Lucy has had a good summer, but she has definitely not been 100% from a health perspective. She's had quite a few throwing up episodes, although not as severe as some in the past. She had pneumonia again at the end of May and a few other respiratory infections. I asked to have her blood levels retested based on her lack of energy and we found her hemoglobin was quite low again (7.8 - should be 10+), so she was severely anemic and needed a blood transfusion in the middle of August.
Her most urgent medical need right now is that she has a laryngeal cleft - basically where her vocal chords and larynx meet up and should close when she swallows, they don't close, so she slowly aspirates liquid into her lungs. The theory is that all that gunk builds up in her lungs and causes ongoing infection, irritation and sickness. This has been present since birth, but not an issue when originally diagnosed since she had a feeding tube. In the midst of switching care providers, it was re-looked at and our current ENT doc thinks it definitely needs to be repaired.
So, today (Thursday) is surgery day. The stitches each take 20 - 30 minutes and she'll likely need 5+ so it has the potential to be a few hours in surgery, with a 1 - 2 day recovery in the hospital.
We'll keep you posted on how it goes and how recovery and 2nd grade go. I'm cautiously optimistic she'll be less sick this school year and we are on the path to permanent solutions to some of her complex medical.
Also, please know she really did enjoy summer! She went to Art and Chemistry camp and NASA Exploration camp. She made new friends, and went to the lake and Duluth and most exciting of all - Disney World! She is amazing and strong, even when her body is fighting to stay healthy!
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