Nicky's EB Info World ~ Featured EB patient: Dennis

More About Dennis:
Mommy: Liesbeth
Daddy: Johan
Sister: Suzanne, he sometimes calls her a monster but most of the time they love each other.

Favorite foods and drinks: french fries, potato chips, cheez dippers (crunchy bread sticks in soft cheese), cold milk and Sisi Freshlight for kids (without sprinkles).

Favorite TV-series: Reboot, a series produced in Canada, it's about a computer system called Mainframe. Several characters are computer names like Megabyte, Hexadecimal, Mike the TV, Bob, Enzo and Dot Matrix). I think Dennis has seen every episode at least 25 times and he is not even old enough to read the subtitles yet)

Dennis

and little sister Suzanne riding

Dennis was born with no skin on his legs from the knee down. He was in the hospital for 9 weeks altogether, before we were allowed to take him home. In the first few weeks, no one was told that blisters needed to be popped, so he was a complete mess all over. He could not drink enough on his own, so he was fed with a tube through his nose. The tube was attached to his cheek with Duoderm, which came off spontaneously a few hours later and took all the skin with it. After 3 weeks he was transferred to another hospital, in a burns unit. There they knew how to take care of wounds and they taught us everything. From that day forward he got a little better.

We took him home without his nose tube, and despite of all the blisters on his tongue, we were determined to let him drink his bottle. We started popping blisters in his mouth (now, 6 years later, we can=t imagine we did that, but we really had no choice at the time - we just did what we had to do). He now takes care of these blisters by himself (he actually bites them).

We were told that he might never walk, and we shouldn't have high expectations, but we never thought that he wouldn't. We have always believed in his strong will and we were right! He even crawled for several months (poor knees and hands) but at 2yrs and 1 month he started walking! Wasn=t that a real milestone for everyone...

Dennis' hands and fingers web easily, and at 3 years he was operated on his right hand. His fingers were separated and stretched (they had almost grown together). The left hand was done 6 months later and his Anew hands as he called them gave him more freedom and possibilities. After these surgeries I started bandaging his little hands, as fragile as they were. At night he wore silicon splints, which worked just fine for him. The only disadvantage was, that he had a tool to scratch with, and he kind of tore his whole skin apart. Last year (august 1998) both hands were operated again, due to the fact that the result of the first operations was gone completely. After a good talk with Sheri I threw away the splints (it was a big step) and use the bandaging method only. It's more comfortable for Dennis, too. Hopefully another operation will be delayed for some time now.

Food was always a problem. Soft and mushy foods were all he ate, and always just little bits and pieces. Everything else made him choke and throw up blood. At 4.5 years old he got his g-tube - and it literally saved his life. He was very much underweight, way too small and his bowel Dennis in

his wheelchair!!!

movements caused major problems. In that particular year, he got sick and refused to eat at all, got constipated and dehydrated. His life was slipping through our fingers and that was our turning point. As soon as the tube was in, he started gaining weight and he still does. He is growing into a big boy now as you can see in the pictures. We had postponed it as long as possible, but in the end it has proven to be a good decision. And like someone else mentioned on the EB Mommas list, it didn't feel like we lost, we have only won.

Dennis goes to a special school for disabled children. While at school, he gets physical therapy and everything else he needs. This wasn't a tough decision. In our country, 30 or more children in a group isn't a exception. There was no possibility that he could get an aid. This would have been really scary for him. So we decided that he should go to this special school. And he loves it! He turned out to be a very smart child (his way of thinking is very mature for his age). He started reading at 5yrs of age and he still goes at high speed. Fine motor skills are difficult, like cutting paper and writing, but he does his very best.

Since a few months he has an electric wheelchair, which gives him a lot more freedom than he 'used to have! He was only able to walk about the house, otherwise he would hurt his feet or got way too tired. And look at him go now! His little sister jumps on the back and rides with him so it's fun for two.

Seeing him in all this pain, hurts me more than anyone (that doesn't know what EB really is) could ever imagine. Some people have asked me You do get used to all these blisters, don't you?, but NO, I will never get used to them. Every blister I have to pop, makes my stomach turn. I have learned to switch to the A zombie mode whenever necessary but it's always difficult, sometimes even impossible. It still makes me cry when he has sore feet and wants to walk and he just can't.

It also makes me very very proud when I know he has sore spots all over and he still keeps doing things. Like last week, we had a family party. Dennis played football with his cousins and he had so much fun. The next day he had major blisters on both his feet. We popped them, bandaged them and an hour later he was playing again. Isn't this amazing? Are these kids brave or what?

Playing: You've got a friend in me from Toy Story
Be Brave. Even if you're not, pretend to be. No one can tell the difference.
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