Monday, I have no complaints. You kinda came through for us today.
We started the day with a Vision therapy session with Jello- how fun is that?! But really, G wanted nothing to do with the jello in his mouth- I think he’s like his momma and doesn’t have much of a sweet tooth. Plus, jello is more fun to smash with your hands and fling off a spoon than eat anyway. We love Vision therapy because it’s all sensory play- since we aren’t sure how much vision Grayson will eventually have, we are giving him as much exposure to things with his other senses as we can. Also, his therapist thinks she has found him the type of swing we need to get him next! (G’s poor baby swing groans every time I put him in it). The school district has one at one of the elementary schools and we are going to check it out next week.
This afternoon we went to Grayson’s school and met with his teacher to learn about ipad apps they will be using with him next year. There are literally hundreds of apps for kids/special needs and it can be overwhelming to try to find the best ones. His teacher spent a lot of time showing me specific ones that they use, but also showed me this site. Even if you don’t have a special needs child, from the little time I’ve spent on it, BridgingApps is an awesome resource for all families, regardless of their child’s ability level. The apps are filtered by target skills and reviewed by therapists. Check it out! Thanks to an amazing, generous friend, Grayson will be getting an ipad soon. We are so, so grateful- I really think it’s going to be an incredible tool for him. I can’t wait to start app shopping!
While we were at the school, the other teachers graciously took care of Grayson while I talked to his teacher about apps. The school actually has a ChildRite seat (the special needs version of the Bumbo- really it’s just a giant Bumbo). I’ve been wanting to get one for Grayson, because just like all his other baby equipment, he still needs it but is almost outgrown it. We tried it out, and it works perfectly. I think I’m going to order him his very own soon!
As we were leaving the school, I checked my phone and saw the best email I’ve received in a long time- it was from Grayson’s case manager at MDCP, who I have been emailing and calling for a week with no response. Grayson qualifies for MDCP!!!!!!!!!!!!!! We knew this was probably going to happen (since the case manager told us he was ‘automatic’ due to seizures) but I was still nervous until we had an official word. This is a HUGE weight lifted- we will get Medicaid as well as respite hours. There’s one more big hoop to jump through- we have to spend one night in a nursing home. We found a nursing home a few months ago a few hours from us, and the Admissions Coordinator has been wonderfully patient with us. We are hoping to do his stay early June so we can get our benefits going ASAP! Qualifying for Medicaid also means that Grayson will be able to get private OT, PT and Speech at school next year, which I am so excited about (for him!).
Tomorrow, Grayson has his hearing aid appointment, Wednesday we see his GI, and Thursday is his big testing day. No one can tell me that being Grayson’s mom isn’t a full time job- ha!
Right now, I am so excited for Grayson and everything he has going for him. Despite his struggles, the kid really has some incredible opportunities and people in his life. And I am learning SO much- more than I ever cared to know about genetics and metabolic testing, but I’m grateful the information is out there.
**Please continue to pray for my friend M and her Baby C. He is still not out of the woods. Thanks.