Wednesday, March 16, 2011
Well Miss Karly first...since the blog is named after her...she has blossomed in to such a little person lately. She is into EVERYTHING. I know I have said that before but it has taken on a whole new meaning. In her new wheelchair she can reach just about anything she wants, nothing is safe from her. She is in control when she is in her wheelchair. She LOVES to run into people; we don't love it as much as she does. She has even received a "time out" at school for trying to run over the little kids.
Her vocabulary has taken off, big time. Tonight at Target she felt the need to let everyone know that KJ was her's. (KJ is my best friend and Karly refers to her as "My KJ"~ just a bit possessive). She also said "bye" to just about everyone she saw. Now remember this is my daughter who is non-verbal according to the doctors. Trust me, she is verbal. Another favorite of her's is brother, it's not always a very clear brother but we all know who she is talking about for sure. She loves her big brother to death.
She has learned to shake her head no and does it a lot. You ask her any question and it is an immediate shake of the head no. Especially if her hair down because she likes to feel it fling back and forth on her face.
Her OT has had to come up with all completely new goals because the ones that she had been working on for about 7 months she all of sudden can do them with out any hesitation. She has mastered most of her PT goals and speech is coming along too.
Her weight continues to slowly increase. She has been hanging around 34-35 lbs. Depends on what she ate for dinner Sunday night (she gets weighed every Monday morning.) She is growing tall like a weed though. She is now in a solid children's size 5. We are out of toddler clothes. It's so crazy how she doesn't grow for so long and now every time I try to put an outfit on her it's too small. I am not complaining about it, in fact I love it!
As for the rest of the family... Ethan is doing wonderful as always. He just finished up travel basketball. They had a great season but I think the whole family is happy to be done with it (except Karly who LOVES to watch basketball...hours and hours of it). Baseball is starting to gear up for Ethan and soccer will follow in the next few weeks. Doesn't ever end, that's ok though Ethan loves his sports. He turns 10 in a few weeks. I can not believe he's going to be 10!!! Of course he is super excited for his birthday. He's got his birthday wish list started.
Jim is busy with tax season. He is either at work or at home having dinner before heading back to work. :( Only a few more weeks, thank goodness. Me? well... I have made some major changes in my career. I have accepted a position with my company's sister company and I will now be working out of my home and doing some travel. (about a 2 hour radius, not too bad) I am very excited, nervous and a little freaked out by the change but I know it's the right thing for me and for the family. I will miss my friends at the office, I have been there 9 years and have some really great friends there. But they will be my friends no matter where my office is. Step one of this new opportunity is a week long trip to Des Moines, Iowa. I leave this Sunday and I am looking forward to it. Of course I will miss the kids and Jim, however the thought of a lot of "me" time is exciting.
When I get home on Friday, Jim and I and our best friends are leaving for a weekend in the Finger Lakes in NY. (I will wake up in Iowa, Fly to Detroit, Fly to PA and then drive to NY...Yes I am insane.) I am really looking forward to this weekend. We are going to visit wineries all day Saturday and just have a great time. But I will miss my local WHS families that are getting together that weekend :( Next time guys!
Ok so now you are updated on all four of our lives...Hope everyone is well.
Wednesday, February 16, 2011
(Hershey, PA~Home of the 2014 4P- Support Group National Conference!!! )
Family Time at PENN STATE!2010 Halloween (Ethan was Drew Brees and Karly was a fairy!)
Karly hanging out (in matching outfits) with her BFF Ashley.
Karly with her 2nd Mom, Miss KJ. Picking pumpkins in the fall.
Karly taking a ride on Daddy's shoulders at Shippensburg's Homecoming.
Mom and the kids tailgaiting before kickoff at SHIP's Homecoming. It was a lot of fun to take the kids on campus and show them around. Karly and her loving big brother at the corn maze. He is so good with her. Christmas Morning! No need to say anymore. Beach Trip 2010. Our little fish...she LOVES the water. One of the things she does best...watching Ethan play sports.
Wednesday, January 19, 2011
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!
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...