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Showing posts from March, 2016

What fun

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So, it has been 8 days in the hospital. Sort of. Willow was admitted March 3-5 for enlarged ventricles, but told instead it was flu. Yes, she has the flu, but it was not the only issue. Then we were admitted again the 7th-8th with surgery to revise the shunt on the 7th. Then guess what friends? We went back in on Wednesday the 9th to have surgery again that night where an entire new shunt system was placed. :( Willow is still admitted, and under great care. This morning the PA with neurosurgery found her incision to be leaking, which caused concern for a possible surgery. Not sure what came of that today as I took a 3 hour break from the hospital and daddy stayed with Willow; but it seems we are going to do another ultrasound tomorrow and see what it shows and make decisions from there. The leaking has also stopped from the incision as far as I can tell. So over the last 8 days, only 1 1/2 of them were spent at home.
It is taking its toll on my mental strength, the kids at home, Jon&#…

Just 29 days

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29 days of separation from being 4 years surgery free and having to start the clock all over again.

Feb 7, started this whirlwind tour of what is going on with Willow. Seizures, testing, headaches, MRI's, nuclear med studies, vomiting, then the flu to boot!! Well, it ended yesterday with her 13th shunt surgery - only 29 days before we would celebrate 4 years surgery free.
Yesterday, her doctor revised the shunt; so he tested the pieces during surgery and found that the valve was not working. Something Jon and I had figured since she was getting horrible headaches while laying down in her bed. It just took a lot to get her to OR, because after all; she is Willow - our little ray of sunshine, and she still smiles and cracks jokes and tells stories while in the Pre Op room.

So, to you Mr. Doctor know it all/by the books; please take note: My daughter was in shunt malfunction and still smiled, did not have sun setting of the eyes, did well (and passed) the neurological testing, but gu…