Our trip to Disney!

It's been forever since I posted but life has been so crazy. So here is a quick photo entry about 0ur trip to Disney! We had an absolute blast and the kids loved every minute of it!

The family with Pluto.
Riding rides at Seaworld.

Waiting to feed the dolphins

Playing in the pool at the village.

Posing for a picture at the water park in the village.

Feeding the Dolphins at Sea World! My favorite day of the whole trip.

Karly at the Icecream palor, where we spent a lot of time.

Hanging around with Goofy!

Our home for the week!

I will post more later but at least it's a few to get started.

2nd Annual Chili Cook Off For Charity

This morning we found out that the wonderful people of Rite Aid Corporation (including Karly's grandfather Don, second cousin Jason, and godfather Mark) have decided the proceeds from their Annual Chili Cook Off For Charity will benefit 4Karly'sKause, and in turn, the National 4p- Support Group http://www.4p-supportgroup.org/. We are very humbled that a great corporation like Rite Aid decided to support Karly and all of her friends. It's especially humbling this year considering our national gathering is coming up this July in Salt Lake City. There are many children and families that will directly benefit from this event and the money raised.

For those of you that don't know, 4KarlysKause has been a way our family has brought awareness of WHS to others, as well as a way to raise a little bit of money for those affected by the syndrome. It started out as an idea (and a website) a few years ago and has become a "way of life" for all of those that know Karly. The spirit of 4KarlysKause is always alive... even if the website is not updated! (That is why we use the Karly's World blog!!!) Since the inception, we have raised hundreds of dollars that has helped support the National 4p- Support Group and local charities such as United Cerebral Palsy of Central PA http://www.ucp.org/ucp_local.cfm/132. Examples of support include:

• 4KarlysKause has sponsored a hospitality suite at the last national gathering that allowed families from all over the country a place to meet and share stores about their children. Sometimes just having a place to talk with others that understand your struggles is the best therapy.
• 4KarlysKause has provided support to projects spearheaded by UCP of Central PA such as the Adventure Zone Playground, an accessible playground that allows all children, regardless of their ability, to play side by side. http://www.adventurezoneplayground.com/index.php. This by far is Karly's favorite playground, and we frequent it at least once a week.

Thank you very much Rite Aid Corporation, and employees, for supporting, Karly, her friends, and everyone involved with Wolf Hirschhorn Syndrome. Your support is amazing and inspirational.

Enjoy the Chili!!!!!

Busy Days...And Make a Wish Update!

Since the weather has finally broke we have been spending a lot of time outdoors. We visited the park again and had a blast. It is so adorable to see my kids play so well together. Ethan is such an understanding and patient little guy. Some days he has more patience then me.

Another day at the park! Happy as can be...

Last Thursday night, we met with the Make A Wish coordinators. They came over after dinner and were there for about an hour and a half. They were the most wonderful ladies, Peggy and Ellen. They came bearing gifts for both kids, balls for Karly and candy for Ethan. Karly took to both of them immediately. The best part was that they paid just as much attention to Ethan as they did to her. He was very excited that they wanted to hear what he had to say too. So we made our wish... Disney World. They had Ethan speak for Karly since she can't talk yet. It was so cute to hear him describe why he thought she would want to go to Disney. They took our wish and all of our information so hopefully we will hear from them soon. We requested a trip either in May or wait until September. Karly wouldn't be able to bear the hot summer in Florida. She does not process heat well, so vacation wouldn't be much fun if we were constantly worried about her seizure activity and body temperature. We are very excited about the potential of the a vacation to Disney. We will keep you all posted!

The rest of our days have been filled with other activities that have been keeping us busy. This is our last week of freedom before spring sports start for Ethan. Last night we all went to a Hershey Bears game. Ethan had a blast and Karly did not. She was not into having to sit still and not kick the people in front of her. She only lasted one period then I took her down to the concession area and we walked around, had ice cream and just killed some time. After the game they invited the fans onto the ice for an autograph session. Ethan was so excited. I stood in line for an hour and half so he could get his autographs but it is so worth it to see the excitement on his face.

Ethan met this favorite Hershey Bears player last night. Autograph and all...

Join our Team!!!!

http://ucpfoundcentralpa.dojiggy.com/Karlys

Join our team for the Highmark Walk for a Healthy Community Walk for UCP of Central PA. Our team name is Karlys Team.

Hope you can join us and help us be the top fundraising team for UCP this year. It's always a great time; come out and walk with us.

Love, The Shellenberger Family

Our favorite Park!

It's finally starting to get warm!!!! We are so excited for many reasons, mainly we can get outside and play. Great for the kids and great for mom and dad too. There is a park that is about 3 miles from our house, wish is was walking distance but too many really busy streets to get there. The park was built last year and it's called Adventure Zone playground. The best part of it is that it is 100% handicap accessible. It's SO AMAZING!!! Karly can go on all the play equipment. Her jogging stroller can go to the very top, it's great. This playground was built with donations from the public, the land was donated by a church and 100's of volunteers to do the construction. Both of our kids love the park, they each have a fence post with their name on it and every time we are there we have to go find it. Once school is out we will go there for dinner at night. We pack a picnic and have a family dinner there and then the kids can play for hours. (Sometimes we are lucky enough to have a joint family dinner with the Weinstocks, our great friends!) Here are some pictures from our first day at the park this year....

She LOVES the swings!!!
Look at Karly standing...and she didn't even notice..
she was too busy playing with her big brother

Happy as can be...

We are looking forward to many more nights at our favorite park.

"To blessed to be stressed"

I just finished up at my company's annual sales kickoff and listened to the best motivational speaker. In the past few years, I have listened to many motivational speakers. Many were so into themselves and whatever book they were selling and you can see it right away. Others you get some ideas from them but never really blow you away. This guy today blew me away...his name was Jon Gordan. He message was very simple and well presented.

I must say I was not the least bit interested in sitting through one more speaker. According to the weather reports there was a blizzard coming (however now riding home on the bus...I see no snow). Anyway I just wanted to get the day's meetings over and get home. Five minutes into his speech I was completely engaged. I was scribbling down notes and taking it all in. He spoke from the heart and I believed every minute of it.

The message that hit home the most was when he said "to blessed to be stressed." Such as simple statement but how powerful! It amazing how much this just stopped me in my tracks. I think of all the times in a day that I'm stressed. (Lately it's been a lot) If in those times I would just stop and think about all the wonderful blessings in my life and not the stressful situations imagine how much happier I would be. Caring for a child with special needs can sometimes just overwhelm you with stress. But I am the luckiest person in the world to be Karly and Ethan's mom. I thank God every day that I have such wonderful children. With Karly every little accomplishment is huge for her and we should slow down our lives just a bit to see how her life is truly a gift. I know from this day forward I will make an effort to live by the saying "To blessed to be stressed." It won't be easy but I am going to give it all I got.

Day at the doctor and dentist

Someone please tell me why I thought taking Karly to the dentist for a 7:45 am appointment was a good idea?

For some reason I thought taking her at 7:45 am would be great that way I could get in two appointments today without a problem. Great in theory but not great in reality, we were rushing out the door to get to the dentist. We made it with two minutes to spare (which in my crazy head is late.... I hate to be late for anything!) While rushing out the door I didn't think to take any of the paperwork that the dentist sent us and that I took my time filling out with every detail. Nope, forgot it! Since I knew we had to be at the next appointment by 9:15 am I flew threw the form (replacement form) and missed a ton of information. I felt so bad but I didn't want to hold up her appointment.

So we were called into the room and it was so cute. I have never been to a pediatric dentist office before. All the exam chairs were kid sized and it was so warm and welcoming. Not how I remember my dentist office. Anyway Karly was greeted by the nicest dental assistant. She explained everything and asked all kinds of questions. It was great. I was already blown away by the staff and the office. The dentist came in and he was very nice, very friendly. He examined her teeth and she just laid there with her mouth open. So calm and still!!! Not sure who took my child at this moment and replaced her with a calm one but she did it.

As a parent of a child that has many doctors appointment you get used to all kinds of doctors, the nice ones but don't really seem to care, the ones who are just cold and don't care, all kinds. By this point I am completely sold on this office and dentist, and then they blew me away........HE ACTUALLY DID RESEARCH ON HER CONDITION BEFORE WE CAME IN. The dentist!!!! Unbelievable! I can't get her pediatrician to do research on her condition but the dentist did! I was so impressed. In fact I am switching Ethan to them as well.

OK first appointment down, one to go. Her next appointment was at Hershey Medical Center with her geneticist, Dr. Ladda. He has always been my favorite doctor of Karly's. When she was diagnosed, he was the only one who gave us any hope. He was also the only one who had ever heard of WHS. I was really looking forward to this appointment. I love that we can ask him questions about any part of her health because is truly the main doctor for her diagnosis. Genetics!

We had no issues getting in, we got their on time (I mean 10 minutes early) and only waited for a few minutes which was nice so we could see some of the nurses who have cared for Karly in the past. As usual at Hershey, we saw a medical student first which we are used to and expect since it is a teaching hospital. He was very nice and listened to our list of questions. Then we got to meet with Dr. Ladda, the genetics counselor and the med. student. We probably spent 45 minutes to an hour with them. Just talking about how she is doing and what we see and our concerns. I LOVE IT!! I never say that about appointments but he is just so good. He came in and just says how normal she looks. To him she doesn't have the label that she has everywhere else. It is so refreshing. I think he has a soft spot for Miss Karly too, as most people do. As we left there I just feel refreshed too and ready to take on the world and issues that come along with her condition.