It has come to my attention that many of my new blog readers don't really know the story of the boy.
Here it is.
Dovi P was born on November 13, 1997 to his very innocent, bright eyes and bushy tailed parents after 8 months of marriage (ha ha all you funny people. He was born 1 month early. I was due 1 month and 1 week after I got married. That you may laugh at). Benjie and I were 20 years old.
Almost immediately, we knew something was up. The baby. would. not. eat.
Which brings to mind the infamous "iced tea" story. If you ask nicely I might tell.
We were at the pediatrician at 4 days old, and she immediately sent us to a neurologist.
Within 2 months, Dovi was diagnosed with Familial Dysautonomia.
It is one crappy disease. It's one of the Jewish Genetic Diseases. His autonomic nervous system in underdeveloped. The autonomic nervous system is what controls everything our bodies do automatically.
So....Dovi's symptoms are:
Low muscle tone
Diminished sense of heat, cold, and pain (ie when he broke his tibia for the 3rd time he didn't feel it all all)
Unstable blood pressure
Unstable temperature
Lacks overflow tears
Scoliosis
Developmental delay
Speech Delay
Aspirates all liquids
Oral incoordination
Blotching of skin, esp for Dovi when he eats or is tired
Poor balance, unstable gait
Lack of taste buds
Dysautonomic Crisis
It's really rather crappy.
Because of FD, Dovi got a g-tube when he was 4 months old (on my and Benji's 1st anniversary-we ate cold Chinese food in the Evanston Hospital ISCU parent's room), and has multiple surgeries, notably cataract surgery at age 4 and scoliosis surgery two times in 2005.
Dovi has every single one of the FD symptoms. But he is a remarkably happy (if not healthy) kid.
So that's Dovi in a nutshell!
Friday, August 15, 2008
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6 comments:
You did leave out that he is adorable, hilarious, and a joy. Even though his disease is REALLY crappy. And that you and Benjie handle all that is entailed so gracefully (and obviously, with as much humor as you can muster.)
i've been in the family for 7 years and don't know the iced tea story?
sara - you never logged out when you were here last week so my comment came up as you. i was the one asking about the iced tea story...
We Love Dovi!
Hello. I just met Dovi on the trip to Orlando and I absolutely loved him. (I did get quite a few wonderful hugs from him which always brightened my day.) I just wanted to say thank you for allowing him to join us. He is truly adorable and wonderful.
Yea, I also just met Dovi on this Orlando trip - after hearing about him for ages. Thanks for sharing him with us! He's one deliciously happy kid. I admire his innate happiness and loving nature:) - Rachel
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