Just What is Cerebral Palsy?

I'm writing this post because I think a lot of my family and friends have no idea what to say or how to act around Hailey. I think a lot of you are unsure just what Cerebral Palsy is, and that makes you nervous or hesitant to ask about her. You don't know what to say so instead you say nothing or you are afraid you may ask something that you shouldn't ask. Maybe some of you are afraid to share with us your child's accomplishments in fear that we would feel bad that Hailey has not reached the expected milestones. Don't be afraid. We have totally accepted Hailey's disability and we are also very proud of her and her accomplishments. Cerebral Palsy is a result of an episode that causes lack of oxygen to the brain. In short it means that the brain doesn't send the right message to the muscles. There are four different kinds of C.P. Spastic, Athetoid, Ataxic and Mixed. Hailey has Athetoid C.P (Involuntary and uncontrolled movement). C.P. is also not curable and also not contagious. Some children with C.P. may not be able to walk, talk, eat or play the same way that other children do. But, in so many ways Hailey is just like other little girls her age. Hailey likes to eat cookies and ice-cream, she likes to swing on the swings in the park and she loves to go down the slide (all by herself I might add) with someone at the top to lie her down and someone at the bottom to catch her of course. She loves watching The Mickey Mouse Club House and doing the hot dog dance. She loves to be read to and she loves to learn. She loves music and swimming, she understands exactly what you are saying to her, even if she can not respond with words. She is learning sign language and other ways to communicate with us. She has feelings just like any other able bodied child. Talk to her the same way that you would talk to them, treat her the same way that you would treat them, and most of all, love her the same way that you would love them. I guarantee she will bring joy and love to your heart the same way that they do, the same way that she has filled our hearts with joy and love.

Hailey Crawled Yay!

It's a beautiful day in the neighborhood, a beautiful day in the neighborhood....Oh I'm sorry, was I singing? You bet I am so happy today, unlike yesterday when I was about to take Hailey for swimming and found out that it was closed because of Evacuation Day. I was very disappointed because swimming is a very important therapy for her and I really hate to miss it. Anyway, later that night Natalie informed me that Hailey had crawled on her hands in knees all the way from the living room into kitchen!!! Yeah Hailey! My only regret is that I wasn't there to see it. That's o.k I know that if she did it once, she will do it again especially if this means that she can crawl into the pantry and get her own cookie.
Soon after I got the news about Hailey my bossed called me, of course I was still beaming with excitement. I told him the good news and he said "that's because I was wearing the green ribbon" Obviously that is not the reason why Hailey had crawled but there is something to be said about the love and support that people can give to someone like Hailey, If we are all standing by her side cheering her on and encouraging her every step of the way (or in this case, crawl behind her....whatever it takes) what a tremendous force that would be. So I would like to thank all of my co-workers, family and friends who are sporting their green ribbons in support of Hailey and other children with Cerebral Palsy and remind everyone that Saturday is Cerebral Palsy Awareness Day. If everyone tells just one person that they know Hailey and she is someone with C.P but she is "NOT INVISIBLE SHE IS BEAUTIFUL" I would really, really appreciate that.

Conductive Education

As many of my friends already know, my family and I have been seriously looking into an alternative therapy for Hailey. Unfortunately we have decided to wait until next summer. Although I believe we should begin this therapy as soon as possible. Hailey just has too much going on this year. She will begin school in June (a tremendous transition for her from her current Early Intervention Program) and we are now beginning to train on a communication device for Hailey (A blog for another week) Conductive education is an intensive, multi-disciplinary approach to education, training and development for individuals with cerebral palsy. It is generally a five week program and it is not covered by insurance. We have enough savings for the first session but eventually we may need to look into having some kind of fund raiser for repeated therapies as it usually takes more than one session. Because there isn't a facility in Boston we had to look out of state for this and we have looked into three different locations. (For my fellow blogger parents of children with CP and spina bifida) I believe that this therapy may be one of the determining factors of whether or not Hailey walks. If she doesn't walk that's o.k. but we as a family have to know that we have exhausted all avenues. The first facility that we looked into was located in Winter Park Florida. I thought this would not be bad, I actually have a home in Florida and the kids would have somewhere to stay for 5 weeks, great that would save some money on expenses. After researching the next two facilities the one in Florida began to look a bit inferier. So we looked into one in Pincton Ontario. Although this was the most expensive of the three, somewhere in the ballpark of $9000.00 for the five week program that they recommended. I actually liked this one alot and you can actually live there in the facility for 5 weeks. Not too bad. This one to me looked pretty darn good. Then we looked at the one in Grand Rapids Michigan, this was half the price and seemed to have a program equivilant to the one in Canada. If you go to their facility you can also stay at the Ronald Macdonald House and a shuttle will bring you back and forth to the CE facility. In our opinion This is the one that looked to be the best program for Hailey. We now have a year to continue to explore and raise money before we make a definitive decision. In The mean time we will start to take our cue from Conductive Education Therapy and attempt to make some of the furniture that they use in their programs. If any one has any information on CE please post a comment. Also, March is Cerebral Palsy Awareness Month and I hope that all of my family and friends will be wearing green ribbons to show your support and love for Hailey and other children with her same disability. If you need to know where to get one I hope to be putting a list of locations up on my blog as well as on facebook in the next few days. if anyone who knows of a business that would let me put a jar of ribbons on their counter please let me know. Thanks, looking forward to hearing from you all soon. :o)