Archives for the month of: November, 2009

Grace hardly ever cries.  When she does she’s fallen in a way that has scared her – or hurt her.  I can’t even tell you how many times she falls in a day…and she cries far from every day.  Every now and then it’s a seizure that scares her – when this happens I hope she hears us telling her we are with her – that she’ll be ok – that we will see her through this.  Tonight she started to cry as Kevin was leaving for church and we both stopped.  Stopped to see what was wrong and do what we could to fix it.  Grace is tough, has phenomenal patience, goes along with the flow, tries to play through her seizures – Grace crying..that makes us stop in our tracks.

On a happier note I had a thought the other morning.  Grace was walking around in pajamas she wore last year  – and I thought to myself…” those pajamas didn’t used to walk around that way”…. walking pajamas…something to be thankful for this year for sure!

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Kevin and I waited almost an hour yesterday to see Grace’s pediatrician.  We sat in a room in the back of the clinic and we listened to the noises of the clinic.  The coughing, the crying, the hushing, the blood poke ladies…and every now and then the voice of Grace’s pediatrician.  We’d requested this meeting to talk about Grace’s potential upcoming surgery.  We wanted to talk to him.  He might think of questions we could ask that we wouldn’t know to ask.  We wanted to know what concerned him about taking care of Grace once we were back home.

He apologized multiple times as we talked to him about how long we’d waited.  Other parents had questions…”not these kind of questions” he stated.. but questions he had to answer.  We understood.

We did quick updates….liver…speech therapy…..depth perception….

Then we moved into a discussion about the surgery… that we can’t say that Grace’s life isn’t affected by seizures – they do disrupt her life – and so we are meeting with a neurosurgeon to find out more.  That we want to know what he thinks we should ask…that we want to know what he wants to know as her pediatrician…..

What he said was that this was out of his range..he’s had no other kids he’s seen that have faced this…(talked to no other parents about this kind of thing.)  “But if she was my daughter these are things that I would ask….”  and he listed off so many great questions and I frantically wrote them all down.

I only cried two tears as we went through this conversation.  But after I left there I’ve thought about the other times that he and I have been in a room talking about Grace.  There was the time (when Grace was still “ok”) when he told me that I needed to supplement her feedings with formula because she wasn’t gaining weight.  That day I’d cried a fountain.  There was the day that Kevin and I had told him (shortly after Grace was diagnosed) that we knew that we would need a lot from him- and was he willing to keep us on?… was he willing to be Grace’s doctor?  He said yes.  There have been numerous discussions with me… hair matted, sleep deprived, having spent a non-restful night in a hospital room beside Grace.  Some where I am sure I asked really redundant questions because my brain was so tired.  There was the time when he pulled up a chair and said….so what do you need from me?  The time when he said….if she doesn’t walk we can get you a wheelchair for her…you have to take care of yourself so you can take care of her…the time when he said how much he’d learned from Grace….the time when he’d said that the bruises on her legs were fantastic to see (because now she was moving around)….the time when some other doctor had told me that she was fragile…and it bothered me – and although it had nothing to do with the reason we were there I told him that it bothered me and he told me that Grace wasn’t fragile – she was sensitive.  And when I asked him if that was actually better he told me that yes it was – because Grace would tell us if we watch her closely exactly whether something was working or not.  He is willing to follow Grace’s lead.  Willing to keep the list of Keto ok meds at ready access.  Friendly when I call him on a Sunday afternoon that he’s on call because Grace has developed a rash…and although I’ve already looked at the pictures on the web and don’t believe that its the crazy dangerous rash that is a possible side effect of one of her meds…. I just want someone besides me to know.  He has done all of that and more.

And this day he said…..  “ I really think of you all often and I really want the absolute best for Grace.”

I have no doubt that this is true.

Kevin and I just returned from Jamaica – talk about your extended respite!  Grace stayed in Jesup with my Mom and Dad.  What an incredible gift the two of them have given us.   My mom had to do hair and put on shoes and braces before she left for work, my dad counted pills and kept the schedule to make sure that Grace had all she needed.  (This to do list is oversimplified of course).  My brother helped, my sister-in-law, her sister, their mother, my sister skyped in to see Grace.  My eyes water up with tears of gratitude when I think about it.  Not every little girl with a rare form of epilepsy is as lucky as Grace.  Not all have that much love and hope around them.   Not all have parents who get a break.

We are back now – we began again with feedings and medication, with writing down seizures and putting on the helmet even though Grace isn’t particularly thrilled with it.    But we are doing it now having had the chance to relax and take a time out.    Grace seems content to have us home -she’s back to school, back at therapy, has doctor’s appointments to go to ..and she’s having a good week.

Thank you to my family from all of us.   Joy, Kevin, Grace and Hoover