Addison was born with a Giant Congenital Nevus on her left leg. The journey is a struggle. Decisions are hard. We hope that Addison's experience can help others dealing with the same issue. While we know that there are others that are more extreme, we hope that in sharing her story, we can provide support and encouragement. Leave a comment, let us know you've been here.

Wednesday, April 6, 2011

More than a baby bottle

Addi had her first fill of her expander this morning, which always makes for a bit of a stressful day for me. We had to be at the hospital at 8:00. We were a few minutes late...stupid traffic. There just isn't a great way to get to Primary Children's from our house. So we got there, and checked in on their little computer thingy and took our buzzer (like a waiting list buzzer from a restaurant...they just buzz it when they are ready to get the registration done). And we sat down to wait our turn. The other people in the room got registered, and moved on, then more people came and they started to get called. I was getting a little concerned when my phone rang. It was the hospital, asking how close we were...um, right here in your waiting room, where we have been for 30 minutes. They were ready and waiting to take Addi back to surgery. Just then, one of our favorite nurses came and asked if she could go and get Addi weighed, and started on all the initial stuff. Addi went right with her, and I went to get the registration papers signed.


Just as I was walking into the exam room where they had taken Addi, I noticed the nurse taking Addi's earrings out. This is something that has to be done, but always causes her a little stress, so I was just in time. She started sobbing uncontrollably, and I thought we may be in trouble. Our friend Mary Ann was right there, though, with plenty of toys and entertainment to keep Addi happy. She said that she had just gotten back from vacation and had gotten a bunch of toys that she had thought of Addi when she bought.

No Versed this time, Addi walked back to the operating room, jumped up on the table, and played for a minute. Mary Ann said that she just got mildly upset when they brought the mask out, but that she does better and better every time. Which, isn't necessarily a good thing - it means that she has been there way too much!

So, when Dr. Siddiqi came to find me, he had kind of a smirk on his face. We went into the consultation room, and our conversation went something like this:

Doc: "So, how much do you think we got in?"
Me: "Well, you put 60 in the first time, so I would guess somewhere around there."
Doc (grinning): "Higher."
Me: "I'm not sure you could get 100 in there."
Doc (looking rather pleased with himself): "240 ccs. We never would have been able to get that much in the clinic. Her skin was so loose, we just kept filling."

So, that cuts down on the number of fills that she will need to have, we will just take it week by week for now.

If you are keeping track, Addi now has 300ccs of liquid on her back. How much is that exactly? 10.1 ounces. That's more than a baby bottle holds!

And her recovery? When I went back to post-op, she was quietly watching TV. She had a little bit of pain medicine, but was totally calm. She told me when we were waiting to leave that she wanted "Wendy's chicken nuggets, with french fries, ice cream, and chocolate milk with a straw" when we got home. So, she got it. Spoiled girl!