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!!
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!
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.
‘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!
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!”
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?
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!
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.
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!
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.