What a great time with this beautiful weather! Wyatt is in heaven! Jonny and I had a last minute amazing date night on Friday and I cannot put to words how lucky we are!
On Friday, Wyatt had a great time with his best friends at a baseball game ❤️ Wyatt has such a sweet bond with this teenage boy, his mom and sister. They all work at the daycare Wyatt attends and they are a huge reason why he continues to thrive! This summer he has a busy schedule with daycare field trips, he will have so much fun!
Wyatt’s preschool year is coming to an end and we are excited for his break. He has come so far and learned so much and know he will be at daycare learning, so the break is great!
Wyatt LOVES swimming lessons! He asks every day to go. He did scare his teacher one time with a fall that split his lip, but he was back in that pool as soon as we got the bleeding to stop. He has practiced paddling his arms and legs and dipping his face in the water and blowing bubbles. He is very unsure when he wears a life jacket, which was the main reason for starting lessons and we got tips and hints to work on this summer. When Wyatt’s body starts floating with the life jacket, he isn’t able to keep his body upright and forgets he can move his arms and legs so he gets scared and doesn’t want to try again. He does do well with the wing style floatation devices but we want to get him used to a life jacket.
Wyatt just finished Special Olympics and learned so much! He is now jumping… everywhere… and so proud of himself! He also is climbing up on ladders and swing sets so much better with a better handle on coordinating his body movements.
Wyatt had another big sick. It’s the same adenovirus, aka ‘common cold’, that landed him in the hospital last May. This year we were lucky enough to work hard to stay home despite unrelenting high fevers, diarrhea, pink eye and a gnarly cough and congestion. Ever since this illness he has been having more snoring and breathing pattern issues in the middle of the night causing some weird oxygen dips. When he is in certain positions laying it’s not an issue so we will chat with pulmonology and ENT regarding this. Wyatt is maxed out on the current regimen from pulmonology and ENT and has a referral for an allergist. However there will be some homeopathic remedies started in the future if no game plan for the next illness is made. This year he has needed more oxygen than he has needed in the last two years. He also had a huge milestone of being able to wear his food pump backpack with small amounts of fluids in the feeding bag, this was a huge game changer in keeping him home because with fevers his dehydration gets out of hand very quickly.
Anyway! We got passed that and have started an oral challenge! During illness and down times we will add feedings to gtube. But for the most part, Wyatt gets all medications, all hydration, a small food pouch to help his gut and that’s it. All calories/feedings have stopped and we are working on Wyatt eating by mouth. So far he is down a little in weight, which we fully expect because his body is adjusting to an oral diet. And he is eating really well, he has been trying new foods and textures and licking more. It’s been amazing!
We continue to work on all other life things for toddlers, potty training is just not a task he knows how to do but we continue to practice… aka does perfect at daycare and likes potty activities at home ((we have a lot of stickers on our wall)). He is working on communication via talking and signing.
Wyatt has his genetics appointment and pulmonology appointment coming up and his wheelchair eval, eye doctor and allergy. At some point he will have labs for immunology and nutrition again as well. Not sure how the genetics appointment will go, there is so little about his condition and depending on this appointment, we may get another opinion just to have a new set of eyes. I think his whole exome sequencing will run for a second time, but we are not sure. More to come on all of that.
Today he had a little urgent care fun to look at his eye. He had a tiny pin point scab after playing on Wednesday and it stayed the same until Saturday when his eyelid started getting red and swollen. It’s cellulitis and currently it’s all on the outside of his eye, he has an antibiotic but we will continue to monitor closely. If his upper eyelid pr lower eye lid start to get red, warm or swollen, then he will have an admission to Children’s for IV antibiotics for periorbital cellulitis. Crossing our fingers and toes it just heals and improves!!!
Hope everyone enjoys this amazing weather ❤️
