Thursday, February 25, 2010

"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.

Monday, February 15, 2010

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.

Thursday, February 11, 2010

Photo diary of our snowed in day!

Good Morning...Ethan and Karly 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 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!

Monday, February 8, 2010

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!

Friday, February 5, 2010

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.

Monday, February 1, 2010

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.