Thursday, December 31, 2009

Wednesday, December 30th, 2009

Dax Ryan Locke - 6/26/07-12/30/09
Tuesday night, Mommy decided it was finally time to take down the Christmas tree and she got a picture of the tree stripped of all it's glory. Maybe she shouldn't have been surprised when she got notification early the next morning that just a few hours later, Dax had passed away. Dax had defied the odds and made it to Christmas but wasn't able to hold on until 2010. Like many following Dax's story, Mommy took great meaning in the message - Cherish Every Moment. If you would like to order a bracelet to remind you each day you can do so here:
There is still time today to make a year end donation to St Jude on his behalf:
Peyton Nicole Smith

Tuesday, December 29th, 2009

When I got my Children's Craniofacial Association newsletter for Fall of 2009 imagine my surprise when I showed up in a picture with Daddy on page 17! Go check me out!

Peyton Nicole Smith

Monday, December 28th, 2009

One final gift awaited me when I came back from Salt Lake - my Little Tikes dollhouse. As of now, I am using dolls and furniture on loan from SCOE but my parents plan on locating some furniture and dolls of my own. Although the house is large, I can't quite fit through the front door!
Peyton Nicole Smith

Sunday, December 27th, 2009

Although I slept great last night, my parents were pretty restless in anticipation of leaving this morning. Uncle Jeff and Daddy took the luggage and returned the rental car while Mommy and I got a ride to the airport from Aunt Kristin and Uncle Lonnie. Then, we all met up at the terminal to check in. The airport was busy but not crazy as they had anticipated. The security lines weren't too bad, either. Mommy and I met a screener who has a child with developmental disabilities who is wheelchair bound. She has a suction machine at home for her daughter as well and she was completely at ease with me and my machines. She asked a few questions about me and helped Mommy get all my stuff through security and back into my stroller which Mommy appreciated. Since we were early, I took walks around the airport with Uncle Jeff and Mommy while clutching tightly my See's lollipop. With two extra sets of hands this time it was no big deal to get all my stuff and me on the plane and I settled in for the flight home.

After Uncle Jeff's unfortunate flight out, the flight back was pretty smooth. The flight left on time and because it was a bigger plane he got to watch ESPN on the TV which made the flight go by much faster. I enjoyed my Barney video until the battery died. Once we landed, it didn't take long to get all my luggage and we started to head towards the parking garage when Daddy remembered we had forgotten one - the medical bag. Luckily he was able to go back quickly and get it. On the way home I fell asleep still holding my lollipop.

Once we got home, I woke back up and my parents got all my machines set up so I could take a nap. I was so excited to get home that it took me almost 2 hours of rolling around in my bed to fall asleep - I spent most of that time having conversations with each of the stuffed animals and dolls I had left behind catching them up on my time away. While I was asleep, Daddy went to go get my furry brothers and I was very happy to see them when I woke up.

Despite cold meds, when the plane was landing Mommy's ears refused to pop and she was pretty miserable most of the night as the pressure resulted in a lot of pain. She went to bed early while Daddy got me down for the night. I think both my parents were pretty happy to have a night nurse tonight so they could get an uninterrupted night's sleep!

Peyton Nicole Smith

Tuesday, December 29, 2009

Saturday, December 26th, 2009

We all had an uneventful night last night and although my stomach flu seemed to have passed I started having some symptoms of a cold and so did Mommy. Even so, I was in a much better mood and the crew headed to The Fox Hole for lunch. Aunt Kristin got shirts made up for everyone with the Fox Hole logo - you can see my sporting it above while I showed Uncle Shawn how to sign "fox".
When Jackson and I got sleepy, we headed back to the house while Uncle Jeff and Daddy headed down to Cabela's (Daddy's favorite place in the world). After nap time we went to Grandma and Papa Smith's house to say goodbye since we are flying back to Salt Lake in the morning. My coughing had increased and Mommy wasn't feeling great either so we stopped to get some cold medications before getting back to Aunt Kristin's. I played with Jackson for a little while until I started coughing up blood. It is much drier in Utah then California and despite the trach mist during sleeping hours and trying to keep an HME on me during waking hours I still get dried out. My parents did a quick trach change and then got me to sleep so they could begin organizing everything to go back to Sacramento.
Peyton Nicole Smith

Friday, December 25th, 2009

After jumping around on the bed last night in my monkey jammies my parents figured I was over my quick bout with stomach flu but they were mistaken. At 4 am I woke up and started crying and a few minutes later I started vomiting again. This time there wasn't much in my tummy. Mommy changed my jammie shirt and I went back to sleep a little longer. By early morning it was time to get up and see what Santa brought but I was grumpy and didn't feel much like opening presents. My parents started me back up on Pedialite but I kept signing that my tummy hurt.
There was a mad dash to open presents by my parents, Uncle Lonnie, Aunt Kristin, Jackson, Uncle Shawn and Gavin before Shawn and Gavin had to leave. Uncle Jeff came up a little later and then a second round of present opening began with his gifts. Uncle Jeff and Gavin both love the Miami Dolphins so they compared the gifts they had received with the Dolphins logo.
After Shawn and Gavin left, Uncle Jason and Traiton came by. Traiton had been up all night vomiting as well so he wasn't in much of a mood to open presents either. Grandma and Grandpa Mower came by a little later and then it was round three of opening presents. I got lots of fun toys from them but still was not feeling well enough to want to play too much.
I was still holding my feedings down but was pretty tired so I went down for a nap mid-morning. When I woke up I was in a little better mood, so Uncle Jeff, my parents and I went to Karen's for Christmas dinner. Karen made a great home made vegetable soup that hit the spot on such a cold winter day. I was still pretty grumpy until Nikki, Michael and her three girls showed up. Suddenly, my mood improved dramatically! The girls were fascinated by all the things about me that were different - my trach, my g tube, my signing, my hands - and they followed me all over the house which was fine by me. Before it got too late, we started into round four of present opening. I'm pretty much an expert at this point and even helped Daddy open Mommy's presents for her.
Despite the tummy troubles, it was a wonderful Christmas Day and I got lots of great gifts. Thanks everyone!
Peyton Nicole Smith

Thursday, December 24th, 2009

Due to the vomiting last night, my parents started me out slow and easy this morning with a little bit of Pedialite. As the day went on, they started adding some 20 kcal soy formula in with it and thankfully I held everything down.
Mid-morning Mommy, Daddy, Uncle Jeff and I went to Joanna's Kitchen for a late breakfast. Last year when we went on Christmas Eve day it did not end as well (remember the exploding diaper incident in the high chair?). My parents got to enjoy their meal and the scone this time! After breakfast, they made a quick stop at the grocery store before heading to Grandma and Papa Smith's house for the day. Papa was working until the early afternoon but Grandma Smith was off and she was at the airport getting Uncle Steve (his flight was delayed too). I had a little play time before it was nap time. Mommy and Daddy had brought my trach mist machine and they had some trouble getting it working. Good thing Daddy is handy and after taking it apart and fiddling with a few parts he got it back up and running. Mommy stayed next to me on the bed while I slept. By the time I woke up the entire Smith clan was home and we sat down for a nice turkey dinner. After cleaning up and burning off some of the food we gathered around the tree and opened our gifts. I got lots of wonderful things but my favorite was a book from Grandma and Papa. It was "The Night Before Christmas" and as I turned each page Papa's voice read the story to me. So even when I am far away in California, I can pull out the book and hear Papa read to me.
Peyton Nicole Smith

Wednesday, December 23rd, 2009

The antibiotics are doing their job and Karen was feeling much better so we went to her house tonight for dinner. I loved all her stairs and spent much of the time pulling Karen and Mommy along with me as I explored the house.

Daddy and Uncle Jeff's flight was scheduled to come in at 8:30 tonight so Mommy figured she would just leave from Karen's house to head to the airport. Daddy called her, though, to let her know the flight had been delayed about 20 minutes for deicing when the plane was coming from Salt Lake. Once Daddy said they were on the plane she tracked it on Delta's website. Just as she was getting ready to head to the airport she got a call from Daddy. She figured it was too early for the plane to land in Salt Lake. Apparently the deicer was still not working correctly and they had to turn the flight around back to Sacramento about the time they hit Reno. Uncle Jeff hates to fly and that combined with the small plane (you can feel everything) he was about ready to get off the plane and drive to Salt Lake. Once they announced the deicer was fixed, Uncle Jeff had a little pow wow with the pilots to get assurance all was well before he committed to finishing the flight. Needless to say, he got a lot of ribbing from the other passengers and the flight attendant for the remainder of the flight!
Since it was getting late, Mommy and I headed back to the house and Uncle Lonnie agreed to go pick them up instead. Good thing, because a few minutes after arriving home, I threw up all over Mommy! She got me changed into my jammies and down to sleep and then she waited up for Daddy. She was thrilled to see him and couldn't wait to turn over night nurse duties to him so she could get some sleep. I woke up a few hours later and signed "hi Daddy" and then sang and signed for him for about an hour before falling back to sleep.
Peyton Nicole Smith

Tuesday, December 22nd, 2009

Since my cousins were feeling better, I got to go back to Grandma and Papa Smith's house tonight for dinner and we got to play. Skyler is a teenager now, so he spent some time at his friend's house, but cousin Dylan is closer to my age and he loved showing me around the house. We had a great time together!
It had been snowing pretty heavily all day and when it came time to leave, Mommy was a little concerned about driving me back to Aunt Kristin's house. Papa Smith said he would follow behind us all the way home to make sure we arrived safe and sound. Mommy was so grateful knowing he was behind us and we got home just fine. Thanks Papa!
Peyton Nicole Smith

Monday, December 21st, 2009

This morning, I went with Mommy to work to visit everyone at the Health Plans. I had a great time walking around saying hello to everyone and spent some time with Peter who helped sign and sing "Rudolph the Red Nosed Reindeer" with me. I also went downstairs to the Pharmacy area where Aunt Kristin works and met the folks she works with as well.
Peyton Nicole Smith

Sunday, December 20th, 2009

With complete terror, Mommy and I joined Aunt Kristin, cousin Jackson, Uncle Jason and cousin Traiton to go visit Wade and Paul's house. Now if you have never been to their house it is beautifully decorated for Christmas but it is in no way child friendly! Every room is decked out with all kinds of breakable ornaments, glass snow globes and other Christmas items. With three small children running around Mommy was terrified of all the potential cherished items that may not survive the visit.
Luckily, we discovered a reindeer that sang and danced and that seemed to keep our attention for a while. I had a great time chasing their dog, Shadow around the house. She didn't seem to mind all the hugs and kisses I gave her. Cousin Jackson immeadiately discovered a glass table top with a stone base because it had a beautiful snow globe on top. When he leaned on the table to look the globe the top (which was not attached to the base) started sliding off along with the globe. Good thing Wade was close by to remove both from harms way and then the stone base became a great place for all three of us to sit - like a throne! Cousin Jackson is coming down with a cold so it wasn't long before we needed to hit the road so he could get some Tylenol.
We were supposed to go visit Karen tonight but she is also coming down with something so while she is waiting for the antibiotics to kick in we decided to head to the mall to go see Santa. Last year it was the three of us - Santa, me and Jackson - so we decided to try it again this year. I cried last year and Jackson was oblivious to all the drama surrounding Santa's lap. Santa was set to stay until 6 pm, so when we all showed up at 5 pm we were surprised to find they cut off the line behind us. Apparently, they cut off the line up to an hour ahead of time so that everyone has gone through the line by 6 pm. Lots of families and kids showed up after us but were turned away. I was super excited to stand in line and wait for Santa and I got anxious when I couldn't see him. Jackson was still not feeling well so he was entertained by washing the floor with the wipies in my diaper bag and eating a sucker from See's. The girl in front of us in line was a little older and she waited so long she ended up peeing her pants - good thing for those wipies of mine! When the big moment arrived, I had no problems sitting on Santa's lap. I kept signing "shoes" and pointing my patent leather shoes out to him. Cousin Jackson was a hard sell and Aunt Kristin ended up having to sit next to Santa with Jackson on her lap to get the picture.

Peyton Nicole Smith

Saturday, December 19th, 2009

After another good night's sleep we were up and on the go early this morning so Mommy could have her hair cut and colored. While she was being worked on, Aunt Kristin and I wandered the strip mall and got some fun presents for Jackson and I to play with.
After my nap today, we went to Grandma and Papa Smith's house for dinner. Aunt Ruschelle and my cousins weren't able to come by because Dylan and Skyler were both sick with a cold and didn't want to expose me. So the four of us had some time to play together. The Smith household is full of animals at the moment - Pandie the dog, four cats and fish. I never got tired of having Papa take me downstairs to look at the fish. Pandie loves to kiss me and sit on my lap and we had a lot of fun together. I had to bop her on the nose a few times when she stole my crackers but we are still good friends.

Peyton Nicole Smith

Friday, December 18th, 2009

When I woke up this morning, I got a few minutes to play with cousin Jackson before he left with his nanny for the day. Mommy and I got a few things organized and then we went to Uncle Shawn's new pub The Fox Hole for lunch. It was quiet so I got to run around the place with Uncle Shawn and then while they ate I drank a little soda and danced to the music overhead.
We went back to the house for nap time and then after I woke up it was time to head to Grandma and Grandpa Mower's house for dinner. Uncle Jason and cousin Traiton were there to play with me. After the stress of sitting on Santa Claus' lap last year, Mommy wasn't sure how I would respond to the life size Santa that talks, sings and dances in Grandma's entryway. No need to worry, I loved him and asked Grandma to push the button over and over so I could dance and sing with him.

Peyton Nicole Smith

Thursday, December 17th, 2009

The big day has finally arrived! Daddy packed up all my machines this morning while Mommy spent the morning working. Before I knew it Mommy and I drove to Daddy's work so he could help us with the luggage and take the car back. The airport was dead so we were the only ones in line waiting at the Delta counter to check in my bags. Since I am considered disabled, any luggage that I check with my medical supplies or machines I don't get charged for. Good thing since I had two bags to check with all that stuff! And just look at all my carryon items:

Diaper bag (includes medical supplies)

Suction machine

Feeding pump

My lunchbox with toys

Portable DVD player


Stuffed Santa Claus


Luckily, it would all fit in the stroller and we were able to check the stroller at the gate itself. Security was also pretty quiet and since everything (including my stroller) had to go through it was a good thing! Mommy and I were extra early just in case so I played with my toys, watched my new Barney DVD and looked out the windows at all the plans taking off and landing. Soon it was time to board and since it was such a small plane there were only two seats on each side. Mommy let me have the window seat and I settled back for take off. It was 4 pm by that time and I had not had a nap or pooped all day. Mommy was sure once we got on the plane I was going to have a blow out diaper but she (and all the other passengers) got lucky. Due to the lack of a nap towards the end of the flight I got a little antsy but all in all I was a very good passenger. As we were headed towards the gate after landing Mommy looked over and I had fallen asleep. Too late for a nap now - Mommy kept poking me to keep me awake so I could get off the plane on my own. We didn't pull directly up to a gate but to a ramp and the stroller was waiting at the bottom. So Mommy needed me to walk down the ramp ahead of her so she could carry all the stuff. I didn't really know to hang a left to get to the ramp and just kept walking straight up the aisle into the cockpit! Thank goodness the pilots didn't seem to mind. Eventually, we got down the ramp and Mommy got me in my stroller and off we went to baggage claim. If Mommy thought Sacramento was quiet Salt Lake was completely the opposite. Apparently, every missionary in the world was coming home and all their family members had come out to meet them. It was a madhouse! Eventually, Uncle Jason and cousin Traiton met up with us and helped us get all the luggage to the rental car.

It was a short 15 minute ride to Aunt Kristin and Uncle Lonnie's. While Mommy got all my machines set up for the night, Uncle Jason worked on getting Traiton's toddler bed set up for me to sleep in. Luckily, Grandma Mower was on hand to play with me (although cousin Jackson was not so happy to share her!)

Mommy and I were both exhausted and ready for bed and I got into bed without too much of a fight and off to sleep. Since Mommy is my night nurse for the next 10 days I was pretty easy on her!

Peyton Nicole Smith

Thursday, December 17, 2009

Wednesday, December 16th, 2009

It's the final count down! And the challenge whenever I travel is how to get all that above (6 pieces of medical equipment and countless supplies) organized and packed. Since most of my medical supplies can't be purchased at the local Rite Aid it's a very detailed process to make sure nothing I might need is left behind.

Daddy will assist Mommy and I getting checked in at the Sacramento airport and my Uncle Jason will be waiting on the Salt Lake end to get the luggage, car seat and rental car situated. It really does take a village to travel with a child!

Peyton Nicole Smith

Wednesday, December 16, 2009

Tuesday, December 15th, 2009

The troll doll in pristine condition

The troll doll after the incident

I am sad to report a casualty in the Smith household. Mommy let me hold the Chanukah troll doll this afternoon and then forgot about it. She and I ran an errand and when we got home, Mommy noticed blue hair all over the house. Horrified, she went looking for Henry Lee since he is a notorious chewer. She followed the blue hair trail under the bed and there was the troll doll minus the hair. Henry could not very well deny the evidence as he had blue hair stuck in his teeth. Good thing for Ebay - Mommy already has a bid out on a replacement troll doll for Uncle Jeff.
Peyton Nicole Smith

Monday, December 14, 2009

Monday, December 14th, 2009

Karen, my occupational therapist, felt a cold coming on today so she wasn't able to stay and play but she left me with some dolls and doll house furniture. I have it on good authority that I may receive a doll house in the future so Karen thought it would be a good idea to bring the doll house accessories and see if I was at an age I would use them. They were definately a big hit!

Peyton Nicole Smith

Sunday, December 13th, 2009

It was day two of the Chanukah celebration and I am already a big fan. I had no trouble picking out a present from under my little tree and waiting until the candles were lit to open it.
Peyton Nicole Smith

Saturday, December 12, 2009

Saturday, December 12th, 2009

Today began with my last dance class. Since it was the last class, Daddy and Uncle Jeff were able to come watch me perform. It was very hard to concentrate, though, and I spent most of my time running back and forth between Mommy and Uncle Jeff and very little dancing actually got done!
My parents and I had some errands to run during the day but in the evening Uncle Jeff came over to help us celebrate the first day of Chanukah. Uncle Jeff is Jewish and so he decided it would be a good time to start introducing my parents and I to the traditions of Chanukah. For those of you out there who aren't familiar with Chanukah here is a little background information from
Chanukah -- the eight-day festival of light that begins on the eve of Kislev 25 -- celebrates the triumph of light over darkness, of purity over adulteration, of spirituality over materiality.
More than twenty-one centuries ago, the Holy Land was ruled by the Seleucids (Syrian-Greeks), who sought to forcefully Hellenize the people of Israel. Against all odds, a small band of faithful Jews defeated one of the mightiest armies on earth, drove the Greeks from the land, reclaimed the Holy Temple in Jerusalem and rededicated it to the service of G-d.
When they sought to light the Temple's menorah, they found only a single cruse of olive oil that had escaped contamination by the Greeks; miraculously, the one-day supply burned for eight days, until new oil could be prepared under conditions of ritual purity.
To commemorate and publicize these miracles, the sages instituted the festival of Chanukah. At the heart of the festival is the nightly menorah lighting: a single flame on the first night, two on the second evening, and so on till the eighth night of Chanukah, when all eight lights are kindled. On Chanukah we also recite Hallel and the Al HaNissim prayer to offer praise and thanksgiving to G-d for "delivering the strong into the hands of the weak, the many into the hands of the few... the wicked into the hands of the righteous." Chanukah customs include eating foods fried in oil -- latkes (potato pancakes) and sufganiot (doughnuts); playing with the dreidel (a spinning top on which are inscribed the Hebrew letters nun, gimmel, hei and shin, an acronym for Nes Gadol Hayah Sham, "a great miracle happened there"); and the giving of Chanukah gelt, gifts of money, to children.
Uncle Jeff brought a menorah for me to "light" that was made of fabric and he also brought a traditional metal menorah for him to light. We also got to play spin the dreidel and then I got to open some of my Chanukah gifts since Mommy and I leave town before Chanukah is over. One of my gifts was a stuffed Chanukah doggy who is holding a dreidel. We nicknamed him "Gimmy" for gimmel - one of the Hebrew letters on the dreidel. My parents and I had a very special time tonight learning more about the Chanukah customs from Uncle Jeff and are honored he wanted to share them with us. Happy Chanukah!
Peyton Nicole Smith

Friday, December 11th, 2009

This is the story of my short lived time with Santa today.
7 am - Mommy takes out the Santa Claus statue for the first time this year. It was love at first sight and I am officially smitten.
7:02 am - Despite Mommy's protests that Santa is too heavy, I carry Santa from the bedroom to the front room so I can be close to him.
7:04 am - I set Santa on my special chair and read him a story.
7:05 am - I read Santa another story and then pose with him for a picture.
7:07 am - I carry Santa from my special chair to my bed. Mommy assists in lifting him up for me.
7:08 am - I lay down next to Santa in my bed. I am so excited to add him to my collection.
7:11 am - I carry Santa to the hallway so he can watch me as I run back and forth.
7:15 am - I try to pick Santa up and carry him back to the front room and I drop him.
7:16 am - Santa breaks off at the legs and I start laughing.
7:17 am - Daddy carries Santa into Mommy's office to see what can be done for him. Mommy declares him DOA.
I wonder if Santa is rethinking that video he sent me yesterday?
Peyton Nicole Smith