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Friday, October 4, 2013

Moving forward

I'm terrible at blogging these days. Life just tends to get in the way of pretty much everything.

I thought I would update since we had Bailey's follow up at MDA clinic yesterday which is a clinic we go to every 4-6 months and get to see several doctor's in one visit. It is usually an overwhelming day but when I left there this time I was actually feeling pretty happy in Bailey's care.

We saw Neuro-muscular which is the main clinic that follows Bailey and I am in constant contact with. They are going to try Bailey on a new medicine that may help with muscle fatigue. They aren't sure if it will work since it is typically used with a disorder that Bailey does not have but they figured if it does work then it would be great especially to possibly get her to school full time in the future. We should know within a few days if the medicine will help or not.

We saw Pulmonology who just went over how Bailey has been breathing and gave refills on her asthma medicine and did a chest x-ray just to make sure there were no changes in her lungs. Bailey was supposed to have a sleep study several months ago but we had to cancel it so we're looking at having that done in December.

We also saw Physical medicine and rehabilitation who looked at Bailey's hands and feet, how she gets around, and what she is able to do as far a self-care. We are thinking of trying out different AFO's from Nascott at the National Rehabilitation Hospital. The way they were described would seem to be better for Bailey. We love Shriners and Dr. vB but it seems better for Bailey at this point to try out something different.

Also we saw Nutrition who just told us to follow up with GI due to a 12lb weight gain that is pretty concerning but she is scheduled to see them in November.

Neuro filled out her school paperwork for our 60 day review meeting with Home and Hospital services and as of right now they are keeping her at a half a day (once we work up to that) and following up the rest with the Home and Hospital teacher. I am hoping to get her to the half a day point by the end of October/beginning of November depending on her health of course.

Bailey will see Genetics in November as well but as of right now ALL of her doctors are actively working together to get Bailey approved for REM so that they can start the process to have the Exome sequencing covered by insurance and then they will move forward with that. It will be a very lengthy process and we won't have results for several months but HOPEFULLY something will come from this that will help them know what to do to help with these dangerous Metabolic crashes that she continues to have. It is just far to critical for her to continue this way for the rest of her life. Help is needed beyond explanation.

School has been going well, her team has been great with keeping in contact with me and having lots of emergency procedures in place for Bailey. They are constantly making sure Bailey has all that she needs while at school. She has been asking me to stay at school longer so hopefully her health will allow that to happen soon!

"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."