Sunday, June 10, 2012

Spaghetti Dinner Interruption

It seemed like forever ago that Eva had her last seizure but this is where it all started, about five weeks ago and I am hoping that this syndrome is finally coming to an end.    She was diagnosed with Gianotti Crosti Syndrome.  I has been the evilest step-sister of Hand, Mouth, & Foot disease.  First came the seizure, then the horrible bumps in curious places of her body, followed by her snake-like skin peeling from her feet and hands and now her finger nails are falling off.  They are starting to break, then crack by the white area on her nails.  After they fall off, you can see the new nail that is more of a stub that is growing and only half the size that it should be.  So far, she has lost four nails.  Today, she was a little fussier than normal and so I decided to put her down to a well needed nap.  When she woke up, she was crying, like a pain cry, not a "mom, I am up, thirsty, and want to get out of here" cry.  So when I walked into her room, she has spots of blood on her cheek, mouth, chin, arms, left foot, left hand and various areas on her bedding.  I looked at her hands and on her left hand the thumb nail had a lot of blood around its perimeter.  I could tell she did not want me touching it or any attention given to help it.  It hurt. As a parent of a child that is far to young to understand really anything, it is so frustrating to not be able to help when it is so desperately needed.  So throughout the late afternoon, she was attached to my hip. She was clinging.  She was a little fussy.  She was irritable if I put her down. And as that parent, I was ok with that.
So dinner came and spaghetti was the gourmet meal of choice (which actually was pretty good). I decided to feed her just in case the acid from the tomatoes would bother her thumb.  While I was feeding her the spaghetti, I was enjoying a fresh artichoke and all of a sudden, out of nowhere, she starts the pain cry again.  Thankfully Scott was home and we realized she had hit her thumb and it started bleeding again, during our red-sauce spaghetti dinner.  He took the initiative to just get rid of this nail that was at least 95% off anyway, and, that 5% still attached, was painful, not just for her, but for all of us.  Oh my goodness did she cry.  After about 3 minutes, I got up, cleaned off her tray and handed her a Dora book.  Around Eva, Dora is as good as ice cream is to me.  The pain was over, at least tonight, until the next nail disappears again.
But as I reflect back through today, knowing that what I thought it was going to be and what it became, this is why I must be with her.  I know that we will have days that I will be expecting ab&c to happen and instead we accomplished either xy&z or just absolutely nothing.  I know that we as parents assume that our child or children will be able to grow and become independent without our assistance and then eventually with time, that role is reversed.  But with our precious Eva, what will her future hold?

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