Thursday, July 28, 2011

Holding Pattern

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....

Monday, July 18, 2011

Mahalo Molokai

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, July 17, 2011

Sunday Heap

~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:

Wednesday, July 13, 2011

Sweet Moments

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.

Friday, July 8, 2011

Hard Moments

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, July 7, 2011

Thursday's 10

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:

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.

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