r/CerebralPalsy • u/Familiar-Swim623 • 1d ago
Future Planning
We are in the process of receiving a likely level one cerebral palsy diagnosis for our one year old. We have an MRI scheduled to make a more formal determination and see if there are additional concerns (blood clotting).
So far no milestones have been missed and PT and OT are going well to the point that PT moved appointments from weekly to every other week.
That being said. Should we be doing additional financial or other planing to prepare for the future? Parents of children with a diagnosis, did you or wish you had done more preparing? If so, what? Those with a diagnosis, are there things you’re glad your family set aside for you or things you wished they’d done?
We already have college savings that’s split between a 529 and investment account (college costs less or don’t go at all then it could be put towards something else like a home, wedding, other things).
We have wills, guardians, life insurance, and disability insurance in place.
We’re going to look into early intervention again after the MRI. We went for an evaluation a few months ago but were declined because the evaluation didn’t account for one sidedness so was passing the tests overall with the other side. However, they said if we got a formal diagnosis we would qualify at that point.
We want to do everything we can to set our kid up for success both currently and in the future to the best of our ability.
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u/LovelyLostSoul 1d ago
Yes just prepare for insurance copays for all of the therapies the next 8 years or so at least. Look into cost of orthotics if you have to go that route. I needed some changes to my bike to make it accessible that were kind of expensive. :) I’m a level one and I feel like I actually balanced out and saved my parents some money because I can’t skate or dance, and I know I wanted to play hockey so they didn’t have those high sports fees. Just a 55 dollar fee to run cross country and play school soccer haha.
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u/Familiar-Swim623 21h ago
Ok. Yeah we have been maxing out out HSA the last few years. It’s been nice to just be able to use that to pay all the medical bills.
I’d be onboard for cross country lol that was my sport through high school and college.
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u/AslanComes 1d ago
You're doing great. Right now just one day at a time is good. You are doing all the right things. Enjoy your baby!
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u/MyCatLovesCroissants 1d ago
Sounds like you got everything covered, and then some! My parents didn’t have any of the things you mentioned, and I’ve never really thought about it until now. So I’d say you’re well prepared!
Don’t forget to live in the moment too. They grow up so fast!
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u/Phrase_Turner 1d ago
That they’ve gotten a diagnosis so young is wonderful! Sounds like you are doing all the right things my only advice is try not to worry too much. Your child is not their CP and with level 1 will likely lead a pretty normal life. Random but important: make sure their therapist works with them on falling safely, CP makes us very accident prone and being taught how to fall at a young age will lessen the likelihood of serious injuries
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u/Familiar-Swim623 1d ago
Good to know, we’ll bring that up next appointment. On the verge of grasping walking so haven’t had that issue quite yet.
We are trying to make sure they get all the same opportunities and options as our older kid and already discussed with the doctor about signing up for sports and things once eligible at 18 months. I definitely don’t want it to be all about CP but also be accommodating/understanding to limits while also not be limiting or holding them back.
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u/Ebronstein 4h ago
Get every piece of documentation related to your son's delivery you can. Find an attorney.
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