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.

"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.

Photo diary of our snowed in day!

Good Morning...Ethan and Karly snuggling...no school today.
Time for breakfast... Karly shows off her new skills...feeding herself and...Holding her own cup!!!What else is there to do when snowed in....we baked cookies...well Ethan and I did...Karly cleaned out the cabinets for us...Lunch time...look at me holding a fork...now if I'd only use it to eat Mommy's big helper, well not so much help but she looks so cute tearing out all the laundry I was trying to fold.

Hopefully we won't be snowed in for too much longer...the kids are getting major cabin fever!

Don't mess with WHS mamas (and Dads too)!

This past weekend a mom of a WHS kid stumbled upon a video that was posted on YouTube by Capstone College of Nursing at the Univ. of Alabama. This video was intended to be an educational video created by students about genetic disorders. They used a sleepover story telling scene and described our children with WHS as creatures that were cursed by a witch causing all these horrible physical features. Just typing that doesn't even get close to how horrible this video was. I say "was" because within the first hour so many of us WHS parents complained that it was removed. Thank goodness. All I could imagine is a newly diagnosed parent searching the Internet and finding this horrible video.

What the creators of this video didn't realize is that the WHS parents are a tight group. We talk though Facebook, blogs, a Listserv, etc. We have rallied together and got the video removed and also have flooded the Dean of the College's office with calls today.

I was horrified by this video that I too called the Dean's office. I was pleasantly surprised that I received a return call from the Dean herself. I spoke to her for several minutes and she personally apologized and promised that this matter would be handled promptly.

As much as a was VERY upset about the video, I was very happy to have the ear of the Dean to express my feelings and explain how hurt we were as parents that nursing students could view children this way. These are the same people that we trust our children with for care.

What this whole experience has shown me is that we have an absolutely wonderful group of parents and we will fight for our children. Our kids are kids too, they may have a diagnosis but they are kids too. All of them adorable, beautiful children. I hope the students of this class and their faculty learn a life lesson from this situation. I know they will never post an offensive video about our children again. I plan to send a thank you note to the dean thanking her for her prompt response and true understanding of the situation. Along with that a picture of my princess to show the class how she is not a "creature" as depicted in the video but a regular kid. (Very cute regular kid!)

WHS parents, You guys are awesome and I'm so proud of each and everyone of us for fighting for our kids. Love ya all!

The best of friends!

There are lots of people who are in my life everyday. Some of them try understand what having a special needs kid is all about but don't really understand, some of them pretend that I don't have one and then there are my friends who absolutely get it and get how it affects me. I have my friends who have other kids with WHS and of course they understand and I love them for it. But the ones who are extra special are the ones who don't have special needs kids and still get it. They are the ones who let me vent, not really about anything in particular but they just listen. They do the little things for me that mean so much and they probably have no clue much they mean. (Until they read this) Today more than anything I needed some quiet time to do NOTHING!! I get it about once a year and sometimes just really need it. One of these special friends gave me that and it's the best gift. Of course because I'm a crazy nut, I spent half an hour on the sofa and then starting cleaning the basement. But that short amount of down time is sometimes all I need to get all my stress in check and continue with the day. Some days I want to run for the hills screaming and other days I can take it like the best of them. Today I was on the verge of running :)

I just wanted to take this post to says thanks to those extra special friends. You guys know who you are and I LOVE YOU ALL! Thank you for all that you do for me and for Karly.

Miss Personality!

Wow Miss Karly is showing off her personality. She is such a ham! Every place we went this weekend that girl was getting everyone's attention. Friday night at dinner she had the attention of the restaurant owner as she usually does. He loves Karly. She gets special treatment and lollipops from him.

Saturday and Sunday at Ethan's games she was so funny. She was screeching and clapping to get everyone's attention. She was all smiles and she was sporting her brand new hot pink Converse high tops. It was so cute to see her interaction with people.


She seems to be adjusting well to her new medicine. No reactions so far!!! Although her appetite is insane. That girl can put down so much food. She ate more this weekend then I've ever seen before. I wonder if her new meds have an effect on this. Her Topamax is supposed to be an appetite suppressent so if the Keppra increases her appetite and she goes off Topamax, look out the girl is going to eat us out of house and home.

Today was a good day...

Every morning Karly and I rush off usually 5 minutes late, which drives me crazy. I usually run in and drop her off and rush back out the door. The nurses always ask... anything new today with Karly. My typical answer is nope and head out.

Today was different because today she started a new seizure medicine and it has me stressed out. Not because of the drug itself but Karly has had many reactions to different seizure medicines and none of them have been good. So this morning they asked the usual question and I went into to detail about the new drug and my concerns. They (her nurses) are so awesome, they listened to everything I said and wrote down all the information.

This is why I LOVE Pediatria. She goes here Monday through Friday and is cared for by the most loving nurses and aides. I could not ask for any more. This afternoon when I picked her up they gave me a full report on how every hour they did a full check for any new rashes, they closely monitored her food and drink intake for the day and just overall gave her a little extra attention today. They new I was concerned and took my concerns are seriously as I would.
Best part...nothing happened...no rashes, no mood changes, no nothing.

So that was a good part of my day but the best part is that I got a call today from her health insurance and they re-evaluated her attendance at Pediatria (http://www.pediatriakids.com/) and they approved her attendance for the next year!!!! This is so awesome because I fought for months to get her in last year and this year was so simple.

ALSO... Today I received a call from the Make A Wish Foundation and they are starting the process to see if Karly qualifies for a wish. So exciting!

Karly's Neuro Appt

Karly and Izzy at the WHS gathering

Karly visited the neurologist on Friday and had a good visit. We spent quite a long time with the doctor and reviewed her medicine and her seizures. We as a group we have decided to change her seizure medicine to Keppra and take her off Topamax. It will take 10 weeks until she if fully changed for one medication to the other. Many of the WHS kids are on Keppra and seem to do really well on it. We are all hoping that this will reduce the number of breakthrough seizures that she has. Cross your fingers because I can't take anymore seizures...too many lately.

Yesterday Karly, Daddy, and Ethan went to friends of ours to visit with other WHS families. They had a great time catching up with other families and sharing stories. Karly and Ethan had a great time. It is so wonderful that we are fortunate that WHS families nearby. It so awesome to be able to share stories and see the others kids. Unfortunately my kids shared their sickness with me and I had to miss the party which made me very sad. Hopefully next time, sounds like we will get together in the spring.

Welcome...

So after months of not posting on Karly's website...I have decided to try to blog. So here goes...Karly's World is appropriate name for this blog because most days it's her world and we just live in it. Karly is our 4 year beautiful, crazy curly blonde hair little girl. She is such a joy and she loves life. At the age of one she was diagnosed with Wolf-Hirschhorn Syndrome (WHS or 4P-). It is an extremely rare chromosome disorder, the quick and dirty is that she is missing a piece of her fourth chromosome. This causes different things in different kiddos, for Karly she is mentally and physically delayed. She is very small for her age but big for a WHS kid. She does not walk or talk yet but she has learned to pull to stand by herself (Woo Hoo!). Unfortunately she does have seizures (they stink!) as a lot of kids with WHS do. Lately they have been increasing and getting on my nerves. Overall health wise she is pretty healthy, no major issues other than the seizures.

She attends the intermediate-unit pre-school 3 days a week for half a day. She has a great group of teachers there. She also attends a medical daycare during the week while we work. It is a WONDERFUL place for her, she many great friends there with all types of disabilities. She is cared for by nurses all day and it is such a stress relief for me as her mom to know she has the care she needs. One of her favorite activities is to rides horses...yep, that's right...she rides horses. She takes riding lessons at a place called Capital Area Therapeutic Riding Association (CATRA). They specialize in riding for special needs kids. They are great.

Karly is very lucky to have a great big brother Ethan. He is 8 years old and involved in everything. As a family we are on the run a lot for his sporting events. Karly tags along to all of them as well. She has become quite the little cheerleader for her brother. He is such a great brother; he is the first to help her with anything she needs and is always looking out for her. Overall just a great kid!

Well first blog done...let's see if I can keep this going. I look forward to keeping you all updated with her appointments and new achievements.