Summer Updates

Wow. Hard to believe it’s been since May that I’ve posted here. We have, like everyone, been busy staying at home. Life has been much slower paced, with many more moments together. Some days it is overwhelming, but most days it’s been an amazing blessing in the midst of a pandemic. 

Wyatt has been continuing with physical therapy in the virtual world and it’s been incredible watching his progress over the past six months. The downside has been less time spent with his therapist, but the positive has been her being able to provide things we can do at home with the materials we have. 

Wyatt has many strengths and one of them is his incredible gift for impeccable timing. Usually it’s things like popping out his feeding tube just after I finalized a scheduled tube replacement for two weeks out, requiring an emergency room trip and an overnight stay. 

During the pandemic? He’s decided crawling is much more efficient, taking risks is way more fun than playing it safe, and furniture is definitely meant for climbing. Sure, these are all AMAZING things. Huge milestones. Incredible timing as I’ve been able to witness these milestones. Also incredibly inconvenient because we weren’t quite prepared and thank god for Amazon Prime to get all the toddler-proofing items we needed. 

Tomorrow we head in for a scheduled sleep study. Well I should say a rescheduled (three times? Maybe four... thanks COVID) sleep study. We are hopeful this study may provide some insight as to why he sleeps so little. Lots of people complain their kids don’t sleep. Ours actually doesn’t and even with some medication to help? He still averages about 5 hours at night. Then a nap of anywhere from 1-2 hours. His team is hopeful we can get some info from the full EEG he will have placed, giving us some idea of what’s going on neurologically while he’s sleeping. In hopes that we can treat it. 

The bright side? We aren’t worried about the trach conversation this time, which has been a theme of all of his previous sleep studies. 

I’ll leave you with this video. The video shows him crawling to get places (he goes further than this but never when I have my phone in hand), being incredibly “helpful” with the dishwasher, and some photos of him climbing. 

We hope you’ve all stayed healthy and safe!