They See Me Rollin’

It has been a little bit since we had an update on Blaise’s progress (see Grind, Climb, & Landing post for the last “progress note”). He has been working very hard in physical, occupational, and speech therapies. We have gone through several grinds to get to today, but here we are!!

For reference, Blaise is 2.5 years old now. He crawls on all fours as his primary mode of transportation and does not army crawl any more (it took some time to make this full transition). He is also much better with his balance and can catch himself or ease his fall rather than just totally face planting every time if he gets off balance. To date he has split his chin open three times in two places- but it could be more!! He also started to carry things with him when he crawls!

As of mid July, he has a gait trainer. We have been working on his walking independence. He isn’t the best at steering, but at least he isn’t crying the majority of the time when he is in it and seems to enjoy walking and saying hello to people who walk by. We have been to some creative places to get some walking in (Lowe’s Hardware, the grocery store, the splash pad, etc.) but Blaise seems to do his best with a change of scenery! Here is a little insight to his walking!

He can pull to stand, but cannot stand without assistance or something to lean on. We hope getting his legs stronger with walking in the gait trainer will help him work toward standing independently.

As far as speech goes, Blaise’s expressive language is not very strong. For example, Blaise cannot speak in sentences. If he does speak it is one word that is not pronounced very well and you would probably have to understand the context in which he was saying something to be able to understand him. You will probably understand that when watching the videos below. You know what he is saying because Carl or I is translating for you. Here are a few videos of some of his words (don’t mind V’s crying in the background in some of these videos. He was having a hard time not answering all the questions for Blaise instead of letting him respond, so V had to go to his room for a bit…lol):

Blaise’s receptive language is much stronger than his expressive language. He can answer yes or no questions pretty well. This means when we whines or points at something, we usually have to play 20 questions to figure out what he needs, but once we guess the right think he will say “YEAH”. That has been very helpful. Here is some more demonstration of his receptive language:

His intense concentration and occasional misses with high fives and knuckles (knucks :)) leads us to hand/eye coordination and fine motor skills! Blaise still cannot feed himself using utensils, and quite honestly, needs fed for most meals. I do not know if the reason he doesn’t feed himself a full meal is because he is tired, lazy, or bored. But whatever the reason, he still requires significant help when eating to ensure he gets enough nutrition. Here is an attempt at using a fork:

While utensil use leaves a lot to be desired, other aspects of Blaise’s fine motor is doing really well. He is much better at stacking than he used to be!!

Last but not least, here are two videos “for fun” (they are a little longer so I won’t be offended if you skip these!!) showing Blaise get up on the couch and also crawling up the stairs. He isn’t the most steady, but really big improvements from where we have been! While we are so happy he is more mobile, I cannot say I am particularly pleased that he can climb up all of these places to potentially face plant. Yay for heightened mom watch…lol. But all joking aside, we are thrilled with his progress! He is doing things we were not sure if he would ever do. All of these videos were taken the weekend before his clinical trial started, so we hope to see some big moves once we get to a sustained full dose!

Thanks for checking in on Blaise’s progress, more to come!!