Reflections of a year gone by too fast

I thought that if I finished the year blogging, it might inspire me to continue into the new year. 

I started off by looking through photos and posts of this last year and it's so interesting to see how little Hux looked, and to reflect on what he was doing at the time. 

This first photo is of Huxley in January, sitting in his little clip on chair. We haven't put him in that chair recently, he's so darn big and long! We are working on seating in his very own wheel chair but I'll talk more about that later :) 

Seems that February was a quiet month but we matched one day in our red plaid, standing in our red kitchen ;)

Huxley 'flying' with his 'Nano' :) Brianna continues to be a huge source of support and love in our life. 

My dear, sweet, wonderful Grandfather passed away. He lived a very full life, is missed by all, but I'm so happy that I have this picture of newborn Huxley with his great grandfather Brown <3

In March Huxley had a play-date with his friend Olsen <3 I miss them dearly, they moved to the mainland but we are working very hard to get our boy mobile so we can visit loved ones near and far! 

April was hard. 

It was really really hard. To say it wasn't would be a big fat lie. These photos show glimmers of light within a very dark time, but don't let them fool you. It was straight messed up. I found our little Huxley fighting for his life one morning after a seizure tried to claim him. We spent 30 days in hospital, Huxley had two surgeries and a lot of recovery. We were SO extremely fortunate to have such a wonderful team of family and friends who donated money to us, fed us, texted, called, dropped in etc. We felt so cared for and it made this part of our journey a little bit easier. It really does 'take a village'. Thank you again from the bottom of our hearts, for whatever you contributed to us big or small. It filled us with light when we felt so dark. 

Oh and Matt and I celebrated 10 years of being together, Matt made Jambalaya and snuck beers into our hospital room. It was oddly romantic. 

In May Huxley had his g-tube surgery, it has been the best decision. It was not an easy decision to make but I truly believe it was the right one. We now give all of Huxley's medicine without any trouble, we can guarantee he gets all the calories he needs, and he can work on oral feeding without any pressure. Man does this kid love his food! He's eating textures I never thought he'd be able to, and his tongue looks so good. Huxley's ENT doctor did a beautiful job on his tongue repair. Wowzers. 

I celebrated Mothers day in the hospital, our nurses made me feel really special <3 We took an insane selfie upon returning home (you can see how crazy happy we are to be out of hospital) and we took the float plane over to Vancouver to see specialists but they didn't tell us anything new so that was pretty disappointing but it's always good to get a second opinion. The trip was worth it though to meet our friends who have a kiddo with the same injury as Hux! Love you guys! 

June we settled back into a regular routine, Huxley had his first hair cut! Matt did a great job :) Now he's a pro! 

Huxley celebrated his second birthday! It was wonderful. It was filled with friends, family, bubbles, laughter, and paw patrol. So. Much. Paw Patrol. 

In July we celebrated Canada day with Fireworks, we went to the pride parade via pickle boat, and Huxley showed us how fast he could heal his tongue. Three months after his surgery he was eating more by mouth then he ever had before 

In August we moved to our new place! We have a fenced yard for the dog and we bought an outdoor pool for Huxley! We spent almost every single day in the pool. Best. Purchase. Ever. Auntie Jena came from Ontario and we went to the petting zoo :) 

In September I went for a birthday hike with Matty, a wonderful cider tour with Bri, and I started taking yoga pictures again because it makes me happy. This life is full of challenges but you won't be happy if you don't take care of yourself along the way <3

October we had a fun Halloween with a little trick or treating and (my favourite) kid scaring   ahem handing out Halloween candy :) We celebrated world CP because there is so much to celebrate, so much challenge and adversity but so much strength and character despite it all! 

November we got a wheelchair to trial and look he's actually sitting in it! I mean he's not the most comfortable and he's been in it maybe max 15mins but we've been going for walks and are feeling very hopeful for seating in the future! He's getting there! We could not be more proud :) He's actually requesting to go in the chair sometimes because he knows he's going to get a chocolate reward HAHA. Sneaky bum. We continue to use the gait-trainer as well, but seating has been a big big focus as of late. 

December was wonderful. I LOVE Christmas. I'm one of those kooks. I try every year to make it more and more magical for Huxley. He opens a homemade advent calendar every morning, we read Christmas books, play Christmas music, eat Christmas treats ... the list goes on and on. He was spoiled rotten, thanks to everyone who got him presents we took two days to open them! We have many new toys to play with, new books to read, and an indoor swing that I can't wait to try out! 

Our year has had ups and downs, behind all of the sparkles and fluff we show on social media is tired parents, with sore backs, and an extremely full schedule. Matt is doing law school, I'm working three jobs, Huxley has therapy every week. blah. blah. blah. The list is extremely long, but we do make the most of it, we hold each other up, we carve out space for each other, and we love that little boy with such a fierceness. 

TEAM STUCKENBERG FOR THE WIN! 

Love you all, thanks for being in our lives 

xoxox 

HAPPY NEW YEAR! 

Cerebral Palsy Awareness day!

My motto for this life is 'one foot in front of the other.' I try to spend each day as it is and I try not to look too far into the future because the future is just a mystery. Cerebral palsy awareness day has me looking in all directions today, how far we've come, where we are today, and what we might face in the future. It is a day to help others to understand our little warrior and believe me you can't help but want to know him :)

Cerebral palsy is a movement disorder, it affects more people then you can imagine, and there is a wide range of outcomes along the spectrum. No two people with cerebral palsy are the same. 

This year I thought I'd write a letter to Huxley. 

Dear Huxley, 

                     You are amazing. You love animals, cars, puzzles, paw patrol, chocolate, and painting. (Just to name a few things). We go for walks everyday and even though you are carried I know that if you could run you would. Some days we go to the park so you can swing because it is something that makes you smile so big I think your face might crack :)

Your little arms and legs move differently then others but you always find ways to do anything you want to do. Your strength and determination are inspiring but your pure joy for life is what fills my heart everyday. Something really exciting happened in these last few weeks, you started taking independent steps in your gait trainer. One of your new favourite games is to chase the dog, Keenan is pleased as punch :) 

You can see in Brianna's face the sheer excitement we feel to see you cruising around, each new piece of independence you find seems to open up your little world just a little bit more. You are unstoppable my boy, you make us all better people for knowing you and sharing in your journey. 

Cerebral palsy is just a small part of you, and you are showing us everyday how incredibly smart you are. You talk so much in your own way (daddy and I know exactly what you're saying) but the world needs to know that you know everything they are saying to you. Just like any other child your age you are soaking in information like a sponge and boy do you love to learn! 

I'm looking to the future today, but only to be excited for every new thing that I know you are going to show us. 

I love you forever and always. You are my superhero. 

-Love your mama <3

Glimmers of light through the tunnel

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