Sometimes life hits you right in the nose with the truth, and suddenly everything looks different.

I'm not sure where to start off with this post since everything we've been through in the last few weeks leading up to Bailey's big NIH appointment yesterday is all so fresh.. I'm finding it hard to put this all into words let alone make sense of the information I've been given.

Our appointment at NIH was overwhelming to say the least. The place is HUGE, I think we got lost 10 times throughout the day. They weren't joking when they said plan to be there all day, we were there every bit of 9 hours. They had our whole day planned out. Bailey had a PT evaluation to see what all she is able to do then we met with the team of nurses, students, and Dr. Bonnemann who took down history and did a physical exam. After the exam they did a muscle ultrasound of Bailey's legs, arms, back, and feet and then she had an EMG test done and blood work but most importantly at the end of the day we had a sit down talk with Dr. Bonnemann about all of the information they gathered and what he thought.

Dr. Bonnemann agreed that Bailey is a very complicated child, she has several "puzzle pieces" that just don't quite fit together; Atypical Congenital Contractures, Her waves of decline, and abnormalities showing in her muscles. There are some things going on with her brain that they are un-sure of at this time and the muscle ultrasound showed that some of Bailey's muscles are indeed damaged. He recommended that Bailey have 2 complex MRI's, a scan of all of her muscles in her body and a chemical scan to show any chemical imbalances in her brain or any mitochondria that is not present in blood work. After these scans are done which will take several months, they will decide on which muscle to take a muscle biopsy from. In the mean time they took blood work and will be running more complex genetic testing. After all is said and done we will see what he comes up with. As of right now he said he has no idea what Bailey has off of the top of his head. I am not in the least bit suprised of that but it never gets easier hearing doctor after doctor say that to your face.

I am pretty numb to the information right now, we will just take it one day at a time, do what he says, and stay hopeful. I do know she is definitely being seen by the best place to possibly find out what's going on! We have a long road ahead but that is nothing new! We will keep on keepin' on! :)