Friday, August 10, 2012

Six Months Seizure Free

Allie and the girls

It is hard to believe but today is the 6 month mark since we last saw a seizure.  It is strange because it simultaneously feels like it happened yesterday and like it never happened at all.  It seems like the seizures, the ACTH, and the quarantine were all part of some story that I heard about another kid.  We are so fortunate that we have the luxury of being removed from all of that.

Today was also Allie's last full day in her daycare class with her friends (shown above).  Starting next week, the kids will start working their way up to a full day in their new classroom with their new teachers.  Allie then has a week off and she officially starts in her new classroom the week after that. 

Jonathan and I had a meeting with her two new teachers today to fill them in on Allie's diagnosis, therapies, and seizure precautions.  I hope that we didn't scare them!  The general gist of what we wanted them to know is that we don't want Allie babied because she is disabled.  It's OK if she gets frustrated and it's OK if she falls and hurts herself trying to do something out side of her comfort zone.  She is never going to learn if she doesn't try.  Allie needs to figure out compensatory strategies for challenging situations and it is better if she figures these things our sooner rather than later.

We have recently implemented some routine changes to improve Allie's independence.  She is off of bottles completely, which have been replaced with sippy cups, straw cups, and regular cups that we scatter around our home so that she can get a drink by herself whenever she wants it.

She has a special Planet Box lunch box that she can open easily with one hand (shown below).  It is a really cool lunch box that was recommended on the hemiplegia listserv that I am on.  The idea is that Allie will start using this now so that she will have it mastered by the time kids actually start needing a lunch box.

Allie and I had an interesting experience this morning that may be an indication of conversations to come.  One of the daycare teachers brought her 9 year old granddaughter to daycare today and the girl wanted to know why Allie had pink tape all over her arm.  The teacher seemed a little embarrassed and said "that is just what she wears" and she told the girl to go do something else.  The girl looked ashamed that she had asked so I jumped in to explain that Allie's right hand is not as strong as her left and she wears this kinesio tape to help stretch her hand so that she can use it better.  The girl seemed perfectly content with the answer and she and Allie continued to play together.  I think it is perfectly natural to be curious about the tape (or anything else) but I'm worried that shaming kids for asking will make Allie seem "weird" instead of "different".  I hope that over the next couple years we can figure out how to explain Allie's cerebral palsy in a way that is factual and eliminate some of the inevitable stranger danger impulse.  

I have heard stories of moms who present to their kids' classes throughout the early elementary school years to give age appropriate explanations and demonstrations.  Sometimes they have hand challenges where they take a volunteer kid to demonstrate what it is like not to be able to use your hand as you would like to.  Other kids in the class are tasked with constraining the volunteer's hand into a fist and then the volunteer is asked to try to open his hand.  Hopefully this gives a memorable example of not being able to fully control your hand. 

Jonathan and I are currently trying to find the best way to explain to strangers why Allie isn't walking.  I usually just blurt out that Allie had a stroke before she was born and has cerebral palsy from it.  Jonathan thinks this is way too much information to give the cashier at the grocery store or the other mom at the park.  He may be right but I haven't figured out how best to respond yet.  I'm sure we will converge on some standard response soon, hopefully in time to teach it to Allie.

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