Tuesday, December 28, 2010

Blue Christmas

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

1 comment:

  1. Great post.. It's look like that you enjoyed your Christmas with lots of fun... and I wish, your coming Christmas comes with lots of happiness in your life and especially in AJ's life.


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