Thank you, thank you for all of those who were thinking about us today! I can tell that it definitely helped! We LOVED the dr we saw today and got a few explanations from Dr Carron about some other stuff.
From this point on the post is a bunch of medical jargon and can put you to sleep ;) Will update later with what you really come to see, pictures of my sweet babies. We went on a field trip to the Children's Museum and I need to ask you moms some discipline questions. I have a charming 4 year old little boy who has a problem with talking back and a potty mouth! Anyway.........
Let me back up 2 weeks to get you up to speed. Cohen went for her regularly scheduled hearing evaluation done at Magnolia in their sound booth. They were only able to test one ear (her right ear) because her left ear was already healed from the perferation and had filled with fluid. A little disappointment there, but it was expected but again we hoped it would have been later. Anyway, she did FANTASTIC in the booth. Her hearing loss in her right ear showed significant improvement. We knew this was a possibility due to the type of hearing loss associated with thyroid disorders can fluctuate. We never wanted to get our hopes up because there is also the possibility for it to deteriorate. So they adjusted her hearing aid to accomodate her new levels and Cohen did not like it! She thought the batteries were dead and kept taking them off. It took a few days to get adjusted but she is wearing them fine now.
Later that afternoon, we met with Cohen's new endocrinologist. I am not going to go on a long rant (that is part of the reason I have waited 2 weeks to update, I needed to think it through) but I will say that my first impression was not great. Every Dr is entitled to there views and opinions but it is the way it comes across that has the most impact. This Dr did not agree with the plan that Dr Bastian had laid out for us and because she is the dr writing the scripts, we had no choice but to concede. Cohen is taking a 4 month hiatus from her growth hormomes to see if they are necessary or if her levels drop. Her size has always been secondary to us, her development has been the priority. I was ok with this but the dr was too busy defending her opinion that i don't think she ever heard me say that we would give it a shot. After that she tried to wrap up the appt with never addressing her thyroid or developmental status. I attempted to bring it up and she kind of blew it off and never addressed her cognitive development. Needless to say, I left very discouraged. It was more due to the fact I have seen how far she has come in the 2 years that we have regulated her thyroid function so closely. This dr was not there to see her when she had no personality and would not respond to us. We drew a few labs and out the door we went only to return 4 MONTHS later. Yes, Cohen who has had labs drawn every 4-6 weeks since she was 6 months old, will not be checcked for 4 MONTHS! I. am. TERRIFIED.
Fast forward until today. I might have been crazy when I scheduled this but Cohen had 2 appts today-- Neuro and ENT. We met with Dr Evans in the Neuro department today. LOVED him!! He was very thorough and asked for all of my concerns. As he evaluated her he said his thought process outloud. He would tell me what he was checking for and then tell me why it was or was not indicative of anything. Final thoughts were that Cohen has oral motor apraxia complicated by her other diagnosis. Her enlarged tongue that she has had since birth should have demonstrated more control after this long of a timeframe. It is not as prominent as in the past but it does still protrude and until he demonstrated it for me, it does not move side to side as in needed to clean out her cheeks. Apraxia is a form of coordination. Technically it is a deficit in the ability to plan motor movements for speech and oral function. Children who have apraxia very in severity. Cohen's is complicated by her developmental delays as well as her hearing impairment. He was very upfront with me, stating that Cohen missed very important key years that are needed when developing language. Her prognosis is still unknown but he stated that there was nothing he could add to her current plan of care. Overall, it was a great appointment. It clarified her diagnosis and it just put my mind at ease that nothing else is indicated at this time.
Now on to ENT. Dr Carron is a close second when we talk about our favorite drs (Dr Flowers is our FAVORITE!!). We went in hand with our audiograms and were ready for his opinion. Another dr had question whether or not Cohen had Conductive hearing loss (associated with fluid) or Sensori-Neural (actual assiciated withthe structure of the ear). After reviewing her latest CT, he still is confident that Cohen has sensori-neural hearing loss. He did say that there can be fluctuations with this kind of hearing loss even if not associated with thyroid disorders. He did still see the fluid behing the left ear drum but it did not appear infected so we will wait to see her body can reabsorb the fluid. If not, another tube might be in the future. Her sinus surgery did fabulous until the last few days, so we are getting back on a Bactroban nasal spray to get us through the spring season to see if that will keep her clear. But it still soooo much better than before. Cohen always does so well for him. She is so grown up when she gets in the exam chair. She takes off her hearing aids, turn her head to each ear, and never fusses. I guess she gets her ears checked daily at school, so to her it is no big deal!
I know all of this is boring to most but it is my journal for when I can't remember how far Cohen has come. So after 3 appts, nothing has really changed. We are going to have her hearing tested every 2 months until it stabilizes again and Cohen get s to go 4 months with no shots!! I know she is happy about it :)
