Worth the Wait

He was so tiny.  Emaciated. Weak. Frail. 

His stomach was distended.  Solids will start tomorrow, we said.

The OT gently worked her hand into the always fisted left hand.

And he screamed.  And screamed and screamed.

Hello sensory processing disorder/sensory integration disorder.

He stiffened his body all the time and often arched like this while being held.

It was not normal.  It made us uncomfortable.  It made others uncomfortable.

It made me cry.

His physical needs took precedence over his other needs.

He needed solids and Pediasure to assure growth.  

Malnutrition almost robbed him of his own life.

He needed therapies to work on his sensory sensitivities , 

to learn where his body was in space, and to use his body.

Eventually that hand opened.  He began using it.  He began using his body.  

He grew.  He thrived. He loved being held, but only in certain positions.

And underneath all of that physical was emotional.  

He was the boy who explored every toy by tapping it to his shoulder over and over.

He was the boy who came home with not one but many orphanage related stimulation.

Like staring at his hand.

And laying, flipping his body in rocking motion.  

This eventually turned to sitting and rocking

 when he was strong enough to do so.

He had rubbed the scar on the back of his head (origin still unknown) 

open and scabbed multiple times.  

He had pulled out his hair in a few places and rubbed his head bald in his bassinet in others.

We chose to have him sleep in his own crib when we brought him home. 

 I comforted him immediately any time he woke up crying, upset, or the like.  

But he never woke in fear or terror.  He always had a smile on his silly face.  

I could not rock him, no matter what approach I took.  

This is supposed to be bonding.  Why won't he let me do this?
All the books and webinars and training say he'll get used to it. 

He's just not used to it, right?

How do you know when its your child's emotional or physical issues reacting to your attempts?

You don't.  You guess.  You guesstimate.  You pray.

You cry.  And try again.

You fail.  

Only certain body positions were comfortable to him.  

We cuddled and bonded through play and lots of movement.

He wouldn't attend to books.  

He couldn't attend to books.  

He couldn't use his vision properly and he couldn't hear us.  

All those lullabies I sang to the walls trying to comfort my baby.

He just arched more and screamed at me.

We bonded in other ways, but these events left scars on my Mama heart.

Early on we learned to throw the manuals out on 

all this straight-cut on adoption and his diagnoses.  

AJ was AJ and that was that.

He learned to come to midline and do things with both hands. 

He stopped fisting.  We did many therapies to encourage that left hand.

When he started preschool he still had some rocking tendencies when activities 

were new, foreign, or routines changed.  

The tapping of the toys on the shoulder had stopped.  

He had stopped arching, for the most part.

When he heard the world, more stims fell away.  

His sensory processing made accessing this new sense difficult for him.

Very difficult. 

No matter what we did, what approach we took, 

what method, we could not force it.

The day he put his own cochlear implant on and 

WANTED to hear was a day of celebration.

It never gets old.

The day he watched and attended to Veggie Tales 

for a small snipit of time was a victory.  

The rocking had resurfaced as an odd body rolling motion 

which usually meant his body was tight and he was uncomfortable.  

How frustrating it must be for him to be unable to express when he body hurts.

I've only seen this motions a handful of times in the last few months.  

Progress and pain-free moments have released him from this stim too.

The last few months have left me in awe and thanks more times than I can count.

Once the physical needs were met and being managed, AJ's emotions began to emerge.  

Is it cognitive?

Is it this?

Is it that?

It has taken years.  

Like the night a few months ago he wanted me to stay in his room 

after I had given him his nightly massage.

And wanted me to just simply have my hands touching him.

He would not fall asleep without me keeping my hands on his legs.

What an honor.

"Honey, please come take a picture of this 

because I do not want to forget this moment"

One night he reached out for my hand and wouldn't let go.

And my tears stained his bed sheet.

This last week he snuggled next to me 

and listened as we read books in my bed.  

Listened.

We moved on to books on his ipad and he snuggled closer 

as I held the screen for him to view. 

He started to drift off about half-way through the Ponycorn story.

His daddy entered the room.  He saw him out of the corner of his eye and smiled.
He looked up at me, smiled, closed his sweet eyes, and fell asleep.

Giving kisses has only happened over the last few months.

Today he came to his Mama specifically to give me a kiss.

When bedtime came and I gave him a kiss, 

he reached up and kissed me back.

Several times.

And I cried.  A LOT.

He giggled.

This boy has a way of healing my heart that I cannot explain.  

We have been waiting for these moments for years.

Years.

Such simple things with such profound meaning and purpose.

SO worth the wait.

Big Brother

Sometimes, the complexity that is AJ leaves me breathless.  Sometimes in a not so good way.  But other times, in a state of disbelief.  Because we've had him in our lives since he was three months old {via adoption referral and photos}, we've had the distinct pleasure to watch him grow, change, and break through some pretty thick brick walls.

The last few months have been incredibly challenging for AJ is a physical sense.  His body has been none too kind and has been growing constantly.  His gains have been quiet and consistent, which is a change as he's usually an all or nothing, get the most "bang for my buck" kind of kiddo.

This was the second year he smiled for his class picture.

This was the first year he did not have a Christmas program at school.  This mama was unaware that they stop at 1st grade.  Sniff.

{Cochlear Implants}
Just before school began we had our yearly CI mapping.  When we arrived at the appointment, AJ walked in the sound booth, his audi announced we were going to do VRA (visual reinforcement audiometry) and test him with each CI individually and then together.  I shrugged and said lets give it a shot.  Note: we have not done this type of testing in a long, long time.  This kid waltzed in there, sat down on the floor (under the mark on the ceiling of course), LISTENED, and turned when he heard the sounds/his audi's voice through the speakers.  The visual part?  There are light boxes attached to the speakers with moving/light up cartoon characters as a reinforcement for turning).

We were all thrilled beyond belief.  Gone are the days of his sitting in the special chair with the tray with 10,000 soundless toys to keep his attention.  Gone are the days of me bouncing on a yoga ball while his audi distracted him with those same toys.  He just waltzed in there and did it.

And to top it off, he tested at 25dB across the board.  ACROSS.THE.BOARD.  We haven't been able to get real #'s on this kid for a long time.  It was awesome.  His audi adjusted his sensitivity on both implants as well.  This is what we call his "bubble".  This will enable to him to once again eat in the so freakin' loud lunchroom with his friends.  He will still hear what is going on in the room, it just won't be so overpowering and the focus will be more on what is directly around him.

Since that appointment, AJ has been wearing both his implants with more consistency instead of just the right.  The right is still most definitely his dominant ear, but it is music to my eyes-er, a wonderful sight to see when he purposely puts his left coil back on!! In fact, I may do a happy dance when this happens.  I try not to attract to much attention to my celebrations because I don't want him to stop doing it!  This activity is consistent between home and school.

His school staff has used his sensitivity setting for school assemblies and has seen great results.  We have used the setting for church and have had great success as well.  He's identifying sounds correctly with just his left implant.  Oh how far he's come!!!

{Cerebral Palsy}
'Tis my least favorite of all things AJ right now.  This is the physical piece I was talking about.  He had his last Botox injections in October.  The normal four injection spots in his left leg: adductor, gastrocnemius, tibialis anterior, and his hamstring.  We have gone through three different strains/types of Botox.  So let's call them B1-3.  B1 did wonders for a long time.  Then it stopped. Earlier this year we tried B2 which does not have protein in it.  The thought was it would last longer since he burns them off faster than they are supposed to last {of course}.  It didn't make a difference.  So we are now on B3, and he's had two doses of this thus far.  The wonderful side effect {no really, it is awesome} is that it dries his mouth out a bit so the drooling ceases a bit.

However, this last round burned off in around a month and didn't do much at all.  Other than stopping the drooling.  That it did.  And that little side effect showed me just when it was starting to wear off.  SIGH.  We're at a crossroads again.  And you know we will do everything in our power to avoid surgery.  I have an appointment scheduled with his Physical Medicine doctor (CP doc) to discuss our options.  His muscles are pulling so tight they pull his foot up, so he looks like he's a toe walker- and a mean one at that.  It is extremely painful and now, his leg is not only up but turning in again. His right foot/leg has begun to also be rigid, as it is overcompensating and trying to match the left leg, so he's toe walking on both feet.

My gut says we should trying one more round of botox, with two injection sites instead of the four. We already decided against phenol injections, as 1) THANK GOD he is not scheduled for a surgery or procedure in the near future 2) his CP doc wasn't wild about it when it was mentioned.  She's all kinds of amazing, so I trust her opinion and I wasn't too thrilled with the idea to begin with.  Phenol injections are typically done while a patient is already under (hence the other procedure scheduling). With AJ's history, it is way, way, way too dangerous to put him under anesthesia for 15 minutes to give him injections.  We're upping the usage of his night brace and his TENS unit to see if that will help give him relief.  Also on the docket are having our whirlpool tub finally fixed and of course, his continued deep tissue massages.

Night Brace

TENS Unit

We are in for -50 degree weather tomorrow.  Ohhhh my mama heart is so thankful I don't have to take him out in that.  He would, no doubt, have tremendous difficulty walking.  Cold makes his spasticity whip around and say, "Hello old friend! Miss me?!"  This week alone he rolled on his ankle twice walking out of school.  Winter is not his friend. We just keep plugging away.  Right? Right.

{Epilepsy}
Things have been pretty quiet in this deparment lately.  Which is a very welcomed blessing!  He had quiet an active few weeks during the beginning of the school year, which allowed his entire school staff to witness his seizure patterns.  While I am not thankful for the seizures, I am thankful that the staff was able to witness them and now knows what to look for.

Recently, I've wondered if AJ's seizure patterns are triggered by his Botox injections.  Of course, I am not absolutely certain, but this is one small reason as to why I am open to trying one more round of Botox, to see if there is a correlation.  Now don't get me wrong, I don't want my child to have seizures.  But, it may be a process of elimination.  There are some other things we can do for his spasticity (in addition to what we already do) including chiropractic care and/or accupuncture (meh).  This will be a definite discussion with his CP doc.

Back to the epilepsy, he seems to be holding steady. 

{Keratosis Pilaris}
For some, this is a tiny diagnosis and for some it is major.  I would say AJ's in the moderate to major range.  Since switching to "Free" products, including ALL Free & Clear laundry detergent, Aveeno Sensitive Body Wash, Sunscreen, and the Aveeno Baby Lavender Calming Lotion, he's been doing phenomenal.  I bought a different type of "Free" laundry detergent a while back and saw a change in his skin.  I guess they aren't all created equal.  AJ's face frequently breaks out in a rash when he's had something acidic to eat, and the acidity can range from low to high and he'll still break out, but we're able to clear that up with some good 'ol hydrocortisone.  It is such a relief not to see all those tiny little bumps on his skin.

*I am in no way being compensated to like these products.  We just truly LOVE them and they work for AJ.

{Communication}
iPad: We recently changed the communication program we've been using on AJ's ipad.  Since he began using an ipad two years ago (holy smokes!), we've used iCommunicate.  This app was friendly for his staff to use and navigate, but wasn't so AJ friendly in terms of independent use.  So, after much discussion with his SLP we chose to go with GoTalk.  This app is amazeballs.  Ha!  First time I've used that um, word???  I've been programming his lunch choices in so he can tell the staff what he wants for hot lunch every day.  The schedules are much more user friendly and he's getting the hang of it.  He's able to independently navigate his iPad now, turning it on, swiping to unlock the screen, choosing the correct icon menu (usually his Sensory apps) and choosing the app he wants.  If he wants out, he presses the home button and goes to another app.  He's even learned how to get to the start of one of his apps after he's accidentally gone to the instructions page.  Smart cookie.

RPM: Speaking of a smart cookie....  Over the summer, I posted a frustrating post on Facebook. AJ and I had a very rough day due to his inability to communicate.  This still happens, yes it does.  I had met our local RPM specialist at a non-profit event I was working last year.  I had heard of RPM, but didn't think it was a good fit for AJ for several reasons.  She messaged me and the thought of AJ being a candidate for RPM began to swirl in my head.

RPM stands for Rapid Prompt Method.  It was created by the mother of an autistic child.  Now bear with me, as I am explain this at the most basic, fundamental level. It is AMAZING.  To be honest, AJ's RPM journey deserves its own post.  However, I wanted to include the basics in this post.  RPM users go from using the working tool (pencil) to point to their answers.  Their choices are written out on several pieces of paper, with the paper ripping into small pieces as the auditory cue that it time to answer the question.  From here, users use the working tool to trace letters on a stencil board.  From the stencil board it goes to pointing to letters on paper, and then eventually writing or typing.

AJ had his first consult a few months ago and STUNNED us ALL.  This is working for him.  When his RPM provider said, "I'm not sure if he knows how to spell yet, but...".  That word...

YET.  RPM has taught me to stop underestimating this child.  Even when I am doing so unconsciously.  Again, I will go into more detail in another post, but for now, AJ is using RPM at school for math and reading, answering WH questions, oh I just can't get enough of this.  It's been a huge eye-opener and we can't wait to see what he'll do next.

From all of this, we have learned that AJ is a multi-approach child.  Limiting him to one form of communication does not work for him.  What is so amazing is how he uses all of these things together to communicate his world.  Amazing.

{Vision}
Nothing new to report. Hooray!

{Eating}
AJ's been throwing us for a loop with his eating recently.  Time to bust out that Nuk brush and Z-vibe and get at it again.  With all the growing he's done, I know that his entire mouth, throat, etc. feels different, just as the food and liquid going down it feels different.  He gets so much of his overall body awareness and coordination from his mouth and when that's all jacked up, so is the rest of him.  We will keep working on it.  But overall, there is only one food on his NO list, and that is celery.  He's come a LOOOOOONG way.  He enjoys hot/flavorful sauces on his food.  If it doesn't have enough zip, he's generally not interested in it.  He's also quite obsessed with frozen fruit pops.  After a long conversation with his feeding SLP we have discovered that he gets quite a bit of organization from these cold tubes of delight.  It used to be super spicy foods, now its the cold.  We just keep rollin' with the punches.

{Lil' Sister}AJ has surprised us with his attention to things changing around here.  He can identify and choose his sister's voice during his speech time at school.  Be.still.my.heart.  He continues to watch her videos with us.  We don't want him to forget about her even though she's not here yet. He helped get her room ready.  He likes to play in her room, and steal her shoes.  All in all, the beginning of a beautiful friendship, I think.

Constant Learning

This summer has so far been the most "normal" summer we've ever experienced.  It's full of popsicles and sprinkler fun, sandy feet and sunscreen.  It is everything I wanted in those early years with AJ.

Those days when we were waking up and doing back-to-back-to-back therapies.  One summer we ventured outside for his PT session.  I just about passed out.  He was ready to use his skills in a natural environment outside the house.  I whined about the therapies, the work, the constant "do this, do this, do this".  Summer was hard, with photos of other people's children doing those "normal" things while I was fighting insurances and scheduling constant therapy sessions.  

I'm glad we had that period of time.  What a labor of love.  

When his school team first told me he would not have ESY this year, I thought they were joking.  Indeed, he is attending ESY (things always change in AJ Land).  However, he's remembering verbal prompts such as "let's go to school", "let's go bye-bye", and the ever famous "where are mommy's shoes?".  He shows me a mega-killowatt smile when I pull up school on his iPad.  And when his short session of ESY is over, he has no problem leaving.  

He's quicker to adapt to changing environments and schedules.  This-is a huge step.  HUGE.  

It is a very, very strange feeling to not be running to therapies constantly.  Still.  And we've been out of the constant therapy world for over a year now.  He has done so well, and made so much progress, much due to the intense bouts we did when he was younger.

Never fear we are still in the constant learning phase. Mostly, I find we are working on social and feeding skills.  AJ is perfectly capable of using a fork, spoon, or spork with finesse.  Well, as much finesse as a child can have at his age. Despite his learned skill, we are back to battling utensil use.  We're also working on not just grabbing other people's food, or plates, and not dumping our cups of liquid.  I swear this kid has go-go-gadget arms.  Holy cats.  

Social wise, we are working on reminding him of the proper way to greet someone.  His preferred method currently consists of pulling your hair, grabbing your glasses, and laughing hysterically.  When he gets excited or feels uncomfortable or doesn't know what is expected of him, these behaviors come out.  In the last few weeks I've had two little girls come up to me and tell me "he pinched me".  My heart sinks and I say, "I'm sorry.  He really didn't mean it."  We are so blessed and fortunate to be an example of acceptance that this type of things sends me into a sad panic.  I start to worry if that kiddo told her parents and how they will react.  And then what do I say to them? I don't want to make excuses for AJ, but what do I say? I really struggle with this piece of teaching my child manners. It is such a hard place to be with not completely being sure as to what he understands.  

And then he does things like grabbing an apple and starts munching on it.  Holy use of all the feeding skills we've been working on.  He's gaining social skills by interaction with his puppy.  Constant learning, constant change.

We are constantly working on helping AJ learn.  And this summer, we're doing it with popsicles and fun.  It doesn't get much better than that.

Surprises

Dear Mommy,

I really enjoyed our time together on Friday.   I love it when you swing me higher..and higher…and higher.  Can you tell?  My smile and giggles are all for you, Mommy.

I’m sorry I made you cry almost all day long.  I’m finding myself, Mommy.  I really am.  Isn’t it cool?

I know you were crying tears of joy and pride, but I still hate to see my Mommy cry.

Yes, I carried that big blue ball across the yard with both my hands.  Yes, I walked while carrying that big blue ball.  I know you cried.  It’s ok Mommy, really.

Yes, I hung from the rings on the swing set and giggled when you thought I was holding myself up when in reality, my feet were on the ground.  I am taller and stronger, Mommy.  Isn’t it cool?

Yes, I handed you my cup and my bowl when I wanted breakfast, and waited patiently for my waffles and eggs.  I am learning patience Mommy.

When you said “Stop!” as I was running down the driveway…  I stopped Mommy, I stopped.  Are you proud of me?!

Mommy, I have friends!  I have lots of friends.  Isn’t that cool?!

I’ve learned a lot of new signs, Mommy.  Isn’t that cool?!  I love being able to communicate with you. 

Have you noticed that I am less frustrated and less aggressive?  I love it.  And I know you love it, Mommy.

Mommy, thanks for the iPad.  Best.gift.ever.  I love having a way to tell you what I am thinking or feeling.  Isn’t that cool?

Thank you for swinging me every morning.  My body feels so much better when I get to swing before school. 

Did you see me turn and walk out the gate when I heard the sound of the gate opening?  Isn’t that cool?

I know you see me when you call my name and I stop when I hear you call me.  I love that you call my name, Mommy.  It makes me smile and giggle.

Mommy, have you noticed I’m Mr. Independent.  Thank you for fostering that independence.

I love seeing your happy face every morning when you come in my room.  Do you love seeing my face too, Mommy?  I think you do.  You tell me I’m the most handsomest boy ever every.single.morning.

I'm full of surprises, Mommy.  This is only the beginning. Are you ready?

Mommy, I love you.  And I’m proud of me.

Me too buddy, me too.

She Said It...Again.

Earlier this week I took AJ to see his physical therapist. You know, the one I schmooze all over this entire blog?  The one who discharged AJ a year ago and said, “He doesn’t need me”... 

Well, she said it…again.

I took him in for a functional screen, which functions as a quick peek at AJ to see how he looks, feels, and moves. Translation: Mommy needed confirmation that's doing just fine without therapy.  Flying solo freaks me out sometimes.

We haven’t been to his therapy clinic in a year and he still knew exactly where he was going.  Upon entering the gym, he promptly pulled out the platform swing from under one of the mat tables.  The difference, when his PT said, “No, sorry bud, we don’t have time today…he moved on to other things”.  My.big.boy.  
She was simultaneously thrilled and saddened with his status.  Thrilled because, he.looks.great.  Saddened because that means she doesn’t get to see/treat him. 

We discussed the idea of a therapy/service dog for AJ, which is something Jeremy and I have been considering for quite some time.  If anyone was going to give it to me straight, its going to be his PT. 

While I was concerned about his spine, she reassured me that his functional scoliosis has not returned.  His back looks straight.  He.looks.great.

The one issue we both agreed on, his left foot/leg.  Oh boy.  Child, child, child.  The Botox is not lasting long enough.  We are researching phenol injections, you can read about them here.  They last longer, as in 6 months, but there is a catch.  At least for AJ.  You have to be under for the 15-20 minute procedure.  AJ and anesthesia are not friends.  And, he can’t have the stuff that puts you out for just a little bit.  Oy vey.  So, we’ll be digging into that a little bit more in combination with his PT and his physical medicine doctor. 

Botox is still a great option, except that insurance only covers it every 3 months.  AJ’s wore off I’d say in 4-6 weeks this last round.  And that was 4, count ‘em, FOUR injections.  Lots to talk about and discuss. 

She also recommended that we have his stop wearing his AFO on that foot.  Hallelujah.  He’s been walking worse with it on than without.  I’ve been taping his foot and hip with kinescio tape, which has helped tremendously.  Now, if I could just get AJ to stop pulling off the foot tape.  Dude, the stuff is $24 bucks a roll.  We’ll get there.  He giggles when I pull the tape out and stands perfectly straight for me while I apply it to his hip, and somehow relaxes his foot enough for me to tape from the in-step around to the outside ankle.  It could be worse.  He’s such a trooper.

We’re also going to bring out the ‘ol night splint again.  We’re only going to come in on the splint about 5 degrees, so he can stretch out those muscles. 

“He doesn’t need me”. 

Five years of therapy after therapy after therapy and he’s finally free AND thriving.

WAHOO!

Intentional Success

AJ's IEP was this past week.  It was the BEST.IEP.EVER. It was also the fastest, coming in at 2 hours exactly.  I've mentioned before that this year has been incredible for AJ as far as school is concerned.  He has made so many gains.... I'm bursting with pride just thinking about it.

Here are the highlights:

AJ has taken to his iPad with a force to be reckoned with.  He is able to turn it on, swipe the screen, choose his iCommunicate communication app, or his sensory app board.  He knows the home button will return him to the home screen.  He exercises this skill a little too much.   He chooses from his "Basic Needs" board with great success.  He knows his picture schedules very, very well.  This has been key this year.  For example, his Monday board has one picture at a time, where he swipes to see what's next.  What is amazing is that we have decreased the number of pictures quite a bit.  At the beginning of the year his school day boards all started the same: picture of his school, followed by his assistant, the hallway, the elevator, another hallway, the entry to a specific room, and the room itself.  Now, his school day boards start this way: picture of his school, his assistant, the room that is his destination.  A goal for app use was established as well, since AJ likes to flip through apps like he's a fish.  At his IEP it was discussed that while it drives us all batty sometimes, we think its AJ enjoying the "power" of being able to control the iPad and flip to whatever he wants.  He's such a smart kid.

The most awesome iPad related gain?  AJ is spontaneously seeking out his iPad to try and tell us what he wants.  HUGE!!!  He's understanding that in some situations he's not getting his point across.  So instead of throwing a tantrum and getting uber frustrated, he's using his communicate tool-independently.  The first time he did it at home Jer and I about jumped out of our seats!

AJ is matching pictures to pictures in a board book.  We are beginning to expand this. He is able to trace the letters of his name.  He can trace a vertical and a horizontal line.  He can cut a piece of paper independently using a tabletop scissors.  He loves to cut things out.  This is quite a change from earlier in the year and even last year.  Our goal is to have him engage his left hand/arm to move the paper himself instead of an adult guiding the paper.  AJ is coloring (wahoo!) with great success.  He doesn't do well with just a blank sheet of paper, but does well with a target, such as a coloring sheet or a shape drawn on the paper.  This is HUGE, as he has never been one for coloring.

AJ is doing puzzles with success!  His special education teacher came up with the great idea to color the puzzles piece inserts black to give AJ a color different between the wood puzzle board and the inserts.  It's worked really, really well.

Each year his school PT times him walking the same distance in one particular area of his school.  This year, he dropped his time by 24 seconds.  He's getting faster!  He's also participating like a champ in SDPE (Specially Designed Physical Education).  He's open to anything they throw at him (pun intended).  For example, at the beginning of the year, he was reluctant to try new things.  Now, he'll explore it and pays much more attention to the environment and kids around him.  He is actively participating.  Seriously.  I'm bursty.

A few weeks ago a taekwando school came into the gym classes and worked with the kids.  Apparently, AJ was all.about.it.  He "got it" from the get-go.  They were holding their hands a couple feet off the ground and he was kicking all on his own.  You better believe we're checking into this for him!!!  His school OT is really working on his pre-writing skills and his fine-motor skills.  He has come so far and is open and willing to pretty much anything she presents to him.  She's also really good at finding things that she knows AJ will like.

AJ has become more and more vocal.  His vocal play and imitation has sky-rocketed and we are honoring every sound and encouraging him as much as we can to keep it up!  He's also doing this at school, which is super exciting to see him doing it in both environments. He's keeping both his implants on during auditory therapy, which is HUMUNGO!  Yes I made that word up.  He still prefers the right, but we are making some great progress with returning to bilateral.  I would say 5% of the time he'll "fight" and not want the left on.  That's only 5%.  He's been putting on his own coils for quite a while now (wahoo!), but now he's trying with the left exclusively.  It is amazing to see him "playing around" with his implants.  He takes the coils off and on, realizing the difference between when they are on and off.  He's no longer ripping his implants off or chewing them.  Hallelujah.  Seriously.

We have a follow-up this week at his CI Clinic-as he's been implanted for 4 yrs on the right.  I don't know how that happened.  I'm looking forward to him showing his audis his amazing progress.  And for the first time ever, I am not stressed about booth testing.

AJ needs a brother or sister.  Oh, wait.  That wasn't in the IEP ;)  But its what I was thinking during the peer portion of our meeting.  AJ learns best when he instruction is 1:1 and he has 2:1 assistance.  Meaning, the teacher, and his assistant helping/modeling/prompting him.  However, there has been a huge shift in his interaction with his peers.  As in, its exploded!  He loves to be around his peers. He's seeking them out.  He's getting better at acknowledging them with a high-five.  This is the blanket action we all do to greet him.  He's really good at doing it with adults, but he needs a bit of prompting to do it with his little friends.

AJ's regular education teacher sat in on AJ's entire IEP.  I wanted to squeeze her.  AJ is rarely in his classroom, so I was unsure what she would have to say.  But she opened my eyes to the magic of my little boy.  AJ has a desk in her room-he has all year.  I took a picture of it at the beginning of the year in awe that my boy was a first grader.  With a desk.  Sigh.  Anyhow, she shared that even though AJ isn't in the classroom, the kids have NOT forgotten about him.  She hears conversations between the kids, "Did you see AJ today?!", "I saw AJ on the way to lunch"!  I just about fainted from the cuteness and kindness of these children.  They look forward to seeing him and guard his desk, saying, "That's AJ's desk".  I just.  We could not have asked for a better school environment.  He went to hug one of the preschool girls the other day.  I just about died from the sweetness.  They are his little army love.  I love it.

AJ's been involved in a peer social group for the last few months with some of his male buddies.  They all just radiate cuteness.  This has really helped him make eye contact with his peers, engage, and learn social skills.  It has transferred into other areas, such as engaging his peers throughout his school day.  Currently, AJ eats lunch in the special education room with a few of his friends.  The goal for next year will be to start him in that environment again (for consistency) and then transition him back into the lunchroom with all of his peers.  Apparently, his friends have asked to have him back at lunch with them.  We miss him!  Tear.  At his CI follow-up well be figuring out if we can map a specific program for the lunchroom environment so that he can be with all his peers.  It is now appropriate for AJ to be with his friends on a more consistent basis.

He's bored here at home.  Often.  I am not as fun as a squealing 7 year old girl, apparently.  Or his other buddies.  I am hoping to set up a playgroup with his buddies over the summer.

Speaking of summer-another shocking revelation at his IEP.  AJ only qualified for auditory services with ESY this year.  Holy buckets.  I had to have the staff clarify about three times to really grasp this concept.  Our school district offers regular summer school-what I call fun summer school-which AJ will be participating in.  They have a special needs component which will allow us to sign him up for some fun sessions.  His auditory will be built into that time. I am so excited I can hardly stand it.  No more summer ESY with him and a teacher in a room.  He'll be with other kiddos.  None of this was appropriate last summer, nor in years past.  He wasn't ready.  But boy oh boy is he ready now.  To know that the only area they see regression possible in is auditory, that means my little boy is being successful.

Another goal for AJ is to attend to books for a certain period of time.  Often, AJ flips through books like he flips through apps on his iPad.  It's not that he doesn't like books, because he does, but its a crapshoot as to whether or not he'll attend or not.  Some days he's really "on", some days he's "not".

A few months ago I attended a seminar called "Lights, Camera, Autism".  It was awesome.  And not just for autism. I learned a lot about how to use technology to help AJ.  I was proud to realize we were already ahead of the game!  One piece that I really took away was that the structured "frame" of an iPad (or other screened device) really helps frame and concentrate his brain.  His school SLP asked me for videos of each of us waving and saying "Hi to AJ".  From that format, AJ has learned to sign "Mommy", "Daddy", and "dog".  Yeah. Pretty incredible.  Just this week he produced the modified sign we created for him for "all done" (tapping his hands on the table or his lap).  Yesterday he mastered "bath".  Next up- "sleep" and "cat".  He loves the videos of our dog and cat that I took.  The dog barks, the cat meows up a storm.  He squeals with delight when he sees those videos at school during speech time.  I've noticed him reacting differently to the dog and cat here at home as well.  He's more aware, seeks them out, and pets them.  Framing his world has been very, very successful.

If you are interested in learning about using technology to help your kiddo, check out the Lights, Camera Autism book.

The one area that is still grey and often frustrating is AJ's behavior.  We've figured out that he's displaying these behaviors for attention.  And, because he has no other way to express his emotion. When he's super excited his he'll scratch and pull hair. When he's mad he'll scratch, bite, pinch.  Sigh.  One thing that has helped decrease the behavior is putting words to his actions.  "Oh your mad, I know you are mad!  You.are.mad!".  I'd say that this is helping about 75% of the time.  We'll keep at it.  I'm also brainstorming with his school SLP and OT as to how we can teach him emotions.  I would be ecstatic if we could teach him happy and mad for starters.  AJ doesn't understand those cute/creepy posters with the faces of emotions.  I hope we figure something out soon.

AJ can open and walk out both our front screen door and the back screen door.  He's so independent now. One of his IEP goals is to independently wash his hands.  He's 75% there.  Little skills like this all lead to his successful independence as he gets older.  You wouldn't think it matters, but oh it does.  He can get fully undressed on his own now.  He gets in and out of the car without assistance.  He walks down the stairs without assistance, holding the railing, independently-and is much, much faster.  He understands verbal prompts only, such as: stand up, sit down, pick it up, where's your coat, let's go, stop, get down, I could go on.  Isn't that awesome that I could go on!

The biggest idea we discussed was how AJ is displaying a copious amount of intent.  With everything he does, there is intent behind it.  No longer is he just wandering through his days.  The little boy who wasn't supposed to walk or communicate successfully-IS.  He has expectations, wants, needs, intention, and happiness in his life.  I don't think I could ask for much more than that.

GO AJ!

Cha-Cha-Cha-Changes

There's something to be said about this time of year.  Perhaps it is a bit delayed this year as we haven't yet seen an snow here?  There are things that remain static, and things that change.  Only one is predictable, though.

The last of the leaves were scraped off the curb last week.  A mix of rain and sleet seems to fall every few days.  We've done entirely too much switching back and forth between sweatshirts and the whole winter get-up.  Soups and hot cocoa have become regulars in our kitchen.  I'm starting to think about putting up our Christmas tree.  Some gifts are wrapped and hidden from peaking eyes.  All these things-static. traditional. routine.

But among all this is one constantly changing little boy.  He has amazed us in the last few months.  There aren't enough words in the English vocabulary to describe how much incredible progress AJ had made.  It has gently reminded me to enjoy each precious moment with him.  Suddenly, his life feels like its in fast forward.  I am indeed not sad about this revelation.  In fact, I'm delighted.  Ask any special needs parent and I'm sure they'd agree.

When our children grow, in any way shape or form, it is monumental.  How our children's lives begin is never far from our minds.  AJ has recently designated himself as the official light-switch operator.  It started with just his own light-switch in his room, but has since migrated throughout the house.  Besides the obvious gains of cause & effect understanding, fine-motor, and gross-motor, the most important gain is the simplicity of the act.  As I observed him giggling, turning lights on and off around the house, my mind was flipping back as fast as a tape deck gone haywire.  That sound was there too.  Come to think of it this flipping reminded me of a view master.  {Can you tell I was an 80's child?}  From a limp, tiny child to a tall, ever-increasingly independent big 6.5 year old who is doing things we were told were very unlikely.

Keep flipping those light-switches kiddo.  Change is a good thing.

All the Ups

First, allow me to clarify what I meant about how thinking about AJ's future is painful.  It is not ALL painful.  But the detour is initially painful.  You know, your drivin' along and suddenly are faced with a detour?  Some frustration sets in and perhaps a slight bit of panic as to where is blue blazes this detour is going to take you, as well as whether or not you'll arrive at your destination on time because of this blasted detour.  Does this sound familiar?

I think what was the most painful was changing the mindset.  Our journey has not been classic.  I prefer to think of it as unique.  But there have been serious moments of pain when you realize your child will not be sitting on that bar stool at a college bar with his friends, or any other of the myriad of classic moments in a child's life.  The process of changing your mindset is painful.  But here's the thing: I don't care about that anymore.  AJ will be AJ and his life will be full and enjoyable.  We'll do whatever it is he needs/wants.  I worry more about the logistics of this new road of a life-time of care for him.  I know his life will be outstanding.  No doubt.

So, moving on to the ups...

AJ saw his GI doctor in August.  It was so hard for me to believe that he hadn't been there in a year.  First stop, weight.  31.5 lbs.  Woot Woot!  Second stop, the room with a view.  I secretly hope each time we visit the GI clinic that we get this one specific room that has a whole wall that is a window.  And then, AJ was discharged.  Say what?  I was in complete shock.  AJ?  He was busy playing with the otoscope which, why do they have an otoscope at the GI?  Anyway, they feel he is doing so well there is nothing else they can do for him, other than what we keep doing.  Last year they were a bit concerned about his calcium intake, but since he's now drinking white milk, and loves all sorts of dairy products, they aren't concerned.  On the days where milk isn't his choice, we give him a Tums.  Yeah, and he eats it.  He's growing like a weed, so I wouldn't be surprised if he's now around the 33lb mark.  Way to go buddy!

During the first week of school we had AJ's private feeding therapist come in and do a consult with AJ's school staff.  I was there too.  The week prior, I had witnessed him eating in the cafeteria. Woah.  Sensory overload and HOLY LOUD.  Yep, I'm that mom that walks around her kids school with her cell phone out.  Really, I have a purpose.  I'm checking to see how loud things are.  After watching him, I immediately stated to his staff that he cannot eat in here.  He's now eating upstairs in a classroom with friends.  His whole entire demeanor has changed, his behaviors are slim to none, and he's not on sensory overload, so he actually eats his food.  The staff is very comfortable with AJ's eating style.  This brings me a HUGE amount of relief.  He has a current Feeding Plan on file.  I am one happy momma. 

A few weeks ago I had AJ's CI processors tweaked.  It's been awesome.  Now that we are aware of how loud certain environments are for him, things make so much more sense.  He's no longer hating his CIs.  That's truly the best way I can describe it.  His audiologist tweaked his sensitivity, which has been sooooo awesome.  He's been doing well at school, but still prefers only one ear on the majority of the time.  We saw AJ's audiologist last week-she wanted to know who this kid was in front of her.  When she came out to get us, he was in the middle of putting his coil back ON himself because he know he was missing out on sound.  Holy awesomeness.  He was much calmer during the appointment and when he wandered into the soundbooth, we followed.  He sat on my lap, with one of the audi's in front of us, while the other was behind the window running the testing.  I haven't been in the booth with him for a very, very long time.  He's never just sat in my lap.  His audi didn't even need toys to distract him.  After I had said that anything over 70dB causes him to take a coil off, we started there, testing several frequencies. He responded to the VRA-WHOA.  He lasted about 10 minutes, which was amazing for him.  They also tested higher dB's and at mid-frequency, he responded at 30dB bilaterally.  Woot woot!!!!  We called that a success and got out of there before things got ugly!  His audi ended up tweaking the sensitivity just a little bit more.  Like, a smidge.  We're giving him 2-3 weeks to adjust and then we'll go from there.  I'm determined to keep on top of this.  It is SO COOL to see him put his own CIs on because he wants to hear.  That is a cochlear implant parents DREAM come true.

I've had to raise the swings on our swingset twice.  I've had to raise the rings on our swingset twice, because someone keeps on growing, and growing, and growing.  Which is good, and sorta bad.  It's shocking to us because we've gone years with praying he'd grow with very slow progress.  So its weird to us.  He's way to heavy to pick up and carry now-which you'd think at 30 some pounds that wouldn't be too bad.  AJ is dead-weight when you pick him up-the majority of the time.  Ufta.  He's too big for the infant straps in his car seats.  This all so exciting, and nerve-racking at the same time.  When he grows, he hurts.  For those of you that are newly reading my humble little blog-his cerebral palsy prevents the message from his brain to his muscles to happen normally.  So, he grows, his bones grow, but his muscles stay.  Tight.  Ouch.  Hurt.  So, growing can be painful for him and increase his tone.  When he grows, its like he's walking in 4 inch heels all the time.  It totally screws up his body awareness. We bulk up his time of his gigundo yoga ball, swing him (helps him loosen up) a lot, do lots of deep tissue massage, and long baths.  Our whirlpool tub is the absolute best thing about this house, because AJ has benefited so much from it. 

Lots of tune-ups, change-ups, and growing up going on!

The Motherload of Updates

To My Faithful Readers,

Oh what a summer it has been.  Correction-oh what a spring and summer it has been.  I've had an outline of things to blog about on the inside of my calendar for months-does that count?  Good intentions, always.  Here goes...

April
-During a regular PT session, AJ's physical therapist made the decision to discharge him.  Yes, he's doing that WELL. We were able to use physical therapy to reverse his functional scoliosis.  "Heidi, you did this on your own.  You don't need me anymore!"  Looking back I am a bit relieved decided this during that session.  I think stating something to the idea of "Ok, four more sessions and then I'll be discharging him" would have ripped my heart out.  I've blogged about his PT's awesomeness many times before.  The idea of her not being AJ's PT was completely foreign to me.  I spent the last 10 minutes of his session in complete shock.  That shock continued as we walked to the car.  I closed my door-and bawled.  I just could not believe we were done.  I never saw a tangible end to his physical therapy.  It because part of our life-his PT became part of our family.  It just never occurred me to me, yet here we were.  Almost five years of therapy and he's just suddenly done.  Never fear, his therapist did not get off easy.  I still sent her regular emails and questions as needed.  {Secretly she loves it!}

-AJ had a follow-up at the dental clinic.  He was diagnosed with enamel hypoplasia.  The enamel on his teeth did not develop correctly.  It is hard, but thin and is not enough.  This is due to his prematurity, low birth weight, early malnutrition, and most likely is hereditary. What does this mean?  We need to brush his teeth as much as we can.  Its a good thing he loves brushing his teeth! His overbite is at 10% which isn't too bad for a kid that still finds an immense amount of comfort in his thumb.  He's pretty good about it during the day now, but at night that what he goes too.  He's still young enough that as his big boy teeth come in they will self-correct.

-AJ started his hippotherapy (horse riding therapy) back up again at the end of April.  His face was priceless as we pulled into the driveway.  This kid has got a memory like his momma.  At least a visual memory, that is.  He's once again riding the pony, Chubbs.  It is amazing to see how much he has grown and how different he looks on the horse.  During his sessions he often rotates between sitting forward and backward on the horse.  The change in his posture is remarkable when he's backwards.   This is because he is sitting on the horse's withers (sort of like shoulder blades) which gently force him to sit upright and hold his posture.  Horses are awesome.  His riding center added some new fun things to the arena this year.  AJ really like the hanging pool noodles that they walk through.  It's like a therapy car wash.

May
-My mom and I went on a weekend getaway to Lake Geneva.  Oh how I love me some girlie time.  We shopped, drank wine, ate yummy food, and spent some awesome mother-daughter time together.

-I toured a school here in the area strictly for special needs children.  I had gone into the tour with the idea that perhaps it would be appropriate for AJ someday.  It is most certainly not appropriate for him.  While I have no desire to discredit the school, my ideas for my son's education are very different from the environment I saw. Then it hit me-perhaps my purpose for touring this school was not to see it as an option for AJ, but to realize how well he truly is doing in his current environment.  Sometimes it takes some outside perspective to grasp what you really need to know.  I ran into a TOD that was part of AJ's initial IEP team.  It's been years since I've seen her but she remembered me and of course AJ.  That little boy touches more people than I ever thought possible.

-We had AJ's IEP meeting in May.  Each year the group gets larger and the space we need changes.  This time, we had 16 people with four tables.  The plan we have in place for this next year was developed from last year's confusion.  I suppose that is the best way to phrase that.  His kindergarten year was rough.  We are using what we learned from last year to make this year much more fluid for both AJ and his staff.  AJ will be in 1st grade in just 3 weeks.  Whoa.  He'll attend school for 6 hours a day and continue receiving the following services: Special Education, Teacher of the Deaf, Auditory Therapy, Speech Therapy, Physical Therapy, Occupational Therapy, Specially Designed Physical Education, and one-on-one assistance.

-In addition to AJ's IEP, we formulated a FBA and FBP.  No, I did not misspell FBI.  A Functional Behavior Assessment was drawn up, from which we drafted a Function Behavior Plan.  AJ had quite a few aggressive behaviors at school in the last few months.  As with anything AJ, his reasoning for behavior is not based solely on one thing.  The staff has struggled with him to keep his implants on, becoming extremely aggressive when they attempt to get him all together again. He was aggressive during his bathroom routine.  Behaviors included biting, graded scratching, and pinching.  Many things with AJ are a mystery or guessing game.  The question I dread, why is he doing that?  I feel like I am supposed to have the exact answer, and I don't.  It is definitely behavior, but also communicating frustration, anger, etc.  The more you fight him, the more he fights back and wants the attention.  It doesn't matter if its positive or negative.  We are squeak toys.  I'll get to the squeak toys later.  The FBP already needs to be changed.  We'll be working on that as we begin the school year.

-AJ had another emc3 (Every Move Counts, Clicks, and Chats) evaluation in May.  This is the first time an evaluation has been repeated on a student, so the fantastic special education teacher that consults on AJ's team was thrilled to do a follow-up evaluation.  AJ did well throughout the evaluation, which we were able to see via a video of the session.  Most of his reactions were congruent with his 2010 evaluation.  The one section of the evaluation that stood out-Olfactory.  AJ's response to lavender was mind-blowing.  It calms him immediately.  We are excited to use this evaluation, in addition to the knowledge we gathered for last year to form a functional day of school for him.

-AJ saw his physical medicine doctor in late May.  This is the first time in a while that we've seen her and haven't done botox.  He didn't need it.  She asked for a follow-up in 3 months, so we will see her this month (August).  AJ has had his night splint for a while now and will not sleep with it on.  Correction-would not sleep with it on.  She suggested we have him wear it during dinner, tv time, and other periods of down time, just to give him a good stretch.  He's been doing very well with it.  The splint keeps his leg/foot at a 90 degree angle and is hinged so we can decrease the angle to create more of a stretch.

-AJ had another change in his cochlear implant mapping.  He struggles wearing them bilaterally.  At this time, he didn't fight me when I put on his implants-but he fought everyone else on the planet.

-We celebrated AJ's 3rd Hearing Birthday!!!

-AJ had a slew of appointments at the Children's Development Center.  We had initially wanted to have him tested for autism and Angelman's syndrome.  This effort turned into the "Lexus" of workups and included individual evaluations from a development specialist, psychologist, and Speech & Language Pathologist.  These evaluations were spread out over the month of May.  I've never had reports sent to me so fast.  I love that.  In mid-June we met as a whole team. The following things were determined:
AJ is a calm, easy going child
AJ does not have autism
AJ does not have Angelman's syndrome and was already tested for it in a genetics test we did a few years ago
AJ had intra-uterine growth retardation.  Meaning, his birth-mother's pregnancy started off on the wrong foot from the get-go.  Add that to the lack of oxygen at birth and you have an AJ.  The information given to us in his referral, estimated 4-6 weeks premature, is correct.  
AJ's cognitive level is at a 2 year old level.
AJ's language level is at 3-6 months for expressive and 6-9 months for receptive
AJ very likely has speech and language disorders underneath everything else he has going on
AJ is ready to take it to the next level with his learning skills
AJ's behaviors are to get our attention.  We are the squeak toys.  He does something, we react.  Repeat, repeat, repeat.  The behavior should be ignored.
AJ is not in a plateau, and there is no reason to think he will.  His brain is moving at its own pace.
If AJ's cognitive ability is at 2 years of age, I'm sure this has added to his struggles at school.  What two year old goes to school all day?
AJ's brain and auditory memory may not interpret the information he's given through his cochlear implants.
AJ's difficulty at having "all systems go" prevents him from accessing the world as you and I do.
AJ is a special needs child, and will remain a special needs child. 

-AJ lost his first tooth!  He lost the bottom front right tooth.  It was wiggly for a while, but then all of a sudden my mom noticed it missing as she was rolling him on the ball!  We never did find it.  My assumption is that he swallowed it.

-I received a call from the PE teacher one afternoon regarding AJ.  He had been nominated for a scholarship award.  A fellow Mom nominated AJ for the S.J.C Scholarship.  S.J.C. was a teacher who taught at AJ's school for many years who passed a few years ago.  His family setup a scholarship fund in his name, just as he had requested.  Each year this award is handed out to a student with exceptional needs.  This year, AJ was chosen.  He received $250 to use toward whatever therapies or equipment AJ needs.  We dedicated these funds to his hippotherapy.  I had the pleasure of meeting S.J.C.'s brother and shared AJ's full-story with him.  We are so grateful for the C family's generosity.  I'm anxious to see AJ's name added to the plaque that hangs in the front entrance of the school.  What an amazing gift for our kiddo.

June
-Through a chain of incredible events and meeting some incredible people, I've been given an amazing opportunity.  I was asked to be a District Parent Liaison for our school district.  I cannot tell you how excited I am about this!  This fall will be jam-packed full of trainings, but I am so looking forward to it.  Currently there is one liaison for our district..I just so happen to know her.  Well.   I'm excited to partner with her...and lighten her load! I'll be helping families advocate for their children!  What could be better than that!!

-AJ graduated Kindergarten.  Oh my cuteness.  School had a cute little graduation ceremony and a song presentation by the kids.  It's so amazing to watch them all grow each year.  One of AJ's little lady friends helped him "cross the bridge" from kindergarten to 1st grade.  It was adorable.  And, as it turns out-she's adopted from Guatemala too.  It's a small world people.

-We had a family reunion of sorts at a lake resort Jeremy and his family used to go to multiple times a year.  It was a great weekend and celebrated the lives of those in his family that we've lost.  AJ fell in love with the lake and was not too disappointed with the playground right across from our cottage.

-We celebrated out 11th wedding anniversary!

-A while ago AJ's pediatrician suggested we see a dermatologist to check out the scarring on the back of his head.  As AJ grows, we've become concerned as to whether it will "stretch" with his head growth or who knows what else might happen to it. So, we added a dermatologist to AJ's repertoire of providers.  I've always been mighty curious as to what the little bumps are on his legs.  Something only a mom would notice, but still.  He did have scabies when he was at the orphanage (I know, ewww) so I thought it was slight scarring from that.  The dermatologist could not determine what caused the scar on his head.  She was however concerned about whether or not a foreign matter was under the skin as the scar is very thick.  She took a photo to consult with her colleagues and then requested an MRI.  Here we go with the "He can't have an MRI because he has cochlear implants" speech.  She was very understanding and requested that we have the results of his original MRI and CT scans sent to her.  No one knows what the scar is.  His MRI showed no foreign matter under the scar.   All good news right?  She referred us to the skin surgeon for a consult.

When she looked at his legs, she told me it was not from scabies.  AJ was diagnosed with keratosis pilaris.  The little bumps are due to clogged hair follicles.  You can read more on the condition by clicking above.  While this is common, AJ seemed rather irritated with his skin and scratched at times.  His skin gets dry very quickly.  He has it mostly on his upper arms, his thighs, and his legs.  We switched to FREE products, meaning nothing with fragrance or dyes, etc.  Laundry detergent, dryer sheets, lotion, etc.  WHAT A DIFFERENCE it has made.  It has made a huge difference for our little guy.  I'm so relieved.

-AJ's ESY (summer school) staff was trained on his iPad and did a fantastic job during his 6 weeks of summer school.  AJ really did well.  Not only do I attribute that to his rock star staff, but also to the quiet, distraction-free environment he was learning in.

-My mom moved closer to us in June.  Oh how we love having her closer!  She's truly been a blessing to our family.  I love that can just pop over and not drive a half hour.  It's great!

-AJ turned 6 at the end of June. SIX.  SEIS.  OLD.  We had a Route 66 themed party for him.  I usually try to think of something AJ enjoys.  Since he can't tell me what he'd like and doesn't understand the concept of birthdays yet, I think about what he loves to do, what he likes to play with, etc.  He loves car rides, so Route 66 seemed perfect!  In place of gifts for AJ, we asked guests to bring a baby item as a donation for layettes that a local non-profit puts together for expectant mothers.  We were so excited and grateful for every one's generosity!  Lots and lots of new moms and their babies will be well-stocked!!

-We put up a small (just less than 3 foot) pool in our yard.  Oh what a good idea! No, I'm serious. AJ absolutely loves it.  In fact, he learned to hold his breath under water.  He can hold it for 10 seconds.  This kid is going to be in the Special Olympics for swimming.  I am so not kidding.  The local Y where we hold a membership is quite a drive from here.  It also makes me uncomfortable that they've had several cases of pertussis and whooping cough there in recent months.  We're looking at other options for AJ to continue swimming in the colder months.  Water does wonders for him!

-Jeremy was accepted in the University of Cinncinati's Family Nurse Practioner program!  He'll be starting in January and is super excited!  He's been out of school for 17 months so he's chompin' at the bit get back into the groove.  By the way, its an online program with clinicals locally.  We are not moving to Ohio.  Nuh uh.

July
-Jeremy had a chance to sneak away to Oshkosh, Wisconsin for Lifest 2012.  It was an incredible experience.  Lifest is a Christian music festival.  They had a grandstand and other smaller stages in the biggest park I've ever seen.  We took out our folding chairs and sat and listened to music at the grandstand most of the days.  At night we made a habit of going to one of the tents for the late acts.  We had a fabulous time.  Hearing the first few notes of "I Will Be Here" by Steven Curtis Chapman was amazing.  Two friends of mine sang that song at our wedding.  Jeremy and I danced in the middle of the aisle.  Forget that there were 10,000 people sitting around us. I bawled.  Uncontrollably.  Therefore, confusing my husband-to him crying means you are sad.  I was not sad, not in the least.  My mind became a Rolodex of memories of our life together.  We've been together 15 years.  That is a lonnnng time.  I was so proud of what we've become and how we have not only survived, but thrived.  We'll definitely be going again next year.

August
-We took a trip to Iowa to visit Jeremy's parents.  AJ experienced cotton candy for the first time, and went on his first real ride.  Let me tell you, the Berry Go Round is nothing like the Tilt o' Whirl we had growing up!  AJ was neutral about the ride, which really surprised me.  We were just excited that he was tall enough this year to ride a ride.

-AJ was finally granted speech (feeding) therapy visits as well as occupational therapy.  We have 12 sessions to squeeze into the remaining of August.  Ufta!  Feeding wise AJ has regressed a bit.  He wants to claw everything and chooses not to use his spoon or fork.  Because his cerebral palsy affects his left side, you would think the left side of his mouth would be weak also.  Not so.  The right side of his mouth is weak, where the left is his strong side.  The body is a mysterious thing.  He chooses to place things with his fingers and move them from side to side with his fingers vs. actually using his tongue to manipulate the foods.  He's craving oral stimulation constantly.  We've introduced harder items to him, such as the P chew, harder versions of thera-tubing, and theraband.  His z-vibe broke and I'm anxious to get his new one.  So much of his organization comes from oral awareness.

-AJ's been having gihugic (I love cooky words) growth spurts throughout the summer.  I felt the need to schedule a "check-in" with his physical therapist.  She said he looks really good, is fully mobile, and is self-correcting.  Music to my ears.  His left foot is turning in considerably, but not from his hip like it usually does.  He's turning in from his tibia down.  We're taping his foot with Kinescio tape.  All the years we've used Kinescio, we've never taped his foot with it, so I wasn't sure how to do it.  What a difference it makes.  I also fixed his left shoe, which has Velcro that doesn't get along with his AFO orthotic.  It constantly kept coming loose.  I attached some extra Velcro, one sticky and one soft strip, to the existing Velcro strap on the shoe and presto!  It worked like a charm.  Because he wears orthotics, he looses out on the natural sensory input your foot has when you walk.  Ok, to keep his foot straight and maintain balance, we take away some sensory.  Such is life.  Back to his PT's thoughts, she literally looked at me and said, "Why are you here?  He's doing fantastic.  And I am not taking him back on my service."  Ok then.  She calmed my fears, as always.  In order to keep avoiding surgery, which is always our goal, we are doing soft tissue massage on his calf muscles and his foot especially.  His plantar fascia is very active. We also do the foot wiggle, which consists of holding the sides of his foot and, wiggling rapidly.

-We had a playset built in our yard for the big boy himself.  The look on his face when he saw it was PRICELESS.  We added a rock climbing ramp to provide nature physical therapy.  We are sneaky parents like that.  He's going down the slide himself, which gets quite a bit of speed!  He climbs up and down the ladder on his own and balances himself on the swings like a pro.  He's an amazing little man.  Having the set in our yard also helps keep him occupied.  Since he's not the kid who will watch a tv show or sit and read and pretend play, this gives him something to focus on AND enjoy.  We love it!

-I'm still taking courses to earn my BA in English.  I'm 15 classes into my program.  My original date of graduation was September 2013, but now it is December 2013.  I had to add two classes to my schedule to fulfill the program requirements.  I had to get to a certain point of the program to choose the classes I wanted to take.  Summer has proved to be quite difficult trying to balance having AJ home and doing course work. Steady wins the race, right?

-AJ had a petit mal seizure last week after waking up from school.  While my intial "in the moment" reactions to them are improving (which-I'm not sure if that is a good or bad thing) the after effect is what drains me.  We went to a concert that night and I was just drained.  Having fun?  Sure.  But if you looked at me I looked bored out my gourd.  All in all, he's been doing well.  He does have clusters of absent seizures, and I think he knows when they are coming on.  Sometimes he's upset about it, other times he just comes back like flipping a switch. His little sad face is so heartbreaking.  Buddy, if I could make them go away, I would.  Believe me.

-AJ qualified for Family Support Program funds again this year.  I made our home study visit appointment this week and am preparing everything we'll need to submit.  We always seem to qualify when changes are about to be made.  I'm not sure how we do that.  Our plan is to have sidewalk in front of the house redone and widened a bit.  New regulations regarding what the program will pay for are coming down from the state level.  Our coordinator advised us to gather as much information as possible to "prove" that AJ needs this walkway.  Despite this, we are ever grateful that he qualified for funding again.

-AJ continues to use his iPad for communication.  Two weeks ago we had his iPad in church and he kept hitting the home button to exit from the menu or app that was up and clearly he didn't care for.  Jeremy and I were thrilled!  He shocked me when we were in Iowa by turning it on with the home button all by himself!! Wahoo!  We have specific goals in his IEP related to his iPad and he just aced one of them!  During summer school AJ was asked to listen to a musical instrument and then choose from three images of the instruments on his iPad.  This little boy amazes me.

The SLP that evaluated him at the development center suggested using ABA flash card apps.  AJ learns best by rote practice and let me tell you, these apps are awesome.  There are different categories, such as emotions, foods, sports, actions, vehicles, animals, etc.  She also gave me a mega list of apps that she a colleague put together, as well as a list the center hands out.  One of these days I will dedicate a post to the 'ol iPad and all its awesomeness.

-A friend told me about the COOLEST APP EVER.  Ok, maybe not the coolest, but it sure is informative for Jeremy and I as non-cochlear implant users.  There are several apps that have a dB meter.  Yes, I know this is awesome.  The app is Decibel 10.  I am seriously disturbed by how loud our world is.  Despite this, I find this app amazingly helpful.  AJ has been having a seriously hard time with his cochlear implants.  This app is helping immensely as I can identify what range of sound bothers him and what he can tolerate.  I'm anxious to take it to school and use the app in the school environment.

-Jeremy and I participated in our church's Believer's Baptism in the lake.  What.An.Incredible.Experience.  I really don't have words other than it was an amazing experience and I am so grateful we made the decision to be baptized.

-I've been participating in a women's bible study.  The study is appropriately called "Stuck".  The ladies in my group are all amazing women.  Next week is our last week and I am incredibly sad that we won't be meeting anymore.  We've followed this study and I've become a new woman because of it.  Truly. As much as I am looking forward to meeting other peeps with the fall groups form, I am sad.  Each week we've done a "Chica of the Week".  Each of us writes a prayer request and we pick cards from a basket.  You are to encourage and pray for your chica that week.  I absolutely love this idea.  I love sending encouragement and well wishes to my chica, and love receiving prayers and encouragement from whomever has me as their chica that week.  Sigh.  What I learned?  I am not alone in my place of stuck.

-AJ is scheduled for a follow-up with his physical medicine doctor, a cochlear implant mapping, and an appt with his neurolgist within the next two weeks.  He is also scheduled for a genetics consult and a consult with the skin surgeon regarding his head scar.

Is that it?  I think so.  All in all, AJ is doing great.  Thanks for checking in here on the 'ol blog.  She won't be neglected anymore.  Promise.  Ok, I promise I'll try.

Valentine's and Easter

Valentine's is like speed to me.  I get all excited about making rock star valentines for AJ to take to school.  

This year, not only could I find the perfect valentine for us to make, we also ran out of time.  So, I had to simplify.  We came up with this:

I stamped the greeting and wrote his name and he put the stickers on.  He absolutely loves playing games with stickers.  Put them on your nose and he'll find them in no time at all.  And, of course, it is a great OT activity.  I heard from the kindergarten teacher that the kids all loved them.  Sometimes I think AJ could have given his classmates bags of pebbles and they would have been over the moon.  Our little guy sure has his own fan club.

I made these for AJ's school staff, courtesy of Pinterest:

For Easter, the Easter Bunny forgot-ok-has no idea where his basket is.  I saw a cute idea (again, on Pinterest) to dye eggs using koolaid packets instead of the 'ol vinegar and color tablets.  Yeah,  good intentions.  And then I got to thinking about what the Easter Bunny should bring AJ....

He brought all his favorites: Freeze pops, glow sticks to play with in the bathtub, 

sour straws, and a light-up yoyo.

AJ attended church for the first time hearing (back in December we took him for Christmas but later found out his processors weren't working then so it wasn't such an accomplishment then) on Easter.  He did very well and even signed more for the lights after the music was over.  It was seriously cute.  For Easter dinner, he wasn't the least bit interested in eating, he only wanted a freeze pop.  He proceeded to entertain us with that one freeze pop for at least a half hour.  He then devoured several pieces of Irish Cream Pie.  

We've settled into a groove where I no longer feel the stress of having to have holidays a certain way.  

We do what works and enjoy every moment of it.