A new doctor, some new adventures!
Today we met a new neurologist at Children’s. Once I got in
the parking lot I got a phone call from the doctor that said that he was
reviewing Jillian’s chart preparing to see her and realized she had a muscle
biopsy done and that the final results were not back yet so he was not sure how
much help he could be today without that and did we still want to travel to see
him. I said since we were already there we might as well.
The nurse did intake questions with us. The doctor came in
and looked at Jilli while the nurse asked us questions (I really liked the
nurse) he watched Jillian walk and felt her legs.
He then asked a ton of questions. He was upfront with us and
said the muscles was not his specialty in neurology, he was a seizure specialist,
but he was willing to try to help us with what he did know. I appreciated that
he was upfront with us. He referred Jillian to three other clinics at Children’s:
- 1 Rehab: this clinic works with kids with tone issues like Jillian. They use a comprehensive approach. I have heard of this clinic before but Jillian has never been there so we will see what they have to say.
- Eye: Jillian has never had an eye exam other than with her ped. They just want to make sure that none of her coordination issues are eye related (throwing, kicking, and not running into walls are all issues for Jillian. We don’t think it is her eyes but we don’t want to look over it just incase it is related
- OT: Jillian was tested for OT at the same place she gets PT and speech a year ago. Her logic skills are super high so she finds work around to her limitations for the things on the OT test (puzzles, stacking blocks, ect) The dr today wants her checked by children’s OT department. I’m not sure that she will qualify but we will have to wait and see what they have to say.
He did tell us that her muscle biopsy is not finished but
the first part showed small muscle fibers which are a sign of atrophy so they
sent the sample to another lab to look at it more. Please pray they find definitive answers. He
said it will probably still be a few more weeks before it is done and that if
we can not get genetics to give us results to call him and he will help us.
He also told us that the Children’s person who is good at
muscle stuff is at UCLA for the next year learning more and that he should be
back next July. He said at that point we should transfer care to him. He said
that if her test does come back showing mito that he will help us to figure out
who is the best specialist closest to us for mito and he will send us there. I
am thankful that he is willing to help us find the best doctor even if they are
not at Children’s. He sounds like he is willing to look out of the box and
beyond the people around him to find what is best for my kid… we just need a
diagnosis. He even asked about seeing if there is studies or other things along
those lines that could help her once we have a name for “it.”
He was surprised that her intellectual skills are so high
(not uncommon if it is mito) and that she could walk, he was expecting a kid who
could not move. She has such an odd mix of things.
So for now we see what new info we learn from our new
specialists and we wait for the muscle biopsy to come back. I pray that they
take their time and are able to figure out what is going on with her muscles.
The appointment wore her out. Mom and I took her to the zoo
after and she fell asleep in the car. She slept the whole time we were at the
zoo which her taking a nap at all is super strange. So mom and I walked around a little and then left. She was also excited
today too because this morning we went to Babies R Us to get her a stroller fan for Disney
and they have princess dresses in her size. Normally they don’t start til a 2T
and that would be huge on her so she was all excited to see Else, Bell and
Cinderella dresses in her size… now for them to go on sale, but she was really
good about not getting one today and waiting for a sale, I was really proud of
her. She kept saying “I princess. I pretty.” She also successfully tore open
her first shirt of the day. I had a doctor appointment for myself this morning
and she was sitting in the waiting room and said “a pocket!” Her shirt had
ruffles in horizontal lines on it. She pushed the ruffle and the shirt ripped apart.
Thankfully Target had kids shirts on clearance so I got her a new shirt for
super cheap (ps if you have a kiddo in 12mo-3T the Target on Mooreland Rd. had t-shirts
and shorts for $2-5 each)
Tomorrow we have her follow up with GI. We will see what
that brings!
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