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Hello everyone,
We have to go back in 3-4 months, due to Zach's ongoing concerns. As far as his avascular necrosis, it has remained localized in his right femur. He had a MRI on his left leg and no concerns at this time. Unfortunately, his right eye is now developing a more noticeable nystagmus. Poor guy, both eyes now. His left eye is much worse, but it is concerning that there are changes. Camille, do you go every 3,4 or 6 months? At this time, I told Nikki that the first week in May, would be good for us. Obviously, she needs to coordinate all the doctors schedules and would get back to me.
Needless to say, Zach and I had a great time at the Children.s Inn with so many NOMID families to talk to. I am always so touched to see how loving, caring and generous all the NOMID families are.
We had late conversations with
Fynley's family. Lisa and Colin, I hope your flight home was good and that you can get some answers keeping that sweet adorable Fynley stable. I can't believe the bond your children had with Zach and how sweet Isabella and Harrison were to Zach. Who knew Wrestling was going to be such a big hit with them. Lisa, if you hear anymore regarding Leonardo please keep me posted.
It was great meeting Salvador and his parents as well. Even though they do not speak much English, I felt we all were able to communicate very well. I hope they can stabilize Salvador's hearing as well as Zachs.
We also met for the first time Issac and his mom Kathe. What a little cutie. I really enjoyed discussing various topics with you Kathe also. I hope in the very near future they find a way to control his flares just like Fynley who both do not have a true diagnosis.
Jennifer, how are you doing. I hope you have not had anymore fractures. I can't believe after we met you in October, all those problems occur ed. Zach does get Pamidronate infusions like Fossimax besides his calcium supplements. He has not had any recent fractures, but as I stated above has developed AV necrosis. Are you getting a good response with artwork donations? Do you have anymore information regarding when and where you would like the artwork shipped?
I hope 2008 will be good for all of our families. Take Care,
Jan DaPrato (Zach Eise's) mom
Terry & Camille Lieffers <lieffers@...> wrote:
Terry & Camille Lieffers <lieffers@...> wrote:
Happy New year to all!We have not posted lately but have enjoyed reading all the news form others. Alice is doing well, except for today when she woke up with the stomach flu :-( Her niece and nephew had it last week. We are scheduled to go back to the NIH the week of February 19. Anyone else going? I always hope to run into Zach and his Mom. We are about a month off. Since Alice is 22 years old now it would be good to meet an "older man!" Too bad we don't live closer.....Anyway, blessings to all.Camille Lieffers
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