One year ago...

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 motor skills of a child who is 12-15 months and guess what.. She is 14 months old, so she is right on track! :)   Her speech is behind, she is like a 9 month old, but Evan was also speech delayed so I am really not concerned with that. She is pretty quick to learn signs, so now I guess mommy just needs to learn them!  We are currently working with Spectrum Outpatient Therapy for her Physical Therapy and we are working on getting her to walk.  She has used a walker at therapy and loves it!  I don't think I have seen a smile stick to her face that long in a while. :)  We have also fitted her feet and ankles for an SMO, it is a small plastic brace that will go just above her ankle.  We are still waiting for those to come in.

So after a year of ups, down's and sideways spins; we have learned to expect the unexpected, we unfortunately still do not plan things too far into the future as we really don't know what it will hold, and we hate to disappoint anyone (my other kids especially).  We have learned that Willow does indeed have some white matter loss, though not near as much as first thought.  We have also learned that she is a tough cookie, and so is our family. I have to be honest and so many horrible things came to my mind when we learned about this diagnosis. It truly does test you in so many more ways than I ever thought possible.  Now I have been put through the ringer before growing up, but this is just so darn different.

So, as we sit here a year later still holding our little girl and watching her as she grows more every day, I have learned to say Thank You.  Thank you for blessing me with yet another day with my family. :)  It truly is the best gift of all.

A year ago (March 19th):

And now (March 7th):


Sarah said…
Just watched the walking video. That made me cry happy tears!

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