An update and a look at the year ahead

Hello! 

It's been many months since I have updated the blog! Don't think that it's because things haven't been interesting over here .. haha. We've been very very busy! 

Huxley turned 3 in June! Can you believe it?! What a journey we've had. We had a wonderful birthday party for our boy. 

In July we were gifted the tobii dynavox eye gaze communication system from both Presidents Choice Charity and JGL cerebral palsy foundation. Holy moly. We are so incredibly lucky. Huxley has practically mastered all the eye training games and has started working on basic communication. We are so excited for the potential that this system will help unlock for Huxley. 

Huxley has been tolerating his wheel chair more and more :) He's even smiling in it! If you've been following our journey for a while, you'll remember that we could hardly even bend this child in half when he was younger. He has always struggled with seating. This.is.huge. 

In August, we drove Huxley all the way to my Mums house in Coombs! This is the farthest we've driven Huxley since he was under one. The lie down car seat system that we have has been absolutely life changing. We spent almost three years being isolated in our home. I'm so thankful that he is comfortable in the car lying down, and that he is safely belted in. This summer we went to the beach almost every weekend and it's drastically improved our quality of life. 

In September our amazing Huxley started preschool! I seriously had doubts that we would see that day. He's been there for almost two months now. He goes twice a week for three hours at a time, he has an EA (education assistant) named Allanah who is amazing with him, and he's been having a blast with all of his new friends :) 

Okay! Those are some of the incredible positives in our life! 

You all know that it's not sunshine all the time even though we mostly share all the smiles :) 

Huxley has been struggling with reflux. (We think it's reflux). We've had lots of extra laundry due to spit ups and full-blown vomits. We've been dealing with retching, feed intolerance, and a very upset Huxley. We just had an appointment with a gi (gastro intestinal ) specialist from Children's Hospital in Vancouver, who came to the island for an outreach visit. He wants to see us in the new year in Vancouver to perform an endoscopy on Hux to get a better understanding of why this keeps happening to him. 

The appointment in Vancouver likely won't be until January. We'll spend two days, maybe three in Vancouver, and we'll see his muscle tone specialists as well while we're there. Meanwhile, we've been feeding Hux on an angle to try to improve this problem. It's only sort of helping. 

Next month our orthopedic surgeon is going to place botox in both of Huxley's calves. Hux hasn't been able to tolerate standing in a stander which is important for hip health, or standing still in his gait trainer because of tight spastic muscles. Botox will temporarily relax his muscles from getting 'too excited' and hopefully will help Huxley to tolerate all of the above and also his leg braces (afo's). 

Huxley also just had an appointment with our pediatric ophthalmologist and he wants to surgically correct Huxley's right eye which often wanders from weak muscle control. He wants to do that within the next year while Hux is still little, and it will optimize his abilities on the eye gaze system. 

We're going to try and patch this little pirate for six months to see if that helps to strengthen his eye before we commit to surgery. 

Thanks for reading and following along on our journey <3 We've been so busy with all of these extras on top of our usual schedule of therapies, dr appointments, preschool, music therapy, and alternative therapies. 

Life is full! 

-Stuckenstrong <3

What is a g-tube anyways?

Hi all :)

We've had some curious questions from people lately about Huxley's g-tube so I thought I'd write up a little post to provide some information and answers about Huxley's tube and about feeding in general. 

P.S we love when you ask us questions :) Answering them helps us to educate about kids like Huxley and then when you meet another person with cerebral palsy you'll be less uncomfortable and armed with some knowledge and understanding! 

This is what the g-tube or Mic-key button looks like :) When it is inserted, the balloon is not inflated, it gets inflated with water afterwards to hold it in place. 

Here are some of the questions we've had lately: 

1)  How does the g-tube work? 

The g-tube has a feeding port as you can see ^ and we attach an extension tube by lining up two lines, pushing in, and twisting. 

We attach a syringe full of food into the feed port ^ un-clamp the tube and push the syringe end to push food into his tummy :) 

2) What does he get fed through his tube? 

We feed Huxley everything through his tube! Many people with tubes are fed a formula based diet, but we decided to blend up real food and liquids for Hux, and we are pretty stoked on that decision :) We have a heavy duty Blendtec blender that liquefies everything so that its a smooth consistency to push through the tube. We also love the tube because we can easily give Huxley all of his medications through the tube and that's great because no toddler likes the taste of unflavoured medicine. 

3) Do you need to change his g-tube? Can you do that yourself? 

Yes his tube needs to be changed every six months or so and we've been taught how to change it ourselves. I've done it three times now! It's easy peasy and fast.

4) Do you need to keep his tube site sterile? 

No, his site needs to be bathed like every other part of his body but it doesn't have to be sterile. 

5) Does the tube limit him from doing anything? 

Nope! Huxley can swim, lay on his tummy etc. We don't have to take extra precautions with his tube :) 

6) Can Huxley still eat by mouth?

Yes! Huxley LOVES to eat by mouth. Right now he's eating yogurt, cheese, and chocolate by mouth. We still have troubles giving him liquids by mouth and no one can survive on those three foods alone haha. It's perfectly fine for him to be fed both ways though :)

7) Can the g-tube be removed? When will Huxley's tube be removed? 

G-tubes can indeed be removed. Huxley will likely always have his g-tube. I want you to know that we are completely fine with it and you don't have to feel bad about it :) Huxley will always be on some sort of medication to manage muscle tone challenges caused by cerebral palsy and we would much much much rather give it to him through his tube then in his mouth. If Huxley is ill and not wanting to eat or drink, we can tube feed him which will help him heal faster and we can prevent dehydration. Feeding him is a breeze compared to the hour + it used to take to get food into his tummy. Seriously, the tube is awesome. 

Please ask us any other questions :) 

Thanks for learning along side of us 

xoxo

In honour of Mothers Day, Reasons why i'm thankful to be a mother

Why am I thankful to be a mother? 

I have an ongoing journal that isn't a place to vent, rather it's my book of positives. I only write in point form about all the good things in my life. 

Tonight I began to write in my journal about why I'm thankful to be a mother since its the eve of Mother's day, but then I realized that I would rather expand on the topic because its so very dear to my heart. 

So here it is..

I'm thankful to be a mother because I get to help shape a life. 

Everything we do, feel, and say has an impact on Huxley. I've never known anyone as empathic as he is. He feels us, our energy, and I think its because we are deeply connected. It's hard to wrap my mind around the fact that humans are able to create other humans and for 18 some odd years we help shape who they are. What a privilege. I'm trying to become more level, more conscious of how we act around him because he's a sponge right now and he's taking it all in. 

I'm thankful to be a mother because Huxley stares at me with a love so immense it makes my heart feel like its going to explode. 

He looks at me like no one has ever looked at me before. 

I was his home for nine months, I brought him into this world. He looks at me and knows he's safe. I feel like I can do no wrong. He'll always forgive me because I'm his mama. We are forever bound. 

I'm thankful to be a mother because I get to love unconditionally.

People come in and out of our lives but I will never stop loving Huxley. There are no conditions on this love, it will always be there. I think that if you have ever experienced loss in your life, you will always feel a little fear (even if very small) that you will lose again. To be a mother means that I will forever love this being that was created from us and that love will never be lost.

I'm thankful to be a mother because I get to learn from my greatest teacher. 

Who knew that I would learn the biggest lessons in my life from a tiny not even three year old?! Huxley has taught me to be patient, he's taught me to slow down, he's taught me to open my eyes, he's taught me to balance, and he's taught me to care. He teaches with curious eyes, a huge heart, and even when we make mistakes or have regrets, he still loves us with his whole heart.

 I'm thankful to be a mother because I've become a better person. 

I was an 'okay' person before. You don't have to convince me otherwise, its the truth. Before Huxley was born I was so ignorant of true adversity. Since Huxley has been born, I have opened my eyes to a huge world of people, families, and children facing challenges every.single.day. I've become an advocate, and I care not just about my own, but for anyone facing daily adversity. We were put on this path for a reason and I'm not going to waste it, I'm going to do everything I can to help, share, and educate in this life to help others. I'm so thankful to my son for being here to help open my eyes.

I'm thankful to be a mother because I've learned to find joy in the smallest things. 

Anyone who has a child knows there is huge emphasis on "Milestones." What a huge word! Well when the milestones are not significant, what else is there? The small things! I love watching the way that Huxley is navigating through this world. I love his hesitations, his careful calculations of new scenarios. I love the things he finds joy in. I love his reactions to new stimuli. I love that he can light up a room, and I love that the smallest things have become huge in my world.

and Finally. .

I'm thankful to be a mother because it's made me a warrior. 

My skin is thick, worn like armor all over me. When you've seen what I've seen, you pick yourself up over and over again, and each time you stand taller. I'm a mama bear that will do anything for my kid. I will fight, I will get back up when we get knocked down. That's what a warrior does. I'm thankful for the power I've received from being Huxley's mum. Nothing can stop us my boy! The world is ours to take by storm!

I'm so thankful.

I'm thankful to our community of friends, family, and support workers. We couldn't do it as well without you in our corner.

Happy Mother's Day to every mama out there. 

I hope you can do something for yourself today because you are worth it, don't ever forget that. 

Thanks for reading 

<3 

#ThisiswhatHOPElookslike

This year for HIE (hypoxic ischemic encephalopathy) awareness month the theme is "This is what hope looks like." I'm completely in love with this theme because even though there are hardships along this journey, there is also love, joy, and so much HOPE! 

For me, hope doesn't look like holding out hope that Huxley will reach typical milestones though we never ever limit him. Hope to me is SO much more then that. Hope is living a full and joyful life, its about helping him achieve whatever his heart desires, and its about making sure that we stay true to our authentic selves along the way. 

To any of you fresh on your HIE journey.. 

I know that in the beginning it doesn't feel like there is any hope. I know that the journey feels raw, rocky, and so very heavy. 

I am here to tell you that no matter what your child's outcome is, you can choose to accept this new path and move on to a life full of joy in watching your child experience life's moments both big and small. You can move on to a life that is very full and very special. Your child will teach you in ways that no one else ever could. Your heart will break but it will also be filled with a love so pure. 

You will survive this. There is always hope in the journey. 

Love from a mama on a road to spread hope <3 

 

On raising a special needs kid: Why I did a 30 day yoga challenge even though it was taxing on my family

30.Days.of.Yoga.

Fitting yoga into our already maxed out schedule meant moving things around a lot, it meant early mornings, late evenings,  ordering out dinner, the house got messier, and we were extra tired.

Why would anyone do that to themselves?

I did it because I'm worth it. I teach 10 classes of yoga a week, but this 30 day challenge was just for me. It was some much needed self care and self love, it was just me and my mat sweating it out and becoming more whole in the process.

Raising a child with cerebral palsy is full-on. It is doctors appointments, weekly therapies, I put on many different hats. I'm his physio, feeding therapist, occupational therapist, speech therapist, and caregiver.

After each yoga practice I felt energized, happy, and I could be the most important person that he needs me to be. His mama. I can be his mum with a head on straight, with a happy heart, and even though this journey is a roller coaster I can see the positives that push out the darkness.

I encourage all of you who are also raising kids with special needs to take time to do whatever it is that makes your heart sing, so that you don't lose yourself in this journey because it's so easy to get lost and believe me i've been there.

Carving out space for myself was hard, it really really was but I knew that I was worth it and you are too.

Xo

* A massive thanks to all who made it happen behind the scenes, my hubby who took on way more responsibilities this month, my best friend who was a constant motivator, employers who gave space, and all who cheered us a long. Thank you from the bottom of my heart *

Bri and I with the 30 day sticker board :)