Started this discussion. Last reply by Lori Ware Nov 13, 2009. 8 Replies 0 Favorites
Started this discussion. Last reply by Donnie and Linda Owens-Jacob Owens Feb 5, 2009. 7 Replies 0 Favorites
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Janine
Janine
thanks for your post. I mix the sugar free kool aid as normal and then just add the Juven to an 4 oz glass of sugar free kool aid. we mix it in either a sippy cup or water bottle so we can continue to shake every couple of sips. we then have him drink down a 4 oz glass of water. so far so good. good luck
I had IVF done in Seattle, and it was completely expensive, especially since we had to do it twice. It was around 20K both times. My parents helped out - Aidan was their only grandchild, and his diagnosis broke their hearts as much as ours.
The process sucks - it's really difficult. But we have Graham now, so it's worth it.
Absolutely DO NOT listen to the percentage quotes - they have absolutely no way of predicting how many of your eggs are affected. It could only be 1 (your son), or it could be 90% of them. There is no way of predicting your level of risk until you do IVF.
It's so hard - I don't know what to tell you. If you would like to speak with me more about it, you can feel free to email me at mindy_lef@hotmail.com
Mindy
I hope your appt. tomorrow goes well. I am working most of the day. I work in retail and Wed is a busy day this time of year. I am also not feeling well so getting together wouldn't work out. I am interested to hear what the doc has to say about the idebenone.
Janine
I found your page as I was going on in all this. I have two sons with DMD. Mathieu is 7 and still very active, and Malaky is 18 months old. I am also a carrier.
To say the least, we have had a pretty bad year.
Through all of it though, I still find myself pretty lucky to have two wonderful kids, a great husband, a great sister and really great friends. We are hopefull for a cure.
We have a bone density for Matt on Wed., and I am really looking forward to getting him on Deflazacourt. I am also looking at giving him energy supplements like CoQ10 and a good multivitamin with lots of Vit. D. I have herd some great things about great tea.
Anyway, I could go on, and on... I am glad you found this website and that we can be here for one another.
Take care, and God bless that beautigul family of yours!!!!
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