Hey all!!
I am so sorry I haven't blogged in such a long time. I had to read my last blog just to see where I left off. So here we go:
Anabelle still has her NG tube unfortunately. I absolutely hate the stupid thing (except that it feeds her) because we constantly have to change it out, it gets clogged, and the tape on her face only gives people something else to stare at. She is not gaining as much weight as she did initially she has leveled out quite a bit. However, her surgery for the G-Tube is coming up on the 30th of this month. I am so excited to get this thing placed, but I'm also a little scared for her first surgery. The surgeon assures us it is a relatively simple procedure and he feels really good about it. It should take about an hour to complete and I think we will be staying overnight. She is having the surgery done in Portland at Doernbecher's. Today she had an x-ray to make sure her intestines are working properly. I havent heard the results from that yet. We're hoping that with the G-Tube we will be able to do some more calorie dense foods to help her gain weight.
Anabelle is starting to really struggle with sleep. She is now on two different medications to help her sleep at night. When she struggles with sleep, we struggle with sleep. Now that we have the medications it is really helping. We also had to up her meds for her muscles and her pain. I'm not really a fan of that but whatever makes my baby comfortable.
Unfortunately, Anabelle is no longer talking. She doesn't have any words. However, on the plus side she still laughs so much! And I love making her laugh. I talk to her all day and love to talk to her about things that make her happy. She is also no longer moving. She can mover her arms but not with any precision. She is doing really well with being content with her situation.
Our Car Show fundraiser got cancelled unfortunately. We just didn't get enough cars to put on a good show. However a friend of our family has put together a great new fundraiser called Anabelle's Angel Glow 5k. For more information about this event visit www.angelglow.org. We are so excited about Bend's first glow run!
Now for the fun part! We went to Orlando for Anabelle's Wish trip and had a blast! We got to go to Disney, Sea World, and Universal. We went to Universal our first day and got to see the Barney show and meet Barney. Anabelle was so happy to meet Barney! We also got to see a few other shows while we were there. We went to Disney 3 different days. First day we went to Magic Kingdom (identical to Disney in So Cal) and went on all the rides they would let us take Anabelle on. She absolutely loved Dumbo ride!! She also liked the tea cups (mommy and daddy left a little nauseous)!! She also loved meeting the characters! Mickey was her favorite!! Duh! Then we went to Sea World and we got to feed the dolphins. I think most of you got a chance to see the picture. She was crazy excited about the dolphins. Shortly after that a huge thunderstorm rolled in and they shut down most of the park. The place we stayed at called Give Kids the World was fantastic! They had meals available for us 3 times a day. They had an Ice Cream Parlor that served ice cream from 7:30 in the morning to 9 at night. We were able to place a star on the ceiling of the main tower that will be there forever. She also made a cute little pillow. They also gave Anabelle a different toy every day. We came home with a whole extra duffel bag full of stuff. Our family was treated fantastically! Make-A-Wish did everything they could to make us feel really special.
I know I say this every time but I am truly thankful for all of the support we have been given over the last almost year (I know crazy right?!). You guys are so great!! God has big plans and big outcomes for all of us through Anabelle's life. You are one of Anabelle's Angels!
