Well, we saw the ENT for the first time in nearly four months at the end of March. As she had been having some congestion as well as numerous ear infections, he felt it was time for another scope and another set of ear tubes. This was done at the end of March. He then saw Claire again at the end of April.
The scope of her airway/swallowing pathway showed that the muscle remained dilated. This is a good sign, and we should not have to do surgery in the near future. He had asked us in March to do a trial of nectar thin liquids. Unfortunately, this did not go well for Claire. She ended up with a severe sinus infection within 24-36 hours of the thinner liquids. We returned her to the previous level of thickened liquids and this is where she remains as of now. The doctor has decided to give Claire a "break" as he feels he has pushed her very hard. He wants to give her body time to grow and "catch up" with all of the "stuff" he has done to it. He will then do another swallow study in August (hopefully she will cooperate a little more that before) and then meet with him. We will see where we go at that point.
Claire will also see a neurologist per his and the allergist's suggestion. Our pediatrician is not convinced this will be helpful nor will they find anything but after relentless urging she decided to send us. We will see them on June 7th. Who knows what that will bring. Claire is "complex" per the doctors, and we don't even see residents anymore. She is also a grey area, where there are many questions and very few answers. They could decide to do nothing in neurology, or they could decide more tests. We shall see. However, the doctor's do not expect to find any type of cognitive deficit, this would only be to find a reason for the hypotonia (weak muscles) throughout her body or potentially her swallowing difficulties. So we will be off to yet another doctor...... hope they are nice.....and not a long wait......and please, please, please have comfortable chairs. :)
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