We just wrapped up with Dr Gunay and we are pleased to say that other than the very mild abnormalities on her liver ultrasound, Haley seems to be in great shape. Her kidneys look perfect on ultrasound, all of her lab work came back great, and for now there are no plans for us to return to the NIH for any further treatment or studies. A huge sigh of relief!!! Dr Gunay said that what they saw on the liver ultrasound was not significant enough to do anything extra for. She will have to have yearly ultrasounds and labwork, but she would have had to have that anyway for the minimum monitoring for JS. I am so glad we came here, it put our minds at ease because the kidney complications seen with JS can be very serious. Of course they cannot guarantee that she will never have kidney or liver problems, but with the data they have on Haley and based on their case studies they feel that her chances are minimal.
Right now we are waiting to go to the airport, our flight does not leave until later tonight, so we still have a long boring day ahead of us. In case you missed it, here is the link to the Santa story from last night. Haley is not on it....oh well!!
2 comments:
Laura, definitely sounds like the trip was worth it. You were able to get some good information. Haley is just wonderful and I wish you all the best. I am so happy she is doing well. Much love! Dolores & Alex.
Hi Laura! I went to highschool with your husband and I have seen photos of your daughter on facebook, She is a doll!!! We are stuck at home due to a big snow, and I have been playing on the computer and facebook, I saw the link to your blog. It is very well done and very interesting to read. I had never heard of JS either, I am glad to have learned about it and will pray for your precious Haley! The progress she has made throughout your posts is truly indredible and encouraging. You and Will have a remarkable little one! God Bless you this Christmas!!
Autumn Gray Stanley
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