Name: Ian Even Swarr

Nickname: Pookie

Location: Washington Boro, Pennsylvania, USA

Form of EB: Recessive Dystrophic

Birthdate: May 28, 1998

Lives With: Mommy Delicia Swarr and grandparents Carl and Brenda Groff

More About Ian:

Ian has RDEB but the biopsy was inconclusive as to whether it was Hallopeau Siemens type. Ian has been a true delight to us and has helped us learn so much about caring and appreciating things around us and taught us NEVER take your skin for granted. Ian's favorite things are Pooh , Eeyore, Barney and Elmo. He recently visited Disney World with his mommy and many other EB families for Valentines Day 2000. He enjoyed seeing all the characters but was scared of Minnie Mouse for some reason. Last August he flew to California with his mommy and grandparents for the 99 Debra EB conference. He had his first plane ride, first boat ride, saw his first pelican and sea lion and first time on the beach that week. The weather was beautiful and we had a wonderful time meeting all the other EB families. Ian loves music and often falls asleep with a lullaby CD. He has a snow globe that plays Row Your Boat and says "row row" when he wants you to play it. He has a little electronic guitar that Nana Sheri gave him for Christmas that he always seems to want to play with the volume turned on hi right when you are watching TV. But his most favorite thing to do when your watching TV is to change the channel or turn it off . Taking the batteries out of the remote is something else he has learned how to do recently. We have two cats name Wilbur and Baby who have excepted Ian as long as he doesn't get to close for very long . He calls them WooWoo and Babeee. He enjoys sticking his fingers in their ears , pulling there tails and putting his toys in their water dish much to their dislike. Ian is small for his age and weighs 22 pounds. He had a Gtube put in when he was 3 weeks old and had it till he was 5 month old. He drinks pediasure and loves to eat many different things but not in large amounts. Some of his favorites include: macaroni and cheese, baked or mashed potatoes with lots of butter or gravy, spaghetti, scrambled eggs, crackers, soft cookies, ice cream, carrots , peas, soggy Cheerios, yogurt and cream of wheat. He also likes to suck the juice out of dill pickle spears. He takes after his mommy and poppop when it comes to loving dill pickles. He has 10 teeth. Each day a Registered Nurse comes for 3 hours to help his mommy give him a bath and change his bandages. He often will say " bye bye" when they come. Hmmmm I think he thinks if he does that maybe they will leave and not change bandages. They also check his temp and pulse listen to his lungs and play with him . There are 3 nurses who take turns coming and they have become very close with our family and are very good with Ian. They all have checked out the EBmommas web sight and watched the Debra video. They have been very willing to learn as much as possible. One of the nurses wants to come to the next Debra conference in Washington with us. When Ian first came home from the hospital changing bandages and bathing was a 3 hour job. Now it takes 1 hour and if Ian is being good it can be done in 45 minutes. Three of Ian's toes are webbed and he has a lot of blistering on the tops of the feet , ankles, elbows and knees. Ian loves to have water poured down his face when he takes a bath . When the tub is being filled he has been known to put one of the cats toys in the water. Ian loves to spend time in the evening before bed playing with his toys and his poppop. They build funny looking towers and houses with blocks and legos. Then Ian knocks them down and claps and says "Yay"!!! Then he waits for poppop to build it again. They often read story books together. This past summer if Ian was real fussy or crying you would often see him and poppop out walking in the garden looking at the vegetables. It worked to calm him down every time. Poppop loves wooden boats and has a classic 1956 Chris Craft. He is getting ready to build a wooden boat this spring and said by the time Ian is old enough to maneuver his own boat he will have one built for him. A small one of course. Ian attracts a lot of attention wherever we go and we use every opportunity to educate people about EB. We love him dearly and are so glad God gave him to us. He has made our lives complete.

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