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March 19, 2010
My name is Sarah Dodd and my little one Christopher Jacob "CJ" just got
diagnosed with Distal Trisomy 10q at 24.1 with no
missing genes. He was born on time and weighed 5 lbs 4
ozs and was 19in. He was in the NICU for 8 days due to his
rapid breathing and later due to his low platelets and high bilirubin.
After birth I noticed that CJ's right eye stayed closed....I was told
that "it's just swollen." Well after 3 weeks I knew the "swelling"
should have gone down My pediatrician referred us to eye doctor and had us
get blood drawn. The eye doctor dx'd us with ptosis(which I now
know is a distal trisomy trademark) and has now referred us to an
eye surgeon. Just yesterday I was informed of his specific genetic
abnormality and now we are on to schedule OT/PT, 2D echo and Renal
and head ultrasounds......my world has drastically changed in
24 hrs! So far the most noticeable difference is his muscle strength....still
having trouble stabilizing his head and his right arm is
weaker than his left....I had thought it was due to his hate of
tummy time and my not making him do it often enough...... probably
due to his syndrome and me combined! Any support or word of
encouragement would
be greatly appreciated/needed 🙂 It's going to be a challenge
but my 1 in 6 million son is TOTALLY worth it!!!!!
Sarah Dodd