A busy day and an update

I will eventually go back and give Reagan's full history, I promise. For now I can tell you what her current diagnoses are:

Severe GERD
Laryngomalacia
Tracheomalacia
Laryngeal cleft
Tiny PDA
Torticollis
Metatarsus adductus
Plagiocephaly
Developmental delays (most likely due to lots of hospitalizations, breathing issues, and torticollis)
Microhemorrhage of the cerebellum (most likely due to a difficult labor)- they don't believe this will cause her any issues but cant say for sure

Treatments so far:

10mg Prilosec for GERD
Supraglottoplasty (5/3/13)
Supraglottoplasty revision (6/6/13)- after being diagnosed with severe obstructive sleep apnea, and some central apnea)

We spent most of today trying to get her medical records from Tufts to help the doctors here decide what steps they wanna take next. They did repeat the modified barium swallow study today. This is a study that she originally had at Tufts two weeks ago which was negative. Today it showed that she was aspirating silently. Her formula now has to be as thick as honey in order to prevent it from going down the wrong pipe. Today she also got hooked up to an EEG for 24 hours. They decided to do this because they want to rule out that the event that took place on Sunday wasn't a seizure. In the morning she is going to be having and upper GI series to rule out a vascular ring. She has had a very busy day today. She was very cranky tonight it took a long time to get her to sleep. Putting her to bed with all the EEG leads on and getting her CPAP mask on over it was difficult. I know she is going to be even more exhausted after tomorrow's day. I feel so bad for her. But the best part about Reagan is that she will always smile at you even in her toughest moments on her hardest days. She is a strong girl and we love her dearly. I will try to post an update on her condition as soon as we know anything.

-Reagan's mom