I felt like I needed to thank you all.You may never know what a help you've been by just by replying to some simple questions.I posted a couple of times about not realy knowing what Kathleen is going through on a daily basis.You've all been so helpful with not only your replies to this but even just the "chatter" about the little things that you experience.I've been able to print up a list of some things you've all mentioned, for school.Everyone has a copy who works with Kathleen.This is a very enlightening thing for everyone I think,and will help us to not fustrate her and maybe come up with a plan for when she's not having a "good" day.I NEVER want this to be misjudged as a behavior problem for Kathleen ,because she's the most agreeable child I've ever met,given what's asked of her throughout her day.She is unable to verbalise what she's feeling.She even tends to say just say"I'm fine" but you can tell by her deameaner she's not.I think she's so used to all that goes along with this disease that it's all "normal" to her so in her mind she's"fine".I jsut read the thread about balance and will be adding this to the list of things to be aware of if she seems a little "off".Kathleen's day is so busy! She wakes up at about 6:30,get's to school for 8:45 a couple days for PT 9:00 other days, she has 3 PT's,4 OT's and 5 speech every week.2hours of special ed everyday,gym 3 times a week(art music and library other days),she has to travel around the school to get to all of these extra's too.Her only break is lunch for 40 minutes.Oh yeah don't let me forget that this year is her tri-annual review and she will be tested in every area.(some days we go in for testing at 8:30 so we can catch her fresh and ready)I pick her up at about 3:00(earlier if she's really tired),Then it's a litttle time to play before homework,spelling words,a little reading time,dinner and bath, oh yeah and 30 minutes of electrical stim on her left hand.All hopefully before 6:30 which is an ideal bedtime so she can get the well needed 12 hrs of sleep to get up and do it all over again.(and I almost forgot catheterization every 3 hrs). And can you believe she's always smiling, and ready to learn something new.She takes great pride in all that she can do ON HER OWN! Sorry this got so long but I just want you all to know how much it means to me(with your help!) to be able to pave the way for her to be treated with care and respect given all that we are learning about this disease and what it still can mean even 3 yrs after diagnosis,I think we sometimes forget that this is with ehr for life ( I try to forget anyway...).THANK YOU!!!! And please keep up the "chatter" I read everything I just don't always get time to reply but everyone is always in my thought's and prayers, who ever said you can't choose your family????
Mary Grace