August 26: Tiny Tots Gymnastics begins for Lydia! Fun! She's loving it, especially the trampoline and the balance beam!
August 31: Neurodevelopmental Assessment. Dr. Willen follows the CHD kiddos to see if they are developing how they ought to be or if any interventions are needed. Lydia is awesome...it's been confirmed by fancy doctors. Last year she was in the low to below average range on a lot. This year she is average and above on everything but speech. They can't technically evaluate her on her signs, but Dr. Willen did unofficially and she was mighty impressed. She suggests we start speech therapy this fall!
September 1: Sleep Study! If Lydia passes her sleep study we can take the trach out for good! Cross your fingers and toes and say a few prayers please. It was a long and exhausting night for me. Lydia slept just fine and was capped from 11:30pm to 5:30am. 1,100 pages of data takes some time for them to analyze, so we'll know soon!
September 6: Hanger Clinic. She walks on the inside of her feet a little more than we would like and think is appropriate for a kid her age. Just getting things fixed sooner rather than later. We are getting SureStep inserts to correct this now. She can wear them with socks around the house or with shoes wherever we go! She choose the busy buzzing bees pattern with yellow straps. The SureSteps look like this:
September 13: Pre-Admissions Testing. Why? Oh yeah. Lydia gets her trach removed on the 19th! Next week. She was an absolute pill this morning at her appointment and wanted nothing to do with anything or anyone. 'nough said.
September 14: Home Vent Clinic. Just a regular check up with our friends at Home Vent. If the trach comes out, this goes away and we'll just go to an ordinary pediatrician. Terrifying and liberating!
September 19: If the sleep study goes well, we are scheduled for decannulation. Lydia will stay in the hospital for 2 to 4 days to be monitored without the trach.
It's hard to even remember when she didn't have a trach. It will be such a huge adjustment for all of us. It will impact everything...bath time, what we carry in the diaper bag, daily trach care, weekly trach changes, taking a suction machine everywhere we go, avoiding the pool, oxygen stored in the bedroom, machines running at night, monitors hooked up to Lydia overnight, the ability to spend the night places, nursing care at home, and so much more I'm not thinking of right now.
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