Hello!
As always it's been a while since I have been able to find the time to sit down and write! If you follow us on Facebook, you'll see updates here and there, and if you follow us on Instagram you'll get to see way more, I update daily about what we are up to :) Our Instagram name is stuckenstrong :)
Hux has been busy with preschool, music therapy, abm therapy, various doctor appointments, and regular therapy. Our calendar is insanely full.
Preschool
Preschool is the best ever! In September we'll get three days a week (we're at two days right now) and that will give me some nice breaks in the week which will be good with the new baby coming! Hux has been tolerating his walker for most of the day at school (three hours). I love that because he's at his peers level when he's cruising around the classroom! I'm really pleased at the results we got from doing botox, I believe that it really helped Hux to be more comfortable walking in his walker. We've seen some beautiful flat foot walking, and he's tolerating standing in stillness as well. Soon the botox will wear off and we'll have it done again, this time in both his calves and his hamstrings to help him feel some relief from the spasticity in his legs. Every time I pick up Hux from school I get a report of how great he did, what he got up to, and a little piece of art to take home, it warms my heart!
Music therapy
Music therapy is held at the conservatory of music downtown Victoria and it's so fun. We have a little group of four that attend each week and all have different abilities :) Hux is working on vocalizing in the class, and working on 'squeezing' tight on an instrument to practice not dropping. His ability to hang on is getting better and better. Hux has always loved music so he's all smiles when we go :) Music therapy is such a lovely compliment to everything else we're doing.
ABM (Anat baniel method)
Huxley does an alternative form of therapy called abm movement therapy. They don't focus on reaching specific milestones but to help the brain cultivate an awareness of all limbs, and to help them organize in order to facilitate movement when ready. We've been doing it off and on since Hux was little, but we've been doing it quite regularly because we've been so lucky to have a therapist who has been learning the method so we've been able to have sessions for free. An extremely rare and special opportunity. Sessions are usually $90 or more. Since we've been going regularly we've seen consistent rolling from Hux, he's vocalizing a lot, he's started laughing at situations (the other day I was doing art with Huxley and he knocked the paint on to the ground and thought it was the funniest thing ever. I told him it wasn't funny (jokingly) and he laughed harder) oh my! Huxley is also reaching well, and has made a huge gain with comfort while sitting.
Doctors appointments
We wrote about our trip to Vancouver on Facebook, you can see the write up and pictures there. We got the results of his biopsies and everything came back normal which means that his vomiting was likely not from reflux but was more of a volume issue. (Meaning we needed to tweak how much we were feeding him and how much space between feeds). Since we made the change of timing, and volume, we've seen a much happier Huxley and little to no vomit. It was good to have confirmation that he doesn't have damage from all of the reflux he had in the past. As I said above, botox injections will be coming up soon, we'll have another follow up with Huxley's ophthalmologist to discuss straightening his right eye, we've been trying to get into neurology to have a check up, Hux and I are both going to an amazing chiropractor who specializes in pregnant women, and children, he'll have hip x-rays done soon to check on his hip placement, and we'll have a pediatrician check-up soon and ask her to sign off for a parking placard for us!
Regular therapy
We've had a little break since about Christmas time from seeing our regular therapists, but i'll update you anyways. Physio set us up to trial a stander which is a piece of equipment that holds Huxley in a standing position which is important for his hip health. Hux is tolerating it for short bursts, the one we have is really awesome. We also go to Queen Alexandra (our centre for special needs) to do physio in the gym there since there is so much space and equipment to use. Our OT is coming next week to play with Hux in his wheelchair. We are starting to put his tray back on, and I asked her to bring some tactile things to play with to keep him entertained for as long as he'll tolerate. Our OT also got us a splashy bath seat which has straps to hold him secure in place and I'm so happy to report that he LOVES it. The warm water must feel so good on his muscles at the end of the day, he kicks and splashes around, plays with toys, and giggles with delight at our silly antics. Our SLP has been working with us on the tobii dynavox (Huxley's eye gaze communication system). We really need to up our time on it, truthfully it's fairly challenging with him sitting on our laps to hold him steady while he uses it, but we are hopeful that we can start using it in his wheelchair.
Home
We love our new home, it's so close to being all put together. Huxley's room is on the main floor which makes it easy to care for him. We got a video monitor so we can see and hear him sleeping from upstairs. At home we do lots of play therapy, Matts been taking Huxley for walks to the nearby park in his wheelchair, we do painting and other crafts, we feed Hux by mouth throughout the day, and we do various forms of therapy. Hux seems excited about the new baby :) He is showing us with happy facial expressions, and body language when we talk about it. I can't wait for Hux to be able to feel the baby kick :)
Life is full, but going well right now. That was Huxley's insane schedule but Matt and I have our own schedules on top of all of that. I'm not sure how we make it all work some times but we are team Stuckenstrong and we always get it done.
<3
