Seizures aren't funny

So, our sweet middle child, Blake, came home from school yesterday and was a little bit upset about something that happened during recess.  One of his classmates asked him what was wrong with his baby sister and Blake told him she had seizures.  Well, evidently, the little boy and some friends starting playing a ‘game’ where they would  hit each other and say, “Oops, sorry, that was a seizure”  This rankles (is that a word?) me.  Not because I think these little boys were making fun of Peyton or of Blake.  It just rankles (I like that word!!) me because I know the horror of seizures and so does Blake.  We have seen first-hand how they can devastate.  We hate them at our house and we fight them as hard as we can so I guess it’s hard to swallow when someone makes a game out of something that has been so awfully and personally in our faces for the past year. 

So, how do I handle this??  I called his teacher and left a message for her to call me.  She is a sweet and understanding lady, so I am certain she will help out in whatever way she can.  I think an awareness of how making fun of something you know nothing about can be so personally hurtful to others.  I honestly don’t believe these feisty little third grade boys had any inkling of how much this bothered Blake or maybe they did, but they ARE feisty little third graders so I can hardly be upset with them. 

I know that in my life I have been apathetic to things like seizure disorders, special needs, etc….but having Peyton has changed my entire perspective and if I could go back and exhibit a little more compassion and understanding, I would.  Now, don’t get me wrong, I was never mean to anyone with special needs or delays, but since it really didn’t affect me or mine I didn’t pay a lot of attention to it – this seems so selfish in retrospect. 

Being the sibling to a child with special needs is a unique role and I feel like our kids have handled it so well.  They are my little heroes on a daily basis and they love Peyton as unconditionally as Ed and I do.  They are both fortunate to have a great school and such great little friends that accept them and love them and love Peyton, too.  I worry a lot about what Peyton can’t do and how many hurtles she is going to face in her life, but when I see the lives she has touched, it makes me realize how much she already has done.  

Her circumstances are a daily education…..a very humbling education.  

Seizures and Smiles

What a couple of months it has been!!!!  Peyton had fewer seizures in February than she has had since all this started back in January of 2010.  She actually had two stretches that lasted seven days and then several 3 and 4 day stretches.  It was GREAT!!!  In spite of the hospitalization for dehydration, the temporary feeding tube, the tonsillitis, and all the other little bugs that attacked her immune system.  So we go to Chapel Hill the first of March and bragged on how great she was doing and her neurologist was very pleased with her progress and even agreed to start weaning one of the two seizure meds she is on (the Keppra, which we never felt really helped her).  We also saw a new dietitian that same day and she was great.  She spent a long time with us and we decided it was time to wean Peyton back on to Dairy (ketogenically, of course!!!)  We formed a plan and then headed home…….

The VERY NEXT DAY the seizures started up again and she had an awful week or two.  She had more seizures in one day during that time then she did the whole month of February.  Talk about discouraged!!!!  We think maybe we were trying to make too many changes at one time…the dairy introduction and the wean down of the Keppra, so we stopped the wean down of the Keppra and kept at the dairy.  She is now totally back on Dairy again which makes the diet a little tastier for her.  She gets heavy cream and butter or Velveeta cheese mixed in with all her baby foods.  We will attempt the wean of the Keppra in another week or two.  The seizures have slowed back down again and she is currently on day 4 without one, so we’ll take it!!!! 

In other news, she has been approved for Cap-C, which means she qualifies for a nursing aid that will come to our house for up to 11 hours a day, depending on the need.  We are thrilled.  The process has begun and Peyton’s first nursing aid has been great!!!  We have some really great people at the nursing agency working with us and they are very understanding of what a difficult transition this can be but so far so good!

Peyton SMILED for real!!!  About two Saturdays ago, Mackenzie was talking to her and entertaining her and I heard Mackenzie squeal, “MOMMY, COME HERE, SHE’S SMILING”  I walk over with not much hope that is really what’s going on since a lot of times, when Peyton is having a seizure, she appears to be smiling, but it’s just the seizure.  But low and behold, Mackenzie is right, Peyton is SMILING, real smiles.  It was so awesome.  I grabbed my phone and got two cute pics of it which I will post below.  Mackenzie cried and cried tears of joy.  It was a precious precious moment.

Currently, Peyton is battling daily fevers.  It’s the strangest thing.  She woke up last Saturday with a high fever of 104 and throwing up, but she quickly got better and only felt bad for the day and by that night, the fever was gone and her tummy was fine.  Every day since, she will wake up with a fever (anywhere from 100 – 102) and by 9:30 it’s gone.  We called the ped and they said it is probably the virus from last weekend slowing leaving her body.  We are hoping the fevers go away and don’t end up being something more serious. 

Happy Weekend to everyone!!!