Special Needs

Nervous.

Morgan is a super happy baby.  She coo's and makes all kind of noise.  She practically sleeps through the night (from 10pm-4:30/5 or so.  She's even had a couple where she slept until 7 or 8am).  Her reflux is well controlled on axid & she's somewhere around 12 pounds.  

But.  

(You knew it was coming right?)

She's only rolled over 2 or 3 times, from back to belly.  She can't push up on her arms at all, she can't hold her head up while she's on her stomach.  She still basically suffocates herself.  If you position her arms underneath of her she just flops them down.  

She's also really shaky.  Like super bobble head.  And she has jerky-type movements, alot.  She startles easily as well.

I've had a couple of family members ask me if she's having seizures.  

I had to move her neurology appointment because it's in Northern VA and I was in Richmond with Peyton in the ICU.  It's in 2 weeks.  I took a short video of her jerky-ness.  I have a hard time telling if it's typical movements for a child.

I don't know what i'm going to do if she has something significantly wrong with her. Obviously we will go with the flow but please please please I cannot have two kids in PT/OT/ST at the same time.  It's a full time job with just one.  

I can't upload the video because I have crappy internet, but the shaking seems to be getting worse.  

She uses and kicks both arms and legs equally so that's good in comparison to Peyton.  She also brings her arms to midline and attempts to hold her bottle (something Peyton didn't do until she was well over 1).

I think the closer the appointment comes the more i'm worrying.  Our local children's hospital has such a long wait for PT.  I guess I could just go ahead and set up an EI eval to see what they say.   

DD1(4):VSD & PFO (Closed!), Prenatal stroke, Mild CP, Delayed pyloric opening/reflux, Brachycephaly & Plagiocephaly, Sacral lipoma, Tethered spinal cord, Compound heterozygous MTHFR, Neurogenic bladder, Urinary retention & dyssynergia, incomplete emptying, enlarged Bladder with Poor Muscle Tone, EDS-Type 3. Mito-Disorder has been mentioned

DD2(2.5): Late term premie due to PTL, low fluid & IUGR, Reflux, delayed visual maturation, compound heteroygous MTHFR, PFAPA, Bilateral kidney reflux, Transient hypogammaglobulinemia, EDS-Type 3


Re: Nervous.

  • I hope you get great news at the neuro appt!  When Aiden was 4-5 months old he started having jerky and abnormal movements.  At that age it was really hard for us (and the drs) to distinguish bw seizures and his movements disorder (at the time it was PKC- a form of dystonia).  He also has tremors now.  He has so many different types of atypical movement- and would have facial grimacing with them. I cannot even imagine having to juggle two kids with therapies- Aiden's completely takes up all my time.  Please keep us updated!  
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