Blogger Layouts

Friday, February 22, 2013


I've been meaning to update for the last few weeks but life for busy as usual!

On February 7th Bailey had her 6 month follow up with the MDA clinic where she sees several specialists in one appointment.

First up was Neuromuscular which we saw Meganne our go-to person between NIH and Children's. She unfortunately did not deliver good news. In my previous post I stated how close we thought we were to a diagnosis and well she totally cancelled that out. They got the last of the biopsy results from New York (mitochondrial lab) and they were negative for Mitochondrial disease. So there is one last blood test they can do through Genetics that is for Mito and after that we are back to square one again. Very frustrating to feel so close and then be pushed so far back. It hurts! We went over other recent information, saw Physical Medicine, and Pulmonary. Everyone is super concerned with Bailey's increased fatigue and staying sick every other week. Pulmonary diagnosed Bailey with Asthma which is why her cough pretty much never goes away. She was put on a daily inhaler, rescue inhaler, and nasal spray. She also needs a sleep study to make sure she breathes safely in her sleep and a repeat swallow study. She had blood taken to check her vitamin D and other levels to see if they are contributing to the fatigue!

On February 12th Bailey saw GI, she hasn't gained any weight in over a year but she's gotten taller so her BMI is not great and she's about 8% from not being nutritionally safe again. So back on feeds she goes, 480mls a day for 4 months until follow up.

February 22nd Bailey had follow up with the Developmental Pediatrician and we discussed her behavior and OCD tendencies which she's had going on for awhile. We are in search of a Child Psychologist to help Bailey learn to control her emotions and cope with change. It's hard to tell the root of the issues since she always has so much going on but we don't want it to get worse so to speak.

So we have a busy next several months all while adjusting to new medicines and back on tube feeds.

Our main focus right now is figuring out the major fatigue issue and getting control of her behaviors. I'm putting finding a diagnosis on the back burner for now. I don't know if we will ever know what's really wrong with Bailey but if we ever do find out it will just happen when it's supposed too. I just want to make sure she's safe, as healthy as we can get her, and happy! We can do those things with or without a diagnosis.

"Fall into me, my arms are open wide and you don't have to say a word cause I already see that it's hard and you're scared and you're tired and it hurts and I wanna be the one you reach for first."