Archives for the month of: January, 2010

Grace’s surgery has been delayed.  Our new date is Feb. 12.  Last week Grace was in the hospital for a few days because she had high fever that led to seizures we needed help to control. (The hospital can give Grace meds through an IV to stop the seizures). They did several tests, but weren’t able to find any reason for the fever.  We kept her on ibuprofen several days straight and she was put on antibiotics- all to get her through.  Because of this, the neurosurgeon wants to delay the surgery so Grace can regain all her strength.  This also means two trips to the pediatrician in the next two weeks for monitoring!

It is both a relief and a burden to have the surgery date changed.  We were on the 10 day count down.  All our obligations at work had been shifted, we knew we were only going to be tossing and turning in our sleep a little while longer.  But now, now the clock is reset, but the anxiety level has already risen…. the house has been made ready…..but now we’ll be here another week…we’ll have to get all ready again.  Now though, we have more time.  We have two weekends to rest up.  Grace will have a few more therapy sessions to help build her strength.  I can say more prayers.

This is a picture of Grace and Hoover last week, the day after she was home.  She found her way to Hoover – and he snuggled right in!

Joy

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Kevin and I have put things in motion for Grace to have brain surgery to remove 2/3 of her corpus callosum (WebMD has a good article on the corpus callosotomy).  I have found myself explaining the procedure to friends and family a few times in the last few days.   It all seems so strange that something that sounds so simple (as far as brain surgery goes) requires a full day’s work of a neurosurgeon, a special operating suite, and only the projected four days in the hospital after the surgery for recovery- and equally strange that Grace is going to be anywhere near that kind of environment.

 

Simple is the wrong word, but I don’t know what other word to use.

 

The hair gets to stay.  When we talked to the neurosurgeon we figured that we would have to cut if not shave Grace’s head, but she gets to keep it all.  The surgeon said she has beautiful hair and there was no need to cut it.

The surgery is scheduled for Feb. 4.  I think Kevin and I are handling it pretty well.  We both have it in the back of our minds though – all the time – and that is exhausting.

In the meantime we are trying to have “normal”.  We took Grace to see her first movie last weekend – The Princess and the Frog.  She watched the movie…moving a lot throughout…but she never went to sleep!  Yesterday was her first day of private speech therapy.  She has school.  We see an ophthalmologist on Friday to investigate further if Grace is having trouble with depth perception.  And we are back in Sunday School after the Christmas break.  It’s an hour earlier now – and Grace isn’t a real go-getter first thing in the morning.  She’d rather just snuggle and take it easy.

So, that’s where we are at.

Joy