Freaking Fantastic!

I’ve been asked that a lot lately how Hudson is doing so it’s probably time to write an update. Truth is he’s doing FAN-TASTIC!! He hasn’t had a grand mal seizure since last July after starting the ketogenic diet for epilepsy. This means he hasn’t been in the hospital since then either – in one month we won’t have been in the hospital for seizures for an entire year!! He’s just started a wean of his last pharmaceutical for seizure control. In a few more months he will be completely off pharmaceutical seizure meds and have control of his seizures with the Ketogenic diet and CBD only. I will be so happy to have him off those meds! The only possible side effect has been swelling in his cheeks – we are still trying to figure out why his face has swollen so much – he’s getting some tests done with endocrinology.

His stamina driving his power chair continues to increase as well as his skills. He wants to drive everywhere all day long and he wants to be a part of everything happening. It’s so much fun to see him assert his will and go where he wants to go. He still needs someone with him the entire time he’s driving. His back-up skills still need some work and left alone a 300lb. power chair can do some pretty good damage to feet and walls. However, we have been playing with more and more independence. For example letting him drive back and forth on the sidewalk in front of our house while we watch from the driveway. It has been an interesting journey because in a lot of ways he never had the opportunity to push boundaries until now. It’s resulted in a lot of personal growth for him and he’s acquired a lot more skills than just driving by having mobility. He’s had to learn to stay with us when we are in the store – he can’t just take off down the another aisle by himself. Or driving down the street we’ve had to teach him to look both ways and that he can’t go farther away from us then we can see him. I’m still so proud every time I see him navigate a tight spot – he’s a pretty amazing driver when he wants to be. He also still plays power soccer twice a month with other individuals in power chairs. He’s getting better and better. He’ll now take the ball towards the correct goal but still prefers to pass the ball instead of make the goal himself.

He’s using his speech device quite a bit more as well. I think that’s because his power chair has a mount on it so his speech device is always with him. He’s creating the beginning of sentences like “Addie play ball boy.” I don’t know why but he refers to himself as “boy” on his talker instead of “me” or “I”. It doesn’t really matter because he gets his message across. He’s actually giving his first presentation in front of his class this week – he’s doing a giraffe report from his speech device. I’m really hoping for a video!!

In addition we finally have him in General Education and the consensus from everyone involved is it’s working really well! The phrase used was actually “he does so much better in Gen Ed.” Following that statement they even decided to do push-in services meaning instead of pulling him out of class for PT, OT and Speech they are delivering the services right in his classroom. Academically he’s progressing faster, socially he’s a lot more accepted by his 2nd grade peers and his social emotional development has grown as well. His Gen Ed teacher takes full responsibility for his learning in the classroom and is working hand in hand with the Special Ed teacher. He was automatically placed in Gen Ed for 3rd grade next year but of course new teacher which makes me super nervous we’ll need to advocate all over again, but such is the life!