i'd love to talk more about your pgd testing! what lab did you work with to have the testing done? did you have a cvs or amnio after the pgd to "make sure"? my doctor told me i needed special markers made to test for dmd. i just went a round of pgd and tested for sex only as to just have girls. the dmd test was just way too much money for us. how did you handle ivf being that you needed it only for pgd?
sorry so many questions but i've never met anyone anywhere who has been through the same thing i'm going through now.
Rebecca posted a question under the California families asking about SF care clinics. I provided what information I had available and suggested you may be familiar with the other clinic as I was not familiar.
I am anxious to see what you know about the clinic Rebecca is referencing....always good to know what is available.
Hey, Kim thanks for the welcome, I have lived in Magnolia for 7 years, we like the smalll town feel, we also lived in Vidor for 15 years. We are orginally from Joliet, ILL, We have met lots of nice people in these two small towns we have lived in since leaving our home town of Joliet. I do know a Karen Maddux here in Magnolia her son James is one of Jonluke's friends. Have any kin still here? I would love to hear how things are going for Alex, he and Jonluke have the same interests legos, hotwheels,etc,, keep us posted.
Yea, how exciting. Is this Dr. Brenda Wong in Cincinatti? We are going to see her in November for our first visit for 3 days of tests. We are going to make a vacation out of it too and visit one of our friends and his family about 2 hours outside of Cincinnatti. He was our adult ministries pastor at our church and has been pastoring Grace Chapel in West Liberty for several years now. So that will be a nice visit. Oh gosh, hugging is so fun with our sons. I can just imagine hugging my son when you say that. They are wonderul, aren't they?
Hi Kim...yes, I remember a Kim from No. Cal. three years ago too! It's nice to hear from you. Your kids are so cute...I recall now that you didn't come the last couple years because of the twins, but did you go to the conference this year? I'm glad to hear you son is doing well. Let's stay in touch. I'm still learning this new system, but I'm getting better! Take care,
Thanks for leaving a comment on our page. You sure have cute kids. It makes me wish my boys were all little again. Do you guys do clinic in SF? We used to when Nick was about Alex's age. We lived in Fort Bragg at the time and UCSF was the closest to us. We now see docs in Sacramento.
If you ever have any questions and want the input of a mom with an older son feel free to ask.
I saw your comment in the deletions group, and my son has a very similar deletion, exons 8-18. My son, Andrew, is now 12 and is still walking. I live in Southern California (Moorpark). Whereabouts is Alamo? Are you also a member of the CA group? I just joined. It would be interesting to "compare notes" to see if Alex and Andrew have a similar progression of DMD due to having a similar deletion. Sounds like you are very busy with your three kids. I'm impressed you have time to scrapbook!
Hi - Glad you joined. Good to hear from you. This is a great support system. Thanks...Alex is a great kid and keeps us busy. We started Cub Scout camp today. I volunteer and stay with him since there are some things he can't do. Still lots of fun.
Thanks for checking in, we'll chat soon.
I just want to thank you. You were one of the first parents to e-mail me last year around the time of my son's diagnosis and I really apprciate the insight and the kind words that you offered. Your children are beautiful also. :)