10/21/2026
What a LONG day! ❤️
We were up at 5:30 this morning and made it down to the hospital by 7 AM for Timmy’s appointments. Now we’re at his sleep study, praying he sleeps most of the night so we can get an accurate picture of what his sleep looks like. 🙏 I dont suspect much change from the last one but we will see!
Today, Timmy saw a neurologist who specializes in movement disorders and an eye doctor.
His neurologist has gotten to know Timmy pretty well and spent a lot of time talking with us about his irritability and some new twitches we’ve been noticing. We were concerned they might be seizures, but thankfully, at this point, they don’t appear to be! ❤️
With all the irritability he’s been experiencing lately, especially with teething, his muscle tightness has been increasing, which seems to be contributing to the twitching in his leg.
We’re going to make some medication changes and adjust the timing to hopefully help him feel more comfortable while also allowing me to get some sleep. Since we currently don’t have night nursing, I’m the one getting up throughout the night to give medications and care for him.
We’re still waiting for a night nurse. We have one we absolutely LOVE who will be returning from maternity leave soon, but she’s only able to work three nights every other week. We’re so thankful for her, but we’re still praying for the additional help our family needs. ❤️
One of the best parts of today was hearing both doctors recognize how far Timmy has come. They acknowledged the milestones he’s reached and how much progress he’s made. Even through the irritability and the hard days, his little body is still learning. 🥹
His eye appointment brought more encouraging news. His vision and eyes have improved greatly. One of his eyes is still a little droopy, so we’re working on ways to help both eyes work together to send information to his brain, rather than one eye having to work harder than the other. For now we are ditching those cute glasses though because he doesn't need them anymore!
Our eyes play such an important role in how we take in and process the world around us. This is something we’re also working on during our trips to Louisiana, so we’re glad to keep building on that progress here as well with the support of his home doctors. Again, they were wary on us going down there to now, encouraging us to continue.
Days like today are a reminder that caring for Timmy means constantly learning, adjusting, advocating, and celebrating every bit of progress along the way.
PCH2A brings challenges we never could have imagined, but it doesn’t mean Timmy has stopped learning, growing, or surprising us.
We’re tired. We’re praying. We’re figuring things out one appointment at a time.
And we’re so incredibly proud of our boy.
Please say a little prayer that Timmy sleeps well tonight, that we get some good answers from his sleep study, and that we can get the nursing support we need at home.
