Update: So Since leaving the hospital we have had appointments like crazy with all the different Doctors and specialists.... So I will Sum it up to date: (then keep up on it)
Therapy:
We have two Occupational & Physical Therapists (OT/PT) come to our house every Weds. to work with Brinleigh. They will help us make sure she meets her development milestones.
Hearing/Deafness:
We have been to the ENT (Ear, Nose, Throat) & Audiologist. The first week home she was fitted for hearing aides. She will be getting a trial pair on Jan. 11th, we will see if they make any sort of a difference, they say it could take some time, cause of her age it may be hard to tell what she can and can't hear with them, if anything. We will learn a whole lot more about the process and what steps we will be taking this coming wed. We then see an otolaryngologist Jan 17th.
Eyes:
We saw the optamologist also, and he said that her eyes are looking good, they have regressed from the surgery. So she has a great response! We just have to hope that the connect to her brain is strong and formed correctly for her vision to be the best it can. We don't have to been seen every 2 weeks anymore! We don't have to go back for 3 months now! So I take that as a positive!! YAY!
Barium Swallow:
Dec. 27th Brinleigh had another swallow study done and She passed!! YAY!!! She did great eating with Thick & Thin Liquids!! One item checked off the list, NO MORE ASPIRATING! Phew, what a relief.
Kidney Stones:
Dec. 27th Brinleigh also had an ultrasound on her kidneys to just follow up on her stones... and sadly they have gotten worse! :( So her pediatrician reviewed the final report, and stated that this is really uncommon (which we already knew) and he didn't have much knowledge on where to go from here. So he is sending us to a Nephrologist (sp?). Our poor girl, there are many mixed opinions out there weither the stones would be causing her any pain or not... I sure hope not, we also hope that they will start improving SOON!
Reflux:
Ugh, this is nasty! But I think there has been a huge improvement. They have maximized her medications. She is on Prevacid & Zantac 3 times a day. I also think that having her on the rice cereal has helped to not be acidic, and she doesn't take as much in cause she gets fuller on smaller amounts which also helps. She still does cough and have some discomfort. We just hope that more that she grows her sphinkter muscle will get stronger and be able to close off.
She is still doing GREAT with NO OXYGEN! Wahoo!!
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