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I am the Momma of 8 children. Seven here on earth and 1 precious little Angel in Heaven. My children range in age from 2 months to 25 years. My 6 year old was born with a laundry list of complex medical conditions. He has Trisomy 21 (Down Syndrome), a rare brain malformation, which resulted from a mutation of the PAX-6 gene, bilateral anophthalmia, which means that he was born without any eyes, so he is totally blind. At the age of 2 1/2 months old he had to have a tracheostomy to help aid in his breathing. He is hearing impaired, with normal hearing in his left ear and has profound deafness in his right. At 3 1/2 years he had surgery to have a Mic-Key button placed in his stomach (feeding Tube), which is mainly used to give him his medications. He also has insulin dependant diabetes and wears an insulin pump, which gives him a continuous dose of insulin. Even with his many dis"abilities," including being globally developmentally delayed, he has accomplished more than anyone would have ever believed that he could. Join us in our journey living with a Dis"Abled" child....

Tuesday, February 1, 2011

Family Recipe For Excitment

Over the past 7 years we have tried this recipe for "Weekend Excitment."  Today the recipe was perfected.  Here is what you need to make your own "Weekend Excitment."


*A Friday evening or early Saturday morning (Friday evenings work best)
*A forecast for a significient snowfall for the Northeast
*A Little Boy (A Little gril may be subtituted)
*An insulin pump (Any medical equipment necessary to substain life may be substituted)
*A  6 month old who is sick with the flu and a cronic ear infection that needs to be fed, changed and wants attention, so they are screaming to the top of their lungs
*Long acting insulin with syringes (Any medication that can be added to the normal regiment will work)
*Prayer (optional)
*Ear plugs (optional)


1. Combine the weekend day and the significient snowfall in the Northeast. Set aside.

2. Play with, hug, and kiss the little boy, who has brittle diabetes. And who has a pancreas with a mind of its own, which causes the little boy to exhibit absolutely no normal signs/symptoms like a typical daibetic.
3. Slowly add the insulin pump to the little boy. This pump will help substain life and help the little boy grow and flurish.


4. Briskly add the sick screaming baby. And insert earplugs into your ears if desired.

5. Pray that there is a current standing prescription long lasting insulin on file at your pharmacy of choice. Pray that you are able to reach the Endocrinologist by phone or pager being that it is a weekend and he does have his own family and life to lead. Pray that the sick screaming baby will fall asleep, long enough for you to take care of the emergency at hand.

6. Call pharmacy. Have needed insulin. Call Endocrinologist. Reach Endocrinologist. Get orders for the correct amount of insulin to give. Call Animas to try to trouble shoot the insulin pumps problem. COMPLETE PUMP FAILURE.

7. Combine the weekend and predicted snowfall to the other 6 ingredients.

Product is complete after 72 hours of no sleep, head full of grey hair, all fingernails are jagged, and complete loss of sanity AND the replacement insulin pump arrives via UPS.

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