summer update

We are closing in on our trip to DC!  It is so crazy to realize that it is just under 2 weeks away!  Willow is quite excited to go 'talk to other people with shunts like me' (she says this any time she talks about us going to DC - LOL).  The other kids are also excited as well. Each year we try to raise funds to help cover this cost of our travel expenses, and well this year we didn't get a great start to that idea. But the kids have pitched in this year with their own kool-aide stand as well as loom bracelets and candies they have made.  It has been great fun to see them work so hard to help raise money.

We had a bit of a scare with Willow two weeks ago. We thought she had a seizure, but the EEG still shows 'normal results' and without catching it on video the neurologist can't confirm seizure activity.  They are calling it some sort of sleeping issue (forgot the name of it), but I was told to think restless leg syndrome but slightly worse as it affects the whole body.  Yet when the nurse practitioner from neurology spoke with both Dr. Umfleet (her neurologist) and Dr. Foody (her neurosurgeon), it was Dr. Foody who said - nope something still doesn't seem right here; so he wants an MRI done. :(  Now we wait for the hospital to call to get this scheduled - hopefully before we run off to DC!

While at the neurology office, they of course measure her head, and it is at 47 cm.  Now I am not sure what the head size is of a typical 3 year old, but I can put this into perspective for you... Her head is the same size now as it was the day she had her shunt placed at the age of 4 months!! I did some searching and the blog I posted about her surgery (here) has her head size at 46 cm, and so it is 1 cm larger... But wow!! 3 years and 4 months later, her head has not changed size.  That still boggles my mind as I sit and think about that 3 days later!

Willow has been quite busy this summer in general with trips to friends houses, play dates, hanging out with her siblings, and of course her new venture is party planning!  She started the summer off with a park party/BBQ that had quite the turn out, had a half birthday party that just included us, and is now getting invitations made (by herself of course) for an end of summer/back to school party!  She is even working on telling me how to decorate! LOL  I love this girl so much.

July 2014

comparison pics:
May 2011


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