Up-date
We had Ainsley's Neuromuscular apt on Tuesday. |
We were grateful we didn't have to wait until July to get some answers. |
We visited with the resident and then Dr. Mathews the Neuromuscular doctor. Ainsley made some new friends that day! |
They wanted to see Ainsley walk and run down the hallway. |
The second time they asked her to do this she was in her diaper only and she thought that was the best thing ever running down the hallway with an audience! |
The doctor shared that while Ainsley has some indicators, she is not in her words a "slam dunk" for a muscle disorder--which is GREAT news! |
She explained the chromosome deletion that Ainsley has only occurs in .1% of the population. |
Ainsley's missing chromsomes are just outside of the window of a muscular disorder that she has some of the characteristics for. |
They have extensively studied that section of chromosome 4 and they haven't found a case for that neuromuscular disorder outside of those specific chromosomes. |
She said that she wouldn't "chase" Ainsley's CK level since it is only slightly elevated and told us not to worry. |
She went over the warning signs of the muscle disorders and told us to bring her back in to be seen if we observe those signs. |
We left there feeling very hopeful! |
We left the doctor and breathed a sigh of relieve. |
Ainsley liked watching the construction zone at the hospital. |
We took Ainsley back to school so she could run around and play before lunch. |
Ryan and I stopped by Red Lobster for a quick celebration lunch (thanks Sarah & Kevin)!! |
The rest of that afternoon I was having a hard time feeling a complete sense of relief and I didn't know why. |
Victory! |
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