08/22/2026
Update on our girl!
First I want to say thank you all for always thinking of us and Charley. I can’t wait for her to understand how she is growing up in a world where her “people” literally extend from coast to coast and her to know what it is like to be loved and prayed for like she is. I honestly don’t know where our journey would be without each and everyone of you and I hope you truly know how much we love and appreciate you guys!
Today has been long and filled with a lot of information, answers and plans.
We came in for a simple procedure to have her ears cleaned (kids with Trisomy 21 typically have very small canals making wax buildup happen quick and can affect hearing, infections etc) have tubes placed and repeat her hearing test under sedation. After her last round of sickness pulmonologist also wanted a scope of her throat to see if there was anything structural going on that could be causing the problems with her aspirating.
Tubes and all went great and Dr. Phillips was also able to clean up and “trim” some spots on her epiglottis while she was sedated and add some “filler” in other areas to help with her aspirating. We are currently admitted for tonight for observation after the extra procedures but we are so thankful he went ahead and did it as opposed to her having to come back! We should go home tomorrow in true Charley fashion she is doing great!
Her hearing test was a little more concerning. Her left ear showed mild/moderate hearing loss. The audiologist wasn’t as concerned with that. She is hopeful it is swelling and all from the procedure today and we can retest and it will be fine in time.
Charley’s right ear though has total loss of hearing. She said she had the test turned up as high as she can turn it (which on the diagram compared it to a jet) and Charley registered nothing for hearing on that side.
With that being said we will be seeing a team from otolaryngology very soon to start the discussion/process for a cochlear implant for her right ear.
This has been such a hard pill to swallow today. It just seems some days it’s one step forward and 2 steps back but I’m holding tight to the facts and that is we serve a good God, his plan is always better than ours. Charley is most importantly healthy now, she is strong, and she has moved every single mountain and stepped over every single hurdle that has been in front of her. She does is with a smile, with a fighters spirit and a spark in her eye, we have the very best care team imaginable. We are so blessed to be a part of Vanderbilts community and we have the most amazing support system imaginable. So tonight even though my heart is heavy for the not so good news we are focusing on the good, snuggled up with our baby while she sleeps.
Tomorrow we will start researching and reading all about what to expect on the next journey but for tonight we’re just going to snuggle and rest ❤️
