Archives for the month of: April, 2012

We survived our whirlwind weekend – Grace danced beautifully in her recital.  Although she had a rough seizure right as they warmed up, blessedly during the real deal she danced!  I watched Jacque, Jill, and Chloe as they reacted to the seizure – watching it from the outside I saw their attention to her, and their willingness to stop right where they were, their concern, gentleness, and acceptance of Grace – and when I joined them – I heard their resolve that no seizure would stop them- they are definitely scarf people.  I sing their praises whenever I get a chance.

After the recital we headed to Minnesota – ready to address with the epileptologist a major overhaul of Grace.  We’ve accepted it needs to happen, the seizures are interfering too often.  Her EEG showed the background noise that keeps her from organizing herself (being able to focus, having energy) is present – and plentiful.  In order to address the noise we are making a series of changes in increments.  The only thing we are taking away is the ketogenic diet.  I am more afraid of taking away then I am of adding on.  We’ve been on the keto diet for almost five years.  We don’t know to what extent the diet is protecting her from seizure activity.  The diet is how I’ve kept her fed, how I’ve assured she’s grown strong, it’s been a constant that we could control.  With the diet we’ve been able to control everything that touches her.

There are good things – going off the diet we will have more flexibility, she will have more experiences.  But i just keep thinking that we will be left with only one thing we can control-medicine.  I know its not possible to have control….but I want it sometimes…. I’m only human 🙂

Speaking of medicines – Kevin and I get to choose between two old seizure medicines.  (Old – like introduced in 1912 …..)  Not too friendly to the body – but effective.  We are doing our research.

The goal of the epileptologist….that Grace’s brain be less noisy.  We will know that it is when she begins to make more noise.  Now, noise from Grace is reserved for those things she objects to…how cool would it be if there were noises also for what she likes!  He set a year time frame for the goal.   As he left he said that he hadn’t lost hope – we haven’t either.

Graham did not suffer the whirlwind – after enjoying the recital – he found himself completely spoiled by his grandma and grandpa.  Thank you to my mom and dad for this wonderful gift!

Joy

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Your sister has a lot of needs you don’t.  You probably don’t know it now- but you’ll find out soon enough!  I’m afraid you’ll find it more of a burden then a perk – so I’m determined to record some of the perks along the way.

 

  1. When you need the pediatrician I get right through on the phone.
  2. You get to flirt with the most wonderful ballerinas.

 

I love you!  

Mom

I get asked this question a lot.    Here’s my answer……I think Grace is doing really well with Graham.  She watches him carefully at times.  At other times, she totally ignores him.  I think that’s ok.  As he gets older he’ll be harder to ignore.  There have been moments when she has reached out to touch him – and that gesture is truly amazing to see.

She is of course not aware of her actions when interacting with him.  He and I were sitting on the floor with her last week – she had beads she was playing with in one hand and bells in the other hand.  I had judged the beads to be the greatest threat to Graham…I was wrong.  (She got him in the head with the bell).

I’ve seen her watching me with him – and I wonder what she is thinking.

Grace’s life in a lot of ways has stayed the same – school, nurses, therapy, Sunday school, ballet, and pretty soon…..baseball!  Kevin and I continue to monitor her seizures.  When we go up to the doctor in a few weeks we’ll be talking to them about how we wish she were having less seizures.  At this time we think they are disrupting her life more than they have before.   She’ll have us all to herself that day.  She has her ballet recital on a Sunday afternoon – from there we’ll leave to head to Minnesota.  We’ll be back Monday night so she can be in school on Tuesday….a whirlwind trip to make some decisions.

She had a pretty big seizure today at ballet.  Big enough so that she had to sit out for a few minutes – I hated that she missed out….but they did their dance again so she could join them.  You could just see how much she enjoyed it as they danced their way through – thank goodness for a second try!  Thank goodness for her toughness- she never ceases to amaze me.