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
