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

 

Best time of year!

Man alive I've been neglectful on the blog front! Partially its because the breastfeeding course I was taking kicked my butt. Thankfully the course is finished and I can now practice as a breastfeeding educator! 

Christmas season this year has been way way way more fun then it was last year, Hux was only 6 months last year at Christmas.

This year he is participating a lot more and it is adorable! Huxley's 'receptive' language is really blossoming and it is so neat! Each morning Huxley and I take part in the advent calendar that I made:) 

One of my favourite games is to ask Huxley where things are all around the room and he shows us where they are with his gaze because he isn't pointing. It is amazing to see all the words that he knows. I think 'advent calendar' and 'Christmas tree' are among his favourite haha. 

Huxley helped us decorate the tree, we've made a few Christmas crafts, and we have plans to go visit a few of the Christmas themed displays in town :)

In early December Huxley had an ABM intensive with a lovely instructor that came up from the states to work with a few kiddos. It was six sessions in three days, Hux was exhausted but we really love this therapy and see the benefits. 

Some new things Huxley is doing: 

1) You can ask Huxley to give you a 'low five' and he'll pop his hand into yours which is awesome!

2) A favourite game of Huxley's is to knock over things that are on the table with his foot, we call it 'skamp foot' he laughs his head off. 

3) As always, we continue to work hard on seating with Hux. He is being placed in different seating positions throughout the day and he is slowly getting more comfortable. 

Sensory bins help :) Beads and Christmas sparkles!

4) Huxley just got a walker, our physio said she wasn't going to give us one until she thought Huxley was ready and the other day she brought one! He loves it so far but its a lot of work, hoping to get a great video soon to post! 

5) Huxley knows to turn pages in a book :) 

6) I finally got Huxley on my back again in a carrier after a major break

As we come towards the end of the year I start to think about everything we did and how far Huxley has come! He is an amazing little person, we couldn't be more proud. Huxley is on a slow but uphill climb on this path called life. I just love how hard he tries and how curious he is to learn about everything around him. My biggest wish for next year would be to travel with Huxley in the car because there is a whole big world out there to see and learn about! 

I hope you all have a safe and happy holiday season! 

Love the Stuckenbergs <3 <3 

What happened in Spooktober??

October blew by. 

I'm heading into the final weeks of my breastfeeding educator course, tomorrow I will spend the whole day on the labour and delivery floor at the hospital to observe new mamas breastfeeding. I have several more observations to complete, a group project, and a final exam. Busy bee! 

In October I always try to do as many Halloween things as possible, it's a favourite holiday for me, it's right up there with Christmas. I had my fill of pumpkin beers, I carved pumpkins, got spooked at a haunted farm, and got to take Huxley out for his first trick or treating experience! 

Here's our little monkey and his treat pail :)

What's new with Mr. Huxley? 

• Huxley has been having fun learning to maneuver his belly scooter and I was able to capture this awesome VIDEO of him roaming all over the kitchen! 
• He loves knocking down block towers that we build, sometimes I can't build them fast enough haha
• He is really interested in how something can go into something and you can also pull something back out! I stuff his bunny into a cup and he pulls it out, he has been practicing putting one stacking cup into another one. It's adorable how excited he gets about it :)

• Here's Hux in his stander playing with cars! He loves cars, we have wind up ones that zip around really fast. He is reaching out purposefully so well for objects that he wants to play with. He's getting a bit locked up in his stander and other equipment right now so we might have to take a break. It's so interesting how one day he's totally fine doing a certain activity and then the next he has a full blown melt down. I have to remind myself that he is a toddler haha and that he is probably exhibiting typical toddler behaviour. 

• Huxley loves sensory play, I did this 'mess free' sensory halloween craft with him! Look at the beautiful art he created by smooshing paint around on a saran wrapped surface 

• This child loves swinging. Look at that pure joy. We have to buy him an indoor swing so he can feel this way everyday. 
• Sitting in equipment such as his 'tomato chair' is not going very well right now, as I said things sometimes come and go and we haven't been able to take him in a car for probably six months so sometimes we feel a little 'trapped' at home but our therapists are all very sympathetic and they are trying their best to help us to help him feel comfy. 

When some everyday things like 'sitting' are hard for Huxley its easy to get swept into worry. All we can do is give him the tools necessary to succeed and fill him with lots of love. I'll be so consumed with worry and then he'll show us something amazing like hold 'four point' (all fours position) all by himself for several seconds. It happened the other day and it surprised me so much! His determination has always been inspiring. As always thanks for reading <3 <3 

We are looking forward to Christmas and we have an Anat Baniel Method instructor coming from the states (she used to live in Victoria) to work with Huxley and that is very exciting too! Click Anat Baniel Method for more info :) Stay tuned pals!

World Cerebral Palsy Day!

What does this day mean to me?  

I believe that every day could be spent helping others to understand what cerebral palsy is in order to encourage awareness and support for the cause, but when there is a designated 'awareness day' it helps to spread the information faster with a mass of people that also want to share. 

A company called 'Firefly' that designs supportive equipment for children with special needs came up with a list of cerebral palsy facts and I'm going to share them in hopes that it is an eye opener for you and it will perhaps answer some of your questions and maybe spark some questions that you might like to ask, (I'm always happy to answer questions!)

 

 Such great information! I hope you enjoyed reading it :) 

What's new?

Hey all! 

I wasn't able to post last week because I had a massive amount of reading to do for my breastfeeding educator course! I'm so excited about this class :) Our first section of reading is about the benefits to breastfeeding. I'm finding it interesting reading about the protective enzymes in human milk and what it can do to boost a baby's immune system. It makes me want to re-lactate so Hux can get all the benefits!

Check out what I made! Wipe wash solution in the big glass jar and muscle rub for Huxley, we put it on his body for overnight because he doesn't get a nightly dose of Baclofen and it seems to help him feel more relaxed come morning time! I have a massive project list but these two are quick and easy so they were finished first :) 

Little Mr. Huxley having fun in the leaves :) 

We've started feeding therapy its a slow process, but Hux is still doing pretty well in the weight department so I'm thankful for that. We'll be going to a music/speech class in Oct/Nov so yay! Huxley LOVES music :)

Check out this VIDEO of Huxley! He's trying with fierce determination to get mobile !

I think that's all for now pals, until next time

xo

Pregnancy Happy Hour!

Locals to Victoria, Have you heard of Pregnancy Happy Hour?!

It's a fabulous pregnancy group that meets for tea and a chat every Friday evening at 5pm at 'Mothering Touch' the centre for new and expectant parents!

(which just so happens to be where I've been working for the past 4 years!) 

Pregnancy Happy Hour in the nest!

When I was pregnant with Huxley I closed the store at 6pm but always made sure that I ran into the space that we call 'the nest' to sit in on the last half hour of the group. It was a safe and comfortable space to share with others about everything and anything that was going on during our pregnancy. 

Founder, Director & Co-Owner of The Mothering Touch Centre

Mothering Touch's very own Eva Bild facilitates the group and I cannot say enough about how amazing her wealth of knowledge is on the subject of pregnancy, labour, postpartum care, and beyond! Eva always has a story to share and valuable advice to put you at ease. 

This group is fantastic at any stage of pregnancy, one thing I really enjoyed was the different perspectives that all the different women were able to give, each experience of pregnancy is unique and there is always something to learn about this very vast topic. Once you start going to pregnancy happy hour you can't help but return each week to see how everyone else is progressing and new questions pop up during each stage of the journey. The friends I made in the group became my 'new mom' friends after we had our babies, we started going to new baby group together, and now at a year we are all still friends! I felt so thankful to meet other expectant women because I was the first to have a baby out of most of my friends and this group made the experience feel much less isolating. 

Please feel free to share with your friends about the group because it truly is an asset for expectant women here in Victoria and we love to meet new people! 

Here I am at the start of my 3rd trimester in the nest!

Thanks for reading! 

Positive minds live positive lives.

Last posting I shared a little about what it was like living in what I can only describe as 'darkness' during the early months after Huxley was born. Matty and I used a white board to write down all of the positives that happened within the day as one way to feel uplifted and it really helped. The white board was turned into a schedule board a few months later and now sits unused. I think that instead of the board i'll share some positives on here every once and a while. 

As I sit on our couch with my feet up, dog by my side, hot cup of earl grey on the go, bedtime jazz playing in the background, and the smell of wet earth floating through the room mixed with cinnamon in-scents I realize that I am happy. 

For the moment all is well. 

If you hadn't heard, Matthew has graduated with his masters in political science. I had the privileged to attend his defense and I couldn't be more proud and inspired. How on earth was he able to conquer such a milestone with the year we just had?! Matthew is the most driven, passionate, and dedicated person I know. Through all the trials he still managed to be an amazing dad and my biggest lifeline. I would have crumbled if it wasn't for him. 

In thirteen days I will be attending a lactation consultant course at UVIC for one semester and I couldn't be more excited. Birth culture and community have become so important to me in these last five years or so and I am jazzed to add to my skill set and to become educated to help women with one of the most challenging things they will ever do. Feed their babies. Just as many refrain from sharing the massive shift that happens when you have a child, the trials of learning to feed your baby is also a best kept secret. Hopefully with this next level of education I will be able to help better inform women about not only the joys of feeding their babies but also the importance of knowledge when it comes to some of the challenges that can arise.

We had a lovely walk and lunch with some dear friends, Huxley did so well. Its not often that we dine out all together as a family so it was a rare treat. Here's a picture of a very sweet moment during the lunch :)

Today I decided that I need to start up a home yoga practice again. At times i've felt like i'm falling away from who I was before Huxley was born so piece by piece I'm going to try to put parts of my former self back together but modified a little with our special amazing boy.

Well friends that's all for now, bed is calling, tea is empty, my heart is full.

<3