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Wednesday, June 22, 2011

More Testing...

That first hospitalization we ended up being admitted for 2 weeks because the doctors felt while she was there she should see the specialist that she needed to see since we live a distance away from the hospital. Opthomology came and examined her and gave her the all clear, but I was not convinced. She also received PT, OT, and speech everyday while she was in the hospital and they recommended that we continue upon discharge. Therapy has made a world of difference for Caelyn!! At this time, PT expressed concerns that Caelyn's hands were always "fisted". They thought she might have "trigger thumbs" so they wrote up an order form for hands splints for Caelyn. At first I felt bad that she would have to wear them, and I thought "great. another thing for people to stare at. Poo Caelyn." I couldn't have been more wrong! They have helped her hand flexibility tremendously and after 3 short months, she no longer needs them!

She also saw neurology that day, and that is when our perception of Caelyn leading a healthy "normal" life was shattered. They came and saw Caelyn at her bedside and noticed that she was very hypotonic. She was like a wet noodle. She had very little muscle tone. They felt at this time, it would be valuable for them to do an MRI. Her MRI was scheduled for the next afternoon. I was so nervous because they told me that she had to be sedated. So that night they put the IV in. I felt so bad for her! She was not allowed to eat after midnight as her test was scheduled for the next day at noon. They next day came and they did not get her in until close to 5 pm!! Poor Caelyn was so irritable and starving!!

So finally the day came when she was able to come home and just as we were packing up and getting ready to have out Caelyn's neurologist came to discuss the results of her MRI with us. I can still remember the exact conversation like it was yesterday, though at the time I think I was in a daze. She informed us that Caelyn has a small cerebellar volume with some ventricular loss. So basically she has a small brain and a small cerebellum. She then went on to explain that the cerebellum was responsible for balance, coordination, and expressive language. She also said that they are finding more and more things that are connected to the cerebellum every day so it might have more of an impact of Caelyn in the long run than what we realized. I was just trying to process what all of this meant for Caelyn and for us, when she started the conversation again. This time it was to inform us that this is what was causing Caelyn's dysphagia (eating/swallowing difficulty), her muscle tone issues, and most likely Caelyn would never walk. What?? What did she just say?? My sweet little baby might never walk?? I was in complete shock. I couldn't believe it. How was this fair? What a minute...what did she just say? Caelyn may never talk either because the cerebellum is responsible for expressive language. I thanked her and we left. We were silent pretty much the whole way home. How could my sweet Caelyn never be able to walk or talk? My mind was racing...

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