Kaelyn had her 3 month oncology visit last week. Everything looks great. Her oncologist actually used the word remission in our conversation! Isn't that great! Kaelyn is in remission! She said the longer we go without any recurrence or elevation in her AFP the better chance she has. It was a very positive visit.
She also had an audiology exam to test her hearing. She still has moderate to severe high frequency hearing loss. So, she gets to have hearing aids. We started to go down this path after her first transplant, but then she had the recurrence in her lungs so we decided to wait on the hearing aids. Now that she is doing so well I think it is time to introduce them to her. With high frequency loss you cannot hear the softer consonants like sh, h, th, s, f sounds. After her hearing test I started to really listen to the way that she talks and pronounces her words. And she does not say these sounds, she substitutes t and d sounds for the soft consonants. So I think in the long run she will benefit from the hearing aids greatly. It is going to be a battle, I think, though at first to have her keep them in. Luckily we have a friend who wears hearing aids and she has been willing to show Kaelyn how they work and help me understand what life is like with hearing loss. Kaelyn also adores her, so that helps a lot! (Thanks Naiah!) One fun thing is that the ear molds come in lots of different colors and Kaelyn wants pink swirly ones with sparkles...of course!
So add one more change to our ever changing life.
Love,
Angie
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