Wednesday, July 14, 2010
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.
Friday, May 21, 2010
Riding rides at Seaworld.
Thursday, April 1, 2010
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!!!!!
Monday, March 22, 2010
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!
Ethan met this favorite Hershey Bears player last night. Autograph and all...
Saturday, March 13, 2010
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
Thursday, March 11, 2010
Thursday, February 25, 2010
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.
Monday, February 15, 2010
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.
Thursday, February 11, 2010
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.
Monday, February 8, 2010
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!
Friday, February 5, 2010
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.
Monday, February 1, 2010
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.
Wednesday, January 27, 2010
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!
Sunday, January 24, 2010
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.
Thursday, January 21, 2010
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.