Wednesday, January 27, 2010

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 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 ( 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

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.

Thursday, January 21, 2010


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.