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Showing posts from March, 2012

The exhaustion sets in...

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I know this feeling now all too well, and yet it is not a friend of mine.  Sheer exhaustion, emotional, physical; I am just spent.

Willow was admitted yesterday to the hospital again, and had surgery again... The difference this time, was we were admitted before getting here, and I got to skip the ER! We had a follow up with Dr. Foody, after our Sunday trip to ER.  On Tuesday he did a shunt series (x-rays of her head to belly to track the shunt itself to check for breaks), and a nuclear med. study (the die test).  Well the nuc. med study showed no inter ventricular activity.  Basically she is not draining any fluid.  Now one would immediately think that her vents would be huge, well they aren't.  And her behavior is sporadic at best.  Now to make it fair, she has been battling a low grade fever for a month and half now, and has had sporadic vomiting for about a month as well, so with those pieces plus the pieces of her CSF from the nuc. med study (she has an elevated WBC count an…

My little heart attack

I love her dearly, I really do... But when she begins to do this:

http://youtu.be/BqTVUPpX04Q

I begin to worry, and the reason is this; after getting this video she decides to climb again, and as I am telling daddy that I just got a video of her doing this and sent it to Aunt Becki does she decide to go flying off the arm of the chair and dad comes sailing to the rescue and grabs her by the leg and catches her before she hits the ground.  Now with any other 15 month old child you would let them fall so that they can see the error of their ways (in a safe manner of course). Only Willow cannot fall on her head too many times without it most likely causing a trip to the ER.  If dad had not been there to catch her, that would have been the third time today of falling off the furniture and hitting her head.

What am I going to do with her??

One year ago...

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Well, my thoughts have really been all over the place lately.  I have realized that it was one year ago that we learned about Willow having Hydrocephalus (literally, the ultrasound was done 3/9/10), and the MRI that started the whirlwind of diagnoses happened on the 14th.  So what has happened in the last year??? Well a lot of praying!  It is truly a miracle that she has come along as far as she has from what we were first told.  Originally we were told, she had such a great amount of white matter loss (no brain) that it was why she had hydrocephalus and would not need a shunt.  Then we were told she had cortical blindness, and we were referred to Ken-O-Sha for help.  They came and realized just how little she was, and how behind she was.  Well, a month later we started on the road to shunt surgeries... So we now sit at 10 surgeries later, 4 complete shunt replacements (included in that 10)! She wears glasses, as she is not suffering from cortical blindness, she has the gross and fine…