Eva is now Two!

  On Friday, it was officially Eva's Birthday.  Our little Peanut is getting "old".  We celebrated by going out to eat to our local Mexican restaurant.  It was very comfortable and entertaining with ten of us there. On Saturday we had her birthday party.  I had invited family, a few friends, and her therapists.  When the therapists came in the door, she was a bit confused, happy, and overwhelmed.  Needless to say, she is Eva and didn't seem to enjoy all of the company.  Or the cake.  Or the presents.  She was tired and went to sleep.  Because sometimes, it is not about the presents or the cake, the freinds and family that were here, it is about Eva and how she will set the tone for her events.  Thinking back two years ago, when she was just four pounds.  She taught me how to become more delicate when handling special goods.  She also expects me to be very, very patient. Now that my two year old is growing, mentally and pyhsically, she is starting to have that "I don't want that" attitude.  I am hoping that this phase will not last long. 


Collest gift! Baby sized gerbil tunnel w/tent

On an exciting note, her walking ability is progressing. She is taking about twelve steps before she falls forward and desides that crawling is still the best option.  She has what I call her "security finger" grasps to anyone who is willing to walk with her anywhere and everywhere.  I feel that she does not have her 100% confidence to walk on her own.  I know for a fact that one day she will obtain and succeed.

More Successful Therapy

Yesterday our wonderful PT came over to work with Eva for an hour.  Eva did not have much breakfast so you could say she was "walking on empty".  She is progressing in her walking.  She can go an average of 8 steps but you can tell that after 30 minutes of being on her feet she does get tired.  She also seems to be dragging her left foot - like a club foot. This may mean a few things.  One, the shoe is obviously heavier due to the lift or two, her hip alignment has still not quite healed yet.  One step at a time, literally. Sad to say but I don't think she will be walking by her birthday. Time is running to fast for that goal.  We will have to set another goal, how about Independence Day.  It will have a double meaning!

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?