Tuesday, August 31, 2010

Monday, August 30th, 2010

Today is my trachieversary - three years ago today I got my trach put in. You can see a photo of me above just hours after surgery with it in. My parents were super excited to see my nose for the first time without all the tape and tubes in the way! I know Mommy never expected I would still have my trachie three years later but as you can see in the other photos above - it doesn't stand in the way of much that I want to do. Tonight I tried on my new leather shoes that Grandma got me in Yellowstone and asked for my tutu and twirled around the room until I was dizzy! Then I went on to paint a masterpiece on my new easel. So I got a trach - so what?

Peyton Nicole Smith

Sunday, August 29th, 2010

The pictures are in! Jennifer did a great job! You can see more of our photos at her blog (just scroll down until you find Jackson and I) at:
Peyton Nicole Smith

Saturday, August 28th, 2010

Welcome Coco to the family! OK so my parents didn't adopt her but Grandma and Papa did. I think Papa liked Henry being a lap dog so much that he was willing to give a doxie a chance. Coco is a wire haired doxie about a year old and super tiny. The boys dwarf her! Small as she may be, she has already let Henry know several times not to mess with her - she just got spayed on Friday so she is still healing and very sore. Daddy has been pining away for a female doxie and he is just a tad jealous that his parents got to her first!

Peyton Nicole Smith

Saturday, August 28, 2010

Friday, August 27th, 2010

Happy birthday to me! I turned 3 years old today. Since I already had my birthday party on Wednesday, it was a quiet day. There isn't preschool on Friday, so Grandma and I got to have a relaxing morning. In the afternoon, we met Mommy at Primary Children's Hospital for my pulmonology appointment.
Mommy had always been told by the ENT's at UCD that I didn't need to be followed by a pulmonologist - they said just because I have a trach doesn't mean there is anything wrong with my lungs so there was no need to be referred. Mommy understood that part, but when I would get a cold it would be so severe most of the time I ended up hospitalized so eventually, Mommy scheduled with an outside pulmonologist in California. At that time, I was healthy so Mommy was told to follow up as needed.
When we moved to Utah and I was hospitalized in May at Primary Children's for an URI, the attending doctor suggested it might be a good idea to get in to a pulmonologist so today was finally the day. Dr Uchida was running right on time and got right to business. Mommy explained that at my last hospitalization she was given a new term by the doctors - "reactive airway". My pediatrician in California had previously given my parents medication and a nebulizer to use when I was sick but because I was usually hospitalized in the first 24 hours of a cold, they never had a chance to do much to help. After they discussed my previous history, Dr Uchida gave his recommendation. I am considered asthmatic and to this point my trigger has been a cold. As long as I am healthy, my asthma stays in control but when I get a cold, the swelling increases, the muscles tighten and the increased secretions build up and suddenly it becomes very difficult to breathe. Although I had two nebulized medicines they weren't doing much good because very little ended up in my trach and they were started after I was already well into an asthma attack. So here is Dr Uchida's new plan. During my "green" days I will get two puffs from an inhaler. Since I am not quite a mouth breather all the time, I will get a special spacer that will attach to my trach and to the inhaler. When the inhaler is pushed it will store the medication in the spacer and keep it there until I can breathe it all in so I don't lose so much of it. I will also get some Singulair granules mixed in with some formula through my g tube every day. These are considered the preventive medications to hopefully keep me from having an asthma attack. My "yellow" days are those when I am starting to have symptoms like coughing and labored breathing. Then I will get more puffs of my inhaler and some quick relief from Xopenex as well. Should I get to the "red" zone (the previous meds aren't helping) I also have a liquid steroid to take through my g tube as a last ditch effort before heading to the hospital. Despite having to take daily medications now, Mommy is relieved that there is a plan in place that might prevent such serious reactions to a cold - espescially now that I have started preschool and I am bound to get sick more often. Mommy and I picked up three of the four meds - so when the Singulair comes in on Monday as well as the spacer we will start with our new asthma plan of care.
Uncle Jeff and Aunt Viv came by tonight. Although they attended my birthday party, Uncle Jeff doesn't believe in giving presents except on the actual birthday so he brought his present with him. I was super excited to use my new easel - it is just my height and has one side with a dry erase board and the other side is a chalkboard. Perfect!
Peyton Nicole Smith

Thursday, August 26th, 2010

After all the excitement of yesterday I was a little tired when I went to preschool today. Chloe showed up today and Grandma Glenda told Mommy that I made friends with her pretty quickly. During circle time, I reached over and held her hand and then later, put my arm around her shoulder and patted her. Ethan was super sweet and brought me a home made birthday card today. I brought some of the animal cupcakes Grandma Marilyn made to class today so my classmates could help celebrate my birthday.
In the evening, I got to play with some of my new toys and first on my list was my new bike that my parents got me. Daddy, Mommy and I took it out in the neighborhood and even with my cast I hopped right on and rode.
Mommy put the new Disney princess bedding on my bed and I got settled in for some reading before bedtime but my tummy was upset and I threw up all over it just a few minutes later. Oops! Mommy promised to get it washed up tomorrow and back on my bed.
Peyton Nicole Smith

Wednesday, August 25th, 2010

What a big day it was today! Not only was it my first day of preschool but it was also my 3rd birthday party. Mommy took the day off and Daddy went into work late so the two of them could come with Grandma Glenda and I to my preschool class. I was a little early and had a few minutes to check out the classroom before it was time to head outside to meet the vans pulling up with the other kids. Eventually, I may come to school in a van as well but for the moment Grandma Glenda is bringing me.
There are four classrooms - two for 4 year olds and two for 3 year olds. There are eight 3 year olds including me. Since there is another 3 year old named Peyton (yes spelled the same way although this is a boy) they decided to split us up into two different classrooms. So in my class are Rico, Ethan and Chloe. Chloe didn't come the first day so it was me and boys. Once I was settled with Grandma, Mommy and Daddy left. Right now the school district does not have a nurse available so Grandma Glenda is coming to class with me as my "nurse".
Although preschool goes from 8:30 to 3:00 Monday - Thursday my parents are choosing to have me attend just 1/2 day for now. Grandma and I stayed through lunch time and while the two boys went on to rest time, I went home. It was a fun first day and my teacher Sarah is great! I am already fast friends with Ethan and can't wait to meet Chloe.
With all the excitement I fell asleep on the car ride home. After I woke up, Mommy came to pick me up. We needed to go pick up some pizzas before heading to my party. We met up with Aunt Kristin, Carolyn, Noy and her two girls so they could follow Mommy since it is pretty far away. When we got to Ivie Acres, Daddy was already there and we had a few minutes to set up before the guests started to arrive. I was in heaven! They saddled up two of their ponies - Gilligan and Marshmallow - for us to ride. But they had tons of animals - bunnies, chickens, geese, yaks, camels, pigs, donkeys, pigmy goats - the list goes on and on! All of the animals were very friendly and we got to feed and pet them. But my favorite of course were the ponies. When Mommy tried to have me open my presents I cried and whined until she finally gave in and opened the presents herself while I went on another ride!
Grandma Marilyn made my birthday cake - it was a barn and the cupcakes were different farm animals. It was super cute!
It was so much fun to have my family and friends at my birthday party and I got lots of great gifts. Thanks everyone for attending!

Peyton Nicole Smith

Tuesday, August 24th, 2010

We took advantage of the new Outpatient Primary Children's location at Riverton Hospital for my CT scan today. It is so much faster to get in for services there and the hospital is not busy at all so parking is easy.

So this was definately a lesson learned for Mommy. At UCD, all my CT scans were done with general anesthesia with a tube directly to my trach. Very quick and easy. Primary Children's prefers doing IV sedation. Now as all of you know, I am a difficult stick during the best of times. But add on one arm being casted the nurse is already at a disadvantage because those potential IV sites aren't options any longer. In addition, being just a few days post-surgery most of my other veins are blown from that surgery! The nurse was persistant, though, and found a site in my hand that worked and it didn't take more than about 10 minutes to get me hooked up. A quick dose of Versed through the IV and I was nice and relaxed. Then a dose of Ketamine (known as Special K on the streets) kicked in and the lights were on but nobody was home! Perfect conditions for a CT scan and it was only a few minutes later I was sitting in Mommy's lap in recovery. Whew - glad that is over! So Mommy has learned not to schedule any type of procedure that requires an IV when a. I have a cast and/or b. I just had surgery and my veins are blown!

Peyton Nicole Smith

Monday, August 23rd, 2010

Sponsors to date:

Paul and Wade
Go Peyton! Love Paul and Wade

Kaila & Ava Ebert
Go Peyton!!!

Russell and Glenda Smith

Great Grandparents Joyce and Larry McKenney

Michael Kelly

Karen Edwards
Go Peyton!!!!!!!!

Tina Majers

Jackson Smith
LOVE my cousin P!

Secret Admirer

* Total raised online:
Amount raised offline:
Grand Total:

We are doing awesome - only $10 away from my goal for HopeKids. Thanks everyone for participating!

Sunday, August 22nd, 2010

After a fun time playing at Aunt Kristin and Uncle Lonnie's house for Chloe's birthday, it was time for my first bath with my cast. As if a trach didn't make the bath experience a little complicated add a cast!
Peyton Nicole Smith

Sunday, August 22, 2010

Saturday, August 21st, 2010

I was getting back to my normal routine today, but moments before leaving for the Craniofacial Picnic, I vomited again while getting a feeding. Just 30 minutes earlier Mommy had given me a suppository since the Tylenol with codeine can be constipating. Although she got a decent diaper my tummy was still too full. A quick outfit change, though, and we were on the road since I still wanted to go to the picnic. Unfortunately, I was not prepared for two team mascots - a Bee for the Buzz and a bird for the University of Utah. I was terrified of both of them and after several peeks in the room, Swoops scared me so badly that I wouldn't go in any more so my parents left. I did manage to swipe a cookie though so I didn't leave empty handed!
Peyton Nicole Smith

Friday, August 20th, 2010

I was up bright and early at 5:23 this morning and feeling good. Since I hadn't peed overnight, Mommy gave me a quick feeding and then got me up and walking around the unit by 6:30 to try to get a wet diaper out of me. Always the high performer, I gave her three within 30 minutes making both her and the nurses very happy - I had passed the final test. Dr James stopped by a little after 7 am and started the discharge paperwork. Mommy kept it together thankfully and didn't embarrass me with a ton of tears! Daddy came by around 8 am and by 8:30 we were walking out the doors. We had a bittersweet photo op in front of the Shriner's and got a shot of UC Davis across the street. We had three stops before we could get on the road. First, we had to check out of Ronald McDonald House a few blocks away. Then on to Walgreens for my Tylenol with codeine prescription. Finally, we went through a drive through for some breakfast and by 9:30 we were on our way home to Salt Lake.
It was a pretty uneventful trip until around 4 pm. While napping, I woke up briefly and vomited up a tiny amount of formula. A short while later, I woke up and this time vomited up most of my feeding. Mommy was quick with a blanket to catch it before it got on my new cast. Thankfully, we were 5 miles out of Wells so we stopped so I could walk around. Since 7 in the morning, I had not peed but as soon as my feet touched the ground I had an enormous diaper. No wonder I was vomiting - my tummy was completely full. On a positive note, this convinces Mommy again that I am completely ready for potty training as I can stay dry for long periods of time!
After the vomiting and diaper I was feeling perky again so we were back on the road and a few hours later pulled in to Grandma and Papa's house to pick up my brothers. We were home by around 10 pm but it took me until after midnight to finally settle down enough to fall asleep. Mommy slept on the floor in my room to keep an eye on me and I had a quiet night. Good to be home!

Peyton Nicole Smith

Thursday, August 19th, 2010

Although I would not be headed into surgery until close to 11:30 we were supposed to report to the hospital at 8:00 am. So my parents and I got up and got ready. As we headed out of Ronald McDonald House, I had my princess purse slung over my shoulder. We had a few minutes to spare, so we walked over to UC Davis next door and travelled the familiar hall ways until we reached the NICU.
Because they knew they would be back for my surgery, my parents really hadn't dealt with the sadness of moving so much. But as they pulled into Sacramento last night Daddy kept remarking "This will be the last time we ..... (fill in the blank)." Knowing they may not be back again for a long time (maybe never) they decided to do a few photo ops. First up was a photo of me in front of the NICU doors. My parents spent every day for six weeks visiting me - Mommy often came twice a day - so every inch of that hallway had been memorized. It was an emotional moment for my parents seeing me walk up and down the hallway when the last time they were here it was to take me home after my six week stay. They were terrified to take me for the short ride home by themselves a few short years ago and now they had just travelled 10 hours without a second thought.
With tears in Mommy's eyes, we headed back to Shriner's for check in. As usual there was lots of hurry up and waiting. We talked with parents of several other children having hand surgery in the waiting area. There were some preop measurements and questions and they asked me what color cast I wanted - you probably aren't surprised I picked pink right? A few minutes later, though, Daddy vetoed me and chose purple since pink gets so dirty.
Around 10:30 they called us back to the preop room where they met with Dr James and the anesthesiologist. I was very serious and shook hands with every member of the medical team - just like my parents. While I played with some toys, they got me some Versed and I helped push it in. The nurses were surprised at how long it took it to kick in but once it did I was pretty goofy. But when they came to take me away I was aware enough that I was crying.
While I went off to the OR my parents went to get something to eat for the first time that day. Mommy was dehydrated, hungry and stressed and was hoping some food would help with her massive headache. Not so much and she eventually walked over to the UC Davis gift shop to get some medicine. She tried to sleep a little while Daddy listened to his headphones and they waited. Three hours later when Dr James came out to talk with them, she was feeling a tad bit better. Dr James let them know that surgery had gone well although I resembled a pin cushion since it was hard to get the IV started. Because the growth plate in my triplicate finger/thumb was going the wrong direction, it was already starting to grow a little crooked. She moved the plate some during surgery and hoped that it would correct the problem going forward. Once I am done growing (around 13 or so) she may want to do one more surgery but I should be surgery free on my hands now for many years. Yeah!
A few minutes later, the nurse took Mommy back to see me in post op. The first words out of her mouth, "Man she is a fighter!" Sure enough, I was thrashing around in the bed none too happy to be waking up with a case on my arm. Without even opening my eyes, I kept crying and pointing to my case for Mommy to see what they had done to me. Mommy tried to hold me in the chair to calm me down but that didn't help and several times I almost pushed my way out of her arms. The nurses were quick with a dose of Morphine and finally I fell to sleep - or so they thought. As soon as Mommy tried to lay me down I got agitated again so she kept holding me and they decided to wheel Mommy and I in the wheelchair to my room for the night. We picked up Daddy along the way.
We were sharing a room with a little girl and her Daddy and it didn't take long for the Morphine to wear off. I was whiny for a few minutes but Mommy got in bed with me and I settled down. Daddy went to the car to get my DVD player and I watched some Signing Time. A little later, Mommy went to get some dinner since Daddy would be leaving for the night. When she got back with her pasta, I expressed some interest in eating. Mommy wasn't sold on the solid food idea so I signed "soda" and the nurses returned with some ginger ale. That was a no go and I said very loudly and not so nicely, "No Pepsi!" So off Daddy went to locate some brown soda and returned with Coke which I drank happily.
Right as Daddy was getting ready to leave, Child Life stopped by with a cute book bag with a farm theme (how did they know?). It was filled with books, a video, crayons, toys and a little Dora doll. Mommy and I had something to keep us entertained for the night! Later, I got a visit from Tucker. He is a beautiful white Great Pyranees who comes to the hospital to visit the kids. His head was as big as a bear but he was sweet and calm and loved being petted. He seemed happy to put up with me touching his nose and pointing to his eyes and he kissed Mommy's toes. He even left me a picture of him to remember him by.
The nurses let Mommy know that if I didn't have a wet diaper by 11 pm they were going to have to catheterize me so Mommy tried a feeding hoping to get me going. The formula stayed down but unfortunately, no diaper.
Around 9:30 Mommy decided it was time to get to sleep. She settled in the bed next to me but I had trouble relaxing. I started crying and pointing to my IV site. They had finally found a spot in the crease of my ankle but it was bothering me and they had actually stopped being able to use it shortly after surgery. Mommy grabbed the nurse and she agreed it was okay to remove it at this point. Now Mommy thought this would be a quick process but I fought Mommy and the nurse for several minutes before she finally got it out. I was so wound up at that point that Mommy walked the halls with me so the little girl next to me could get some sleep. We eventually ended up in the empty teen room where I fell asleep around 11:00 pm. Knowing it was time for my catheter Mommy hoped they would get it done then but the nurses were busy so Mommy settled me in bed and we both dozed until they came in shortly before midnight.
One nurse held down my legs while the other tried to get the catheter in. For the second time that day, Mommy heard how strong I was from the nurses. Nurse A got the catheter in while Nurse B struggled to hold me down. However, I was a little stronger then Nurse B could handle and broke a leg free and out came the catheter. So Mommy took a leg while they reinserted it. At one point Nurse A asked Nurse B if she could help hold down another body part and Nurse B said rather testily "It's everything I can do to keep her leg down you're on your own." With three people holding me down they eventually got the catheter back in for a few short moments to get me started and by midnight I was able to go back to sleep.

Peyton Nicole Smith

Wednesday, August 18th, 2010

The time has finally arrived - we were off to Sacramento today! First stop was dropping off my furry brothers to spend time with Grandma and Papa. They were super excited as soon as we pulled in the drive way although a little sad as we drove away. Then, it was on to the DMV to to register Mommy's car. Finally, we stopped by Daddy's work to say goodbye to Uncle Jeff. A gas fill up and some fast food and we were on our way. As usual, I am a great traveler and between my DVD's and the art supplies Mommy packed I kept myself entertained. I even took a 2 hour nap. We stopped for gas a few times and 9 hours later we were coming down the mountain into Sacramento.
Mommy had received the paperwork for the surgery quite some time ago. The instructions were that we were to receive a call the day before surgery (today) with the surgery time and if we hadn't heard from anyone by 4 pm to call. Mommy (being the planner she is) wanted to call first thing this morning but Mommy (being the rule follower she is) waited until 4:01 to call when the day went by without any word. She got the voice mails of two different people in the surgery area and she had a sinking feeling in her stomach. After all, she knew that the surgery folks were there bright and early and would already have gone home for the day. So, she decided to call the outpatient clinic since they took appoinments in the afternoon and should be around. When she spoke to the front desk person and explained the situation, they did a quick peek at my account and told Mommy, "It looks like her surgery has been cancelled." CANCELLED???!!!?? Momy said as nicely as she could, "It better not be cancelled, we just drove 10 hours to get here." The receptionist wisely decided to call Janice the nurse for Dr. James and Mommy was left to stew for about 10 minutes until Janice called her back. Janice was great, her first question was "How are you doing besides being really upset?" And then the magic words "We are going to fix this." A few weeks ago, Janice received a note saying we had decided to cancel the surgery and have it done in Salt Lake which she thought was strange. Obviously, since we didn't make that call Janice said they would be looking into what happened. She let Mommy know that I would not be the first case of the day like I usually am but they would fit me in. Mommy breathed a sigh of relief just as we were pulling into Sacramento - it was all going to work out.
First stop was the Ronald McDonald House to get checked in. Despite being in the middle of the UC Davis campus, it was a quiet peaceful spot. I got to pick out a blanket and a toy and they showed us to our room. There were eight bedrooms to a house and each house has a shared living area, kithen and dining room. There was one other family having some dinner as we got unpacked in our room. We decided to head out for something to eat and then had a quick stop to get nail polish remover for my toes. By 9 pm we were back in our room and I had my presurgery bath before calling it a night. Since there was only one bed, I slept in the middle of my parents and proceeded to kick them vigorously through out the night (reminded Mommy a little of her pregnancy).
Peyton Nicole Smith

Tuesday, August 17th, 2010

As you can see, I am handling the stress of my upcoming surgery well! The other day, I took my furry brothers metal food bowls, turned them over and scooted around the house standing on them. Now Daddy is very handy and he decided to take some old Tupperware containers and some rope and make me something so the dogs could go back to using their food bowls. With all my balance issues, I caught on quickly and "walked" around the house for quite some time. When I decided it was time to conquer the stairs Mommy called a halt to the fun.
Peyton Nicole Smith

Tuesday, August 17, 2010

Monday, August 16th, 2010

After all the stress, testing and transition meetings today was the big day. Finally, I have an IEP and I will be attending the oral/spoken language preschool with Utah Schools for the Deaf and Blind. There are still a few things to work out - the biggest being getting a nurse assigned to be in the classroom with me - but barring all that I will be starting preschool on Wednesday, August 25th at 8:30 am! As if the trach and g tube weren't enough I will also be casted on my left arm from my hand surgery on Thursday. But don't you worry, I won't let that stop me from having a great time on my first day of preschool!

Peyton Nicole Smith

Monday, August 16, 2010

Sunday, August 15th, 2010

Tonight I am getting my first night nurse since leaving California in April. Since I have been sleeping in my parents bedroom, my parents transitioned me to my bed for my nap time today and tonight at bed time.
Now that I am back in my room, my parents are preparing to get it all girly. First on the agenda is painting the head and foot boards white. Today I went with Daddy to Home Depot and picked out a stencil and some paint colors to paint on the headboard. While Daddy painted my stencil, I painted on some paper next to him.
Peyton Nicole Smith

Saturday, August 14th, 2010

I have been anxiously awaiting this day - Traiton's Yo Gabba Gabba birthday party. In fact, I woke up signing "party" I was so excited! Traiton's Mommy is pretty handy and she created life-size Yo Gabba Gabba characters and I was in awe - I kept going to visit them throughout the party.
Next to Traiton's party was a Samoan family reunion. When I went to play on the swingset a crowd of the kids crowded around me and asked Mommy all types of questions about me. What is that on her neck? Can she talk? Does she play? I was a little shy and didn't have much to say but I didn't mind being the center of attention!

Peyton Nicole Smith

Sunday, August 15, 2010

Friday, August 13th, 2010

A note from Mommy:

This picture is a metaphor to me. In a few short weeks, Peyton will be starting preschool. Ever since her birth she has been on the path to independence. First it was scooting, then it was standing, then walking and then running. All of these milestones (sometimes inchstones in the special needs community) lead her farther away from me. I am conflicted about that. Although I celebrate the progress she has made despite the challenges in her life, I am mourning the loss of the baby she used to be. In many ways, Travis and I didn't get to have the typical baby experience. Sometimes that was wonderful - how many new parents would love night nurses so you don't have to get up for 3 am feedings? Sometimes it was just sad - we gave the hospital most of her cute baby clothes because they didn't play well with a trach and a g tube.

Because we don't know enough about the genetic component of Nager, the reality is that we don't know the likelihood of passing it on to another child and for that reason we won't have another baby. And that is why I keep crying when I think about her going to preschool - I am mourning the loss of her babyhood but in some ways I am really mourning the baby experience that should have been and will never be for us.


Friday, August 13, 2010

Thursday, August 12th, 2010

You may be wondering why I am riding a tricycle in a dress - well that is because Jackson and I got some pictures taken today. I haven't had any formal ones taken since the fall of 2008. With Kiddie Kandids closing down in Utah, Jackson hasn't had any formal pictures for a while too. Being that we were in a casual setting (Jackson's house) the photographer got pretty informal pictures. I posed a little - sitting on a bench and standing next to a tree - but Jackson wasn't in the mood to be photographed so there weren't many smiles and he spent time shoveling up dog poop and playing in mud. Mommy and Aunt Kristin tried hard to get us in some photos together and finally I agreed to be pulled in the wagon while Jackson pulled it. At the end of the session, Jackson and I gave each other a hug but the photographer had some technical difficulties and missed it - bummer!

Peyton Nicole Smith

Wednesday, August 11th, 2010

Despite hitting, kicking and generally terrorizing the dogs at every turn I really do love my furry brothers and (surprisingly) they still love me (okay not all the time but most of the time).
Daddy took the day off to take me to my retesting appointment for the school district. Without a nap, a cap or a speaking valve it was worst case scenario which is what they needed to see. I was a perfect angel and behaved well doing exactly what they wanted me to. The folks in the room could clearly see that I was smart as a whip but without great expressive language skills. The first test I was in the 16th percentile and today I was in the 2nd. Now most parents would probably be bummed that I had scored so poorly but this is exactly what my parents had hoped for - results that were based strictly on my oral language ability. At this point there is no question that I will qualify for the services that I need and my parents breathed a big sigh of relief.

Peyton Nicole Smith