Saturday, July 31, 2010

Playing the Game

"Playing the Game" is one of those phrases that slips out of your mouth at the end of a conversation.  It is similar to saying "We Keep on Trucking Along" or "We Just Go with the Flow".  

I had a conversation with one of AJ's therapists yesterday, which ended with me saying "We just play the game", and his therapist saying, "Exactly".

For the past few weeks, our lives have been centered around one question, "What's wrong with AJ"?  Let's not beat around the bush, people.  He's not talking.  He's not imitating.  He's not doing A,B,C,D, heck we could go into double letters AA, or even triple letters AAA.  So something else HAS TO BE WRONG. 

Back in December, I had posted about AJ's appointment with his development specialist.  The one where I was told something HAS to be going on, like a chromosomal abnormality, a genetic disorder or syndrome.  Where he told me AJ might of had a stroke at birth. 

After a long waiting period with insurance, by miracle the genetic testing was approved.  And I sat on it.  Seriously, who wants to take their kid in to 1) have blood drawn, because that activity is always full of fun 2) have tests drawn to see what "else" is wrong. It was a typical case if I wanna know, but I don't wanna know.

We should have the results soon.  In the meantime, I contacted AJ's neurologist and asked him to take a lot at his MRI done in 2007 explain EXACTLY which part of AJ's brain was damaged (his cerebral palsy) and whether or not there was an evidence of a stroke.  I made sure to pull out my old calendar and make mention of when the MRI was done and when we originally saw the neurologist. 

Ufta.  Looking at that calendar was hard.  Really, Heidi?  Its.a.calendar.  Yeah, it is JUST a calendar.  But its full of the chaos that was just beginning.  There were things scribbled everywhere, as it was a small calendar, and under the original neuro appt I had written Dad with a halo underneath (my Dad passed a half hour after we left the "Your son has CP" appointment).  A flood of emotion ran through me, included how much I hated the neurologist that day. 

Now? I love him.  Ok, maybe love isn't quite the right term to use for someone on your son's medical team, but I digress.  He's an amazing doctor, very laid back, and has a way of calming me.  He returned my recent call re: location of damage in the brain/stroke  himself.  He explained everything in layman's terms (at my request), which boiled down to this:  AJ's brain damage is in the areas that control the voluntary movements of the limbs and the trunk due to lack of oxygen and/or blood...during/or at evidence of stroke.

Ok then.  While I felt like I should have shouted from the rooftops and been uber relieved, I was kind if stunned.  I was expecting him to say stroke.  Because, come on, there HAS to be something else going on, right?

I really, in my heart of hearts, don't think so.  It seems that AJ's...ahem...(whats the correct word for this)...unique history, his late diagnoses of BOTH cerebral palsy and deafness cannot possibly be all thats challenging him from moving forward.  Nope, gotta be something else.  So lets run every test in the book, and try to cram, cram, cram this kid in a box.  A mold.  Something that textbooks, clinical experience, whatever, have told us existed and this is how you proceed.

Well, I would doubt that there is any child that has had the exact some experience as AJ.  Which truly makes does make him unique, doesn't it.  His history and journey has been unique and makes him special, as he has most certainly defied the odds against himself. 

AJ's skills are often underestimated.  Or it is assumed that he just can't do it.  Because he's stubborn.  Oh is this kid stubborn.  If he is not motivated, or if he's bored, or not challenged, forget it-its over.  In the constant pursuit of putting him in a box or mold, he's expected to do X, Y, Z.  "AJ put the blocks in the bucket."  What child, literally, sits on the floor and puts plain blocks in a bucket just for fun?  Maybe some, who might dump it out and make a game out of it.  But I am finding that AJ responds much better in play-type situations.

It is assumed, that if he doesn't do it right that very moment, he can't do it all.  Mark "no" or "emerging" on that checklist.   AJ isn't a puppet.  He is not a dog.  While I understand that AJ, just as all kids, need to learn to follow directions and in his case verbal prompts do something, I feel we are constantly telling him to sit, stay, fetch, drop in the bucket on command.  Ask him to perform like a circus animal or something.  While I understand the checklists, evaluations, and testing is necessary, it sometimes paints a very gloomy picture.   It is incredibly hard not to focus on the results, numbers, and levels.

I've been thinking a lot about the two families I know who have children with CP/CIs.  We are certainly drastically different.  But talking to these families renews my hope in AJ's future.  Because those kiddos defied their own odds.  The similarity?  All of our kids have CP and deafness with CIs. Yes, we are different, I know that.  Its been drilled into my head.  But that doesn't mean I shouldn't talk to them! Those children were diagnosed earlier, had early intervention much earlier, their journeys overall were very different than AJ's.  While we were able to work on AJ's motor skills from the moment he came home, his cognition, his vision, and most certainly his hearing and the ability to communicate came much later.  There was no therapist at our house when AJ was just month old.  He didn't truly tune into his world until he was given the gift of sound.  When he was given surround sound, he tuned into his world like we've never seen before.

His history is not to be overlooked.  While we don't want to dwell on it, his history is important.  It IS part of who he is.  And if you weren't there with us, I understand, it is hard (and sometimes a lot of people don't comprehend it at all) for you to understand it.   It is quite easy to get caught up in the sadness of his story and not view it from a logistical side. There needs to be a delicate balance between recognizing and understand AJ's history and moving forward without hesitation because of his history.  It took years for us to convince someone, anyone, that he needed speech therapy.  Why? Well, "With kids like AJ"....  Can I tell you how much I despise that sentence?  Move forward.  Don't assume he CANNOT, because odds are HE CAN.

Do I know AJ sometimes looks like he's in LA-LA land?  Of course.  Do I know he doesn't wave bye-bye?  Yes.  But I also know that he CAN wave bye-bye and at least now if you say bye-bye he turns around and looks you right in the eye.  He knows what it means when you say "Lets Go Bye-Bye."  Do I know he doesn't vocal play?  Yes.  But he's starting to. :)  Do I know he doesn't know his colors or shapes, or numbers?  Of course.  I also know its because we aren't there yet.  A big part of learning is communication.  And if he's behind on that, we'll then folks, he's probably not going to sing the ABC song to you today, now is he? 

But that doesn't mean he won't.  In the past few weeks I've found myself in a place where I've been beaten down so many times I started to fool myself into thinking these things are never going to happen, so why bother. So many people saying so many different things. So many things to work on, worry and stress about. The odds are against him, I know that.  They always have been.  Do I want to hear, in someone's professional opinion, that he won't talk.  Of course not.  Imagine, for a  moment, how you would feel if someone told you your child was not going to talk.  First, intense emotion.  Second, fight or flight.

We'll continue Playing the Game.  Playing the "lets see whats wrong with AJ" game.  Do I think AJ will talk.  Yeah, I do.  Tomorrow?  No.  But I truly think he has the capability to do so.  Well what does so and so say?  This one says maybe.  This one says only a few words intelligible to family who know him. This one says try an augmentative communication system, its easier.  This one says I think so, he just needs to figure it out and it will be a challenge.  

As his advocates, Jer and I say yes, he will talk.  And thats what matters.

Wednesday, July 28, 2010

A Running Memory

I just sent the .pdf file of our old website to Kinkos to have it copied and bound.  While I was on the phone asking how on earth this would all work, I started reading some of the old posts and stumbled on these from the week AJ became ours forever.  Since this week is "the week" that began our journey of bringing AJ home from Guatemala, of course I'm sentimental. I thought I'd share, since this very moment is why I chose to start a website, and then later started this blog.

It is a running memory of our lives with AJ.  So when I forget simple things, like when he went off the bottle (which I swore I would never forget), my words are right there to remind me.  My words reminds me of a time when I "wasn't" a special needs mom and watched my baby boy sleep for hours.  When our world seemed perfect and we could think of nothing other than holding AJ and never letting go...

Sorry this is so late...we've had quite the day/evening. We were

supposed to be on our way to the orphange to pick up AJ between 10-11am.
After 11am we called and were told that we would not be getting AJ until
around 5pm. What?! Long story short, it was a #@*(& of a day and at 5:45pm,
he was placed in our arms forever. He was sleeping---tiny as ever-we always
think he's going to be bigger :) He was dressed in a stripped onesie, a long
sleeved fall themed onesie over the stripped one, khaki pants, and socks. He
was dripping with sweat when we got him and of course, continued to do some
since he was sleeping....we took a moment to enjoy what God had just given us
and to sort of stare at him in awe. Jeremy opened our "packet" of documentsholy
cannoli-he comes with paper!!! We have his Guatemalan passport, new
birth certificate, and lots of other documents....
We made our way upstairs to our room to lay him down on his Quilt of Love....
and he woke up. We stripped him down to his one onesie and since he was
super hungry, so we fed him-ok, he downed 6 ounces like a champ. He is doing
extremely well. We "tripod'ed" him-and he stayed upright for about 10 seconds...
he's grasping objects and following things with his eyes-especially his bottle
when its all gone :) He holds his head up higher now when he's on his tummy,
and we give him a week or two and he'll be army crawling....He's got a couple of
new teeth coming in, and is still Mr. Smiley pants like he always has been. We
grabbed a blanket and made our way to the lobby to wait for Pete and Tomas,
they came walking over and we had Pollo Campero for dinner. . Translation:
really good fried chicken chain that originated here in Guatemala-their version
of "KFC" but so much better. The boys (AJ and Tomas) kept starring at each
other-we are really wondering if they realize who each other is.
We finished dinner and made our way upstairs again, and just hung out,
playing and getting him used to a spoon. He is down for the night...
Today was the longest day ever...and we are so glad that at the end of it, a baby
boy is now all ours. More tomorrow-Mommy and Daddy are exhausted, but
thrilled at the same time :)

Ok its Sunday. We have sort of lost track of what day and
what time it is...its raining right now-its 5:01pm-holy cow I didn't realize it was
that late...well, lets back track for a moment....
Yesterday was our first full day with AJ. He went to be the night before at
9:30pm and then didn't wake up yesterday morning until 9am. Whoo hoo! He
probably had an exhausting day and then to wake up in a strangers arms
probably threw him for a loop. So, he got up and he got a bath and then we ate
breakfast....he went back to sleep around noon and slept until 2pm....then he was
up till about 830pm. Pete came over from the hotel next store with Tomas and
we hung out...the highlight of our day-we managed to have him eat some rice
cereal and Pete and Jeremy logging onto Yahoo live to "watch" the Brewers
game. We had a pretty laid back day yesterday-since he had woken up with a
wicked he slept most of the day. In the afternoon, we had AJ and
Tomas playing on our bed and Tomas decided that they should wrestle-AJ got
pinned-naturally-we got a picture so we captured the moment!! At night, we put
him in a sleeper that says "Daddy's Little Helper" and it has wrenches, hammers,
saws all over it. Grandpa Doug would have loved to see him in such a
"HANDY" outfit.
He went to bed around 830pm and as I suspected, he woke up around 1am. We
had a bottle and then he restled around in his crib for about a 1/2 hour and fell
back asleep. He woke up again at 9am. Daddy gave him a bath and just as we
were getting ready ourselves, Pete and Tomas came to visit. We all had
breakfast-and then I heard someone say "Heidi?!"
I turned around and it was Wendy....those of you that are in our immediate
circle of family and friends probably saw the video that we received from our
adoption agency with AJ's referral. The family who shot the video is here and
we hugged each other to death when we saw each other!!! Her husband flew in
this morning, so we were able to meet him as well. It truly is a small world.
They meet their daughter tomorrow.
So we sat outside, all of us, and talked-its so beautiful to just sit outside and
listen to the fountains in the front area. Not as much traffic on Sundays either....
which is nice. AJ decided not to nap until about 1pm today-which is extremely
late for him. He is showing signs of stress, which is to be expected. We suspect
that he has finally figured out, hey-this is not normal. All children that are
adopted go through a period of grieving, and believe us it is hard to watch, but
it will pass....this we know. He's a bit ornary today-but we still love 'em :)
I got to hold Tomas today-which was exciting....Molly, his mommy, will be here
in 2 hours and Tomas' Daddy can't wait....!!!! We all have our Embassy
appointment very early in the morning-715am which means we have to ready
and rarin' to go by 645am. Yikes!! When they dropped AJ off, he came with his
adoption packet, which has his Guatemalan passport, pink slip, copies of all
reports, vaccine records, etc. Very interesting paperwork he came with :)
Most of it goes with us to the Embassy tomorrow.
Well, there is a lot of noise in the dining area and I should go upstairs by Jer and
little man, but we just thought we'd update everyone...more after our Embassy
appt tomorrow.

Tuesday, July 20, 2010

Saturday, July 17, 2010

Hula Scootin'

AJ likes to keep his left side tucked in.  He doesn't like to extend his ribcage, lengthen his left side, or anything of the sort.  In an effort to make lengthening "fun" and to strenthen his arms and upper body, his PT and SLP (for feeding-she does NDT stuff too) introduced him to this scooter board and hula hoop fun. By the way, thats his SLP pulling him around.

 He LOVES it. 

Unfortunately I have not yet mastered taking a picture of
AJ while he's on the board and  I'm pulling him here at home.  Have no worries, he loves this activities and
voluntarily switches from his tummy to the sitting position (pictured above)

AJ also uses a scooter board during his school PT time,
so OF COURSE, I did a search on scooter boards online.

I think anything tied to therapy has a gazillion dollar mark-up.  The cheapest I could find was $100. 

Until I went to one of my favorite stores, Big Lots.

It's one of those stores, like my other favorite,
Tuesday Morning, where you never know what your going to find. 

I found this:

Looks like a scooter board to me, don'tcha think?
It works great! 

The only thing that is kind of a pain, is that its made from mdf/pressboard, so we need to make sure we bring it inside after we've used it outside in the driveway.

Other than that, its awesome!

Oh, and how about that $10 price tag?  YAY ME!

Thursday, July 15, 2010

Swirling & Twirling

I have this piece of posterboard on AJ's bedroom door.  Bright red.  Easy to spot.  With nothing on it. 

I had intended to write down all the fun activities we planned on doing this summer all in one place. I saw the idea a while ago an a few crafty blogs I stalk have marked in my favorites.

There it sits. Blank. 

Because driving to and from therapies, doctor's appointments, and summer school is not fun.  At least not in my book.

My brain is literally swirling and twirling so much I can't seem to focus, relax, or any of the things I am commonly told to just do and I'll feel alllll better. 

What exactly is swirling and twirling?

I'm frustrated that we can't put a pool in our gigundo yard.  Apparently out lot is too wide and shallow and our lot lines don't leave much give for putting up a above ground molded plastic liner pool.  The whole point was to avoid dragging AJ to another appointment for aquatic therapy at a neighboring city's pool.  Over the last few weeks, I've seen a few pools that are clearly not abiding by the regs and you know what?  I ordered a smaller pool and we'll see if we can stick that sucker in the backyard.  Although, I'm not sure with our mosquitos. If not, we've asked some family friends if we can bring him to swim in their pools every now and then. 

At our appointment last week, AJ's CP doctor told me he should be doing lots of swimming (more on this below), and my heart just sunk.
I'm frustrated we have this gigundo yard and can't use it.  One word: mosquitos.  Ugh.  It makes me miss living in "the city".   We really aren't that far out, but far enough that our neighbors wear mosquito netting while cutting the grass. The mosquitos favor AJ's sweetness especially (he's so cute how could you not?), but seriously?!  We keep our lawn cut, as do our neighbors, and we have one of those bug zapper things that is full of dead mosquitos each and every morning.  It's still not enough.  If anyone has ever wondered why we don't have a patio set, or sit outside EVER, this is why.  A pretty hefty breeze needs to be blowing for us to be out and about.

fgggdff  **That was our yellow lab nudging me.  I forgot to feed them this morning.  Hang on.

I feel bad that forgetting to feed the dogs has happened a lot recently.  I feel bad that the most common words I use with them are no, lay down, out, get, and go potty.  They don't get to play outside as much, due to AJ's schedule and, you guessed it, those darn mosquitos. I never understood why some people would "get rid" of their dog after having a child.  While I would never do that, I now understand it-to a point.  Trying to meet AJ's needs and all of our animals needs has become increasingly challenging.  It does not mean I don't love them or want them, because Lord knows we love our animals, but its a challenge having 4 animals and AJ. 

I'm hoping and praying it doesn't storm tonight.  Ever since the big storm a few weeks ago...I am terrified of storms.  I read someone's facebook post last night about the storm coming in and from that moment on could not calm down.  That big storm shook me to my core.  Jeremy did everything in his power to calm me down, but I was still distracted, looking out the window every 5 seconds until it got dark.   I really, really, really need some good sleep.

I just remembered I need to pick up that receipt from the optical store today.  Ugh.  For our flex spending this year, they gave us something called a Benny card.  Its really quite neat.  It has the amount you determined for your yearly flex spending, and you use it like a debit card.  Well, our card was suspended until we can provide an itemized receipt for AJ's lens in his glasses.  Really?  What else would I buy at an optical store people?  To say the optical store has been helpful, would be lying.

In the 2.75 mile stretch from AJ's therapy clinic to home today, I pulled over 5 times to put his glasses and ears back on.  I've had it.  I'll keep doing it until he gets the clue we keep these things on in the car.  While it would be great to have someone sit in the back and monitor him, I can't have someone doing that everyday, so that plan doesn't work. 

AJ's been extremely sassy this week. We've stopped rolling him on his back on the yoga ball because its reminded him of how it feels to hyperextend.  He's hyperextending all over the place and laughing/giggling to get out of work.  Sometimes he extends so hard his implants fall off-and he knows it-so he laughs.  I'm a very frustrated mom right now.  Its sooooo not funny.  His listening skills are out the window.    He's pushing buttons, and reaching for things despite the word "no" being used intensly.

Go ahead, laugh.  While you think its funny, I do not.

I'm thrilled AJ's doing so well with his Auditory Skills Development. Today was our 4th visit and of course, I tell her he's doing this wonderful skill, and he chooses not to do it.  Which is common, I know.  But this is AJ's pattern, and it has become increasingly frustrating when I say he can do something and no one believes me.  Oh, Auditory Skills Development.  ASD I call it.  What is it?  Its basically AV, but we can't call it AV since we aren't following all 10 of the principles.  He is doing AMAZINGLY well.  I'll blog about this more later.

Today was ASD, and like an idiot, I scheduled feeding therapy right after.  We left ASD late, and as I'm running across the parking lot putting AJ in the car, I'm calling the therapy clinic to tell them we'll be late, like 20 minutes late, and I know it will be a short session, thats ok, I'm ON MY WAY!  We arrive, and I learn that they had our appointment 15 minutes later than what was on my calendar, so we were ok anyhow.   We're there so much, they said I should work there.  Not only that, but I don't check in, they know me by name, and we just walk back to the bathroom when we need to.  Its very casual. I took AJ into the bathroom so he could go before he ate lunch with his feeding therapist, and of course, he starts whining.  He wants to skip the potty and go eat.  Understandable but at this point, the whining was annoying and I hit my limit. 

The tears welled up as I pushed my hands on the peach tile wall, closed my eyes, and recited the serenity prayer.  Moments like that and days like today are often too much to handle.  And it just doesn't stop. After a rockin' feeding session, which included some new "Torchin' Tamale" pringles, we came home and once the whining resumed, I put him down for a nap. 

I think I'm still reeling from AJ's appointment with his latest addition, an orthopedic surgeon earlier this week.  I wasn't nervous going in, since I know the man.  We all met in Guatemala.  You see, Jer and I adopted AJ at the same time his daughter and husband were adopting their son.  The boys were one bassinett away from each other until they came home.  This surgeon was there in his "Grandpa" role.  His daughter and I are good friends.  We have a unique friendship, in that we adopted "together".  Same country, same place, same country, same timing.  She's always had this zen about her, I wish I could possess for even just an hour.

AJ will be getting botox in his calf next week.  This decision was not made lightly, and was made by myself, AJ's CP doctor, and the orthopedic surgeon.   The botox isn't as big of a deal as I thought it was, which is where the whole "knowledge is power" thing comes into play.  Well do this, and see what happens.  AJ's not only got a foot thing going on, he's got a bone thing too.  Yep, you guessed it.  I'll blog more about this later.

Sseing the ortho took me back to Guatemala.  Where I was silently comparing our kids in the courtyard while simultaneously enjoying the fountain.  God, I will never forget the sound of that fountain...mixed with the robust sound of the city buses.  It made me wonder if he "knew" when he saw AJ that something was wrong.  It also flooded my mind with memories of what we thought would be, and that...has been hard.  In early August, AJ will have been home for 3 years.  When and how that happened, I don't know.  But this time of year is always celebratory, and yet still holds a sadness for Jeremy and I.  A sadness that no one else can understand but he and I.  A panic, a trauma, a love so deep for this child that only grew deeper as we began our journey into parenthood

We don't often see the CP world.  What do I mean?  Well, we are immersed more into the world of hearing loss than we are with CP.  So when I see another CP Mom, I watch her like a hawk and ask a billion questions.  In my head of course.  Her son was in his chair (which wasn't a wheelchair but not a stroller either) and the big/little (I'm not sure) was there with her.  Again, with the tears.  At Mom's gentle request, the brother started wheeling the other brother around so Mom could finish the paperwork.  We want so badly for AJ to have a sibling.  How wonderful it would be for him, and for that sibling.  I stifled my tears as I noticed AJ was playing with the toys that were set up in the waiting room.  Another momentus occassion.   He was enjoying himself.  I find myself never understanding why expanding our family has been and continues to be such a battle.  I've posted on this before, so I won't drone on about it.  But it does bring me a great deal of heartache, and seeing that Mom with another special needs child, + 1 was bittersweet.

We're torn between a rock and a hard place with school/therapy related things for AJ.  While I won't go into specifics, my mind is constantly swirling, thinking, and re-thinking.  I'm constantly thinking of things for him to do, to reach his goals, and surpass them, but our days are full of therapies, and sometimes, I'm just too damn tired.  I can't do it all.  And yes, I KNOW I CAN'T DO IT ALL.  But when you are constantly being told what he isn't doing, you feel a sense of responsibility to get him to that place, especially when you BELIEVE HE CAN.  That line, "He's where he is today because of you two, his parents," carries a lot of weight.  if we weren't advocating for him, I can imagine the comments that would come flying out of people's mouths.  AJ needs to be pushed.  Jeremy and I know, all too well, what happens when we don't push AJ.  Even things as simple as us forgetting to brush him in the morning, or not reading books at night.  All of those "simple" things mean so much more in AJ's world. 

AJ's world.  It terrifies me to think of what would happen to AJ if we weren't here. If something should happen to both of us, what would happen to AJ?  This question was one of the reasons we went to the Guardianship seminar a few months ago.  While it is too early to tell whether AJ will need a guardian at the age of 18+, we still need to have a plan in place, heaven forbid, anything happens to Jer and I. 

Drafting a will with young children is hard enough.  Drafting a will when you have a young child with special needs is even harder.  Who do you choose?  It is NOT as simple as just adding your brother's kids to your own brood.  And if the people you chose say "no", who else is on your "We'd like you to consider taking AJ should something happen to us."  How's that for a conversation over dinner?   Its something that has been weighing on my mind heavily, for a long time.   If the need arises, I want this to be as simple as possible.  I've read on special needs trusts, and all that jazz.  Frankly, its a bit much if you ask me.  If you have someone competent, and knows exactly what your wishes are, that sounds more simple and realistic to me.  Anyhow, its weighing on me.

The responsibility of being AJ's mother is weighing on me.  A lot.  I am tired, exhausted, crabby, ok bitchy if we are being honest.  My patience is slim to none and the slightest thing makes me annoyed and stressed out.  I don't want to drive across town for summer school, I don't want to drive to therapy.  I don't want to play the guessing game of trying to figure out how AJ is feeling or what he wants. I just don't wanna. Its been just short of three years of craziness, and I'm ready for a break.  We're ready for a break. 

Jeremy and I have decided to take a REAL vacation for our 10th Wedding Anniversary next year. We've loosely planned trips before.  Many trips.  None that ever came to fruition due to something with AJ.  A surgery, an unexpected cost for something AJ needed.  Always some reason it didn't happen.   It is also terribly difficult for Jeremy to take off of work.  I'm thinking with months notice in advance, it may, dare I say it, be easy for him to actually use his time off for a vacation? 

Where?  Somewhere farther than 1 hour away.  Somewhere by plane.  That's sunny.  And tropical, with fruity tropical drinks.  Relaxation and Rejuvination Central. Where we can sleep all day, or spend all day at the pool.  No hiking, skydiving,  or shopping for us.  We want to do NOTHING. Somewhere where the food made by someone else and the sunsets are so incredible you don't want them to end. Somewhere where my husband can swirl & twirl me as we dance in the sand on the beach.  Yeah. That's my kind of swirling & twirling.

Tuesday, July 13, 2010

AJ's 2nd Cochlear Implant Activation

...was over a month ago.  Wow.

This activation was MUCH different than his first one.  He had suddenly turned into such a big boy sitting in that chair.  Pictures will have to suffice, as we DID record it, but I can't get the video to upload to Blogger.

We had him wear his
"ROCKSTAR" t-shirt from Peas:

Hearing the BEEPS with his new implant:

Hearing SPEECH with his new implant:

Hearing his audi say his name for the first time
{This was truly amazing!}

Left Ear June 2010 Right Ear April 2009

I'm ready world...

AJ has done extremely well with his new implant.  He's been wearing it with no problem from the very beginning.  We are now on our 13th program (something like that) and he's just now pulling the left off every now and then.  Things sound totally different to him with both implants.  The louder we turn him up, the bigger difference I see. 

When his audi called his name, shortly after she added his right implant back into the mix, he TURNED IMMEDIATELY.  At that moment, I KNEW we had made the right decision to go bilateral.  While I knew it was the right decision before, call this moment cement.

He heard an airplane the day after his activation.  He had never paid attention to airplanes in the sky before.  He tunes into the oven timer beeping, and other smaller sounds he never paid attention to before.  He is so much more in tune with his world  The general rule of thumb is that a child has all they need to develop speech and language with one single cochlear implant.  I a certain degree.  Some kiddos do remarkably well with just one.  AJ needed two.  'Nuf said.

AJ's activation was a special day, as it was our 9th wedding anniversary.  However, true to our past, everything was thrown into one day, so I don't really think we were able to enjoy this moment as much as we truly wanted to.  Shortly after AJ's activation, Jeremy and I had an appointment with his neurologist, which made the day very heavy on our hearts. 

AJ has been astounding the critics since his 2nd activation.  And I know he'll continue to do so....

Sunday, July 11, 2010

AJ Gets His Polka On

AJ attended his first festival: Polish Fest.  If you are familiar with the Milwaukee Area, the Henry Maier Festival Grounds host the biggest music festival in the world, Summerfest, as well as many other ethnic festivals throughout the summer.  We had a blast, and AJ did extremely with the crowd noise and music with both his CIs on.  You could definitely tell the difference when the "new" one would fall off and when you'd put it back on. 

*Relax, he didn't get anywhere near the beer. 
He was just checkin' it out.


Polka with Daddy!

Polish Connection:
The band AJ LOVED!

Serious conversation?

We ended the day at the splash pad!
Even though the water was ice cold, it was still fun.

Tuesday, July 6, 2010

Binder Mayhem

The activity board was the first project for my "Keeping It All Straight" series.  Next?  Binders.

I pulled them all down and layed them out... 

Quickly realizing that this system
 is no longer working:

Currently, I have AJ's records sorted by Doctor/Clinic with divider tabs.  The binder above is Medical 2007-2009...and is overflowing. I need to come up with a better plan of action for his records. 

Clearly, one binder is not going to be sufficient.  I did start a 2010-____  binder, but I think I might split the specialists into two different binders, alphabetically. 

The other binders represent organizations we have/currently receive services from such as respite, Birth to 3, and United Cerebral Palsy, as well as his plethora of school information. 

I am a firm believer in keeping all of AJ's paperwork organized.  There are many times I've needed to reference something while on the phone with the insurance company, scheduling another appointment, or working with providing information on AJ where I've pulled a binder and flipped to the appropriate section.  They have really come in handy.  I also keep all of my previous calendars (since AJ arrived home) on the shelf in the office.  I've had to reference those quite a few times.

Stay tuned for Keeping It All Straight Part 2: Binders...

Saturday, July 3, 2010

The Activity Board

Remember the activity board I made for AJ back in March? 

Well.... I finished it!

I couldn't resist teasing you!
Want to see MORE?!!

Thursday, July 1, 2010

Undoing the Undone

AJ has not had physical therapy since March.  His state insurance decided, for some reason, he was doing fine without it and flat out denied more visits.  When he had his cochlear implant surgery in May, AJ's PT resubmitted for more visits-thinking it would be a breeze to get post-surgery visits. Not to mention, AJ was not going to be receiving PT from school over the summer, so we thought it was a slam dunk requesting more visits. Your thinking what does a cochlear implant surgery have to do with PT?  A LOT.  Allow me to side-track for a moment.

About two weeks after AJ's first CI surgery, he got really sick.  We spent a few hours in the ER waiting area, mind you with my child's head and exposed surgery site around all these sick kids, and finally got into a room, where they gave him fluids and sent us home. Dx: virus.  He went limp, lethargic, and all around scared the hell out of us.

You can imagine our delight when it seemed like this was NOT going to happen this time post-surgery.  Well, it did.  It was the day after his IEP meeting.  A Saturday nonetheless.  We all know how difficult it is to get a hold of medical staff on the weekends.

Long story short: vertigo.  Not a virus.  Apparently it is common with CI surgeries, with kids it happens later (not immediately post-surg) because kids heal slower than adults.  We did not go to the ER.  We spent a lot of time on the phone.  He was back to himself within 2 days.  But let me tell you, the limp, lethargic, scariness was all there.  He stops walking, this time stopped moving all together.

Who do you think my 2nd call was to?  AJ's PT.  To make sure she was on board in case this totally knocked him for a loop. 

We were recently approved for 6 (not 8) visits from now until December. Which is crap.  In a previous post, I had mentioned something was better than nothing, so we initially chose to take what we could get.  AJ was enrolled in a summer tumbling group that his PT was teaching, so we were glad he'd see her during that time, in addition to our once a month visits, or whatever.

For the first time since March, AJ's PT treated him last Friday.  And it was NOT good.  How do I explain this?  He's in really bad shape.  His left side is SO tight its causing him pain and discomfort.  Between his tone and new exposure to sound through his new CI, ufta.  He has not been a happy boy.  His PT worked on him while we discussed a plan of action. 

I was literally crying inside while she was talking.  Tears of joy that she finally had her magic hands on him again.  Tears of anger at his cerebral palsy for it making my little man feel pain and discomfort.  Tears of anger at the stupid state insurance who thinks he doesn't need therapy.  At 3 years 11 months and 25 days old.  Seriously?  Tears of sadness and anger toward myself for letting this happen.  For not advocating and pushing harder for him to have more therapy.  AJ slept 4 hours after that PT appointment.  HE NEEDED THE PT, and NEEDED THE REST.  He woke up and was happy, and relaxed and ready to go.

She said the word I think I have found a hate for, and I don't hate much, people. 

AJ has regressed. 

He's extremely tight and his left foot is turning in so much we can't seem to get it straight.  His PT also thinks its time for Botox.  Sigh.

Our plan of action:
We will use the 6 visits from the state insurance, but are appealing in an effort to receive more visits.  We are also filing a grievance with primary insurance (through Jer's work).  When AJ "graduated" from the Birth to 3 program, his PT and OT both submitted to both insurances to allow AJ to be seen at the clinic vs. home.  (Home visits stop after age 3)  Our primary denied right away, stating it was not medically necessary.  But the state approved, so we moved forward.  Hopefully, our primary will take a look at AJ's case with a bit more detail and reconsider.

Once we use our 6 visits, we will begin private paying for phyical therapy.  Sigh.  AJ's PT would like to see him at least twice a month.  We're going to make it happen because AJ NEEDS IT.  Actually he's beyond needing it at this point.

The tumbling class we were so excited about?  Was cancelled.  The class cannot be run with only two kids enrolled.  Would it be inappropriate for me to go knocking on the door of the parent who pulled them out of the class and ask them to come back?  Please?  My kid needs it! 

We are also doing a massage regimen with him.  I do it AT LEAST twice a day.  We are very lucky that AJ does not mind the deep pressure massage.  We have a list of things to do with him in effort to help with length and separating his ribcage from his shoulder.  He just wants it all tucked up in there so nicely.  Not good.  We're also going back to ball work, which is helping a great deal as well.  Except, we've learned he's been rolling back and forth on the ball on his back at school.  Now I'm finding him arching, yep, I said arching backwards over his pillow.  NOT GOOD.  He does NOT need to start hyperextending backward again.  NO. 

Undoing the undone.  I hope we are successful.  We have had 16 appts so far this summer.  Next week AJ will see his CP doctor, and the decision on Botox vs. no Botox will be made.  I don't know why, but Botox scares the hell out of me.  In the meantime, we're just trying to keep AJ loose and pain-free.

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