Westin William Thomas – Costello Baby

Mommy and Daddy like to put together a picture page each year to send out with their Christmas cards.  I looked at their old ones and I am so jealous.  In 2010 they went to cool places like Australia, New Zealand, Dubai, Thailand, Greece, Sweden, Aruba, Switzerland, and the Cayman Islands.  They must not like those places though because they haven’t gone back since.

I put our cool 2012 Picture Page below.  I look pretty handsome if I do say so myself.

Also, here is a link to their old pages so you can see their pictures from the olden days:  2003-2011 Picture Pages

2012 Picture Page

‘Twas the night before Christmas, when all through the house,
Not even Westin was stirring just like my spouse;
Westin’s G-tube food was prepped and blended with care,
In hopes that someday no G-tube would be there.

Westin was all nestled and snug in his bed,
While thoughts of reduced fluid rang in his head;
And mamma in her ‘kerchief, and Westin in his casts,
And hope that his increased flexibility from tethered cord surgery lasts.

When out in the living room there arose such a clatter,
It was Jordan jumping at Geckos to watch them splatter;
Away to the window I flew like a flash,
Pulled Jordan back and got out the trash.

The moon on the breast of the new-vacuumed floor,
Showed the work of the cleaners who came in before;
When, what to my wondering eyes should appear,
But a fast rolling blur I could see in the mirror.

With a loud little holler, so lively and fast,
I knew in that moment Westin was having a blast;
More rapid than eagles his rolling became,
And then out of nowhere he lifted his brain!

He rolled to the living room with red ball in hand,
Right over to the TV up on the stand;
With a huff and a puff he was trying to sit,
But his pants were so tight they were starting to split.

He signed “more” and “please” like a nice little boy,
Wanting to watch TV or play with a toy;
I sat him in his chair and turned on the show,
It was a Nickelodeon Christmas don’t ya know.

“Now, Blue! now, Steve! now, Tasha and Pablo!
On, Austin! on, Uniqua! on, Tyrone and Diego!
With all my friends that I watch with delight,
Merry Christmas to all, and to all a good-night!

Merry Christmas!

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!

Love,
Westin

P.S. Mommy and Daddy say “Hi” and Jordan says “Woof!”

2012 Christmas Card

Since birth, I have not been a good sleeper.  I just am not happy about being in a dark room all by myself.  And sleeping is very overrated.  Mommy and Daddy have tried EVERYTHING to get me to sleep.  They even made me do a sleep study at the hospital.  I refuse to sleep in their bed and I really don’t want to sleep in anyone’s arms either.  Music, melatonin, sleep medicine prescribed from the sleep doctor, a projector, fan, sleeping on an incline, rocking chair, feeding me, small blanket – nothing helps comfort me.  I just don’t want to sleep so I get cranky instead.

A typical night for me starts with me going to bed around 9 PM.  I like to stay up late like my Mommy.  I have to get bounced on a bouncy-ball in order to first fall asleep.  Even though I am bouncing, I cry the whole time.  Once I fall asleep, I am carefully laid in my crib so I do not wake up.  Now is when all the fun really starts – I wake up 10 to 20 times a night needing to be bounced back to sleep.  In the middle of the night, I need to get some food via my feeding pump plus I need some medicines throughout the night.  Sometimes, the feeding pump will come unconnected or I will puke causing a huge mess in my crib in the middle of the night.

It takes a team of Mommy, Daddy, night nurse, and night nanny to watch over me!  When Mommy and Daddy do not have night help, they sleep in shifts.  Usually Daddy monitors me until 3 or 4 in the morning and then trades off to Mommy.  They sleep on the couch so they do not wake each other up.

We are switching some things up to try to make me a better sleeper now that I am 13 months old.  Mommy plans to stop my night feeding and try the “Ferber Method”, that is letting me cry it out in the crib.  The first night, I cried for over 3 hours before I fell asleep.  Mommy came in to check on me every 10 minutes or so but I just wanted her to pick me up since I don’t want to sleep.  It has been a bumpy start so I will let you know how it goes.

Today was my first birthday party!  I had so much fun!  Mommy and Daddy rented out one of the community centers in our neighborhood.  It was too cold to go swimming so the party was indoors.  My Mommy, Daddy, and our great friends helped decorate the room in a “Blue’s Clues” theme.  Blue’s Clues is my favorite TV show!

A clown came to the party too and she painted faces (I wasn’t into that though), made balloon animals, and did a little magic show.  We all got to have some yummy cake.  Over 40 people came to my party including my nannies, nurses, therapists, friends, and even my memere Ellie and grandma Marilyn and grandpa Bob who all came from Iowa for my big day.  We all had so much fun and later that night Mommy and Daddy let me open my presents.  Wow!  Jackpot!  I got the neatest things ever!  I think we need to throw another party soon so I can get some new toys.

Today I went with my Mommy, Daddy, and grandparents to Pigtails and Crewcuts to get my first “official” haircut.  Mommy did cut my hair once in the back a little bit but it was an amateur haircut so I don’t count it.  I screamed at the lady since I did not want her taking my hair!  Mommy said it needed to be done since tomorrow will be a big day for me.

Yeah!  It is my first birthday today!  Can you believe I am finally one?  Mommy and Daddy can’t!  Well, actually they can.  They always knew I would be one some day even though the doctors didn’t think so.  They said they have been waiting for this day for a long time.  Apparently I cry a lot and the older I get, the less I cry.  So, they wanted time to go fast so I would stop crying.  Well, I still cry but not as much as I did back when I was a baby.

So I bet you are wondering what I did on my first birthday?  Well, I went to physical therapy, my mommy and daddy interviewed a candidate to be my new nanny on Tuesdays and Thursdays, then I had a dermatologist appointment, and after I fell asleep my grandparents flew to Austin.  Mommy also weighed me.  I am 21 pounds 10 ounces today!

We did take some cute pictures a few days ago.  Here they are!