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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, January 11, 2012

Brotherly Love To The Max

When I found out that I was pregnant with Nate I worried about the 6 years age difference, how Nate would accept Timmy with his disabilities and how well the two of them would interact, being that in a short period of time Nate would surpass Timmy's developmental abilities cognitively and physically.

Those worries were quickly pushed aside. At only a couple of months old Nate has delighted and insisted on spending time with Timmy each morning while Timmy is getting ready to face the day. If for some reason, like Timmy has a Doctor appointment out of town, and Nate is unable to see or spend time with Timmy in the morning it's like Nate's world has come crashing down onto him. And his day has been totally turned upside down until Timmy graces Nate with his presence.

I believe that Nate has early on realized Timmy's limitations and Nate has adapted his interests and interactions with Timmy to Timmy's level. Nate really enjoys just sitting with Timmy and listening to music or having books read. One of Timmy's current interest has to do anything related to Pirates. So Nate has also taken up this same interest and enjoys pretend play of Pirates with Timmy.

There has also been times when Nate has taken the role of Brotherly Love to the Max. One evening after Timmy's Home Nurse had finished brushing Timmy's teeth, with Nate's supervision, she left the room to go clean Timmy's toothbrush. Upon her returning to the room she found Nate had crawled onto Timmy's lap and was licking the excess toothpaste from Timmy's teeth.

It warms my heart to know that Timmy's siblings have shown a great deal of interest in Timmy's day to day care. And Nate is no exception. At an early age we have taken the time to show and allow the siblings to help with Timmy's daily care where approperate. One thing that we allow the siblings to start helping with is supplimental G-tube feedings. We even explain that the G-tube needs to sometime be cleaned.

Well, on our most recent train trip to Chicago for Christmas Nate took this daily task to an extreme. I was gathering up the kids things for their nightly bath when I heard Nate sucking on something. My first thought was Oh Boy what have you picked up off of the floor and put in your mouth now? When I looked up what did I see? Nate was "cleaning" Timmy's G-tube! Yeah you got it. Nate had pulled out Timmy's G-tube and was fiercely sucking on the balloon! Just the sight was gross, funny and shocking all at the same time that I didn't know which reaction to display first. Of course I quickly regained myself and took the G-tube from Nate, cleaned it and replaced it. Being thankful that the force of Nate removing the G-tube with the balloon still inflated that their was no damage done.

I can only imagine what the future holds with the funny and not so funny antics that Nate has in store for us......

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