Hello friends, family, and beautiful people following Mr. Huxley's brave journey! It's been a while!
On facebook I have joined a very large cerebral palsy support group, it is both overwhelming and amazing at the same time. One of the most important realizations that continue to come up over and over again is just how different each and every one of these individuals are. Sometimes there are similarities but for example, one therapy that was ground-breaking for one person had little effect on another and its astounding all the variance between. Whats fantastic about understanding this is that every person has their own timeline and when you can make peace with that, the day to day becomes easier and you become less fixated on the future. I've also noticed on the group that people with cerebral palsy tend to make gains in one area while pushing the pause button on other areas. It makes sense though that in forming new pathways in the brain, the focus would have to be concentrated in one part before re-building somewhere else. I've begun to notice this very idea in Huxley.
The last few months were a little rough...
Some challenges we were facing were surrounding eating, sitting, and sleep.
Hux had been eating SO well, we were getting positive reports from our feeding therapists and the young lad continues to gain weight at his own pace :) but then all of a sudden he had such a strong 'gag reflex' and if you didn't feed him quite right or if he wasn't in the right mood he would throw up like the girl from exorcist. . (We got really good at aiming him over safe surfaces) awesome. Not. So that meant that we fed him a lot more pediasure and had to take a step back from feeding.
Sitting.
Here's Huxley at 5 months sitting unsupported. From this point on he made a massive regression with sitting, its quite mind-boggling actually. The car seat traumas probably didn't help anything but whatever it was, it was very frustrating for him and for us to have the only position of comfort be flat on his back or up in our arms. (Now imagine carrying a 20+ lb weight around with you for majority of the day) EXHAUSTING.
Sleep has been a roller coaster ride, ups and downs but all in all we've been pretty lucky. I know that many people with cerebral palsy have a very hard time getting comfortable enough to sleep through the night. The issues we've had lately haven't been anything to do with Huxley actually, our upstairs neighbours have their door right above Huxleys bed and they have been extraordinarily loud in the evenings which has been waking him in the night. Not cool. So we traded bedrooms with him for the time being but we are looking to find a new home! My boy needs his sleep and we definitely need the break.
Now well Huxley was 'pushing the pause button' on these areas of development, he was working extra hard on language, standing, and use of his hands.
Huxleys receptive language (words he understands) is much greater then his vocal language but he's making gains in that area too! He doesn't say words clear as day all the time but words that he says are:
Mama
Dada
More
Dog
Blue
Milk
No
Words that he understands (To our knowledge but there are probably many more):
Under
Over
All foods that he is offered daily
Outside
Window
Car
Wheel
Book
Play doh
Many different animals
TV show
Light
Switch
Cloth, wipe
(Man I started the list and realized I could keep typing for a while, what a clever gent! So I'm going to stop here)
Standing comes and goes, when he was clearly learning in this area he was happy to be on his feet, was able to understand about coming onto 'flat feet' He tends to go up onto tippy toes (Just one of the many 'joys' of spastic cerebral palsy) and we even had him happily standing up to the couch supporting himself and playing with something in front all at the same time.
The number one thing that we noticed after his last ABM (Anat Baniel Method) intensive was his hand coordination. He used to make big sweeping motions that started out wide to the side and gradually came in but now he is able to reach directly forward if he wants something and we even taught him to 'give a low five.' We love ABM and can't wait for our next intensive, probably in the spring!
So now this will give you an understanding of what I was talking about above; the flitting about from one developmental area to the next. Making gains in some areas while pushing the pause button on others. Its so weird but fascinating at the same time.
Here's an update on Huxley now at the end of January.
For those that have been following Huxleys journey, you will understand how frustrating and scary it has been not having a seat for Huxley to sit in. We've been feeding him awkwardly in our laps since he was 6 months old. On a whim I purchased a 'clip on' high chair to try out with Huxley, I thought it might work because it supports him a little bit like the park swing which he loves so much. I'm a little nervous even sharing this news because I don't want to 'jinx' it but its too good not to share. LOOK AT HIM. He's sitting all by himself in his chair!!!!!!!! and look at the foods! He went from throwing up a ridiculous amount to eating soft solids. (That's a drumstick in his hand in the last photo) He now has a place to eat and play out of our arms and he is LOVING the independence. I'm so elated for him. In the top photo Huxley is beginning to work on sitting on the floor like he did waaaaay back in that 5 month photo. (That was all Matt and Huxley) I am so proud and inspired by my hubby's dedication to our super boy.
So just like the title said. We're seeing glimmers of light within a tunnel that sometimes feels dark and twisty. Along the ups and downs is a love so big for this amazing boy that never ceases to amaze us.
As always, thanks so much for reading and sharing in this big journey. So much love.
-Team Stuckenbergs
