Making Waves…

So I know that this coronavirus pandemic has everyone on edge these days. However, I am here to share some GOOD NEWS to hopefully brighten your day a bit!!

Since mid-March, all of Blaise’s PT and OT has been cancelled as a result of COVID-19. I was a bit upset because he had been making such great progress, but understood why these precautions were being taken for the safety of all.

Apparently, Blaise thought that Mom and Dad’s School of Hard Knocks was a fine alternative to PT/OT. Blaise has been making some great strides these past few weeks! In January when all of this started, Blaise was not eating any solid foods at all, he refused everything I tried to give him. In late January he started eating thicker purees and has been doing an awesome job! However, a week and a half ago, he started eating small bites of food, versus only purees. Here he is eating some PB&J for lunch. He can even pick up small bites of food using a pincer grasp and feed himself! What progress!

Blaise also didn’t drink anything except formula nor did he drink from anything other than a bottle until 1.5 weeks ago. He finally will drink water with no problem, and can drink it from a sippy cup! We are still working on getting him to hold the sippy cup himself, but he will get there soon enough!

And last but not least….drumroll please……. Look what this joker can do on his own!!

As I have mentioned before, Blaise has hypotonia, or low muscle tone, as a result of his disease. What this translates to- Blaise has difficulty coordinating movement, like sitting independently, crawling, etc. Blaise has been doing so much work to improve his core strength, and finally he got up on his hands and knees ALL BY HIMSELF (and held it for ~10-15 seconds!). This is a HUGE step! He also has been pushing off of his arms in this position and moving himself backwards. So hopefully, he will be able to move it forwards soon!

I would be lying if I said that all of the work we have been doing with Blaise was easy all of the time. Some days he doesn’t want to do the work and cries, or gets frustrated with the repetitive movements. Some days, his big brother just has to be in the middle of everything (two year olds…am I right?). And when we are the ones seeing him everyday, sometimes it is hard to see any progress at all, despite family and friends encouraging us that they see improvement. But I will say, when we get to see Blaise hit these milestones and how proud of himself he is when he does something new, it is worth every moment.