My Story

This website has been created to inform our friends and family of Ashtin and Braden's progress before and after treatment. Ashtin was diagnosed with Hunter Syndrome May 24, 2005 and Braden on June 22, 2005.

I have changed my cell number to 757-532-5763.

Journal

Monday, October 27, 2008 10:51 PM, CDT


HAPPY 3 YEARS POST-TRANSPLANT TO BRADEN!

I could not be happier today to have Braden here with us and as healthy as can be. We have been through so much over the past couple of years and each year that passes I think I am more grateful than the year before. I am continually amazed at how well Braden came through all of this and is now living as a typical 4 year old. He loves school, playing games, trains, cars... He has the biggest imagination I have ever seen. We will be going back to Duke soon for 3 year studies- I think it will probably be in December though. We will be going to Chapel Hill this weekend for an MPS meeting. I am so excited to see people we have not seen in awhile and I am always so surprised to see all of the kids there that look just like Ashtin :) Speaking of, Ashtin is doing well. The beginning of October marked two years of being on the Elaprase. I think we finally have a nurse that will be consistant. We really like him and he loves Ashtin. Ashtin was also put into a different school this year and he is doing so well. He does not get irritated like he did last year, and he has even tried to do a couple of puzzles and color some. His one on one aide from last year did come with him and he has also seen the big improvement in Ashtin. I am back in school this semester and if all goes as planned I will be starting the nursing program next fall. I am really enjoying going to class but it has been very difficult to study as much as I need to and get the work done. The boys still take up so much time and they hardly ever sleep a full night so I am always feeling tired. But as soon as I start to get upset about it I find myself just thanking God that they are still here with us. If I have to sit up all night it would be worth it to continue seeing their precious faces. Anyway, the boys are actually both sleeping at the moment so I think I will try and go catch a few hours myself. Thanks so much for continuing to check on our family. We have been blessed by each of you and are so thankful for the continued prayers.

Love, Dana


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E-MAIL AUTHOR

dajobst@cox.net

HOSPITAL INFORMATION

Duke Pediatric Bone Marrow Transplant Program
2400 Pratt St.
Suite 1400
Durham, NC 27710
United States