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number of full Daria watches: 33 so far

[katiecalledcat]

Hi! I'm Katie and everyone calls me Cat bc I like cats and its short for Katie.

I have a baby who I call Duckie and she's still very very little so I get lots of help from her gramma and grampa which is my mama and my papa to take care of her.

I really like Daria and I watch that all the time. I'm a nonspeaker and I use something called a talker to make words except when I type which I'm doing now duh.

I'm 23 (almost 24 this year!) and I'm from the USA.

Diagnosed ataxic cerebral palsy autistic disorder and moderate ID

[il0vekiki]

Daria art I made for the 10 Daria fans out there, somebody has to keep this fandom alive am I right??

[katiecalledcat]

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

[katiecalledcat]

Very bad shakes week. Cerebral palsy is hard.

[loosely-erraticsorcerer]

[katiecalledcat]

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

[katiecalledcat]

[katiecalledcat]

Wow. Tomorrow is my first mother's day as a mom

[katiecalledcat]

Duckie's genetic test will come back in 4 to 6 weeks they said and her MRI and blood tests are negative for the first round of screening they did. Tomorrow she needs a different MRI (this one was of her spine not her brain) and some more blood panels for metabolic stuff instead of infections

[katiecalledcat]

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

[katiecalledcat]

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

[katiecalledcat]

i see your posts from time to time and i'm always rooting for you and duckie. it seems like everything is going pretty smoothly even with the regular hurdles that come with having a new baby. i hope the year treats you both well!

Thank you 😁

[katiecalledcat]

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

[katiecalledcat]

Mama helped book a hotel room right near the hospital and its so close we don't even need to use the car to get there and back from the hotel.

It's gonna be all 4 of us mama papa me and Duckie and we're gonna bring her bassinet instead of the fancy crib because none of the wheelchair accessible rooms come with those and the fancy crib can't leave the house easy.

Mama and papa are also helping me look at wheelchairs for babies and toddler and her right now stroller and carrier is good for me moving her around but she needs to know how to use one eventually and maybe she'll be less fussy if she can move around by herself

[katiecalledcat]

Im up again feeding Duckie so I wanted to say something kinda secret. My mama and papa didn't want me to know at least

At the well baby visit Duckie's doctor was doing the mental health thing that they have to do because I had PPD (mostly all better now!) And he said I have something called gender dysphoria and he tried to give me a paper about it but mama said I didn't need it and tossed it out before we left

[katiecalledcat]

Duckie is getting more testing soon but right now it looks like it might be something called HSP. The doctor says we need to talk to a doctor in Massachusetts who specializes in this stuff because it's a genetic thing and they said I couldn't have given it to Duckie

Besides that Duckie baby is right on track for milestones in her arms and hands and she's even lifting her head and chest. She's starting to make noises and she might start babbling soon but she isn't meeting any milestones about her legs yet

[katiecalledcat]

Well baby visit for duckie tomorrow

She's gonna be 4 months!