Started this discussion. Last reply by Joshua's mom Jan 23, 2009. 1 Reply 0 Favorites
Started this discussion. Last reply by Rhiannon Traigle Nov 16, 2008. 2 Replies 0 Favorites
Posted on September 30, 2008 at 12:52am 2 Comments 0 Favorites
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My name is Velia, and I just want to say that my son Joshua is deletion of exon 8, just a few months ago we found the disease last September, is still not medicated, we hope to god that this disease progress slowly, but feel that you very fast. Joshua meets 9 years old on April 6, God bless.
Thanks for your note. We are doing ok - hanging in there. Christopher will be 3 in May so our boys are about 1 year apart. My daughter Gracie will be 5 this spring and she is always thrilled to meet other little girls her age! It would be great to meet you all sometime soon when all the Colorado families get together! Pamela
Pamela
I just got a chance to catch up on the blog and wanted to tell you what a wonderful smile of joy the pictures of the kids brought! We had a tough day here and the joy was needed! Tell Hazel Happy Birthday from one special birthday girl to another - I also celebrate my birthday a week from today. I have another number after my 4 though. ;~) I wish you all the peace and rest you deserve this holiday season!
Ang :)
Our appointment at the MD clinic went well today. Karsten should be back in physical therapy by February, and for now the clinic checkups will be every 6 months.
I hope your pulmonologist can help Rain with his snoring and apnea. I am sure, like my boy, Rain is much happier when he sleeps well.
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