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Tuesday, December 27, 2011

And the results are in...

I recieved the results of Bailey's scans today. The scans were a brain MRS and a whole body muscle MRI. They also checked her marrow and they took blood to send for research/further testing. She stayed overnight at the hospital the night before her scans as a precaution. She is not allowed to fast so they thought it would be best if she stayed on IV fluids and had glucose checks throughout the night. The scans took 3 1/2 hours under sedation and she was able to go home a few hours after they were done and she ate/came down off of the meds.

The brain MRS portion of the scans were normal, this does NOT rule out a Mitochondrial disease but it also doesn't show a huge red flag for one!

The whole body muscle MRI showed overall decreased muscle bulk(muscle weakness) and fatty atrophy(loss of muscle tissue) of her forearms, thighs, calves, and 9 individual muscles in her legs and feet.

Her marrow was within normal limits which is good.

They said this does not give them specific answers but it does appear that whatever happened to Bailey's muscles happened during fetal development and it does not appear to be progressive(it won't get worse) which is good news. The other good news is they were able to identify the right muscle to biopsy to get the best result for more SPECIFIC testing of the muscle.

So, although we still don't have answers so to speak nor does this help determine why some of the other things happen to her it was the first step to testing and now we know of all the muscle damage. I don't know at this time what muscle they have chosen to biopsy nor do I know when the biopsy will be. I will update when I know more!

Saturday, December 10, 2011


So 2 days before Bailey's Shriners appointment I had a dream about Bailey coming home in a cast.. Must be Mother's intuition because I'll be damned if that's not what happened! I guess I should start questioning my dreams. haha.

Dr. vB said Bailey's right foot isn't looking very good, it has definitely regressed and the bone is starting to poke out of the side of her foot. He talked again about doing a tendon transfer but he'd like to wait until after she turns 4. So in the meantime he wants to try serial casting again, long leg casts for a few weeks then to a short leg cast for a few more weeks. He will then put her in a UCBL brace during the day which is a brace just for the bottom of her foot and for at night she'll have an AFO(like she has now) with straps. The good news is we are going to try to do away with a brace for her left foot ALL together since it's looked good for over a year now! So for now we will be traveling to Philly every 1-2 weeks for cast changes. Our next appointment is December 19th.

Not really sure what we are going to do about school while Bailey is in a cast, I have to have a meeting with her teacher to figure out the best way to go about this! I'm thinking if I get her new stroller which is an adaptive stroller that acts as a wheelchair and can be used to transport her on and off the bus that there should be no problem. Once she's in a walking cast she should be fine without it!

Wednesday is the BIG day! Bailey gets her Brain MRS & whole body muscle MRI. I am so nervous for various different reasons but it is finally here and I'm ready to get it over with and have some results.

That's all folks.

"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."