I Am Almost 3!

Today we had a big birthday party for me! I won’t be 3 years old for 3 more weeks according to Mommy and Daddy but they decided to celebrate early since my baby sister is supposed to be arriving the same week as my 3rd birthday!

My godmother Kelly along with Colleen and Jill helped Mommy buy decorations and set up the room. Mommy decided to put together my three loves for the theme: schoolbuses, Elmo, and Cookie Monster. I will be taking the school bus to school starting in mid-February! Daddy ordered the pizza for the party but unfortunately I didn’t get to try any since I can’t chew (yet). Nanny April came and got me all ready for my party in my new bowtie/suspender shirt and she even put tattoos of Elmo and Cookie Monster on my hands!

This was by far my favorite birthday party!  I loved my Sesame Street Schoolbus cake made by Annie from Cake d’Arte!  I also had Elmo and Cookie Monster cupcakes!  They are my favorites.  Mr. Rudy came and sang songs and read to us.  I get so excited when I see him on Fridays at Cups & Cones for Storytime. I ask about Mr. Rudy all week long. My favorites are “Wheels on the Bus” and the “Boa Constrictor” song.  Here is a video from my birthday party (see, isn’t he great???):
http://www.youtube.com/watch?v=k1eB3y6WT-4&list=UU83apoccuZh57F953Ip19Gw&feature=share

At the end of my party, Elmo showed up too!  Wow!!  I hear Nurse Mary is friends with Elmo and invited him to come to my party.  I couldn’t have had more fun that day.  Thank you to all of my friends who came to help me celebrate!  I had friends from the neighborhood and beyond come, including my friend Nicole who also has Costello Syndrome! It really was such a magical day for me! I hope we have the same exact party again next year. And did I mention how many cool gifts I received?? Wow!!

Giggling At Silly Daddy

So today Mommy and Daddy were making me stand against a wall.  Sounds like fun, doesn’t it?  It is part of my physical therapy homework.  It makes me balance so I don’t fall to the side or fall forward and it helps build up my leg muscles for walking.  Daddy was banging a balloon on his head to make me giggle.  It was so funny!  I bet you will giggle if you watch the video below too!  I think Daddy didn’t realize Mommy was filming him too.  Ha ha.

Make sure to notice me taking a few steps at the end towards Daddy!  I am such a big boy!  I am 27 months old now and I hope I am walking by the time I am 3 years old!  Mommy would love it if I could walk by July for the Costello Syndrome conference but this walking stuff is hard work!

Don’t forget to watch the video!

http://youtu.be/lZ6q5O4YylQ

2012 Picture Page

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

2012 Christmas Poem

‘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!

2012 Christmas Card and Christmas Letter

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

Aloha from Maui, Hawaii

Aloha!  That is how they say “Hello” in Hawaii. I am 14 months old now and just got to take my first trip to Hawaii.  It was a long flight and I was not very happy about it.  I voiced my opinion during the flight – loud and clear.  After that long flight, I found out they have a 5 hour time zone change.  That is crazy!

We stayed at no other than the WESTIN Ka’anapali Ocean Resort Villas.  They were really nice.  Mommy and Daddy and I had a full apartment to ourselves with a full size kitchen, dining table, living room, bedroom, and large bathroom.  Nanny Stephanie came too and she had her own studio.

We had such a great time.  I spent a lot of time in the ocean and at the pool!  I got to ride on my first boat in the ocean. It was so peaceful I went right to sleep in my car seat.  If only there was an ocean at home to help me sleep!  I also got to travel up Haleakala, which is an over 10,000 foot tall mountain on Maui. It was so windy I thought I was going to blow right off the mountain. It was also very cold, so it was good thing Mommy brought my blanket. The highlight of the trip was I got to go to a Luau. It had fire dancers and open bar which Mommy took full advantage of since Daddy was driving.

The flight home was a night flight.  Mommy got me my own seat for my car seat thinking I would sleep.  But I showed her, I was able to stay awake almost the whole flight!  And I also stayed awake the whole flight from LA to Austin.  Mommy and Daddy looked pretty tired when we landed in Austin for some reason.  I felt pretty rested (just a tad crabby) with my two hours of sleep all night.  Mommy and Daddy said we weren’t going to go to Hawaii again for a while.  I am not sure why?

Actually SLEEPING on a plane!

Daddy playing with me in the Admiral’s Club

Me and Daddy

Getting fed through my feeding tube. My hair was a mess all week from the sunscreen everyone put in it!

Nope. Don’t like this at all!

Happy!

Standing on my tip-toes in the ocean for the first time in my life.

Mt. Haleakala

All of us and Nanny Stephanie

Brrrr! The wind was crazy up there!

Don’t worry! Daddy made sure my vomit didn’t get in the pool. I promise!

Nanny Stephanie and me on our balcony

Nanny Stephanie and me

Dragon’s Teeth are behind us!

Mommy and me!

Up on my tippy toes again!

Fun time with Daddy!

Banyan Tree

Posing like a GQ model.

At a luau!

Luau

Five fire dancers!

My first boat ride!

The ocean put me to sleep. I slept in here while Mommy, Daddy, and Stephanie snorkeled!

Our private boat captain. 😉 He watched me while I slept.

Snorkeling!

Beautiful glass-like water. And then Mommy and Daddy swam like racehorses to get in the boat after they saw a field of jellyfish!

I liked this for almost a minute this time. Then I cried and made them take me out!

Siesta under an umbrella by the pool.

We are above the clouds!

Haleakala! Looks like mars!

Hawaii is so pretty!

Cliff diver at Black Rock.

Nanny Stephanie and Mommy drinking some wine. Mommy looks really tall here!

Iao Needle

Rainbow!

I am going to miss you Hawaii!

I Hate It When Someone Says I Did A Good Job

I have a lot of little oddities… one of them is I do not like it when someone says “Good Job” or if someone claps for me.  If they do, I break into tears.  See the link to the video below.  I was 14 months old in this video.  The interesting thing is other mommies of Costello Syndrome kiddos said their children did the same thing.  So, it is just in our genes I guess!

http://youtu.be/xBH-4bsc5z0

Two Weeks Into A Blenderized Diet

Hi there.

Well, I am now two weeks into this newfangled diet my mommy came up with.  She is still making up quite a ruckus every day using her fancy Vitamix blender.  My blend today consisted of baby oatmeal, vegetable beef pilaf, pear, raspberry, spinach, potatoes, prunes, apples, apricots, blueberries, whole milk, coconut milk, olive oil, apple juice, Poly Vi Sol vitamin, prune juice, Miralax, cinnamon, cardamom, and ginger!

I am more constipated on this blended diet than I was on formula which is why Mommy is adding in prunes, prune juice, and Miralax.  Us kiddos with Costello Syndrome are often constipated.  It probably has something to do with low muscle tone in our GI tract.

I am still vomiting less with blended diet than I was with regular formula.  And I am now fed only 5-6 times a day instead of 6-8 times a day.  I don’t have to eat overnight either!  I can tolerate more volume with real food.  Mommy is also noticing that my hair is growing in thicker already and it is getting lighter and lighter by the day.  I was born with dark brown hair like Daddy but it is more of a light brown or dirty blonde color right now.  I am 13 months old.

They are also feeding me now solely with 60 mL syringes.  I used to be fed from a pump.  Now they put my extension onto my Mic-Key button and connect the syringe to the extension to feed me.  The funny thing is they are getting the syringes from a squirrel store!  They are supposed to be used to feed squirrels.  I guess they work better than the ones they were getting from their DME (durable medical equipment) company.  I guess I don’t mind.  I like squirrels.

Mommy’s blending fun!

Me, Elmo, and Jordan hanging out

Hair is getting thicker and blonder!

New Blenderized Food Diet Equals Less Puke

My Mommy got this bright idea that instead of feeding me Elecare hypoallergenic formula, she would feed me real food.  Huh?  How is real food going to go through my tiny feeding tube?  Mommy bought the granddaddy of blenders – The Vitamix.  She says food will get chopped up enough in the blender to go through my feeding tube.  I bet you are wondering what she is feeding me?  Here are the ingredients in my first trial run: water, rice milk, pears, sweet potatoes, olive oil, and baby food oatmeal.  It is pretty basic but she wants to make sure I do not have an allergic reaction to anything.  She has already mixed a little bit of each ingredient into my formula first to make sure I wasn’t allergic.  She will keep trying out new things so I can have a more varied diet.

And after my first week on the blenderized diet, I am happy to report that I have only puked twice!  Whoa!!  I usually puke several times a day (sometimes 5 times a day).  I can tolerate more volume of blended diet than I can of formula so now my mommy doesn’t have to feed me in the middle of the night anymore!  She used to have to “plug me in” and pump food into my belly for a few hours in the middle of the night.  My stomach is tiny and empties very slowly so I couldn’t handle a lot of food at once so I would be fed about 7 times a day on average with 2 feeds at night while I was sleeping.  Do you know what it feels like to have food dripped into your tummy all night?  I used to wake up a lot since I didn’t like being fed at night. Have you heard of reflux?  Try being fed when you are lying flat!

So far week 1 of this blended diet is going OK.  I will let you know how it continues to work!

Listen To Me People – I Am Trying To Tell You Something! I Don’t Want To Sleep!

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.

First Birthday Party

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.

My Slide Show, Cupcakes, Cake, and Gifts

My Blue’s Clues Cake

Food!

Nanny Brittany and Silly Sparkles the Clown

Roni and Cutie Caitlin

Silly Sparkles and Carmen

Colleen and Addison

Nanny Stephanie and her TALL boyfriend Tyler

Family Picture

Family Picture.

Kiddos!

Nanny Brittany, her boyfriend Mike, and my Physical Therapist Laurie

Michael and Brad

Brad, Mina, and Shy Nicholas

Joy, Trey, and Buddy Luke

Mommy and Sally

Loving my Blue’s Clues cake!

Waiting for my bath in the sink!

Silly Sparkles, Silly Bob, and Grandma Marilyn

Spike and Addison

James, Jessica, and my Godfather Eric

My Grandparents from Iowa!

Cutie Pie Addison

James and my bud Luke

Kristi, James, and my friends Joshua and Haylie

Todd, Cheryl, and my buddy Caleb

Nanny Brittany and Nurse Mary

First “Official” Haircut

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.

Pigtails & Crewcuts

Why is Daddy wearing a funny cape?

Not sure about this!

Mommy says my mullet has to go. Why aren’t my grandmas saving me?

Pouting and screaming

Still screaming!

Happy Birthday To 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!

Mom’s Favorite

Family Picture For My 1st Birthday

Awesome Airplanes!

Sitting in a trunk

Jordan

Me and Nanny Brittany

Pretty cake!

Smashing my cake

Tasting my cake!

First Trip to Walmart

After being cooped up in the house for almost a year now, usually too fussy or pukey to get out much, I got to take my first trip to Walmart today!  Daddy dressed me in my camouflage outfit for this special day.

I had a great time with daddy looking at all the TVs and baby toys.  I even got to pick out my own new toy.  I got a steering wheel toy.

I was not a big fan of the shopping cart though.  I am just not strong enough yet to sit up in the cart very long.  I cannot wait to get another trip back here soon.

Daddy and I at Walmart! I wore my camouflage especially for this day.

Picture Pages!

My Mommy and Daddy have been making a “Picture Page” every year since 2003 to summarize up their travels and adventures for the year.  I helped them make the Picture Page for 2011.  I put a lot of cute pictures of myself in there.  I didn’t want the ugly screaming one from when I was born but they insisted it had to be in this year’s Picture Page.  Bummer!  I look fat in that one and I hadn’t had a bath yet when they took that picture.  It will be payback when I get older since I am going to take ugly pictures of them!

2011

2010

2009

2008

2007

2006

2005

2004

2003

2011 Christmas Card and Christmas Letter

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 8^th 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 9^th 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 1^st, 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 5^th, 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

My First Christmas!

This was my first Christmas!  So, what did I do today?  Well, we started off early in the morning and flew from Orlando home to Austin, TX.  Mommy kept snapping my picture sleeping next to various Christmas displays.  Silly!  Then we finally got home and I got kisses from Jordan.  Woof woof!  Then Mommy and Daddy set me in my chair and showed me all of my presents.  I am only 10 months old so I was not able to open them myself.  I got a lot of great presents!  I can’t wait to play with all of them.

Here are pictures from the whole Christmas season.  Mommy takes WAY TOO MANY Pictures.  Ugh…

Love my Sophie Giraffe

Who is this?

He has to much hair.

Help! Save me!

Brrr.

Nanny Brittany and me

Sleeping by some random Christmas display

Sleeping by some random Christmas display #2

Opening gifts

Yummy Blue’s Clues DVD

Disney World!

Mommy, Daddy, Nanny Brittany, and Memere (Grandma in French) Ellie took me to Disney World the week before my first Christmas.  I am only 10.5 months old!  How lucky am I?  I had a great time!  I loved all of the spinny rides.  I went to Magic Kingdom, Animal Kingdom, Sea World, and Universal Studios Islands of Adventure.  Mommy and Daddy promised me I can go next year too!  I can’t wait!

You can read about my trip here.  I also put some of my favorite pictures below too.

http://boardingarea.com/blogs/mommypoints/2012/03/26/traveling-with-a-toddler-with-special-needs-westin-goes-to-disney-world/

We stayed at a timeshare that had a fully living room, two bedrooms, large kitchen, dining, washer/dryer, two bathrooms, etc.

Sleepin’ like a gangsta!

Tea cups! Whoo-hoo! Fun!

This was one of my favorite rides (well, except that it got sunny).

Fun on flying dumbo!

The castle at Magic Kingdom!

Passed out!

Mickey, Minnie, Mommy, Daddy, Memere Ellie, and Me

SeaWorld

Shamu was pretty cool (well, I liked the big screen TV the best).

Roar! (T-Rex Cafe)

Fun with Nanny Brittany

Pooh!

Wow! So soft!

Eeyore

Tigger!

Riding with Grandma Ellie and Nanny Brittany

Mommy and Daddy went on the Harry Potter ride without me!

Daddy loves Scooby-Doo

Having fun perched on Brittany’s shoulder

Sleepin’ like a gangsta (again).

Not a fan of dolphins (and sun)

Mommy feeding Flipper

Every time Mommy dressed me in this outfit, I would do something to ruin it.

Daddy with his Butterbeer (Harry Potter) at Universal Studios

Mommy and I after my outfit change

Whee! Lovin’ the carousel!

Cool dude.

Playing with the Grinch

Daddy didn’t tell me I would be getting sprayed by water on the One Fish, Two Fish ride at Universal. I was not happy about it.

Happy

A cheesey smile

Ha ha ha

Those are not my drinks!

Love flying! My socks say “I Only Fly First Class” (and it is true).

Merry Grinchmas!

Who Wants To See The Hole In My Tummy?

The mean old nurse practitioner at the surgeon’s office changed out my Mic-Key button feeding tube today.  I really don’t like it when she does it.  Thank goodness I only have to go through this every six months (or unless it gets pulled out accidentally).  So far Jordan is the only one that tried to pull it out but thank goodness it didn’t come out.  If it comes out, the hole might actually close so it is so important to put a new button in place right away.  Some day I will be big enough and will eat so much through my mouth that they will actually let the hole close!  I can’t wait for that day.

Note: if your tummy is weak, you might not want to watch this!

Las Vegas – Featured On A Travel Blog

A travel blog featured my trip to Las Vegas.  I am so famous!!  Read my story and see the pictures at the link below.

http://boardingarea.com/blogs/mommypoints/2011/12/01/little-cs-traveling-friends-10-month-old-westin-traveling-with-special-needs/

Trick Or Treat (and no, I don’t have croup)

I wasn’t happy about it, but Mommy and Daddy stuck me in a big, furry bear costume Saturday.  They took me to a party a couple of houses away from ours that night.  I was pretty cranky though since I got up at 4am that day and only took a two-hour nap.  So, I didn’t get to stay for very long.  It was really cold out that night so it is a good thing I was wrapped up in all that fur!

Then tonight, Mommy and Daddy took me to the neighborhood next door for another party.  It was hot though so I wasn’t a fan of the bear costume.  This time I got to go knocking on people’s doors and begged them for a toy.  They didn’t understand me though and kept giving Mommy and Daddy candy.  That is not fair!  Don’t they know I can’t eat that?  😦  Mommy had a big smile on her face that night though.  I think she ate my candy.

Mommy stayed to help pass out candy at a friend’s house so Daddy walked me home.  On the way home, a little boy started running up to me but his dad said “don’t touch him because he sounds sick.”  😦  Then another lady we walked by said I was “croupy”.  I don’t think I am croupy.  I have had my bark since I was born.

Back in August when Mommy made me try on part of my costume

Daddy and me!

Picture outside our house

Here I am with my friend Addison

Cute grin!

With Mommy and Daddy

EKG

Today I had to wear an EKG for 24 straight hours.  It is called a holter.  I had to wear it to make sure my heart is good since 85% of Costello kiddos have heart issues.  Mommy told me I was not allowed to get the device wet or else she had to pay a lot of money.  Well, I decided to get a stomach bug that day and threw up about 15 straight times.  I missed the holter device every time though.  It is a good thing I am better at Angry Birds.

I got the results back for the test a few weeks later and they said so far my heart is “mostly normal”.

I was not happy about all the electrodes they put on me!

I am pouting. 😦

Sleep Journal

2:17 AM Monday

My sleeping has been getting really bad so Mommy said I needed to start a sleep journal.  It is just past 2 AM and I’m wide awake and hurting.  I’ve been sick since Thursday of last week.  I must have set a new world record throwing up 15 times in a row last Friday morning when Mommy was watching me.  You should have seen the distance I was getting on my vomit!  Mommy took me to the doctor and she gave me some stomach medicine that makes me stop vomiting.  My fever is up to 102 and that doesn’t make me happy either.  It is going to be a long day.

10:00 PM Monday

All day with no naps!  I knew I could do it.  I have been a total disaster today – crying, fussing, puking, and I have a fever.  This is the worst Nanny Brittany has ever seen me but I haven’t scared her away yet.  The night nurse just got here so now I have someone else to cry to.

8:49 PM Tuesday

It is now almost 24 hours since my last journal entry.

It’s been over 40 hours since I last slept!  Yes, that’s right over 40 hours.  I have been up since 2 AM on Monday.  I keep trying to tell Mommy and Daddy what is hurting me but they don’t understand my cries.

We had a busy day today seeing my geneticist and pediatrician.  The doctors just didn’t know what to say or do.  They have no idea what is wrong with me but I keep trying to tell them with my crying.  I heard someone say “oh he’ll get tired of crying eventually” – but I’ll show them.

Last night, I made the night nurse and Daddy hold me ALL NIGHT!  Every time she tried to put me down I would throw a complete temper tantrum.  When I don’t feel good, I just want to be held.

3:09 AM Wednesday

Wow do I feel good.  I finally got a full 3 hours of sleep.  Rested and relaxed now I can get back to my crying!

12:01 PM Wednesday

My Occupational Therapist just came by to try to feed me.  It didn’t work out so well as all I did was cry.  She is very concerned about my “attitude”.  Ha.  She said I am acting how I was months ago with all my crying.  She was going to call my pediatrician and tell on me.

9:01 PM Wednesday

My neurologist just called and gave me a prescription for something called Valium to help me sleep better.  Not sure I’ll sleep tonight either as staying up all night is kind of fun.  I’m starting to feel a little better now though.

Mommy lets me lay on the super-soft blanket when I am sick!

On Sunday, I was feeling a little better so Mommy fed me sweet potatoes!

My Videos

I am now starring in some videos on YouTube.  I am such a good actor if I do say so myself.  The Elmo video is pretty funny.

You can see them on my westinthomas channel (don’t forget to subscribe to be updated whenever I post new videos):

http://www.youtube.com/user/westinthomas

No More Mullet….

Today Mommy and Daddy took me outside and Mommy shaved off my hair.  I have no idea what she was thinking!  I was really trying to grow it out and I had a beautiful mullet in the making!

I secretly think Mommy wanted to cut it to make me look more like a blondie than a brunette.  The ends of my hair were similar to Daddy’s hair color and the new growth is more like Mommy’s hair color.

Funny thing is that even with my new hair cut, I still have more hair than Daddy.  🙂

Sporting the mullet

Mommy put a ponytail in my hair. 😦

See how my hair goes from brunette to blonde?

Look at how long my hair was and how it was blonde on one end and brunette on the other end.

All done!

Look at my blonde hair!

See how my hair used to be dark like Daddy’s?

Ultrasound

Today I got an abdominal and pelvic ultrasound.  Apparently I have to get these every three months until I am 10 years old to look for cancer since Costello kids have a 17% chance of getting cancer.  Initially I didn’t mind the jelly but then I started getting cold and just wanted to sleep so I started barking at the lady.  Mommy said the results all looked good!  Yippee!

Help me!

Some Of The Other Special Women In My Life

Every week I get to see Laurie and Mary Kay two times (well unless I am sick or unless they are sick).  Laurie is my physical therapist and Mary Kay is my occupational therapist.  I like them when they first come to visit but then they start making me do things I don’t want to do so then I play “possum” on them.  Yep!  I just close my eyes and act like I am asleep so they stop stretching me and doing other crazy things.  At least this way they let me lie down to do my exercises (while I am “sleeping”) instead of making me do terrible tummy time and the other exercises that I do not like.  They have caught me opening my eyes to see if they were still there so I need to be a little more sly about that.   Mary Kay feeds me orange stuff on Thursdays.  I like to spit it back at her.  LOL…  One time I hit Nanny Brittany, Daddy, and Mary Kay all in one spit!

Also today four ladies came over to do an assessment of me.  (Yes, Daddy said he was jealous!)  They played Peek-A-Boo with me, played with some toys, and rolled me over to my belly.  I was not too happy about that one.  At the end, they said I am like a 4 month old in my gross motor skills and like a 5 month old in my fine motor skills.  Hmmm.  I am 7 months old now so that doesn’t sound too good!  But, they did say I was at my age for cognitive skills.  Whoo-hoo!  I am actually “average” for something.  OK, so being average doesn’t sound that great but Mommy was happy with my performance that day.  Now I get to add a speech therapist and developmental specialist to my list of doctors and therapists!  I will be up to 16 different people now (12 doctors and 4 therapists)!  I really like my new speech therapist’s pink hair!  It keeps me awake!

The four women that came to evaluate me. The pink-haired lady is my speech therapist.

Nanny Brittany, Mary Kay, and Laurie trying to get me to do my “sexy baby” pose

Fire! Fire! Fire!

On Sunday, September 4th, we had a mandatory evacuation due to wildfires that were burning about 2 miles from our house.  There is really only one way out of our subdivision by car so we had to leave so we could get out in case the fire spread across the road.  Mommy and daddy packed up really fast!  My furry sister Jordan got to ride in the car with us.  I was mad at her for barking and was not happy about being woken up from my nap and thrown into my car seat.  So, Mommy and Daddy had to stop right after we got out of the neighborhood to calm me down.  It was nice though because then we got to see the flames and smoke from the fire (from a safe distance).  It was a sad sight.  😦

We drove to my hotel (The Westin!) at the Domain shopping area.  Jordan seemed to be pretty happy about it.  The hotel had lots of dogs evacuated from Steiner Ranch.  I got to sleep in the Heavenly Crib.  I am not sure why they called it Heavenly – it was hard as a rock.  😦  We got to see quite a few of our friends and neighbors there which was nice.  On Monday we  went for lunch with some of our friends.  Then Jordan got to go shopping with Mommy and my godmother Kelly (and furry Maddie and Rebel) but I had to hang out at California Pizza Kitchen with Daddy and godfather Eric.  😦  I really wanted to pick up some new threads so I was bummed…  

We got to go home on Tuesday.  It was probably for the best because I was really missing my bouncy chair.  Daddy went to Target and bought me a rocking chair instead of a bouncy chair to sit in at the Westin hotel but I didn’t like it that much.  Also, I was almost out of food since Mommy only packed one can of my special formula.  When we got home, Mommy and Daddy had to empty out the fridge since the food was bad due to power being lost.  It didn’t take them long though since they didn’t have any food in there to begin with.  I did hear that my “Mommy Juice” that was being stored in our friend’s deep freezer was lost due to the power outage.  I wasn’t too disappointed about it but Mommy was a little bummed.  She said it took her a long time to make that juice for me. 

Our house was not affected by the fires.  The firemen did an amazing job and only about 25 homes were completely destroyed and 50 damaged.

Daddy and I posing with the fire in the background. I was CRABBY!

Fire over our neighborhood and the line of cars evacuating

“Dislike” the Westin Heavenly Bed

Sleeping in the stroller we borrowed from the Westin at California Pizza Kitchen

The Special Women In My Life….

I would like to introduce you to my nannies.  This summer, Nanny Jennifer took care of me.  She was a lot of fun but she left me to go back to Ohio to study to become a minister.  She already has a Bachelor of Science in Nursing degree from Ohio State.  Mommy and daddy were not too happy about her college choice.  Why would she want to go to a college that has a nut as its mascot? 

After Jennifer left, I got a new nanny.  Her name is Brittany and she is a true Texan!  She is only 20 but she is turning “legal” soon.  I don’t quite know what that means.  She plans on going back to school to study Early Childhood Development.  I don’t know why though?  Surely she can’t leave me?

I also have had various nurses come and go.  Right now Miss Mary comes on Saturday and Sunday during the day to take care of me and Miss Jennifer comes Monday and Tuesday nights.  Miss Mary is so nice and often brings Mommy and Daddy Chick-fil-A and she brings me toys too!  Mommy wouldn’t be able to go to work on Wednesday if Jennifer wasn’t helping watch me at night (when daddy is traveling) since I like to wake up 15 times some nights and other nights I wake up only 10 times but then I play from 3-5am.  🙂

Cuddling with Nanny Jennifer

Tummy time on Jennifer (I wasn’t too happy about tummy time)

Sitting on Nanny Brittany’s lap before my ultrasound

Practicing my sitting on Nanny Brittany

Yeah! They Are Finally Feeding Me!

So on Monday, August 22, my mommy took me to the hospital and fed me some gross white chalky stuff.  I guess this was called a modified barium swallow study.  Well, apparently I passed because the next day my Mommy and my occupational therapist fed me some orange stuff.  I must say the orange stuff was pretty yummy!  I was so giddy that I spit the orange stuff all over my therapist.  She said that is why she wore her orange Texas Longhorn shirt that day!

A couple days later my mommy and daddy fed me something that was yellow.  They said they were bananas.  Well, apparently, I don’t like bananas because I threw them up on two different occasions.  I think we will stay away from those in the future!

Then they started giving me lollipops!  Yippee!!  Although, I was not a fan of the cotton candy flavor.  Daddy knows to only give me grape lollipops from now on since those are my favorite!

Dressed in my hospital gown for the Modified Barium Swallow study.

Hmmm..

Watch out ’cause I am going to spit this all over you!

Squash? Really???

Grape Lollipop! Yum!