Thursday, September 30, 2010

We are not alone

After searching on the internet for Jordyns syndrome it seems that we are not alone. I have found a website under microdeletion 17th and found a little girl by the name of emily. This website directed me to another site which has 5 children from around the world with this condition. The website is chromo17europe.webs.com and emily17q.webs.com/ourjourney.htm. Here you will find alot of information about what Jordyn has and how rare this syndrome is. They offer alot of support but it is in Europe.
Jordyn to the Kidney doctor and he said her bladder is half the size of what it should be. He placed her on two new meds and will do another test in November. He is going to schedule surgery for her kidney reflux in november as well. Jordyn still weighs 16pounds but she is becoming a social bug. She smiles alot, grins, and laughs. She has eye surgery on the 8th of October to clear her clogged tear ducks. Jordyn is truly wonderful to be around and I look foward to what she will do in the future. Therapist are working with her 3 times a week and our goal is for Jordyn to sit up with no help. As we head into her second Halloween, Thanksgiving, and Christmas I hope Jordyn will continue to meet more milestones. Thanks for everything, Melissa

1 comment:

  1. You're certainly not my friend. Friendships brought together by our beautiful little girls uniqueness....

    So glad you found me xx

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