We left the house at 7:15am to head downtown for Lydia's annual 22q11 Clinic visit. This is where they pull together most of the providers that follow kids with the 22q11 chromosome deletion. It's a long day but it beats scheduling all these appointments individually.
Lydia is quite comfortable at CMH and makes herself comfortable wherever she goes, informing everyone of her rule..."NO Shots, NO Pokes" ...and then asking everyone for stickers.
Cardiology. EKG looked good. Echo looked stable, no changes, still a little narrow near her interrupted arch repair but functional and no need for intervention at this time. The repair below her left ventricle is still oversized so the pressures are good and the value is only mildly leaking.
The sonographer was awesome, maybe the best we've had, and we've had a few. He had an ipad stand with an arm so Lydia could zone out undistracted by his work. He did an echo on her when she was a newborn and still in the hospital. It's always surprising when people remember and recognize Lydia.
The cafeteria at CMH is closed for renovation - thank goodness! We went across the street to Crown Center for some birthday shopping and delicious (ahem) lunch at Fritz's. Yuck. She enjoyed it, except for when she took a big gulp of milk thinking it was water. Lydia only drinks water.
Genetics
We get it, she's missing the 11th band of the lower half of her 22nd chromosome.
We don't see them any longer.
Gastroenterology
Everything is working good as far as her gut is concerned.
We didn't see Dr. Cocjin even though he's one of my favorites. He has the best jokes!
Endocrine
All good for this growing girl! Since starting growth hormone therapy in October 2020, Lydia has grown 3.5 inches and is now 41.5 inches tall, on pace to grow 5 inches by October 2021.
Remember how much I didn't want to poke her with a needle 6 days a week?
Still don't like it but sure glad we are doing it.
Immunology
Still has lower T Cell count but in safe range for all her vaccines. This still means she struggles to get over the common cold, however, instead of 2 weeks sick, we usually only see 1 week recently.
Speech
All good! They continue to be amazed at her vocabulary since she had a trach and was nonverbal for the first 2 years of her life. But remember, we signed and we signed some more and she signed a lot. That was us building her vocabulary, that's why she picked up speech so quickly. I thank our speech therapy for her pronunciation and enunciation. When she is lazy, she might interchange her ls for ws and she has the common mispronunciation of her rs from time to time.
Audiology
One ear tube is out, they took the other out. Lydia still has a lot of fluid behind her ear drum but we are waiting to see if that clears up in a few months since she was coming off an upper respiratory illness at her clinic visit. That fluid affects her temporary hearing but her permanent hearing is still good.
ENT
I'm so tired.
This will be a post of its own.
Stay tuned for more on Ear Nose and Throat.
Labs
Labs are labs are labs. Lydia hates getting blood drawn, who likes it?
Luckily, vascular had been called down for the kid before us, but he left, so we snagged his spot and took them up on the vascular sonography so we were only poked once. Oh and the new deadening stuff they put on her arms before sending her to the lab is nice. A little numbing is a good thing.
Heading home after the thunderstorms rolled in and passed by. 5:15pm.
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