Yeah I know it's been a long time....

OK so it's been awhile...We are still here. Everyone is doing fine. We survived the holidays with no major incidents. Although I was a nervous wreck on Christmas Eve; I did not want a repeat of last year. (Spent in the ER with seizures)

As for Miss Karly, well, she has really been growing. Growing physically and developmentally. She is really taking off. As of Monday, she weighs 34.8 lbs. She's very tall and skinny. She has grown 3 clothing sizes in the past year. I love it! She is now in girls size 4, no more toddler clothes.

Developmentally...well holy cow! She now has several words she uses, she signs "more" all the time, she is standing on her own for a brief periods of time, she is pushing herself independently in her wheelchair, she is walking all around using a walker... the list goes on. Her favorite word is "snack". Which is very fitting because the girls loves to eat. And my goodness the girl can eat, she would eat for hours if we let her.

We have signed her up for kindergarten. Yes, I know I can't believe it either. She turned 5 in November and is eligible for kindergarten in the fall. I am happy that she will have class 5 days a week. She currently only gets 3 days a week. We are still working out all the details of her transition but I am very excited for the next step for her.

One of the best things that Karly has started to do more of lately is that she actually plays with you. She loves to play with her brother. She follows him around and tries to do what he does. It cracks me up to watch the two of them play together. He is obsessed with sports and he has her throwing the ball to him as he is running different football plays in the living room. (I think he thinks he can get away with more if he involves her, and he loves her to pieces!) She has given high fives for awhile but now Ethan has taught her to give pounds. He is so proud that he taught her (as he should be!) Although you need to be prepared or she tends to punch you in the face if you aren't paying attention to her.

Well that's the quick and dirty version. I will try to be more regular with the blog posts!

Finally I blog...

Finally I blog… I know it’s been months. Unfortunately the reason I am home tonight with “nothing” to do is that Miss Karly had a seizure today at daycare. She is doing good. In fact she’s sitting in front of me while I type eating potato chips. Her seizure happened about 1:00 pm this afternoon. It was 10 minutes which is REALLY long for her, but she was in good hands surrounded by the best nurses. I got there to Pediatria right as the seizure was ending, I might have pushed the speed limit at bit. But I am only 3.7 miles away. They had her on an oxygen monitor and were checking all her vitals. Did I mention how much I love this place??? I called her neuro from there and the nurse at Pediatria talked to the doctor’s office for me and explained everything that happened. It was so nice to let someone else do the explaining. So the outcome is that we are up’ing her Keppra to 3.0 ml morning and night. I am hoping it was just a random seizure because she grew out of her old dose of Keppra since she’s getting to be so big.

Anyway since this crazy day occurred, our plans this evening had to change. The boys (meaning Jim and Ethan) continued with our plans to go the AA All-Star Game here in Harrisburg, while Karly and hold down the fort at home. I have already received about 20 messages that they are having a blast. They met some of the players from the AA Yankees team. Ethan was in heaven. I can’t wait to hear there stories tonight when they get home.

So to catch up on what’s been going on in Karly’s world…Well the best news is that she walked for over 20 minutes on Monday in her walker. AWESOME NEWS!!! She is doing great and walking so well supported and working her on unsupported too. Her new braces came in yesterday. She now has Sure Steps; she has only worn them for two days.

She is really growing and changing. She seems more and more like a toddler everyday. She is doing new things all the time. She now clearly says Momma and an occasional Dada and Brah (brother) too. She now points to whatever it is that she wants (and a lot of things she doesn’t want) but it is very clear that she points out want she wants. If she wants a drink during dinner, she will point to her cup and not eat another bite until she has a drink.

Life has been very crazy we don’t slow down much hence the not blogging for a few months. This coming weekend we are going to visit with our wonderful 4P- families. I am so excited to see them all again. (Although I was lucky to catch up with some this past weekend at a bridal shower) This time a new family is going with us to NJ. We met them a few weeks ago and they have an adorable little boy with 4P-. They are wonderful, we instantly clicked with them and I am so excited that they are coming along to meet the rest of the crew. We have such a great group of “local” parents. I can’t wait to see them on Saturday and introduce them to the new family.

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.