Thursday, April 2, 2009

Monday, March 30, 2009 Finally A Little Hope

We went to see Shailee today. She is still stable and doing well. She was a little jaundice today, but nothing out of the normal. Her belly is healing very well, they had her foot casted today when we got there, they are starting to correct the club foot. She will get a new cast every week until it is better, and they feel it is only going to take 2 to 3 castings to correct her foot. She did have a heart flutter today which put her heart rate in the 280's but she corrected it herself and went right back to normal within seconds. The chaplin at the hospital came and did a blessing on Shailee as well. The best news of the day was when her doctor came in to talk to us about the chromosome tests that they did. they still don't have the final report but they do have a diagnosis, and it ISN'T trisomy 13 or 18 like they had thought in the begining. Shailee is missing part of chromosome number 5, which is called Cri-Du-Chat Syndrome (french for cry of the cat). This is a very rare syndrome, turns out it only effects 1 in 50,000 children, but the good news is that she is going to be ok. Shailee could face a number of problems in her life such as mental retardation (i really don't like that word lets say metal handicaps), developmental delays, and many other things, but the main thing is that she is going to have a life. There really is no way to tell how mild or severe things will be for her right now, we will see as we go. Now the doctors are going to start really working on her problems and getting things corrected. We are just so happy that she is going to be with us for a long time.

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1 comments:

lisa said...

God Bless your little one...She is BEAUTIFUL!!

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