Just Another Update
I know my last few posts (including this one) are just records of Grayson’s medical stuff, but it’s good for me to write it down to have as a record. I promise I’m not giving up on more interesting (or not) posts about our life, but there are things I just can’t write about right now. So in the meantime, here’s an update on the G-Man…
We got some very good news this week- I had the Mito clinic fax all of Grayson’s test results to our neurologist, and I requested a copy of them. We haven’t discussed the results with a doctor yet (we will with the neuro in two weeks) but from just reading over them, I don’t see anything immensely horrible or life threatening. There are some abnormalities on the MRI report and some levels of things I can’t pronounce that are low on the spinal tap report, but that’s probably just par for the course with Mito. We should get the results of our genetic testing back around next Friday (it’s been a loooong 15 weeks of waiting) and hopefully that should give us a more complete picture of what we are dealing with. I’m not getting my hopes up too high since there’s a chance the test could give us no information.
We also finally talked to our MDCP case manager (after a million voicemails and emails that weren’t acknowledged) and she thinks we will be able to get about 39 hours of respite each week. Of course, I probably won’t use that many, especially since he’ll be in school 3 days/week next year- I would like to actually see my kid at some point- ha. But it will be SO NICE to be able to go grocery shopping, run errands, and even maybe take a nap during the week. Ryan and I are also discussing using some of our hours Sunday mornings so we don’t have to take Grayson to church. The last few Sundays he has not done well in the nursery- we think he may have had a seizure. He’s always done great in the nursery, but maybe he’s just too overstimulated and it’s too much to leave him there for almost 3 hours.
We had OT and PT today- our PT is getting us hooked up with the companies that we will order his bath chair, wheel chair and AFOs. And his Medicaid number is working! I think because the whole process of getting on MDCP and Medicaid was so long and difficult that I still am skeptical that we actually will be getting these benefits. But we are, and I am so grateful.
Hearing aid update: this hearing aid thing is driving me crazy. Our AI teacher hooked us up with the center that can make the mold and hopefully program the aid that our sweet friend is letting us borrow. Well, their audiologist reviewed the ENT’s notes and G’s ABR and isn’t convinced he is a candidate for an aid. Ok…SO, we are going to have YET ANOTHER hearing test next Tuesday morning and attempt another ABR (measures the brain’s response to sound). I say attempt because I refuse to sedate Grayson unless it’s absolutely necessary, so we are going to try to get him to fall asleep and test him that way. I’m skeptical. Honestly, I’m hoping the ABR and booth test both come back normal. I really, really don’t want to have to mess with a hearing aid if we don’t have to. I am feeling really overwhelmed with all of Grayson’s medical devices and “equipment” right now, so less is more the way I look at it. So we’ll see.
Today is Ryan’s and my 4th anniversary. We were going to go to dinner, but couldn’t get a babysitter early enough for us lame people that have to be in bed by 9- ha! So he is picking up Chinese food that we can eat in our pjs, which honestly sounds divine. Life was a tad more glamorous four years ago. Sigh.
Happy Happy Anniversary to you! To me one of the best things about being married is even if it is Chinese in your jammies, those are still plans and you have them!
So happy to see that things are coming together. Please let me know if you need anything. We too have navigated the world ofedical equipment and would love to help if i can.
Happy Anniversary! I hope you can go out and have a nice relaxing evening… sounds like you need it! Glad that *most* everything is falling into place finally. I really hope he doesn't need the hearing aid, that would make life more easy! And 15 weeks waiting is BRUTAL!!!
Happy Anniversary! This babysitter was not contacted and would love to watch G-man for an out of the house anniversary celebration! :0
Happy Anniversary!!! You continue to impress me with figuring all this stuff out. I guess you just have to, huh? The respite care sounds wonderful – nice work in tracking all this stuff down!