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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....

Saturday, March 19, 2011

Tiles For Smiles

Tiles For Smiles is a project hosted by NHRMC (New Hanover Regional Medical Center) in conjunction with Monteith Construction. Children from the community and their family, who have had extended stays at NHRMC, were invited to NHRMC to paint tiles. The ceiling tiles will be placed throughout the Women's and Children's Hospital, the Pediatric Speciality Clinic and other areas of the hospital in which a child may visit or stay. These tiles are to help make the hospital and clinic more child friendly and not so scary.

March 14th marked Timmy's 7th year discharge anniversary from the NICU after 4 1/2 long months.

This year Timmy's heart wasn't much into painting the ceiling tile. Timmy fell asleep on the way to the hospital, so his nap was interrupted. The event was held in the new Women's and Children's Hospital lobby this year. The room had an echo, which Timmy doesn't like. The echo is worse when children are talking loudly or crying. This upset Timmy so we had to leave early. Emily had fun though.  The entertainment this year included The Panther's Cheerleaders, a clown, stories read by Two Sisters Bookery, and dancers from Danzquest. There was also a booth set up for face painting, hair styling and fingernail painting.

The theme throughout the hospital is Ocean scenery. Timmy chose to paint a crab. Look at him. Even though his heart wasn't completely into the painting, he did a GREAT job holding the paint brush, while Merry held his wrist and guided his hand/arm to help him paint.

Emily chose to paint a Dolphin. She did a Wonderful job as well. Emily isn't a creative or artistic child. Coloring and painting are activities, which Emily finds to be too restrictive. She had much rather be outside running and playing, swinging or riding her scooter.

Below are a few pictures of our little Diva after she had her face painted, fingernails painted and glitter sprayed into her hair.


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