24 Hours Later and we're 50% towards the goal
April 08, 2017
BENEFITING: EURO-PEDS FOUNDATION
THIS FUNDRAISER IS NOW CLOSED. IF YOU WANT TO HELP OTHER ADOPT A EURO-KID FUNDRAISERS, PLEASE VISIT THE EURO-PEDS FOUNDATION PAGE.
IsisMaria is my almost 15 year-old daughter. She is a very happy, beloved by many, social person who happens to have a severe version of spastic quadriplegia cerebral palsy. One way we've tried treating her spasticity and dystonia is with a pump implanted in her abdomen equipped with a catheter which delivers microdoses of medicine to the cerebral spinal fluid (that's called "intrathecal" to the nerds out there.) There have been problems with this pump that cause IsisMaria to go blue and have trouble regulating her pulse and blood pressure and be completely spastic/ stiff as a board at others. A surgery in December of 2016 had hopefully solved that, but trouble was afoot. On January 3, 2017 we noticed what appeared to be an infection brewing at a surgical incision from the month before. The next day began normally -- we visited the clinic so they could check the incision. The day ended with IsisMaria in ICU with a special IV in the jugular vein delivering medicine to keep her blood pressure up enough to run her organs. The next day she was intubated (for 3 days) because her body just couldn't make breaths. While many Americans were celebrating the New Year, I sat in a hospital room staring at my limp, cool to the touch, unresponsive child who I had just celebrated Christmas with. The Odyssey of this hospital stay lasted 33 days, with 2 surgeries, days on end flat on her back after enduring surgery, cerebral spinal fluid leaks, medicine decreases and then increases, wekness, days on end of zero food etc. etc. We FINALLY made it home and Isis is going back to school. Her big goal right now is to learn how to use her eyes and gaze to operate a speech device -- like Stephen Hawking only way more rudimentary. 33 days flat on your back with marginal nutrition / sleep coupled with the trauma of the situation and a huge change in the medications which control the tightness of muscles have left IsisMaria somewhat like the Tin Man. Her can of oil happens to be a highly specialized PT clinic in the Detroit metro area where therapists are trained in this highly specific method of therapy geared towards helping kids make gains with their bodies in cases where it formerly seemed impossible. Like with my daughter. A last minute opening in the schedule has been offered to IsisMaria and with 10 days notice, we are packing for a 2 week trip! This is an out of pocket clinic and we have 12 nights in a hotel to fund. Grants have been offered in the amount of $2,500. We have $ 2,000 left over from the last fundraiser. If you had something to spare to help us make the gap, we'd sure be grateful. Thanks for reading this far. Blessed Be.