Surgery update/ABA Therapy
I received a phone call last week from the neurosurgeon’s nurse. One amazing woman, I tell ya! We were told that she’d be a wealth of information, and whoever told us that was absolutely correct. She answered a lot of my questions and helped ease my mind so much about the possible surgery coming up.
When I asked if she knows when the MTS started showing up in MRI’s, she said it’s a very big possibility that Ryan was born with the scarring (MTS). With that, they think the scarring is in the language/speech/memory part of the left brain. Children’s brain’s are so amazing, that if the scarring was there at birth – the development (language/speech/memory) that normally would settle there, would see or just know there is an issue (scarring) that it would reorganize itself to a different area of the brain. How amazing is that?! That being said, the resection they want to do – taking the scarring part of Ryan’s brain out because its a big possibility that area is causing the seizures – may not have any part of development and skills. This means Ryan may have brain surgery, yes; but he could also be seizure free without losing any development at all! That’s definitely one of many things I was worried about. He’s come too far to back track in development…again!
The doctor who does the neuropsych eval has been on maternity leave and is back in the office today for the first time. I received a phone call this afternoon and we have an appointment later this week to see her. She thinks all we need is one appointment for the eval, and we’ll be good to go. The nurse is going to compare all of the schedules – Neuro, neurophych, neurosurgeon, and nurses – to see when we can all meet with them. Then we’ll cover any questions, concerns, and they’ll go over that along with the risks/benefits to the surgery.
We’ve been looking into ABA (behavioral) Therapy since we returned from the Ch18 conference and an eval for that as well. Once the eval is complete, we’ll look into how soon we can start to schedule the therapy and see where we are on the surgery path and it’s date. ABA is VERY extensive (and expensive) therapy that will help Ryan in all areas of his life. Because of the health insurance the kids have, they do not cover all of that therapies cost. If Ryan didn’t have insurance, there would be a 24-month wait for this therapy!! I think that’s just unreal. We’d have to wait a whole 2 years to get him the REAL help he needs. Something about that needs to change…
So. Busy week this week, and in these weeks coming as well. The kids will spend some time with their dad. My sister and I will be doing a bake sale to raise money to put away for therapy for Ryan…the percentage that insurance will not cover. We’ll keep on keeping on, trying to make a difference and things fun for the kids before they get REALLY stressful around here.
Thank you for your support, generosity, and amazing love for my kiddos and I!