Keep on Blaising…

The last time we gave you all an update on Blaise, he had just reached the 6 month milestone on AT-007 (also known as govorestat), way back in July of 2022! Needless to say, a LOT has happened since then.

Blaise has continued on this investigational drug provided to him through Applied Therapeutics since that time, and appears to be doing quite well overall. While it is difficult to draw conclusions from this N of 1 trial, we continue to see no untoward effects from the drug.

We see that he continues to progress in all of his abilities, and over the years we have definitely seen improvements in receptive and expressive speech, as well as both his fine and gross motor skills. We recognize that this likely would’ve happened with or without being on a trial- because kids grow and develop cool new skills- especially in the early years of their lives 🙂

Check out Blaise riding his bike all by himself!

Here is one of Blaise building with magnatiles!

Here are a few of his gross motor skills (standing and taking steps)

However, there are some more objective things that we think might not be happening without this medical intervention. For example, Blaise’s most recent labs resulted with everything within normal limits! This has never happened in his life! Most importantly, we know this medication is not harming him based on his lab work, and that is good enough for us to keep going. Also- one of the best things about this medication is that it is a strawberry flavored oral liquid given once daily. Blaise doesn’t put up a fuss taking it in the morning, and we do not have to worry about administration at school or keeping him up later to avoid a dose in the middle of the night.

Speaking of school, Blaise has been very fortunate to have been able to attend Sandhills Children’s Center for his pre-K (and pre-pre-K). This has been such a wonderful environment for Blaise. Classrooms are a mix of typically-developing children and children with disabilities of all different kinds and severities. This means that Blaise is able to interact with other children of all different abilities on a daily basis, and his teachers are all very experienced with children of all abilities. He loves school, and this year he takes the bus home (which might be the favorite part of his day. He is always beaming and exciting to tell us about his bus ride!). Additionally, he receives regular therapies (PT, OT, speech therapy) during the day at the center. This is so nice because trying to fit 6 therapies a week into our schedules after school would be a certified nightmare!!! We have been so pleased with his experience there, and will be sad when he has to leave… for KINDERGARTEN. It’s hard to believe that he will indeed be starting kindergarten this fall. (I’m not crying, you’re crying😭😭?!)

Selecting the right school for the boys has been a huge of a challenge for us (I think the sentiment has been ‘We plan, God laughs’). Navigating school systems that are dramatically different from what we grew up with, combined with the added complexity of ensuring that Blaise’s needs are met has been hard. In an ideal world, we would have access to a school that teaches our children in a manner consistent with our values, incorporates faith into the curriculum, and provides ample extra-curricular activities to explore interests and abilities outside of a classroom setting. As no such “perfect” school exists in our area (and possibly anywhere) it has been a long and winding road in order to identify a school that best meets these criteria, knowing that we will need to remedy any deficient areas outside of the school setting.

After a pretty exhaustive search, I took a little bit of a gamble and signed big brother up for a lottery for admission to a charter school in our area. The school seemed to have the best mix of qualities and capabilities, operating as a bit of a hybrid between public and private schooling. We felt like it would give V a chance to excel while also being able to meet Blaise’s needs. As luck had it, V was admitted to STARS (Sandhills Theatre Arts Renaissance School), and he has THRIVED this past year in Kindergarten. Watching him grow this last year has brought us so much joy. And of course the best part is that come Fall, Blaise gets to join his older brother. Finally only one school drop-off! They will both get to ride the bus to and from school each day, and we’re so excited that Blaise will have his big bro looking out for him at school (because after all, V is his favorite person!)