got smaller chunks on his plate. We will continue with using the Nuk Brush , Probe, Small Textured Spoon, and Z-vibe tools to encourage lateral tongue movement, chewing, and biting.

Last night, AJ's Dad brought home chicken nuggets for AJ. As always, AJ crawled up on Dad's lap when he sat down on the couch. I come into the room, and there are my boys, chompin' on chicken nuggets and watching the Bucks game. It was just too cute for words. For a few moments, I just sat and watched the two of them and was in bliss that my 2 1/2 year old was actually eating and happy about it.

Banana milk is hard to find around here, but after naptime, we'll be stopping and getting it wherever we find it. (I already checked, they don't make banana powder for flavoring regular milk). We and his team have all agreed that his highchair is still not benefiting him. He's just too small, among other reasons. This morning I brought his other chair back up (without the tray) and it worked like a charm. I managed to get him to drink strawberry flavored milk (whole milk w/strawberry syrup) this morning...along with cheesy potatoes, fruit loops, and Captain Crunch's Crunch Berries. Whatever WORKS.