Family: Support: Share Your Story: David
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| David at
6 weeks |
David was born in 1988 and was diagnosed with PRS (Pierre Robin
Syndrome) within minutes of delivery. He was intubated in the delivery
room and flown to a NICU 125 miles from home. His breathing issues
were quite severe, so a trach was placed when he was three days
old. He was fed via NG tube in the NICU for five weeks. We found
a sippy cup, after many trial and errors, and we had to alter it
to make it work.
He came home from the hospital when he was almost three months
old. We had 18 hours per day nursing care during the week and 8
hours per day on the weekend. He was fed round the clock due to
his difficulty gaining weight. We discovered the Mead Johnson Cleft
Palate nurser when he was about five months old and began using
it. The sippy cups got quite messy the older he got.
He had his palate repaired at 14 months and the trach was removed
during the same hospitalization. He was diagnosed with Stickler
Syndrome just prior to his fifth birthday. Most of his Stickler
issues are related to his eyes, he does have some joint involvement.
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| 5th grade
school picture |
He has had the following surgeries: Tracheotomy, ear tubes, palate
repair, t-tubes, t-tubes out, trach stoma repair, adenoidectomy,
eye muscle repair, loose sphincter pharyngoplasty, pharyngoplasty
rework, giant retinal tear repair, a retinal slit repair and a lens
implant.
Despite all his struggles, he is a typical pre-teenage young man.
He struggles in school, but seems to do better with extra help.
He just recently had surgery to remove the lens with the cataract.
They were able to successfully place a lens implant. We had been
avoiding this surgery in fear of what would happen to the retina.
But, his eye pressure was very high and we had no choice. It turned
out very well so far.
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| February
of 2000 |
No doubt about it, he is the joy of my life.
By Nancy
Last Updated:
6/14/02
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