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.
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.
I still always checked in with your site thinking you'd post someday. It is tough with working fulltime and keeping up with our kiddos lives. I don't post as often as I'd like. I'd love to do more with it and have ideas for lots of posts but no time to do it.
ReplyDeleteSorry you were sick yesterday. It was good to see the rest of your family and Karly really took to my Jim. I wish Haley would do more of that. Ethan and Nat and Tyler had a good time together. Ethan told me before they left that Karly had a bad Christmas Eve. He is a good kid and great brother Jenn.
I love your description that it is Karly's world and you just live in it most days. So true!!!
A blog is easier to follow. :) Hope to read more of your posts. Karly is one gorgeous girl!
ReplyDeleteHi, my name is Kristy and I found your blog through Norrah's. My son Dylan also has WHS and I always like connecting with other families. Karly is beautiful.
ReplyDelete