I didn't expect to find out this way. I wasn't quite ready for confirmation yet that my youngest child also has Stickler Syndrome. The blood work had been sent off to genetics weeks prior, and even though I studied his facial features and saw right away that his tiny baby elbows were hyper-mobile (some call [...]
Tag: stickler mom
Stickler Syndrome Diagnosis – Our Story
After his vitrectomy surgery, his recovery required him to remain face down for 12 hours a day over a two week period. He was seven months old. When I asked Dr. Shapiro how we were supposed to do that, he reluctantly replied that he didn't know- there is no data for an infant with this repair and recovery.
We Have Arrived!
The first ten days in London were everything we imagined (besides the 90 degree temps with no A/C in our temporary housing.) We were up and out of the house every morning to explore a new neighborhood. The boys did better than we could have imagined. Dexter is almost four and has always been a [...]