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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....

Wednesday, October 29, 2008

What A Day!!!!

Timmy had to be at the hospital at 6:30am. We arrived a little late, 6:45am. After checking in at admitting, we were sent upstairs in the Children's Hospital surgical unit. We were immediately taken back and Timmy was prepared for surgery. Timmy was taken into surgery at about 8:00am. His surgery was over at about 8:45am. Surgery went great! There wasn't an infection in either ear. The ear tubes that had been in the ears had come out. The doctor cleaned the ear wax out of the ears and replaced the tube in each ear. Timmy did so well in recovery, we were ready to leave by 10:00am.

On our way home is when everything went downhill! Merry Small, one of Timmy's home health nurses, drove us to Timmy's scheduled surgery. Merry stopped to fill up her car with gas before we started on our way home. Within a few minutes of leaving the gas station, the check engine light came on. Merry pulled over thinking that maybe she had failed to replace the gas cap securely. Immediately after leaving the interstate, the car engine dies! Merry had just recently had her car serviced and she checked the oil before we left to go to UNC. After checking everything that she could possibly have fixed herself, she made several calls to towing services trying to find someone who would do roadside service. NO ONE did roadside service. She then called 911 and a policeman was dispatched. He called a towing service that they use alot. When the tow truck arrived, the driver agreed to tow the car. Being that there wasn't enhough room in the tow truck for 3 other adults and a child in a car seat. Can you guess how we got to the towing company at the same time as the car??? We rode in the car, on the back of a flatbed tow truck!!! Wow, what a ride that was! The ride was almost as good as a carnival ride or a fair ride. You can feel every pothole hit and when the driver would turn a corner or go around a curve, it felt like the car was going to tip off of the tow truck. After dropping $30 for gas, $125 for the tow, well over an hour wait and possibly closer to two hours for the mechanic to diagnose the problem with the car, everyone's stress level was at its max! When the mechanic returned with the final verdict as to the problem with the car, we all were sent into a state of shock! The problem was one that had not even crossed anyone's mind. The timing belt has broken and this in turn had made the entire engine go bad!!!! Man what luck! Over 180 miles away from home with a child who had just had surgery and wasn't feeling great. Timmy was crying from being in minor pain, feeling miserable from having a high blood glucose level, hunger , the stress of just having had surgery and just the stress that he was picking up on from everyone else. This in turn drives our stress level up even further. We all are trying to calm Timmy while brainstorming our options. Merry decides that the best and only thing to do is to rent a car. So Enterprise Rental was called and someone from Enterprise comes to get us to take us to their office so that Merry could sign the approperate rental agreement papers. WooHoo our problem as to how we were going to get back home had been solved! Yeah right! Merry goes in to sign the rental papers and just because she doesn't have a major credit card and she wasn't from the local area, they wouldn't let her rent the minivan. Merry's Visa Check card wasn't good enough for them. I had a major credit card, but they wouldn't accept my credit card, because I don't have a driver's liscense. And cash was totally out of the question for an option. Merry called her sister Chris who lives, but who is in the process of moving from the area, to help save the day. Chris came to Enterprise and took the minivan, which Merry had tried to rent and Chris let Merry borrow her car. THANK YOU SO VERY MUCH CHRIS!!!! YOU ARE A LIFESAVER! I DON'T KNOW WHAT WE WOULD HAVE DONE WITHOUT YOUR HELP. Timmy had just had surgery that morning and he wasn't feeling well. We had exhausted all of our other options. THANK YOU! THANK YOU! THANK YOU! And if there is ever a day that you need a favor feel free to ask for our help. We owe you one.

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