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