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Monday, May 16, 2011

"I never saw the things my child couldn't do, I only imagined the things that she could"

Everyone has been asking details of Bailey's appointment last week so blogging would be the best route to reach everyone interested.

Bailey had her follow up appointment at the MDA clinic at Children's. She hadn't been seen since there since August (we had major issues scheduling a return appointment) so things have changed in almost a years time. I did go into the appointment with a a list of concerns including increased fatigue at all hours of the day which leads to falling often and leaning to support herself, pushing off of her leg while climbing the stairs if she can even make it up them without asking to be carried the rest of the way, and lastly her hips have been popping frequently and with mild hip dysplasia I was slightly worried.

Little did I know my concerns would turn into an appointment I wasn't really expecting.

The team was very concerned with the things I mentioned mainly the increased fatigue and are leaning towards considering it a decline and possibly an increase in weakness. They have a list of things they want to do including starting an energy supplement, several blood tests, and they are finally ready to send her to NIH (National Institute of Health). Bailey's Neurologist had mentioned back in September waiting on several tests to be done until a certain doctor was present at NIH who specializes in Muscular Dystrophy's. He could possibly be a help in figuring out Bailey's "underlying condition" other than the Arthrogryposis.

I'm excited that the doctor is finally here and that an appointment is in the near future but I'm scared because I feel like we are going to be starting all over again and this means MORE tests to put Bailey through. Tests that may not have ANY answers attatched or may have answers I don't want to see as well. I guess I just got used to the waiting game that I hate so much. Funny how that works huh?

Her hip popping seemed normal to the Physical Medicine doctor although I've never heard it before so I'm not completely sold on that answer but I did e-mail her Ortho doctor and am awaiting a reply since we are not supposed to head back to Philly til August. The Physical Medicine doctor also gave us an RX to have an equipment evaluation for assistance in lifting. When Bailey gets tired we carry her around unless we are somewhere we can use a stroller. Plus on a daily basis I have to lift her in and out of the car/car seat, bath tub, bed, etc. numerous times a day and although I don't mind doing these things it has really started to show some damage to my lower back so I'm excited to see what they suggest!


"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."