Back to the Mic-G!

Since the time that Kaitlyn got her Mic-Key button put in, she has had a lot of breakdown of the skin around the button. It wasn't healing properly, which wasn't good. She had the smallest Mic-Key button but it was still too loose and it was moving around too much, so we are back to the original type of G-Tube. It means that she has a hanging tube on her belly, but we would much rather the skin be healing than to have to redo the surgery!

Kaitlyn also had a virus of some sort for about 2 weeks. Her platelet count dropped and wasn't feeling too well but we were able to keep her out of the hospital since her hospice nurse came to check on her quite often. She is feeling much better now though and we are very, very thankful!

Kaitlyn's a little teapot!

Mic-Key Button

On Monday of this past week, Kaitlyn had her G-tube replaced with a Mic-Key button! The big difference is that there isn't a hanging tube now. Here are some pictures.

Before: Kaitlyn with the G-tube

After: Kaitlyn with the Mic-Key button

No big deal!

On the way home- sleeping beauty.

We're Skatin for Liam and Kaitlyn!

The fundraiser called "We're Skatin for Liam and Kaitlyn" was held on May 3rd and was so much fun! Family, friends and others gathered at Kate's Skate in Indian Trail, NC for a good time and to raise funds for our family as well as the Fudge family to help with medical bills for Kaitlyn and Liam. Our friend, Anne Ward, created the fundraiser and we are so thankful for all the work that she put into it. It really was a great event. I haven't been on a pair of rollerskates in a long time but it was SO great to let loose and have some fun.

Kaitlyn was in her Special Tomato chair that has a base with wheels and she watched as we skated by. She really enjoyed the music and all the people who came out to support her.

    
Chip rockin' his skates!

Kaitlyn and her Memere, Gigi and Pepere!












Liam and his parents Brian and Dawn Fudge

Kaitlyn hanging out!
 
Kaitlyn's cousin Makayla (on the left) with some of her friends

Anne (friend and fundraising coordinator) and Me

Anne did an amazing job getting the word out about the event to the local media. We were interviewed in our home by Fox Charlotte and they were also at the event.

Here is the feature story Fox Charlotte did on the event:


Here is an article on NBC Charlotte's website:
Skate-a-thon to Help Local Children with Life-Threatening Illnesses

The Charlotte Observer had the event listed in the paper as well as online:
Skating Event will help 2 Children

Just being able to have the words "Niemann-Pick Disease" being used in the media, makes a huge difference. A few days later, on Hoda and Kathie Lee on the Today Show, they featured a boy with Niemann-Pick Type C. The more we can get the message out to the public about this disease, the more attention it will generate and ideally more funding for research.

A HUGE thank you again to all of our friends, family and community members who came out to support Kaitlyn and Liam at Kate's Skate!