Today our day started by meeting with an ENT. They are pretty concerned about Nina's aspiration, and her tonsils might be contributing to the problem. Next month, Nina will have her tonsils out, and they will look at several parts of her throat as well as her lungs. I think there are 6 procedures that will take place. Right now they are all jumbled up together so I cannot tell you all that will happen. But, we will stay over night, and they did go over some risks (like a punctured lung or severed vocal chords, which freaks me out!). This is all because of her aspiration, and we need to check and see if this has been going on all her life, and if there is any permanent damage done to her lungs and throat.
They could not check her ears due to excess wax, so her ears will be cleaned while she has her tonsils checked. Also, they decided we might as well only sedate her once, and her MRI most likely will happen that same day.
Yes, April 22nd will be a huge day for Nina!
Rehab doctor checked her over and Nina is now scheduled for a round of Botox injections. She is going to have some pretty good looking legs! Ha! Botox is used to help the nerves stop firing a signal to the brain, therefore, the muscles can relax and her legs will not be as tight.
We added an X-ray in there.
Then we had an echo. I asked the technician at the end if there was anything we should be concerned about. I am no expert on heart ultrasounds, but something looked funny. Her response left me very uneasy. "Sorry, I cannot tell you what I saw. They told me your doctor will go through those results with you." So, there is something, because she did not say, "No, nothing to worry about."
Then, we had a bonus appointment with an audiologist (ENT thought we should see him.) let me tell you, I think this doctor has to be the best kids doctor EVER! Loved him! And Nina did too! Verdict, Nina has great hearing on her left ear, but very limited hearing on her right ear. They will have to recheck once the ears have been cleaned out and they make sure there is no fluid.
Top it off. Nina has gained NO WEIGHT since we got her. She is almost 4 and only weights 26 pounds. Could it be the heart? Could it be aspiration? Could it be something else? I don't know! We will know more on Monday when we go back and go through all her results.
So if you think about Nina, will you pray for her? Pray for her body, and pray for wisdom for the team of doctors working with her.
I am exhausted, I will go to bed.