2011 Christmas Card and Christmas Letter

Posted: 2nd January 2012 by westinthomas in Uncategorized

Hi y’all!  This is my first year being part of the family and Mommy and Daddy said I need to start pulling my own weight and write the Christmas letter.  It has been one heck of a year but let’s back up and let me tell you a little bit about myself.

My life started back in May 2010 somewhere in the middle of the Caribbean at the Westin Hotel.  Life was nice back then.  It was nice and warm and cozy. During 2010, we kept moving all over the place and I kept going up and down – I think Mommy was flying a lot.  It was a fun ride.  I was not sure how long I needed to stay inside her.  I thought I heard her saying “Get Out” so I started to make my way out of the belly.  I guess that was too early because Mommy ended up in the hospital and on bed rest in December of 2010.  Then I was forced to 8 weeks of lying still.  That was kind of boring.

Mommy was at a party on February 8th this year.  I heard her saying I was going to like all these gifts people gave me.  I wanted to come out and see them!  So, early in the morning on February 9th I finally had enough of this belly and said it is time to come out.  I was born at 4:51 AM and weighed 9 pounds 3 ounces.  I know that because Daddy got a picture of the scale – I assume I was on it but I was not in the picture.  It is a good thing I didn’t stay in Mommy until she was 40 weeks pregnant or else I would have been a 10 pounder!  A few minutes after birth I decided to play a game and see how fast I could breathe.  That got me sent to the NICU (Neonatal Intensive Care Unit) for a few days.  That was a bad move on my part.  That meant that I did not get to spend much time with my grandmas (Ellie and Marilyn) who had come to visit me.

Finally home from the hospital, my next stunt was to not eat.  I kept telling people it was because Mommy’s milk tasted funny but no one listened.  They took me to an Ear, Nose, Throat (ENT) doctor who said I was a noisy breather and he could fix that – hoping I would start to eat better after that.  I told them it would not work but never the less I was off to my first surgery and 6 night hospital stay at just six weeks old.  They did all kinds of tests on me: Brain MRI, Ultrasound, Heart Echo, EKG, X-rays, and took so much blood I thought I was going to pass out.  They could not find anything wrong with me, but I would still not eat and gain weight.  I made sure to VOICE my opinion of the situation along the way and I am sure everyone at that hospital still remembers me!

In April, even though I would try to eat 18 times a day, I was still not gaining weight so back to the hospital I went for another 6 days and more tests.  After the gastroenterologist (GI) doctor saw me trying to eat, he said it was time for a G-Tube.  The ENT doctor said it was either that or a tracheotomy so the G-Tube sounded good.  The G-Tube is a little tube that gets surgically implanted into my stomach so food can be pumped right into me.  Sounds good to me – just sit back and eat with no work!  I got to go home before the surgery which was a good thing since Mommy and Daddy’s friend Susanne from Sweden was in town.  Mommy said I got to see Susanne and her family in Sweden but I was still in her tummy so I do not remember it.  She got to see me at home in my true form.  She talked to me in Swedish which made more sense than what Daddy said to me.  I liked her!

I was in the hospital for 6 more days after my G-Tube surgery and then things started to roll.  Mommy and Daddy could pump food into me faster than I could puke it up.  The weight started to pour on.  Despite my weight gain, the doctors still had no idea what was wrong with me.  So in June, they sent me to the hospital for another brain MRI and EEG.  At this point I was so tired of all the testing I just did not want to breathe anymore.  The doctors did not like this so they sent me to the PICU (Pediatric Intensive Care Unit) for 4 days to think it over.  They would pound my chest and force air down me.  After that ordeal, I decided I should just breathe on my own since that is a lot easier.

Back at home a few weeks later, I got to see Grandparents Marilyn, Bob, and Ellie, Uncle David, and Aunt Diane.  We had a big party at my Godparents’ (Kelly and Eric’s) house.  Kelly’s mom, sister, and nieces came in from Las Vegas.  Before the party, we went to church and the priest poured water on me.  That was funny since I had already had a bath that day.  Soon after, Mommy started to leave me.  She said she had to go back to work at Freescale part-time but I would get to spend some one-on-one time with my Nanny Jennifer.  Jennifer took such great care of me!  Mommy says the only bad thing about her is she has a nursing degree from Ohio State.  Mommy doesn’t like Buckeyes.

On July 1st, Mommy and Daddy were very sad.  Daddy had to come home early from working in Baton Rouge, LA, where he has been working since May.  They said Kendall had been sent to the farm to play with the other dogs there.  I don’t know why they would send her away since they loved her so much.  She must be having lots of fun though since I have not seen her since.

A few days later on July 5th, Mommy and Daddy got a fax from one of my doctors.  I guess they finally figured out what is wrong with me.  Despite numerous doctors saying I might not live very long, the tests said I have something called Costello Syndrome which is not as bad as most of the things the doctors thought I had.  We found out about 300 other people in the world have this same condition as me.  It is very rare (Mommy and Daddy don’t even have it)!   Every two years many of the Costello kids get together and have a huge party.  The next party was at the end of July!  So I got to go to Chicago to meet all my new friends.

We went home to Iowa before the conference to meet some more of my family and meet some of Mommy and Daddy’s friends.  The Costello Syndrome conference was a lot of fun.  Mommy and Daddy learned a lot about how to better take care of me.  They learned I have about a 1 in 6 chance of developing early childhood cancer, 85% chance of developing a heart condition, at high risk of various brain issues, and will be developmentally and mentally delayed.  The plus side is I will probably get to live with Mommy and Daddy my whole life!  That sounds good to me as they take such good care of me.  They will also save money since they will not have to buy me a car or pay for college.  (I am going to surprise them though and go to college some day!)

In August, Nanny Jennifer left me.  This was my first breakup and it was hard.  She went back to school to become a minister.  Mommy and Daddy found me a new Nanny, Brittany.  She is closer to my age anyways, not even 21 yet.  She likes to put me on her shoulder and walk around the house with me.  I love it!  I can see so much all the way up there.

October was a hard month for me.  I was sick three separate times.  I puked more than I have ever puked before, up to 15 times in a row.  I had many fevers like I would get when I was younger.  I only made it up to 102.7 this time, well short of my record of 104.5.  I even went almost 40 hours without sleeping!!!  Mommy and Daddy said this was hard on them but somehow they made it through.  At the end of October I had an overnight sleep study at the hospital.  It took them over 2 hours to hook me up and I cried the whole time.  I am just not a good sleeper.  I like to wake up 8-15 times a night and sometimes I party from 2-5am.  This makes night time hard for Mommy and Daddy (well, when Daddy isn’t in Baton Rouge sleeping 8 consecutive hours a night).

November was a better month for me.  I was feeling better so Mommy and Daddy took me to Las Vegas!  I got to meet a lot of my family from California and got to see my grandparents and Uncle David and Aunt Debbie.  I had a great time in Las Vegas seeing all the sights and sounds.  My next trip is planned for December.  Mommy, Daddy, Grandma Ellie, and Nanny Brittany are all taking me to see a mouse in Orlando.  I would rather meet Blue (from Blue’s Clues) but they say I will like Mickey just as much as I like Blue.

Well, that is all I have to say for now.  Make sure you read all about my life at www.WestinThomas.com or look for me on YouTube.  Just search for WestinThomas or go to www.youtube.com/user/westinthomas.

And if you are wondering where my annual Picture Page is, you will have to go see it on my website.  Mommy and Daddy say they are going green this year.  I am still waiting for them to go green because they still look pretty white.

Have a Merry Christmas and a Happy New Year!

Westin William Thomas (and Mommy, Daddy, and Jordan – and I am sure Kendall says “hi” from the farm)

 

2011 Christmas Card

  1. Rita Lazzari-Willan says:

    Hi , Im Rita from England and my son Jaxon is 8 months old he too has costello syndrome, i found your blog and it cheered me up reading some of the things you have put! I only found out about it last week and have been lookin on the net for anyone who has a child with costello.I aint quite sure of how im feeling at the minute as its all still a shock,that much so i havent told anyone in my family,or friends. I shall carry on reading your blog, seems our sons are about the same ageish,Thanks again your helping me in a way you couldnt know, Love Rita xx

  2. westinthomasmom says:

    Hi Rita!
    Welcome to the Costello family! I think you will truly find that we are a family and you will be able to get all the information you could ever need from the other families. I was actually over in the UK last weekend in Manchester and visited with Colin and Cath Stone. He is the one who created the costellokids.com website. His server crashed so he is rebuilding it now. I am actually going to be over in the UK again next weekend (27th and 28th) in London. If you live in London, I would love to meet up with you to chat about your son and Costello. Westin got diagnosed right before the 2011 conference in July so we were fortunate to be able to go to Chicago for it and we learned so much. Westin is now 11 months old! It is difficult to deal with the diagnosis at first but over time it will be easier. The doctors thought Westin had something much more serious so in a way we were happy when we figured out he had Costello. It will be a long and tough road but you will be so amazed by all of the Costello kiddos!
    I can’t wait to meet you some day!
    Angel Thomas