Annelise had her airway scoped and a hearing test done today! We are home and resting now.
I asked God for my hopes and dreams of Annelise being able to hear better after her ears got cleaned and tubes got put in. His answer seems to be "not now".
🌷Our ENT came out to tell me that her ear canals are sooooo tiny that he couldn't even see if there was fluid that needed to be drained. They don't make tubes that small, so no tubes for us.
🏵We were wondering how her left vocal cord was doing. The one that wasn't moving at all when she was last scoped in Omaha. He said it is still not doing much at all, but there is a little movement at the bottom. The right vocal cord is doing great.
⚘She got to take the ABR hearing test! I'm not sure how quickly those results will come back to us.
🌺There's not a lot of space around her trach, so they won't be upsizing at this time.
🏵They couldn't get an IV in, but word is that they did get some blood for the lab work. We are working on replacing her fluids now at home, poor hungry girl!
🌻She did have a tongue tie, so they fixed that, and I am looking forward to seeing how she likes sticking out her tongue!
While there is a real disappointment over her teeny tiny ear canals, and that her airway isn't growing in diameter quickly... meaning no movement forward in either of those areas of her care at this time.... We won't look at this procedure as a wash. We didn't get the answers we were hoping for... but we did get answers to our questions, and these answers will help us in the future.
She still has the opportunity to grow. If her jaw grows enough, there could be enough room for her to breathe without a trach someday. Or, there is a surgery to retract the jaw and make more room. Or, she could live her awesome life with a trach for all of her days.
She also still has the opportunity to get tubes in her ears in the future as she grows, and her ear canals grow with her. So God didn't definitely say "no". But it is definitely a "not now".... that could turn into a "yes" or a "no" later.... more wait and see....
Today wasn't without many blessings. Annelise was awwwwwed over wherever she went, we had great care, and God knew my heart needed friends in person since Kevin couldn't be physically there.
I heard my name called as I walked in to check in for surgery, and wouldn't you know, there was a friend from church there with her son too! Social distancing rules and kids having procedures aside.... it was SO nice to see the eyeballs of someone I know and love!
Then, while waiting for Annelise to be done with her procedure, I got to visit with a friend and fellow Trisomy mom who was at the hospital at the same time! She was there when I got the news that today is not the day for Annelise to hear better, or go up a trach size. So helpful to have friends who understand this adventure because their adventure is so similar. NEXT, my friend was walking up the stairs.... our very favorite RT was coming down the stairs to say hi, because she heard we were there today! After that visit, I spent some time on the phone with Kevin, and then got called back to see Annelise, where I was visited with by our Palliative Care NP, an amazing person who just makes loads lighter by talking with her. It wasn't long after she left that we were discharged to go home. I think I got more socializing done today than I have since the pandemic began! So easy to see that God didn't give me what I asked for today medically speaking, but He put person after person right in front of my face as a visual reminder of how many different groups of people He has used to support Kevin and I, and Annelise. What a gift! I am confident that they, you, will be around to see what's next for her hearing abilities, and will celebrate the days she has here, regardless of whether or not she can hear a lot or a little ot nothing, just because she is ours. 😁
Again, whoops so sorry for not updating sooner!
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