More of the same...

We visited genetics today. More of the same. They have been conferring--with each other, with other doctors--they just don't know. They ordered some tests but think they will all serve to rule out syndromes. They were all very nice and helpful in answering questions, but we're all a little tired of coming up with no answers. We will be following up with them soon. They, of course, have to get urine for one of these tests, so they put this bag on Livi and then send us down for blood workup in the lab. Apparently pissing kids off with needles actually makes them piss. Livi was no exception, but she happened to find her way out of the bag. So, pee all over the exam table--none in the bag. So we have to go back upstairs to have another pee bag put on and we wait...and wait...for another hour we wait for Livi to pee. Seriously, a bunch of grown adults putting off their afternoons waiting for one kid to pee. She's a gem.

Tomorrow is PT and neuro. Doubt we will find anything exhilarating out there, but we'll at least get to talk to our doctor.

Today we also talked to the palliative care team at mercy. They serve families whose kids are sick, some dying, some not (thats us), most inpatient, some out(again us). The woman was very nice in explaining what they do and she has an MDiv as well, so very encouraging to be able to be frank with her about where our hope is. That was the best encouragement we could have gotten. She gave me a binder to feed my organizing side and in one of the flaps of the binder was a poem written by a mother of a child with special needs. She was trying to explain what the experience was like for her and she likened it to a trip: so, you're planning on going to Italy and you plan your trip with books, learn some Italian, perhaps, expect to see all the wonderful sights--what everyone who has been to Italy has said. You get on the plane and while the plane is descending the stewardess says, "Welcome to Holland". But you didn't sign on for Holland. You've been planning for Italy. Everyone else who has been to Italy has told you all about it. You get off the plane and realize that while its not Italy, Holland is beautiful. They speak a different language and the sights are mostly different, but Holland is nice. In the back of your mind you also grieve the fact that you expected Italy, but got Holland. But isn't Holland beautiful?

I get it and I think its beautiful. I figure we will get to know Holland even better than we have before. We will grow to love Holland, but at first we will grieve the thoughts of Italy and how we had always planned for Italy.

But isn't Holland wonderful?!!?!?