Hi! We are still basking in our memories of the Make A Wish trip. It was so wonderful. Many of you have been asking "what's up" so here is an update.
Within the next two weeks we should hear the results of the genetic testing that is being done on Perry and I. This is being done to determine the cause of Zach's "current diagnosis..."heterozygous C>T nucleoitde substitution in exon 7 of the CASR gene". LOL. Regardless as to what they find out, we have peace and know that even though this is "new" to the doctors, God is Sovereign over all His creation. Nothing takes Him by surprise.
Our next trip to Maryland will be from June 6th to the th. This trip has two purposes. From the 6th to the 9th, Zach and I will be attending the 6th annual Hypoparathyroid Conference in Rockyville Maryland. Its about 20 min. from the NIH hospital. I am very excited to go and learn more from the amazing Doctors and researches that are there. Perry and I were so blessed to go last year and that is how we finally connected with Dr. Winer and how Zach got into NIH!
Last fall, they asked if I would speak at the conference this year. This is the list of speakers:
Maria Brandi, MD - University of Florence, Italy
Michael Mannstadt, MD - Harvard University, Massachusetts General
Harald Jueppner, MD - Harvard University, Massachusetts General
Michael A, Levine, MD - Children's Hospital of Philadelphia
Dolores Shoback, MD - University of California, San Francisco
Aliya Kahn, MD - McMaster University, Ontario, Canada
Daniel T. Ruan, MD - Boston, Massachusetts
Michael Collins, MD - NIH
Rachel Gafni, MD - NIH
Karen Winer, MD - NIH
Bart Clarke, MD - Mayo Clinic, Rochester, MN
Barry Bennett, MD - Idaho Falls, ID
Martin Nusynowitz, MD - retired; Keynote Speaker
Glynn Voisin, Esq.
Jim Sliney, Jr - Research Assistant Columbia University
For more information here is the link
After the conference is done on Saturday, Zach and I will head to NIH for 2 solid days of Doctor appointments and testing. We get back to good old Alberta on the 13th.
Zach has been doing very well. They are keeping his calcium in the lower range to prevent an increase in the calcification's in his body. This is necessary, however it does make him more symptomatic. He handles it very well and is getting very good and "knowing" what his body needs. We've had some concern regarding his joints. I will post more about this latter.
We are thankful for all the prayers and concerns. We cherish your words of encouragement and support. Have a great week! luv t