This is my 2nd year in charge of the Christmas letter and I am already dropping the ball getting it out late. Ooops! My 2013 New Year’s Resolution will be to try to get the letter done in 2013 instead of 2014!
I have been outside the mother ship for almost 2 years now and wow how the world has changed since that scary morning back in February of 2011.
For starters, I do not have a constant headache anymore! I met with a smart doctor back in June who thought my huge head was due to having too much brain fluid causing high internal brain pressure. He suggested putting a probe into my brain to measure the pressure. To which I said, “SAY WHAT?” But it was not that bad. I went to sleep for a few minutes and woke up with it in. A few days later it was confirmed I had high pressure and I had a quick brain surgery to drill an extra hole in my brain to reduce the pressure. The alternative was a shunt (small plastic valve in the brain), which I still might need someday but for now I am living headache free!
That same doctor said I was too stiff. What is this guy trying to say? I thought I was easy going most of the time. He said my spinal cord was tethered (attached at the end when it should be free floating) and he needed to cut it. What is up with this guy always wanting to drill or cut me? Guess I would not expect anything less from a neurosurgeon. So in October, it was off to the hospital for another surgery, this time in my spinal cord.
Thanks to that nice doctor, I can now sit, roll all over the place, and even touch my toes! I am so much happier now that I have even stopped crying all the time and can even sometimes sleep through the whole night. Now I just cry when my ball rolls under the couch and I cannot reach it or if I want Mommy or Daddy to pick me up. I also had Growth Hormone testing done at the hospital for eight hours one day. They had to put two IVs in me and check my blood every hour. That day seemed to last forever…. But I got to watch a ton of TV so it was not that bad. I am officially human growth hormone deficient. I guess that explains why I am so short. (This is another lovely “benefit” of having Costello Syndrome!) Mommy and Daddy are still debating about giving me daily human growth hormone injections. There are many pros and cons. The big con is there are some studies that say it might increase my risk of getting cancer. With Costello Syndrome, I already have a 1 in 6 chance of getting childhood cancer so I hope they do not give me HGH. Plus, who wants to get a shot every day? They already poke me every day to check my blood sugar levels. That is enough poking for this little guy!
My latest medical journey involved wearing serial casts on my feet – four sets of casts they kept taking off every week and putting on new ones. They are trying to make my feet not so pointed so I don’t look too much like a ballerina. I finally got to get the casts off but now they make me wear ankle braces all day long and casts at night when I sleep. They said I will probably have to wear these AFOs (ankle foot orthotics) my whole life to keep my feet at 90 degrees instead of pointed. And in a few years, I will probably need a surgery on my Achilles tendons.
Mommy just calculated up my yearly medical stats. Thank goodness they have good health insurance!! This year I had 2 surgeries, went to 84 doctors or testing appointments, had 134 total physical, occupational, and speech therapy sessions, went under anesthesia 5 times, and was at the hospital 11 days and 6 nights. No wonder why Mommy has bags under her eyes and wishes she had her own secretary!
In other big news this year, I turned 1!!! We had a huge Blue’s Clues party in February. There were so many awesome people there. Even my grandmas and grandpa from Iowa came!
I have started to talk! Well, not with my mouth yet but with my hands. I can sign some of the really important things in life like swing, more, brush my teeth, all done, please, food, dinosaur, Mommy, and Daddy. I am also starting to eat some food by mouth (instead of only through a hole in my stomach)! I ate 14 ounces of baby food on Christmas day. That is my new record!! So far, my favorite is chocolate pudding.
As for my travels, in February I took my 2nd trip to Las Vegas! This time we brought Nanny Brittany with so I had someone to party with back in the hotel room. We took Nanny Stephanie with us for a week-long trip to Hawaii at the end of April. That was so much fun but I got mad on the long plane flights. I got to take my first boat ride on the ocean. It was so peaceful it put me right to sleep. I also got to see a Luau that had fire dancers. Nanny Brittany went with us to Scottsdale in June along with Grandma Marilyn and Grandpa Bob. I got to go to LA in September with just Mommy and Daddy for one of Daddy’s friend’s wedding. I got to meet friends from Sweden, Canada, and the Netherlands and I even met my 100 year old great aunt. While in LA, I also got to spend a day at Disneyland. I love the fast rides that spin around and around. This week, I just got back from a 9 day trip to Orlando. This was my third time to meet Mickey! While I loved the fast rides at Disney and Universal, my favorite ride was the 10 story glass elevator at the Hyatt hotel at the airport. I could have stayed there all day going up and down in the elevator.
So I bet you are wondering what Mommy and Daddy are up to? Mommy was working part-time since I was such a handful but she was forced to go back to work full-time at Freescale in March. Since I have had over $1,000,000 in medical expenses so far, insurance is important. Plus, Mommy loves doing data analysis to help figure out why microchips are not yielding well and where all those particles are coming from. Before Mommy went back to work full-time, she took three weekend trips to Europe to get her American Airlines Executive Platinum status for the year. She went to Manchester, London, and Madrid and got to hang out with some great friends from high school and another family with a Costello kiddo. Mommy had to go to Maine for a week in November because her grandmother was sick. Mommy said they sent her to live on the farm like we did with Kendall last year. At least Kendall will have someone to play with now. Mommy’s friends Brenda, Theresa, and Wendy visited us in November. They went to the Aerosmith concert in downtown Austin and had a great time reminiscing the olden days.
Daddy spent most of the year traveling every other week to Baton Rouge, LA. He got to do some part-time work so he was spending a lot of time at home with me. Mommy is getting tired of him being home so much though. She says he cooks too much “good” food for her and she is getting fat. Daddy took a boys’ trip to Las Vegas in December, but he forgot to take me! Also, Mommy and Daddy left me at home with Nurse Mary and Nanny Brittany last weekend and went to Las Vegas. I can’t believe they forgot me again. Oh well, I guess I have already been there twice and I am sure they will take me again this year sometime.
I hope you had a Merry Christmas and have a Happy New Year!
P.S. Mommy and Daddy say “Hi” and Jordan says “Woof!”
2012 Christmas Card