Hello all! Just some updates on medical news to pass along. Addy has been continuing with OT and PT twice a week. We have been seeing great improvements with the help of the therapies.
She just got over a pretty large illness of a double ear infection, pink eye in both eyes and bronchial spasms. The doctor had her on 4 meds including breathing treatments and a liquid steroid. Of course we all know what steroids do- they make you hungry ALL THE TIME! Needless to say, we couldn't keep her from being constantly hungry while on the steroid. This of course was cause for concern, because the pediatrician is still concerned with her rapid weight gain.
Yesterday we saw the ENT for a follow up visit. We are having a hard time keeping her healthy and free of congestion, so she has been on a steroid nose spray for the last several weeks. At this visit she had fluid built up in both ears, but not infected. She has already had 3 ear infections and she's just shy of 7 months. With the fluid build up, the doc decided to redo a hearing test. It was found that she has a significant hearing loss in both ears due to the fluid. Therefore, putting tubes in her ears will be the solution to fixing that. This will take place on December 18th. We were warned of this as a possibly from the start. Having a bifid uvula makes her much more susceptible to ear infections. We are hoping that this procedure will help keep her healthier.
Today we paid a visit to the plastic surgeon who has been following Addison for her hands and her bifid uvula. He would like her to have a speech evaluation at 12 months old to check for hypernasal speech. At that time they would consider whether surgery will be needed to fix the uvula. No further concerns with her hands at this time. We have some day time Benik splints on order through therapy and are anxious to get those.
We also had a weight check today and she is now 20 pounds!!! Oh my goodness!!! I'm sure the pediatrician will not be happy. I guess that's the downfall of being on the steroids.
We have our 6 month follow up appointment with the geneticist next week and are anxiously awaiting that. Addison saw her at a month old and passed two rounds of genetic testing with no syndrome that could be diagnosed at the time. Pretty sure that there is a syndrome of some sort going on, but with all the rare and unknown syndromes that are out there, we may never have exact answers.
That's all for now. We will continue to add updates so check back soon.