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Im 24 next month! Sorry I'm not on much, Duckie baby is doing home PT and we're working on lots of stuff with her. She's babbling! Which is awesome. It doesn't even sound weird or anything like I was worried. And she's gonna get a baby wheelchair in a month ish when she turns 6 months. We're doing the frog and the go-bro because that's what our insurance will help with and it's important to learn to crawl for babies as little as her.
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my baby just said "bonn'uit" in little toddler speak completely umprompted as i brought a refill of milk for bed
my heart
oh my heart i love this baby so so much <3 <3 <3
Duckie's results came in today. She tested positive for the denobo version of HSP and her doctor said she specifically has "early onset complex HSP" which is a lot. They sent us the website for this foundation that studies a similar mutation that's lots rarer with a slightly different gene mutation than Duckie's because hers is sorta similar but they said hers is less involved
We're heading back home this weekend. So far every test has been negative for Duckie baby except one for spasticity which was positive and the fact that she has a mild sinus infection right now which I already knew because I'm the one using the baby bulb on her nose when she's snotty.
Now it's just time to wait for the genetic test to come back. The doctors said they were sending a referral for PT and OT and for a specialist to come see us at our regular hospital if the tests come back positive for HSP
Wow. Tomorrow is my first mother's day as a mom
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Duckie is getting genetic testing and a MRI and a blood test. All the tests today and then more depending on what the results say
The doctors had to wait to do the MRI bc she won't eat at all except at specific times and she gets really fussy if I try to feed her at a time she doesn't like
They said if she has HSP then it's something called de novo because I already had genetic testing as a kid to see if my cerebral palsy was actual cerebral palsy because ataxic type is so rare and I don't have the gene for HSP and you need both parents to have the gene for the symptoms she's having
Apparently she's smaller (longwise) then she's supposed to be and I didn't notice so I feel really bad about that
Mama and papa are packing up the car now for the drive. Its gonna take 4 hours to get there in the car but me and Duckie can't do planes
Duckie's first appointment is tomorrow and our checkin for the hotel is tonight and the baby doctor said we're probably gonna be there for at least 3 days
Right now for Duckie we're looking at the Scooot the mini explorer the Ready Racer and a couple of the programs where they make wheelchairs for babies and toddlers and stuff. I wanna make sure she can move herself in her wheelchair instead of needing me or my mama or my papa to push her everywhere because I didn't start pushing myself until very late because my mama and papa couldn't get me a wheelchair that little back when I was a baby
