Thursday, December 23, 2010

A busy holiday week

As if the week of Christmas isn't a busy enough time, we had a slew of appointments this week and we fly out to Boston on Monday. This Christmas is definitely going to be a bit of a blur.

Summer had a CT scan Tuesday afternoon to check that the shunt is draining the cyst properly. We were a little apprehensive because of a comment she made to Jason on Monday about her eyes: "I don't like my eyes. I want better ones." It's enough to break your heart!

She's made comments about her eyes not working quite right from time to time, but it had been a while. In light of the recent surgery and new draining system, we decided to call neurosurgery Tuesday morning and they squeezed us in that afternoon, just to be safe.

When the tech came to get us from the radiology waiting room, Summer immediately knew what she was in for. She started telling us "No, I don't want to. I don't like to lay down." She became pretty frantic when we walked into the CT room, but once she was swaddled onto the table and we started counting with her, she calmed down.

The CT showed the cyst at about half the diameter it was pre-surgery, so that's great news! It is draining slowly, as intended. It could be that the comment about her eyes was related to the reduced pressure on her optic nerves and the funny feeling that might be giving her.

The neurosurgery nurse checked over her incisions and removed the bandage on her belly (aka her "belly bandy"), which Summer was actually pretty upset about. She had been proudly showing off her belly bandy all week. Now she can show off her incision and stitches instead!

Wednesday morning she had another VEP (the vision test where they hook all the electrodes up and watch her brain waves react to visual stimuli) with Dr Kelly and an eye exam with Dr Baran. Summer cooperated very well for the VEP, but lost patience with the eye chart test pretty quickly.

We also tried a new way of looking at her optic nerves, which is to have her look into this piece of equipment that basically takes enlarged pictures of the inside of her eye. She did much better with this than Jason or I expected, but not quite well enough to get out of having her eyes dilated and checked by Dr Baran. It's too bad too, because the dilating drops and eye exam afterwards were a HUGE battle. Maybe next time!

Neither the VEP test or eye exam showed any decrease in function, which was exactly what we were hoping for!

So now we've wrapped up the appointments for the week and have a couple of days to get ready for Christmas and our first trip to Boston. Thankfully, we've had tons of help getting this trip planned. We owe huge thank yous to a lot of people. Here's a start:

BIG THANK YOUS... our amazing co-workers and employers who have been extremely supportive, accommodating and helpful in so many ways everyone at Stellar Travel, where Jason's mom works, for organizing and taking care of our airfare on this trip my aunts and uncles for donating air miles to cover our flights for the six-week stretch everyone who has made donations, through the blog or otherwise

...and to all of our families for being family and doing what families do

All of it goes a long way toward helping pay for our stay in Boston and the medical expenses that will come over the next few months. You can't imagine how much we appreciate it. Thank you.

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