Peyton's Place

Monday, January 30th, 2012

2012-01-30T07:50:00.000-07:00

World RARE Disease Day is February 29th - 30 days from today. Why is the number 30 so significant? 30% of children with a rare disease will die by the age of 5.

Nager Syndrome is considered rare. Depending on where you look on the internet, there are between 75-125 cases reported. When Peyton was first diagnosed by her clinical features she was only a few days old. The geneticist pulled out an old book to show us a photo of a child with the syndrome. The geneticist made a copy of the information for us. Were it not for the Nager and Miller Foundation website and the internet in general, those few paragraphs would have been all the reference material we would have had.
Like many families who have children with a rare disease, we are often educating the physicians treating Peyton about Nager Syndrome. One of my first experiences was sitting in an ER and having the resident come back and tell us that she had just spent several minutes on the internet trying to find out more about the syndrome to assist her in treating Peyton. Ever since then, I decided I needed to be more prepared and put together a hand out for specialists, pediatricians and therapists on what Nager Syndrome was and what clinical features Peyton did or did not have.

When I began blogging, we had no idea the specific syndrome Peyton had. But as a result of continuing the blog after her birth if you do a search on the internet for Nager Syndrome and look at the images section "Pictures of Nager Syndrome" you will see several photos of her. Some may consider that an invasion of privacy but for the Nager families that are to come, I want them to have more than just an outdated black and white photo and a few paragraphs as they start on their journey. I want them to see that a child with Nager will certainly have challenges but their lives can be rich and full - as their lives as their parents will be as well. Without the internet and organizations like the RARE project, all of us who are touched by a rare disease would be even more isolated. And really, the term "rare" is relative when you read these statistics:

* 1 in 10 Americans is affected by rare disease. That's over 30 million people. 30 million Americans is more than the total number of people living worldwide with cancer.
* An estimated 350 million people are affected by rare disease worldwide.
* There are more than 7,000 rare diseases with some affecting less than 100 people. 75% of rare disease affect children.
* These rare conditions are chronic, life threatening and FATAL. There are NO cures for any rare disease, and only 5% of the diseases have any type of treatment.
* Over 50% of Rare Diseases have no foundations, advocacy group or community support.

So what can you do on February 29th to bring awareness to Nager Syndrome and all rare diseases?

1. Help unite 1 Million for Rare on the Global Genes Poject Facebook page so that we can increase awareness to the rare disease community.
2. Wear that you care (using jeans to call attention to genes that can cause rare disease) and encourage others to do so. Share your photos on Facebook of your jean support.
3. Donate a bracelet to the 7000 bracelets for hope campaign.

Sunday, January 29th, 2012

2012-01-30T07:23:00.000-07:00

If there is anything more fun then making a mess it is making a mess with a friend!

Peyton Nicole Smith

Sunday, January 22nd, 2012

2012-01-24T20:15:00.001-07:00

It's only been a week since we first went to see the otters, but Colin hadn't been to see them yet so Jackson and I were eager to be his tour guides! We got there just as the doors opened so we had a few minutes of hanging out with the otters before anyone else was around. While Mommy and I were hanging out in the otter cave that pops up into their enclosure, the otter walked right up against the glass. He was so close I was a little startled at first but quickly got over my fear and was very interested in everything he was doing. I was a little sad when we had to leave, but Grandma Glenda has already promised to take me again later this week.

Peyton Nicole Smith

Saturday, January 21st, 2012

2012-01-24T20:07:00.001-07:00

A note from Mommy:

In the bath tub tonight, Peyton and I had a conversation about swimming. Now this has been a hot topic in our household because Peyton has requested many times over the last year to be able to go swimming and we have to explain how dangerous it would be to get water in her trach. She was having her Barbie swim in the water. While doing this, she commented to me that because Jackson doesn't have a trach he can swim. Then she added that because Traiton doesn't have a trach he can swim too. I agreed with her and told her that in the future if her trach comes out she can go swimming. She pointed to her trach and seemed concerned and pointed out that she would still have a hole there. The kid is sharp, she realizes that even if we pull the trach out there is a still a hole for the water to go into. So then I explained that if she doesn't need her trach any more the hole will eventually go away. She seemed to understand and we moved on to another topic. It wasn't a particularly earth shattering discussion but what I was struck by was as she pointed out all the people who could swim, she wasn't unhappy or disappointed that she isn't able to. I am certainly not devastated at the thought of her not being able to swim but I have been worried that she might be secretly sad about it. She continues to show me all the time that she accepts her life just the way it is. I am not so naive to think that will always be the case, but what a lesson to learn from a 4 year old. She really teaches me that no one else can define the value of a life except the person living it.

Thursday, January 19th, 2012

2012-01-24T19:48:00.000-07:00

The secret of dealing successfully with a child is not to be its parent. ~Mell Lazarus

A note from Mommy:

Although I never expected parenting to be a walk in the park, I don't think I was prepared for how quickly Peyton could figure out what "buttons" to push and how often she would choose to push them! Looking back age 2 seemed like a minor blip in the grand parenting scale and then age 3 started to really test out our parenting abilities. Age 4 has been a 1 step forward 2 step back type of experience. The number one biggest issue we struggle with is Peyton's constant acting out towards the dogs. For some reason, this is a button she has been pushing since she was 2. There have been moments in the last few months that she has demonstrated how sweetly she can treat the dogs (that would be the one step forward) but then moments later she will come up and hit at them for no apparent reason (and that would be the two steps back). At times, it even seems like she is doing it without even thinking - a body memory that is so ingrained it's as if her hand or foot has a mind of it's own! There are certainly other undesirable behaviors, but this is the one we correct more than any other and for the longest amount of time.

So when the local school district was offering an 8 week parenting class for $30 a person and it happened to fall on the same night we had already scheduled respite hours each week I figured it was meant to be. Tonight was the first night but our respite nurse called out sick so a ~~heartbroken~~ thrilled Travis had to stay home with P so I could attend. There were 4 other parents in the class. The three other women had husbands that were all supposed to attend but magically there was an excuse for everyone of them ; ). All four of us had children in the 4-7 range with three of us specifically wanting to address issues with their 4 year olds. The last parent to arrive was the father of an adult child, 14 year old son and 8 year old daughter. His concerns were in regards to the 14 year old. The instructor is a LCSW who worked at PCMC for a number of years specifically interacting with children who had been abused. She also spent about a decade in the schools on a program for teachers. It's hard to tell where the next 7 weeks will take us but if nothing else I can tell I will find some kindred spirits in the mom's of these other 4 year olds!

Wednesday, January 18th, 2012

2012-01-24T18:57:00.000-07:00

You can call Mommy a little too efficient after today's appointment (she never realized that was actually possible). When she scheduled the follow up appointment with Dr Morales today she figured with all the electronic medical records and technology it should be no problem for him to get the CT scan for the appointment this morning. Although the written report was completed and the 2D scan was available, apparently the 3D scan was not. He didn't feel comfortable making a decision on which surgery to proceed with until he had a chance to see it. Since he is out of the office all next week it is unlikely he will get back to Mommy until the 31st or after. He did decide after looking at Peyton more closely that her jaw is much to tight not to proceed with doing the joint surgery sooner rather than later even if she is not a great candidate for compliance using the Therabite afterwards. The question to be answered by the CT scan is which surgery to do first - joint repair using a rib graft or another jaw distraction. Despite not knowing which surgery, we went ahead and got on the schedule for 4/16 because there will be surgery one way or the other!

Peyton Nicole Smith

Tuesday, January 17th, 2012

2012-01-17T21:26:00.000-07:00

Before Dr. Morales can decide which surgery to do next - my joints or another jaw distraction - he needed an updated CT scan. After rescheduling it multiple times due to my ongoing colds last month, the day finally arrived. Due to my complete freak outs for xrays, Mommy planned another sedated CT. This always requires a lot more planning because of the anesthesia. When Mommy broke the news this morning that I needed to go to the hospital I was pretty sad and on the way there I was very quiet as I contemplated what was to come. After checking in, they took me back to the pre sedation area where a child life representative was waiting to entertain me. She brought some toys to keep me occupied but she also brought something else with her I hadn't seen before. It was a book of photos taken of a little boy my age throughout the process of getting the CT scan. While we waited for the Versed, Mommy and I looked through the photos and talked about what would happen. I was pretty relaxed and Mommy thought maybe I wouldn't need the anesthesia after all. The nurse went ahead and gave me the Versed anyway since it would just relax me further and while we waited for it to take effect, I "practiced" laying on the bed like I would need to during the procedure. Thirty minutes later, I wasn't really feeling the Versed yet but Mommy was feeling positive that I would be able to do it with out the anesthesia. Mommy carried me down the hall and was able to stay right next to me the whole time. I could see a beautiful cloudy sky mural above me as well as the Mickey Mouse Clubhouse on the TV and just as we had practiced, I held really still and "froze" like Yo Gabba Gabba. Within just a few minutes it was all over and Mommy snapped the picture above before I got to go pick out some treasures from the treasure box. I told Mommy I was so happy that it was all over!

Peyton Nicole Smith

Sunday, January 15th, 2012

2012-01-16T20:13:00.000-07:00

I have been on pins and needles waiting for the Living Planet Aquarium to unveil it's newest additions - the river otters! They officially opened up on Thursday but the place has been packed with visitors. So Jackson and I and our mommies went this morning as soon as they opened. Jackson and I could have stayed watching them all day - espescially because one kept coming right up to the glass to see us. As a special treat on the way out they were giving away Otter Pops - what a perfect ending!

Peyton Nicole Smith

Friday, January 13th, 2012

2012-01-16T20:09:00.002-07:00

I have a new obsession, it is the red talking germ. Now, Mommy isn't actually sure if this is what the red talking germ looks like but it will have to work for now. This all began about 10 days ago when I spent all day talking to Grandma Glenda about the red germ. When Mommy came to pick me up I started in with her about it as well. Grandma and Mommy were both stumped but I was insistent. Later that evening, Grandma thought she solved the mystery. Apparently, there is a Clorox commercial that takes place in the kitchen and there is a red puppet that is a germ that talks during the commercial. For the next 2 hours, Mommy scoured the internet to try to find the commercial but was never able to track it down. 10 days later, Mommy and Daddy have yet to even see the commercial. But in the abscence of the commercial, I have now become obsessed with all things germ and Clorox related. Every time a Clorox commercial comes on (any type of Clorox commercial) I get super excited and force my parents to watch it. I have also become an expert on the Clorox logo and when shopping in the grocery store the cleaning products aisle has now become my favorite spot in the world. Last weekend Daddy purchased a case load of Clorox bleach and I was in heavan. A few days later when Grandma bought some cleaning supplies that were not Clorox brand I gave her quite the tongue lashing!

I am also refusing to sleep in my bedroom. A few weeks ago it was due to the Grinch but now it is because the red talking germ keeps bothering me. I had the great idea to have the Grinch eat the red germ but quickly changed my mind and now I intend to use my purple wand to cast a spell and make him leave. Since my parents now trade off with me in bed with them each night they are hoping I move on to a new obsession sooner rather than later!

Peyton Nicole Smith

Thursday, January 12th, 2012

2012-01-16T20:01:00.003-07:00

Here I am in my pink glasses. Pretty cute huh! It is taking me some time to get used to wearing glasses, they end up pushed on to the top of my head pretty frequently but with my parents encouragement I am wearing them more and more. Daddy has already started calling me "four eyes" to prepare me for the mean kids at school in my future - isn't that sweet of him?

Peyton Nicole Smith

Monday, January 9th, 2012

2012-01-16T19:32:00.000-07:00

A note from Mommy:

I have neglected to blog about a very special gift that arrived in my mailbox during the mad holiday rush. Several years ago I became aware of the Global Genes project. Peyton may be one of only 100 or so diagnosed cases of Nager Syndrome, but rare diseases impact millions. As the Global Genes website says:

Rare Disease affects over 350 million people worldwide, and the largest percentage are children. There are over 7,000 rare diseases that have been identified all with very unique needs, but many with little to no support. Although each individual disease may only impact a few, together the impact is in the millions. Rare disease is not so rare.

As part of the Global Genes Project, they started the 7000 Bracelets For Hope. To help show support and bring awareness to families of children with rare disease, Global Genes solicited 7000 jewelry designers to create a blue bracelet. I had signed up so long ago I had forgotten all about it and then right before Christmas I received my blue bracelet. It is beautiful and the note that came along with it brought tears to my eyes:

"When your life is about caring for a chronically ill child, I suspect you seldom get to think about pretty things for yourself. This bracelet is for you! May it bring a smile to your face to know that others care!"

Eileen Bednarz was the jewelry designer and she is Vice President and Creative Director of Second Chance Websites LLC. Thank you Eileen for the time and sentiment that went into making this bracelet. I will keep this bracelet safe until Peyton is old enough that I can explain the story behind it and how it is an example of how there are certainly wonderful people in the world.

February 29th is Rare Disease Day 2012. Please help bring awareness to rare diseases like Nager Syndrome by wearing jeans or a denim ribbon.

Saturday, January 7th, 2012

2012-01-09T18:59:00.001-07:00

A note from Mommy:

I know I have blogged about this in the past to some extent but it is still something I am not quite sure how to handle.

On Saturday, Peyton accompanied us on a multitude of errands - pet store, optical shop, Jiffy Lube, grocery store and Home Depot. While Travis went off to look at non-fun stuff like a blanket for the water heater, Peyton and I headed to the paint area. Along the way, a Home Depot employee stopped us and asked if he could give Peyton a sucker. I agreed and Peyton was super happy. On we went to the paint area and picked out a sparkly pink paint for her bed. The whole time she kept insisting that we had to hurry and find Travis to show off the sucker she had gotten. As Travis headed to the check out line with his purchase, the same Home Depot employee found us again. He asked what was on Peyton's neck (she was wearing her HME) and I responded that it was a tracheostomy. He then asked if we were familiar with their Saturday morning program for kids. Apparently they have a different project each week that the kids work on and take home with them and he thought she would love coming. He then handed me the project from earlier in the day and said, "We normally don't give these out, but she is such a special girl."

As I thought about the experience later, I went back and forth in my mind about what happened. Peyton is special for many reasons and not all of them are related to her syndrome and the physical anomolies that go along with it. But at times, I think that is what she is recognized for. It is ironic to me that we try to have her live as "normal" a life as possible, but in many respects society seems hell bent on calling attention to all her differences - positively and negatively both. Earlier the same day we were eating at Village Inn and I noticed lots of stares, mostly from elderly patrons. When I mentioned it to Travis he said, "Well they probably haven't seen any kids like her before because they probably died at birth" to which I responded "or those kids were institutionalized". Both are true.

But as I was considering the long term effects of her being singled out so often in public situations, I also considered the fact that people probably notice her for other reasons besides the medical ones - we just don't realize it. Because one thing about Peyton is that she is a social creature - she loves people and she is not shy. I am struggling with the best way to describe her to those who may only know her via the blog but the best word is probably "alive". When Peyton is strolling down the aisles of Home Depot or at the table at Village Inn or anywhere else - you notice her because she is so animated and alive! She is not the kid hiding behind her parent - she is out in front singing, dancing, skipping, talking and interacting with her with all those who come in contact with her. So I still think I am doing her a diservice by assuming she is noticed just for her tracheostomy or her hearing aids because in all reality she is probably noticed just as much for her winning personality. In the end, it is that winning personality that she will need in the tough years to come. I am so grateful that she is such a charmer, because she is helping to dispel myths people may have about children like her. She is one of the cutest ambassadors for those encountering a trach for the first time and hopefully making the path way a little easier for those kiddos with trach who are to come behind her. So whatever the reason the Home Depot employee approached her, I am just so glad he did!

Thursday, January 5th, 2012

2012-01-07T20:27:00.003-07:00

A picture of what is to come... Today I went to the eye doctor and after some tests, dilating my eyes and an eye exam I ended up with a prescription for glasses. Mommy wasn't surprised but she was a little shocked when she found out my vision at 4 years old is worse than my Daddy's! I was sorely disappointed that I wasn't walking out of the office with a pair of glasses but Mommy took me by a optical shop and I picked out some frames. Because my ears are so low set, it is kind of challenging to find frames to fit. Mommy had me try on a special kind called Miraflex that are flexible plastic with an attached strap. They only had three in stock - pink, blue and purple. The purple didn't really fit so Mommy picked out the pink and blue ones. In 7-10 days I will get to finally take them home!

Peyton Nicole Smith

Wednesday, January 4th, 2012

2012-01-07T20:22:00.001-07:00

My room is looking every more girly! For Christmas, Uncle Steve got me a rainbow canopy. Then my parents got me a pony bed set in pink and green. Next up on the list is to paint my bed, paint the walls and get some new furniture - all things to come in the new year.

Peyton Nicole Smith

Tuesday, January 3rd, 2012

2012-01-07T20:18:00.003-07:00

This is what I can do in about 10 minutes with some Hello Kitty eye shadow!

Peyton Nicole Smith

Monday, January 2nd, 2012

2012-01-02T21:40:00.001-07:00

A note from Mommy:

I have always been a voracious reader (when time permits) and when Travis bought me a Kindle I instantly fell in love with it. I have read books I never would have found locally and with Kindle's sale books each month, I have read books I would have passed up in a book store. I just finished reading The Boy in The Moon: A Father's Journey to Understand His Extraordinary Boy by Ian Brown. It was a fascinating and sobering look at a father's experience raising a child with a rare genetic syndrome. Not only does his son have physical deformities, but he also has a developmental age of just a few years old. There were many times that I had to stop reading for a moment and take a breath because it brought up memories of the first year with Peyton when her medical issues and constant appointments was so overwhelming. He also talks about the impact such a needy child has on a marriage and I could completely understand. There is no "happily ever after" to this story as is the case with many families who have a child with a syndrome, but it was the first book I have read that I felt the author was completely honest about his feelings - good, bad and ugly. So if you get a chance, check it out.

Monday, January 2nd, 2012

2012-01-02T21:17:00.003-07:00

Happy New Year! I know, I know it has been a long time since I have written but we have all been so busy.

First off, the results from the testing of my secretions after Dr Norlin's appointment came back positive again for pseudmonas and streptopneumococcal. So after consulting my pulmonologist and the Infectious Disease clinic at the U, Dr Norlin put me on a round of different antibiotics.

On November 9th, Daddy, Mommy and I went to Yo Gabba Gabba Live! Last year it was in a much bigger venue. This year they had it in a smaller location but had two showings. We went to the late showing but it was still pretty packed. In the course of a few hours I went from the highest of highs (see the first photo waiting for them to go on stage) to the lowest of lows (see the last photo) when it came to an end. The last part of the tv episodes as well as the live show is the goodbye song and that's when I burst into tears and proceeded to cry as we exited Kingsbury Hall, made our way to the car and all the way home! As we were passing other parents leaving the show with their children they all thought it was super sweet that I was so upset - but I was sincerely sad - and asked immeadiately for Daddy and Mommy to look up on the computer when Yo Gabba Gabba would return.

A few days later, on November 13th I got to see Disney on Ice. Since cousin Jackson was headed to Tennessee for Thanksgiving, my Mommy's side of the family had Thanksgiving dinner a little early. Unfortunately, after sitting down with his loaded plate with all the trimmings, my Uncle Shawn choked on a piece of turkey and headed to the ER. We heard he was doing okay so Mommy and I, Jackson and Aunt Kristin and Traiton and Uncle Jason went ahead and went to Disney on Ice as planned. Despite bringing the light wand from the prior show in the spring, I insisted on having a new $22 light wand. We had a great time and can't wait for the Disney on Ice to return in the spring with a Toy Story theme.

On November 16th, my parents celebrated their five year wedding anniversary. The standard theme is wood so Mommy gave Daddy a wooden watch and Daddy gave Mommy a rocking chair from Cracker Barrel. They finally opened up the bottle of wine they had bought on their honeymoon in Napa and had been saving. It wasn't their most exciting anniversary but as I get older they will be able to take their long awaited honeymoon to Hawaii that they had originally planned.

On December 3rd, Jackson and I had a sleep over at his house when his parents were out of town. We had lots of fun building forts from furniture, blankets and couch cushions. There was a little drama when it finally came time to go to sleep but Mommy put Jackson and I in our own blow up beds on opposite sides of the room and we were both asleep before 10 pm.

On the medical front, on December 7th, Grandma Glenda, Mommy and I went to see Dr Morales for a six month check up. When Mommy mentioned that I had an upcoming appointment with another doctor to determine when to implant my BAHA's, Dr Morales advised against it. He said it would interfere with his reconstruction of my outer ears. Since Mommy has never heard any doctor ever mention doing any cosmetic surgery on my outer ears she had Dr Morales explain further. Apparently as part of his grand surgical plan for me, he wants to build up the top of my ear to make it more closely resemble what a normal ear would look like. Because that surgical site as well as the sites for my other jaw surgeries could interfere with where my BAHA's are implanted he doesn't recommend those surgeries until several years from now. To determine which surgery comes next, he wants another CT scan and then a follow up visit. One positive to visiting Primary Children's during the holidays was a chance to see the Snoopy tree in the lobby. I got to pose with a giant Snoopy on my way out!

On December 14th I received the long awaited news my parents had heard rumored about for several weeks - I was getting "kicked out" of my second preschool. That's right just like this time last year, my new preschool run by the school district decided that I was just doing too well to qualify any longer for the special needs preschool. According to the teachers I am well prepared for a main stream kindergarten class next year. In fact they said I am very "assertive" about my wants and needs despite my speech issues so they aren't worried about me fitting in one bit!

In the midst of my last few days at school I was on to my third cold of the season. It happened to be just ending as it was time for my six month pediatric follow up appointment on December 15th. Unfortunately, the trach smell was back so Dr Norlin's replacement took another sample of my secretions for testing. Since I hate having that done and was already ticked off, Mommy went ahead and have them give me my kindergarten shots (3) to get that out of the way. The pediatrician called Mommy on Saturday night to let her know it looked as if I was back growing the bugs again. She had called the pulmonologist and they had recommended not treating the stuff this time as long as I was feeling okay. The pulmonologist indicated that the bugs would probably just make my secretions thicker if I did happen to be sick. Mommy should have known that was the kiss of death because later that night I started developing my standard fever which is the calm before the storm of my cold. I was healthy for all of 48 hours before I was now coming down with my 4th cold of the season - just in time Hanukkah and Christmas!

While Grandma Glenda and Papa were having their carpet replaced by hardwood floors, they needed to spend a night away from the house while the sealer cured. While they went away to a hotel, Mommy and Daddy offered to take their three dogs. With our two that made five in bed with Mommy that night. (Daddy was smart and slept in the spare bedroom!)

On December 20th, Mommy hosted a first night of Hanukkah party for Uncle Jeff. She invited her side of the family and Daddy's side of the family. Mommy went all out with lots of Hanukkah decorations and she prepared a traditional Jewish meal from scratch - challah bread, mandelbrot, potato latkes, applesauce, mulled wine and brisket. Check out her bread below! Everyone had a great time trying new foods and think this should be an annual event.

My cold had hit hard right before Hanukkah so by December 22nd, Mommy thought I was probably well enough to go see Arthur Christmas with Jackson. We made it about 1/2 way through the movie until Jackson decided he would prefer to play the games then sit through the movie any longer. Despite not seeing the entire movie, I was thrilled to pose with the Chipmunks in the lobby.

For the last few years, I have spent the night at Grandma and Papa's house on Christmas Eve but I was still battling the cold. Over the last week I was waking up almost every night coughing that led to vomiting. So after opening lots of presents at Jackson's house Christmas Eve with Mommy's side of the family, we went home after a quick stop at the Smith's to drop off cookies for Santa. Mommy turned on Sprout so I could see everyone was sleeping and fell asleep before 10 pm. Luckily for my parents, I had a good night's sleep before getting up and getting to the Smith's at 8 am for round 2 of the gift opening. We had a little breather at home where I got to play with some gifts before heading to Karen's house for the 3rd and final round of presents.

I was still not getting over my cold so on December 27th, Mommy and I went back to Dr Norlin's office and saw a new pediatrician. Mommy wasn't necessarily looking for antibiotics but was concerned that even after using steroids for 4-5 days and my rescue meds, I was having asthma attacks several times each day - usually one occurring in the middle of the night. Mommy wasn't sure how much of it was related to the pseudomonas and streptopneumoccocal. After discussing my case with the pulmonologist, the pediatrician went ahead and prescibed another antibiotic to try to treat the bugs a third time.

On December 28th, my parents got a night away and went to see the Transiberian Orchestra concert. Although they had tickets a few years ago in Sacramento, they didn't end up attending so they were both excited. Mommy had bought the tickets a few months ago and had no idea the tickets were so good - they were row 13 on the floor! TSO peformed for almost 3 hours straight and it was quite the show with lights, lasers, fire and snow! But one of the best parts for Mommy was when TSO presented Shriner's Hospital with $7000. TSO always donates $1 of every ticket sale to a local charity - so cool!

New Year's Eve was pretty quiet this year. I was starting to feel a little better so Mommy and I met Uncle Lonnie, Aunt Kristin and Jackson at Krista and Tony's house where Jackson and I got to play with Ava. Mommy and I headed home by 8 pm and Daddy arrived home from seeing a movie with Uncle Jeff around 10:30. Mommy was beat and went to bed but Daddy and I stayed up to watch the fireworks together. So now you are all caught up and my New Year's resolution is to try to be a better blogger in 2012!

Peyton Nicole Smith

Tuesday, November 1st, 2011

2011-11-12T21:28:00.001-07:00

Dr Norlin called and my strep infection has returned which is the reason for my stinky trach. So I am starting into another 10 days of antibiotics to try to kick it for good. Meanwhile, we got back our family photos we had taken a few weeks ago.

Peyton Nicole Smith

Monday, October 31st, 2011

2011-11-12T21:20:00.001-07:00

What a day! After stops at Mommy's work, University Hospital, Daddy's work, Grandma Marilyn's work and trick or treating in the neighborhood I ended up with several buckets worth of candy - and didn't eat a single piece! To make sure Mommy and Daddy didn't end up eating it all it was eventually all shipped off to Daddy's work where the guys in the warehouse were very appreciative.

Peyton Nicole Smith

Tuesday, October 25th, 2011

2011-10-29T21:08:00.004-06:00

After two months in preschool the inevitable has happened - I got my first cold. Although I went to school Tuesday, I was not feeling so hot. Last week Mommy had made an appointment with my pediatrician for tonight because of a bad trach smell. Unfortunately, in the throes of a cold, I was coughing up so many secretions that the trach smell was gone. Dr Norlin went ahead and got a speciman to culture, but we'll have to see if anything grows. Even though I have a cold it seems pretty run of the mill and some pedialyte and Tylenol seems to be controlling it for now.

Peyton Nicole Smith

Sunday, October 23rd, 2011

2011-10-29T20:50:00.002-06:00

Jackson and I have memberships to the aquarium and despite going lots of times this year we never get tired of going back. So we met up this morning a soon as it opened and ran around the place together. Jackson was disappointed that the frog area was under construction but soon it will have sea otters instead.

After going home for naps we met back up for dinner for Uncle Jason's birthday at Bonzai, a Japanese steakhouse. Jackson, Traiton and I didn't really like all the fire but thought the chef throwing shrimp at the parents was fun!

Peyton Nicole Smith

Wednesday, October 19th, 2011

2011-10-29T20:41:00.001-06:00

Meet the newest "member" of our family! It is the iPad 2 with the iAdapter case and the Proloquo2go app. That's right, Mommy put in a request to the insurance company and it was approved! A few weeks ago, we went to the Apple store in the mall and got the iPad. Then, Mommy ordered the iAdapter case. It took a few weeks to get it but it was worth the wait. I love my iPad and anybody I meet I am proud to announce that I have one. Most are just a little amazed that I am barely four and I have one!

I am a little ahead of the curve with this technology so it is going to take some time to get assistance from the school district on how to incorporate it into the classroom. Mommy is also going to have to read the manual and figure out how to customize the app for me. Despite the work ahead, it is a huge accomplishment to have gotten this covered by insurance and it will be a totally cool way to communicate with friends, family and peers!

Peyton Nicole Smith

Monday, October 17th, 2011

2011-10-29T20:26:00.001-06:00

Mommy in the making!

Saturday, October 15th, 2011

2011-10-22T14:05:00.004-06:00

OK so if you have never been to Cornbelly's it is awesome!!! (And my parents even thought it was pretty cool). We were there right as they opened with Ava and her parents, Ethan and his dad, and Jackson and his parents. And we were all pretty overwhelmed with all there was to do. It was perfect weather, and from pig races to a corn maze to a cow train we just couldn't get enough and we still didn't get to do everything. We definately want to go back one more time before they close for the year.

Peyton Nicole Smith

Tuesday, October 11th, 2011

2011-10-22T13:42:00.001-06:00

Happy Birthday to my Daddy! To celebrate the big 36, I spent the night at my grandparents while Mommy and Daddy went to see the Foo Fighters in concert. My parents stopped and had dinner first and then watched as folks started to arrive. They were suprised at the diversity of the crowed - it wasn't just oldies like them!

Peyton Nicole Smith

Sunday, October 9th, 2011

2011-10-22T13:30:00.001-06:00

Guess what I am going to be for Halloween?

Saturday, October 8th, 2011

2011-10-22T13:27:00.000-06:00

They are pretty fuzzy but you can see that my Daddy was celebrating a birthday! Karen's parents were in town from Inman, Nebraska so we went to dinner at Karen's tonight. And yes, Karen put 36 candles on the cheesecake!

Peyton Nicole Smith

Monday, October 3rd, 2011

2011-10-04T22:56:00.000-06:00

A note from Mommy:

After four years of talking to surgeons, pediatricians, ENT's and pulmonologists you would think I would be an expert on Peyton's airway (or lack thereof). When Peyton had her bronchoscopy a few months back, Dr Muntz was clear that her airway was still very small but didn't get into much detail and I was anxious to get back to recovery to see her. Today when we saw Dr Muntz I felt I had a little more time to ask some questions. The original reason for the appointment was to discuss the abutement surgery for Peyton's BAHA's. When he indicated that he doesn't do these any longer and to see one of the two others in the practice that specialize in it - it presented an opportunity to get in a general discussion about Peyton's airway.

Dr Muntz presented a check list to decannulation:

1. Seeing the larynx during bronchoscopy
2. Daytime capping trials
3. Nightime capping trials

When Dr Muntz did Peyton's bronchoscopy this summer, not only was her airway small, he could not even visualize her larynx and it was almost impossible to get the tube in. So when he is talking small he means very very small. For kids with micrognathia there are usually two ways to "grow" the airway, one being the jaw distraction and one being general growth of the child. Since Peyton is not even a year out from her jaw distraction, what did that mean? Dr Muntz has treated a handful of patients while in St Louis (13 years) and since being at Primary Children's - maybe 15 in total. And one thing he has seen is that Nager patients don't respond the same way to distraction as other children with micrognathia - the results just aren't the same. Nager patients are unique to themselves (something I seem to keep hearing). So what about general growth of the child - what should we expect with that? Peyton is really small for her age and each child of course is different but kids who grow into a bigger airway through general growth of their bodies he felt happened around 8 or so.

Dr Muntz said with the airway we want to watch it every year because one year he may not be able to see the larynx and then all of a sudden the next year it is there. He also wanted to clarify that there have been children decannulated that there larynx was not visable. We'll get to that in a minute....

The second requirement is daytime capping and the ability for Peyton to cough up her secretions so that she doesn't develop pneumonia. Peyton can already cap for long stretches during the day so we know she can tolerate capping. Another good test would be to have her capped during a cold to see if she can get everything up and out.

The last requirement is nightime capping. Since we are not anywhere close to completing surgeries, Dr Muntz is in no rush to complete one. But if surgeries were done, her daytime capping continues as it is and she failed her nightime sleep study it doesn't mean she could not be decannulated. His recommendation for most kids is that if the only issue with the airway is sleeping, he would trade a trach for decannulation and CPAP. When I brought up the low compliance rate for adults with CPAP he was quick to agree - he said somewhere around 75% of adults using CPAP are not compliant. However, he felt that children were actually the opposite - he estimated 75% of kids were compliant espesically if they were old enough to understand the trade off - trach or cpap.

So what we are left with is that the airway may grow enough on it's own or it may not. It may require additional jaw distractions or it may not. If we get to a point where most of Peyton's surgeries are completed, she is completely stable and capping trials during the day are still going well but she is failing a sleep study there is a possibility of removing the trach. But it would be risky if an emergent need for an airway arose.

Knowing what I now know about Nager kids and Peyton in general, I can pretty much bet we are going to be stuck making that very difficult decision in the future. There is no crystal ball to tell us if there would be an emergent need for an airway in the future. We also can't rely on outcomes for surgeries such as jaw distractions based on kids that do not have Nager Syndrome - these kids are just not comparable. We are blazing our own trail with not much more than educated guesses from doctor's to help direct us along the way.

On the way home I wasn't crying or angry - but I still have a lot of emotional investment in getting her trach out and I wasn't sure why. And then it hit me. For some reason I believe that decannulation is my personal responsibility and if it doesn't happen it is ultimately my personal failure. As a result of today's conversation with Dr Muntz I finally have a sense that none of this is really in my control. Ok I know that sounds funny - it never really has been in my control - but I don't think I have really believed that before now. In the back of my mind if I got her to the right doctors at the right time for the right surgeries I could make it happen. Today driving home it occurred to me that despite getting her to the right doctors at the right time for the right surgeries her body may just not ever allow for a decannulation and there is not a damn thing I or anyone else can do about it. You may think that was a devestating concept but just the opposite - although it was a very sobering thought - I also felt some weight lifting off my shoulders. So there is a new mantra running through my head now - It is not my fault she has a trach and it won't be my fault if she can't get it out. And someday it may be her mantra as well - It is not my fault I have a trach and it won't be my fault if I can't get it out.

Sunday, October 2nd, 2011

2011-10-04T21:28:00.000-06:00

With a bad weather weekend coming up, Jackson, Ethan, Ava and I made our mommies take us to Wheeler Farm this weekend instead. It was a beautiful fall morning and we got to go through a corn maze, go on a wagon ride and pick out pumpkins from the pumpkin patch together. Halloween can't come soon enough!

Peyton Nicole Smith

Wednesday, September 28th, 2011

2011-09-29T06:40:00.000-06:00

I was just all tuckered out tonight! I missed my nap because I had an appointment at the dysphagia clinic today. Mommy looks forward to these appointments because it is an opportunity to get accurate height and weight measurements and discuss my growth. My parents and grandparents have all been saying that it seems like I have gotten bigger and they were right! I weighed in at 28 lbs. 7 ozs. and I am 37 1/2 inches tall. In the grand scheme of things I am still pretty small - only about the 7th percentile for girls my age - but I am keeping right on my growth curve so everyone was happy. Dr O'Gorman recalled the first time she saw me about a year ago and I was super skinny and now she is pleased to see that I am filling out - so it is not just my family's imagination. To try to keep up with my activity level I need to have my day feeds bumped up 10 cc's but no big changes to my care plan which is good.

Because I am on the petite side, my Mommy wondered how long before I would meet the 40 lb requirement to move to a booster seat in the car. My dietician, Marie, checked against my growth curve and it looks like somewhere around 6-7 years of age. Until then I am stuck with a car seat!

As a special treat, Mommy and I stopped by the Halloween store on our way home today. Although I am dead set on wearing Jackson's elephant costume from last year, I still wanted to go look at costumes. I had a lot of fun roaming the aisles and I am convinced Halloween is just days away, with Christmas close on it's heels!

Peyton Nicole Smith

Saturday, September 24th, 2011

2011-09-28T21:47:00.000-06:00

It was time for the HopeKids Wasatch Adventure. Team Princess Peyton was me, Mommy, Grandma and Jackson. Mommy was there right at 9 am when registration opened but the race did not begin until 10:30 so that left plenty of time for Mommy and Grandma to keep Jackson and I entertained. Shortly before the race Leo the Real lion and Swoops the Ute eagle showed up. I am not a big fan of mascots and insisted that Mommy keep them in sight at all times - I didn't want them sneaking up on me!

When race time began, Jackson decided he wasn't in the mood so Mommy and I went by ourselves. We decided to do the 1 mile adventure walk rather than the 5 K. It was designed just for the kids because every few hundred feet there would be games set up we could play and win prizes. It was a great walk as far as I was concerned, but since Mommy carried me pretty much the whole way I'm not sure she agrees.

After we finished the race, Jackson and I had some time to play on the bounce houses before it was time to head home for a nap.

After a good nap we got into the car to drive to Lindon for Lily's Fundraiser for CCA. I had such a great time playing with Lily and all the other children with craniofacial conditions and my parents had a great BBQ dinner. We are going to make this an annual event.

Peyton Nicole Smith

Monday, September 19th, 2011

2011-09-20T04:26:00.000-06:00

Thanks for all who have donated to HopeKids for the Wasatch Adventure 5K. My team has raised $306 towards my $500 goal. The race is on Saturday so time is running short to donate. Please help me reach my goal!

http://www.firstgiving.com/fundraiser/princesspeyton/3rdannualhopekidswasatchadventure2011

Peyton Nicole Smith

Sunday, September 18th, 2011

2011-09-20T03:57:00.000-06:00

Last night, my parents dropped me and my furry brothers off at Grandma and Papa Smith's. This morning they left early to head to the airport. Mommy is presented at a work conference and Daddy decided to join her. They will be gone until the end of the week. Although my Daddy has spent the occasional night away and Mommy traveled a few years ago, they have only spent a night away from me together a few times in the last year. To have them both gone for almost a week is a new experience for all of us. Tonight Grandma and Papa gave me a bath and a trach change and sent my parents the picture to assure them I was doing just fine! Although I have asked my parents a few times on the phone to come pick me up they know I am having a great time.

Peyton Nicole Smith

Friday, September 16th, 2011

2011-09-20T03:53:00.000-06:00

HopeKids had a night at the Utah State Fair tonight. Despite rain, my parents had gotten me all excited to see the animals and so they crossed their fingers it would all work out. Uncle Jeff came with us, too. (He doesn't mind going on all the rides with me so he is a great guy to have around!) The drizzly rain soon turned into pouring rain so we waited in the car until it was time to meet up outside the gates. With the weather and the traffic it took almost 1/2 hour before we were able to make it in but by then the rain was starting to slow down. The first stop was a pony ride - my favorite! Then it was on to the animals - chickens, bunnies, goats, cows and pigs. We probably could have stopped there and I would have been happy but then Uncle Jeff talked my parents into letting me go on the rides. First up - the Tilt O Whirl! While Jeff and I twirled my parents caught glimpses of me laughing hysterically. Despite the wet rides, I rode the hot air balloons, helicopters and cars and I loved them all. Daddy hadn't brought a jacket and Uncle Jeff was wearing shorts and we all started to get cold so we left a few hours in. So glad we braved the rain!

Peyton Nicole Smith

Saturday, September 10th, 2011

2011-09-13T21:11:00.000-06:00

It was such a busy day and I went from one fun event to another. The morning started with a trip to Hollywood Connection with Hope Kids. We were a little early so we stopped by Decker Lake to feed the ducks. When we got there it took a few minutes for everything to open up so I had a chance to check out everything we would be able to do. We started off playing minature golf and as we were finishing up, cousin Jackson and Aunt Kristin showed up. So they joined Mommy and I on the dragon roller coaster. It was fast but I loved it - Jackson not so much. He decided he didn't want to go back on about 1/2 way through the ride. Over the next hour we got on the carousel, the bus ride, and the hot air balloon ride. Then we headed up stairs to the arcade and played skee ball and other arcade games until we had almost 500 tickets to spend. We went back down stairs to hit the hot air balloon and bus rides before it was time to go. After Jackson left I snuck back on the dragon rollercoaster for a final ride! Hollywood Connection opened early just for Hope Kids and we had such a great time. Thanks Hollywood Connection!

After all the fun we stopped by the Cracker Barrel for breakfast since Daddy had never eaten there. Mommy and I could have spent forever browsing the shop with all the knick knacks - espescially since they already had their Halloween and Christmas stuff out.

We had a little breather at home before heading out once again to a nearby park for the Children's Craniofacial Association picnic. Despite falling and reskinning my nose I wanted to ride my bike and play on the playground. We met up with several families we had met before and some new ones as well.

We had a little bit of time to get the blood cleaned off me from the fall before leaving once more to go to Ava's third birthday party. It was a Little Mermaid theme and not only was there a princess bounce house but Ariel even made an appearance! I was willing to make a crown with her but refused to have any pictures taken with her!

It was such a fun day I think I am going to have to take it easy tomorrow!

Peyton Nicole Smith

Thursday, September 8th, 2011

2011-09-09T20:50:00.000-06:00

On our way to the grocery store tonight, Mommy saw that The Healing Fields were set up in Sandy. Every year on the anniversary of 9/11, flags have been set up for every person that lost their life as well as those who lost their lives in Afghanistan and Iraq since 9/11. The years that Mommy has lived in Utah she has always come by and as with every year it never fails to make her a little weepy. I think it took on a little different meaning this year since it was the first time she has brought me to see the flags. Because they had just been set up, it was very quiet and only a few other people were there. It was a peaceful place with the sounds of thousands of flags flapping in the breeze. I decided I kind of liked it and asked Mommy if we could come back with my bike when Daddy got home.

Peyton Nicole Smith

Monday, September 5th, 2011

2011-09-06T22:13:00.000-06:00

That bean bag chair I got for my birthday was just so comfortable I fell asleep in it tonight!

Peyton Nicole Smith

Sunday, September 4th, 2011

2011-09-06T22:10:00.000-06:00

It was a beautiful day for a visit to the zoo! It was short notice but Jackson, Traiton and I met up at Hogle Zoo and had a great time visiting the animals, riding the train and taking a spin on the carousel. I was briefly devastated when the dolphin I chose for the carousel was taken but it only took me a few moments to decide the lady bug was just as good!

In the afternoon my Daddy's side of the family headed to Brighton Ski Resort where we had a picnic to celebrate Dylan's birthday. Mommy, Daddy, Skyler, Dylan and I took a nice hike around the water. It was a great day!

Peyton Nicole Smith

Friday, September 2nd, 2011

2011-09-06T22:00:00.000-06:00

Children's Craniofacial Association is a organization that is dedicated to improving the quality of life for children with craniofacial differences. Nager Syndrome is just one of many that result in craniofacial differences.  Each year more than 10,000 babies are born with a craniofacial difference in the United States.  I am definately not alone!

September is Craniofacial Acceptance month. This year marks the seventh year CCA will observe September as Craniofacial Acceptance Month across the nation. CCA families, friends, volunteers and related support groups will be widening the circle of acceptance for individuals with facial differences. The goal is to create awareness that beyond the face is a heart and the true person within.

Mommy found out through CCA that the Walker family was holding their third annual Lily's Craniofacial Awareness Dinner and Silent Auction. You can find out more about Lily be watching this clip from KSL.com about a surgery she had last year.

http://www.ksl.com/?nid=148&sid=10261750&autostart=y

Mommy, Daddy and I will be attending Lily's fundraiser to help support CCA and other families whose children have craniofacial differences like me. If you would like to support us, here is more information:

Date: Saturday, September 24th, 2011
Time: 6-9 pm
Location: Pioneer Park
                  150 South 500 East
                  Lindon, UT 84042

Tickets are $25 per adult and $10 for children under 10 years old. All proceeds will benefit Children's Craniofacial Association. Please buy tickets ahead of time so they have time to plan for food. Dinner will be served at 6 pm and the silent auction will close promptly at 8 pm.

For more information you can contact Tosha at nursetosha@gmail.com

Peyton Nicole Smith

Monday, August 29th, 2011

2011-09-02T22:02:00.000-06:00

It was my first day of preschool this year and there have been a lot of changes since last year. I am going to a new school with a new teacher. Instead of Grandma going with me I will be going with a nurse and I will be riding the bus. WIth all the changes, I was a little nervous over the weekend and kept asking if Mommy or Grandma could go to school with me. Mommy promised that if I was sad, Grandma could follow behind the school bus until I got to school.

I was so excited to get on the bus, though, that when it actually came time to leave I forgot all about being nervous and Grandma barely got a few photos in first! But as she promised she was waiting for me when I got off the bus to get a photo of the end of my first day. I had a great time, had a lot of fun with Nicki and was ready to go back again. It was a great first day!

Peyton Nicole Smith

Saturday, August 27th, 2011

2011-09-02T21:50:00.000-06:00

2007

2008

2009

2010

2011

Today she is four. No longer a baby and not really a toddler. I never could imagine her being four just as right now I can't imagine her at eight or fifteen or thirty. If I close my eyes I can almost feel the weight of her the first time I held her in my arms but the sweet baby smell of her has already faded. Some moments with her seem to last for an eternity (like trying to get her to sleep at night) but then I look back and it seems like time is rushing past me so quickly it's hard to catch my breath.

Happy birthday baby girl!

Friday, August 26th, 2011

2011-08-31T06:59:00.000-06:00

3rd Annual HopeKids Wasatch Adventure 2011

Wednesday, August 24th, 2011

2011-08-28T14:05:00.000-06:00

The last few days have been filled with trying to get my medications squared away. First, I had been presscribed Prevacid solutabs to prevent any reflux. Grandma Glenda gave me my first dose and it clogged my g tube requiring a g tube change. After doing some research on the tracheostomy website, Mommy thought she had some tips to get it to work. So the next night she gave me my Prevacid and everything was fine. So the following night when she gave it to me she wasn't prepared to clog my g tube again - that's right 2 g tube changes in three days. Mommy then got on the phone to try to get Prevacid in a compound form that would not clog my tube. When she went to pick it up, though, the pharmacy let her know that they had wanted to wait to fill it until talking to me first since it would be $65 a month for the compound vs. $0 for the solutabs. So back on the phone she went to talk about other options and settled on Zantac in a syrup form. It is probably not as effective but since I don't have much in the way of symptoms of reflux it is probably going to be just fine.

As Mommy was in the midst of figuring out the reflux meds she got a call from my pulmonologist that the secretions that the sent for testing came back and I am growing two types of bacteria - serratia marcescens and streptococcus pneumococcal. That will require two types of antibiotics. The first is azithromycin which is five days through the g tube, no big deal. But the second antibiotic was gentamicin and apparently there is a shortage. When Mommy went to pick it up from Rite Aid they told her they only had a five day supply of the 10 day supply that was ordered and it was on back order until mid-September. Mommy called the doctor and had him check with the pharmacy at Primary Children's and they told him it was back ordered until November! Since it is never a good idea to only give part of a dose of antiobiotics the doctor changed the prescription to tobramycin or "tobi". There is a version of tobi made for inhaling through a nebulizer but apparently it is like $5000 and most insurance companies only cover for cystic fibrosis patients. There is another version of tobi that is meant to be injectable but many doctors also have kids inhale through a nebulizer. So when Mommy went to pick up the injectable kind and asked the pharmacists some questions about nebuilizing it he took a minute to catch on.

Since I got on my ashthma meds through an inhaler a year ago I have not used my nebulizer at all so Mommy had to take a little time to locate it and then put together the six or so parts so that it can be used with a trach. As you can see in the first picture I am not too terribly excited to have to nebulize meds twice a day for the next ten days but my parents assure me it will cure my stinky trach so I am going along with it.

Meanwhile, I am enjoying all my new toys - including the bean bag chair and the Hello Kitty eye shadow!

Peyton Nicole Smith

Sunday, August 21st, 2011

2011-08-28T13:32:00.000-06:00

Six days ahead of my 4th birthday we held my party at Aunt Kristin and Uncle Lonnie's house. Since Mommy and I had a sleepover last night we were ablet o get right to work this morning to get everything ready for the party. Jackson and I finished putting together the wave bottles for the other guests and then Mommy decorated the dining room with a net and let Jackson and I pick out where the sea animals would go!

Mommy worked on decorating a table with all the things for the kids - we each got a treasure chest with snacks inside, a wave bottle, a treat bag and a dolphin cup! Just like at Jackson's party a few months ago, we brought back the inflatable Nemo bounce house and even though it was pretty hot we had a lot of fun in the morning making sure it was working well for the party later!

It was hard to settle down but eventually we both took quick naps before having to wake up for the party. All the kids had a great time in the bounce house before we got to work on the dolphin pinata. Then it was time for cakes for the adults and cupcakes for the kids. So a little story about the cake. Mommy had seen a really cute sea themed cake at Target. It had a big octupus on it and so Mommy talked to the cake decorator and asked to have the octupus replaced by a dolphin to match my dolphin theme. Saturday afternoon Mommy went to pick up the cake and the cake decorator was still there. She handed Mommy the cake and said, "I have never made a dolphin out of frosting before." Mommy had to hold back hysterical laughing because as far as she is concerned she still hasn't made a dolphin out of frosting - maybe an eel - but certainly not a dolphin!

After cake it was time for me to open my presents. Last year I had a melt down because I wanted to ride the ponies rather than open presents but with no ponies in sight this year I agreed to letting Jackson open my presents while I watched - I have made some progress over the last year!

It was a super fun party and I had a great time. So many of my friends and family showed up I loved all my presents. As Mommy got me to bed tonight I am already concerned that time is running out to determine the theme for my birthday party next year. Nothing like finishing one party before working on the next one!

Peyton Nicole Smith

Saturday, August 20th, 2011

2011-08-28T13:09:00.000-06:00

Jackson and I got some quality time together today. We started out by going to Traiton's Super Mario themed 5th birthday party tonight. There were a lot of people and unfortunately, a thunder storm came through in the middle of it. With the wind blowing everything around, we decided to head out. We stopped by my house to pick up my overnight bag and then Mommy, Jackson and I drove to his house for a sleepover. Mommy made a quick stop at McDonald's to pick up something for Jackson. When Mommy asked if Jackson wanted nuggets or a hamburger he replied a "large fry". Then, he leaned over to me and said, "this is the fry place."

We got a few hours to play before his parents came home and Jackson and I got to get in the tub together. Then it was story time in the new sleeping bag/blow up mattresses Aunt Kristin had gotten for us. But sleep was not coming quickly enough and eventually he went to his room and Mommy and I stayed in the guest room together. We really need our sleep tonight because tomorrow is my birthday party!

Peyton Nicole Smith

Wednesday, August 17th, 2011

2011-08-17T21:49:00.000-06:00

Genetics - what else can explain why I stick my tongue out just like my Daddy?

Peyton Nicole Smith

Monday, August 15th, 2011

2011-08-17T21:43:00.000-06:00

Just to check the placement of my g tube again, I went to Riverton Hospital today to have an upper GI done. I had to go without eating for 4 hours and then they ran some barium through my tube and watched it on xray to see where it went. As soon as Mommy, Grandma and I headed into the room I recognized it from past traumatizing experiences and started crying. All I had to do was lie down on the table while they pushed the barium through but I cried the whole way through. The technician said the doctor also wanted to see what happened in the esophagus which meant me swallowing some barium. My options were to drink it on my own, have it squirted into my mouth against my will or to have it pushed in through a tube down my nose. None were great options but eventually Mommy agreed to the second. So while I was lying down they pushed root beer flavored barium into my mouth through a syringe. I was so busy trying to swallow it that I didn't have the ability to cry but as soon as I got it down they let me sit up. For the next few minutes they pulled out as much of the barium out of my stomach through my tube as possible so I could start a regular feeding right away.

The technician thought the study looked good - no signs of reflux and although the balloon from the tube is pretty close to the duodenum it doesn't appear to be creating any blockages.

After all that, I was rewarded with a visit from Jackson when Mommy got off of work for the day. Well, it seemed like a reward at the time and for the first hour we had a great time. For the second hour I was ticked off that he wanted to have a snack and watch a TV show so I cried for about 45 minutes straight! But we made up for it the last hour by playing hide and seek together.

Peyton Nicole Smith

Saturday, August 13th, 2011

2011-08-14T17:55:00.000-06:00

For the second week in a row, I spent time with the HopeKids. This time it was at Thanksgiving Point at the dinosaur museum. I think I deserved it, because yesterday I had to go to the pulmonologist. Normally it would be no big deal but when Mommy mentioned my "stinky trach" for the last few weeks they held me down for some deep suctioning to try to get a speciman to send for a culture. I was pretty ticked off so a fun time at the museum was much appreciated!

Daddy and I went about a year ago, but Mommy hasn't been since my cousin Gavin was in his dinosaur stage many years ago. I liked the dinosaurs and playing in the sand but the biggest hit was the cave that is pitch black and covered in "stars". On our way out I got to go to the gift shop to pick out a moon and stars for my room.

After a good nap I got to go to play with cousin Jackson. We had originally planned on going together to the Sandy City Hot Air Balloon Festival but when we arrived a little early and it was deserted we took a detour to the mall instead. We got to ride the carousel and the train together.

Mommy and I went back to the festival around 8 pm and it was packed with people. One of the participants mentioned that the weather report showed 19 mph winds starting up at 9 pm so the plan was to try to get two balloons up and lit for just a few minutes. It was already close to 8:30 and getting darker by the moment. Mommy and I decided to head home and sure enought a little after 9 pm the winds really picked up and we were glad we were sure glad we had left!

Daddy put up my stars and moon so I could fall asleep to them tonight!

Peyton Nicole Smith

Saturday, August 6th, 2011

2011-08-11T20:50:00.000-06:00

For the second year I attended the 3rd quarter Hope Kids birthday bash. This year it was just a little different, though, because my family and friends sponsored it!

My Aunt Kristin got with Hope Kids several months back about helping to sponsor the birthday bash. Aunt Kristin and Uncle Lonnie covered the cost of the rental of the facility and donated gifts and got several other of our friends to get gifts as well - Gil & Traci, Tony & Krista and Crystal. Even we got in on the act and I picked out two presents for some of the other kids who would be attending. Although Tony and Krista couldn't attend everyone else got to see all the fun the Hope Kids and their families had. Uncle Lonnie, Aunt Kristin and Crystal even helped take photos of the event. Even better I got to see Antonio open the gift I picked out for him - a Disney Princess Cinderella doll!

Jackson and I had lots of fun in the bounce house and on the skating rink. Elizabeth quickly took me under her wing when we arrived and helped me up and down the ladders in the bigger bounce houses. She is such a sweetie!

We all had a great time and it sounds like my family and friends are going to try to sponsor again next year!

Peyton Nicole Smith

Monday, August 1st, 2011

2011-08-07T22:12:00.000-06:00

Who knew I would find my best friend in life already?

Peyton Nicole SMith

Thursday, July 29th - Sunday, July 31st

2011-08-07T22:07:00.000-06:00

Since it is summer, it was time for a summer vacation! Unfortunately, Daddy needed to stay in town for inventory but me and Mommy joined most of the rest of her side of the family (Jackson, Lonnie & Kristin, Traiton & Jason and Gavin) to head to Portland to visit Great Grandpa Gil, Great Grandpa Larry, Great Grandma Joyce and Uncle Steve and Aunt Jan. Mommy, Jackson, Aunt Kristin, Gavin and I left Thursday morning. Uncle Lonnie flew in Thursday evening and Traiton and Uncle Jason flew in Friday morning.

We spent most of our time between Steve & Jan's house and the park but we also made two stops to Vancouver's Farmers Market and Grandma Joyce and Grandpa Larry's house. We had such a great time! Steve & Jan set up a slip & slide and we also go to roast marshmallows over their fire pit. We all flew home together on Sunday night and got into Salt Lake around 10 pm. What a weekend!

Peyton Nicole Smith

Tuesday, July 27th, 2011

2011-07-27T22:02:00.000-06:00

We got a call from my GI doctor with partial results from the testing that was done while I was inpatient a few weeks ago.

1. The biopsies of my intestines were normal.
2. The h pylori test was negative.
3. Within my stomach there were just a few cells that might indicate allergy or reflux.
4. Within my esophagus there was more cells that might indicate allergy or reflux.
5. The impedence probe test is complete but she is still working out the percentages. Just looking at the numbers if there is reflux it doesn't look like much.

So now what? Her two recommendations were to introduce Flovent and Prevacid. Since I am already taking Flovent for my asthma symptoms it looks like I will need to start up on Prevacid. Then 4-6 months from now I will probably need a follow up endoscopy to see if the medication is helping. She is also going to send out some information on a no-milk diet. Although I have a significant allergy to milk, every now and again I will have teeny tiny itty bitty amounts of food that contain milk. To be on the safe side, Dr O'Gorman wants my parents to cut all milk out of my diet. So not any real bad news but another medication to add to the list.

Peyton Nicole Smith

Monday, July 25th, 2011

2011-07-27T21:41:00.000-06:00

To celebrate the long weekend, my parents got a few hours of alone time while I was at Grandma and Papa's house. They hopped on the motorcycle, stopped off for breakfast and than headed south to ride the Alpine Loop. It was a beautiful day but just as Mommy started snapping pictures the camera died so sorry - you won't be able to see just how beautiful!

In the afternoon, Mommy came to pick me up and then together we picked up Grandma Marilyn and then met Aunt Kristin, Jackson and Uncle Lonnie in Cottonwood Heights for the annual Butlerville Days parade. It was super hot and humid but as soon as the parade started up Jackson and I forgot all about the heat and concentrated on the candy being thrown out to the crowd. We had a nice little stash before long!

Several different floats had kids with water guns. With my hearing aids and trach - water guns are a wee bit dangerous to me. Mommy wasn't sure if it was better to try to cover me up and draw attention to ourselves or just hope they didn't aim for me because I am so small. She decided to go for protection but that seemed to be the wrong decision as several kids aimed right at me. Hmm.... Jackson and I were both a little unhappy about the water guns so we tried to hide behind Uncle Lonnie when we saw others coming. At the end of the parade, a fire truck would stop periodically and turn on the water and allow kids to run through if they wanted. That was no big deal because people could choose to get wet. The very last part of the parade, though, was a water truck. It was hosing everyone and everything down as it headed down the street. Everyone in our group moved as far away as we could to avoid the spray but all of our stuff got soaked! I'm sure it seemed like a good idea at the time.....

Despite the water, Jackson and I are totally excited about going back next year!

Peyton Nicole Smith

Sunday, July 24th, 2011

2011-07-24T21:45:00.000-06:00

Ever since Uncle Jeff went to Park City last fall he has been asking my parents to bring me up the mountain to check out the Park City Resort in the summer. With mid 90 degree temps in the valley, it seemed like a great day to go up where it would be about 10 degrees cooler.

The resort opened at 10 am and when we arrived at 10:30 it was almost deserted. There is so much to do - zip line, alpine slide, trampoline jump, minature golf, roller coaster, rock climbing wall and two kiddie rides - that we first had to decide where to begin. Although I wanted to go right to the carousel my parents told me I had to go all the way up the ski tram and down the alpine slide to get to the carousel that was just a few feet away. Hmmm... Anyway against my wishes, I hopped on the tram with Daddy, Mommy and Uncle Jeff and started heading up the mountain. Apparently the tram is like the speed of light during the winter but in the 85 degree heat it was barely crawling. It gave us plenty of time to work on our tans and check out the gophers, chipmunks, zip line, roller coaster and alpine slide from above. A few times I got a little antsy and was more than ready to get off when we reached the top. Although Daddy and Uncle Jeff were ready to fly down the alpine slide, all of us went down the slow lane. Since I can't ride alone yet, Uncle Jeff and I went down first. After whining for the first few seconds I was having a blast and asked him to go faster! Mommy followed behind us and I was there to greet her at the bottom. After she got off she was able to get a quick photo of Daddy as he made his way to the bottom.

We had a quick drink and then I headed to the carousel. Uncle Jeff took me on that as well and Daddy and Mommy were both a little anxious as it became apparent this was the fastest carousel in the world. They had a little fun watching other newbies hop on and parents be more than a little surprised when it took off! Lots of comments of "this is really fast" floated by.

After my carousel ride, my parents weren't sure if I would go on the airplane ride or not. I haven't ever really been on any rides before and this one I would have to go by myself. I was a little nervous but four other little kids got on with me so that made me feel a little better. Once I got my plane off the ground I was hooked and couldn't wait to get on a second time! By that point everyone was melting and ready to leave and I had a little freak out when I discovered two was going to be my limit for the day. It was a great test though and my parents think a trip to Lagoon is in order later this summer when it cools down.

On the way out Mommy got distracted by the Rocky Mountain Chocolate Factory so we had to stop in for a treat. Mommy got a frozen banana (they were out of root beer for her root beer float), Uncle Jeff got a cake batter ice cream cone, Daddy got rocky road candy and I got a gigantic neopolitan lollipop. I had a few good licks but it didn't take long before my eyes got heavy and I fell asleep half way down the mountain.

Peyton Nicole Smith

Saturday, July 23rd, 2011

2011-07-24T21:24:00.000-06:00

Since Grandma and Papa Smith were out of town for most of the 4th of July holiday, we got together tonight for the 24th of July holiday (for those not in Utah that is a State holiday called Pioneer Day). With the recent change in the fireworks laws in Utah, it is a free for all for pretty much the entire month of July and so fireworks were on the agenda. I had gotten a long late afternoon nap to be able to stay awake for them.

After eating dinner out on the patio, we needed some cooling down so Grandma pulled out the water guns and just about everyone got wet. I was even used as a human shield by a few folks (apparently it is bad form to shoot a water gun at a child with a hole in her airway - hee hee).

We dried off in the late evening sun and then I got to experience sparklers for the first time. I thought they were great and called it my "magic wand". As soon as it got dark enough we let off some fireworks and as aerials are now allowed in Utah we got quite a show from a few of the ones we had purchased as well as others in the neighborhood. It was pretty late but well worth it!

Peyton Nicole Smith

Friday, July 22nd, 2011

2011-07-24T21:05:00.000-06:00

After a week of not seeing my cousin Jackson, I was super excited to go to his house tonight to play. On the way over when Mommy asked who I loved best of all I was honest - Jackson!

Jackson was just as excited to see me but when two 3 year old's come together there is still lots of arguing and fighting - lots of threats from our mommies that if we don't start getting along we will have to be seperated!

Peyton Nicole Smith

Monday, July 18th, 2011

2011-07-20T22:22:00.001-06:00

A note from Mommy:

What do I hate worse than camping (and man do I hate camping) - marathon craniofacial appointments of course! Okay so they aren't completely terrible but any time you combine a 3 year old with 4 hours of hurry up and wait during prime nap time it is bound to be good times for all involved.

Craniofacial panel at Primary Children's differs slightly from what we experienced at UC Davis and Lucile Packard. We were given a paper at check in detailing each of the six areas that would be represented and the provider that day for that area. of the six areas we ended up only really seeing four - plastic surgery, ENT, orthodontics and speech. While we waited about 90 minutes to get in for the first appointment we met up with some blog friends who also had their panel appointment at the same time - so fun!

First up was plastics with Dr Morales. Since we had only seen Dr Morales a few weeks earlier it was a sense of deja vu about what the plan will be for Peyton's future surgeries. First up will be a surgery to release the ankylosed joints. Once released, then Peyton will need to use a TheraBite (or something similar) to exercise the released joints to prevent them from ankylosing again. The hope is that once the joints are released then there will be enough room to be able to complete a pharyngeal flap surgery to modify her palate. By the time all that is done it will probably be time for another jaw distraction. We will see him aagin for follow up to the distraction in December but the joint surgery will probably be a year out. And with that timeline all hope of getting a trach out by the age of five went out the window! Actually, we'll be lucky if all the surgeries are completed within 2-3 years. Just because Dr Morales is Dr Morales he had the resident look into Peyton's mouth at her palate and shared somewhat flippantly how difficult the palate surgery was going to be. Although I fully trust in his skill set, who really wants to hear that your child's case is complex, difficult or challenging? Just for once it would be nice to hear that Peyton is a typical or easy case but I won't hold my breath ; ) While we were meeting with Dr Morales, he asked Peyton's age and instead of hearing almost 4 for some reason he heard 4 1/2. When he repeated that back Peyton must have liked what she heard because in every other appointment (or when talking to random strangers in the elevator) she told them she was 4 1/2. I let her know not to believe everything Dr Morales tells her - hee hee!

Back to the waiting room we went and just before Peyton was ready to have a melt down over wanting to ride in the car we got called back to orthodontics/dentistry with Dr Yamashiro. We presented Peyton's panoramic xrays from a few weeks back and he proceeded to share lots more good news! First off, the xrays appear to show cysts potentially developing - wonderful! In addition she is considered high risk to have pathological fractures of the few teeth she has remaining - awesome! The xrays also showed pretty clearly that are problem with fused baby teeth will also follow her into adulthood as some of the same permanent teeth are fused as well - cool! Finally, when I asked about when Peyton will be old enough to have implants to hopefully restore her adult mouth to a more normal appearance he shared the great news that it probably won't be until closer to 18 - great! Yes, Peyton will get to go through most of her teenage years with truly awful looking teeth. Unfortunately, distracted jaw bone is not nearly as developed as what will be needed as a foundation for implants. Therefore, she will probably need to have the bone built up ahead of time and we can't do any of that until we are pretty much done with all the jaw distractions she will need. Okay so I know I sound a wee bit bitter but after the first appointment with Dr Morales to hear nothing but bad news throughout the next appointment was just lovely.

And back to the waiting room we went with that information floating around in my head. Then it was time to meet with Helene the Speech Therapist. Since Peyton is already being followed by Courtney for Speech and Feeding, it was more of a catch up session on what has happened over the last year so no big bombshells thank goodness!

Back to the waiting room we went once again. Since I hadn't eaten all day and it was now nearing 4 pm I was more than a little grumpy and was having difficulty remembering small details like dates, names of procedures and such when trying to update all the different folks we had been cycling through. It was with relief that we were called back to meet with Dr Smith the ENT. Although Dr Muntz was the ENT who performed Peyton's bronchoscopy on Friday, he was not the ENT covering the panel today. I tried to catch him up quickly on her more recent history. He threw in the comment, "Distractions are really effective - except for children with Nager. It doesn't seem to work so well for them." Super! I was wanting to get an idea of the timeline to implant Peyton's bone conduction hearing aids so he suggested that I make an appointment with Dr Muntz a few months out to determine next steps for that - most likely it will require a CT scan to determine if the thickness of her skull is where it needs to be. If not, we will need to wait until she is older. I asked if Peyton would be safe to do any pool time while she was capped but as I suspected the cap does not completely seal off the stoma so swimming is off the agenda at least for the forseeable future. I mentioned that we would need to be finding an audiologist soon now that Peyton won't be attending USDB and getting regular hearing tests and Dr Smith jumped all over that and ordered us to go up to the hearing lab on the 4th floor and get that taken care of. Most of the time I would have been really appreciative to get it out of the way and not have to come back but as my blood sugar was dropping my patience was wearing thin. But up to the 4th floor we went and after a brief wait Peyton and I headed to the sound booth. For the first time, I actually sat with the audologist in the control booth while Peyton sat with the tester in another room. Peyton could see me through the window and despite the marathon afternoon she was perky and happy to go along with the test. The only problem we kept running in to was that she wanted to spend more time talking to the tester about her birthday party then she did wanting to listen!

We had been asked to bring the results back to the clinic so we ended up back where we had started. Although we had yet to talk to the nurse or the social worker they took pity on me and let us head home - 4+ hours after we started.

It has taken me a couple of days to digest all the information. I think I am over the initial shell shock but now the reality of all that awaits Peyton in the next several years (and that's just what we already know about!) is sobering. Since the hope for a decannulation is moving even further from our reach I am struggling again with the disappointment of not meeting the goals that I had set to try to have the majority of her surgeries completed and for her to be trach free by kindergarten. It's not going to happen. I remember when she was an infant and someone mentioned a trach removal probably by kindergarten and I thought that seemed like forever away and we are just about a year out and counting - it is just so unbelievable to me! Just as I have done in the past I will try to take this in stride and keep pushing on. I think the marathon of the craniofacial panel is really just a metaphor for Peyton's medical journey. We really are just in the first few miles but although the finish line is not yet in sight it really is out there somewhere on the horizon - I have to trust in that.

And on that hopeful note a video of Peyton and her new stupid trach trick - Letterman here we come!

Saturday, July 16th, 2011

2011-07-17T21:22:00.000-06:00

At 6 am on the dot I woke up, shook Mommy and pointed out the window to the brightening sky - it was morning! Mommy was pretty groggy but admitted she had told me once it was light out that it meant it was morning and we would be able to go home soon. I was in a great mood but getting pretty antsy. Mommy had me watch some videos while she went down to the cafeteria to get some breakfast and coffee. When she got back I had a little time to play with my pool again. About 9 am, Mommy got permission for her and I to walk around the halls together and eventually I spotted a wagon and decided I needed one too. Unfortuntely, it didn't belong to the infant unit but we got permission to go up to the fourth floor and get a car. I was in heaven and spent the next 90 minutes going up and down halls as fast as I could. There were a few close calls with the doctor's making rounds and a few pieces of medical equipment but eventually we got the notice that the orders were signed and we could leave! Before heading out the door, though, the nurse had to remove the tape from my face and pull the tube out of my stomach - yuck! It only took a few seconds and then I was able to get dressed and get all my stuff together to head to the car. I waved at everyone on the way out and Mommy let me stop to throw some more money in the fountain. As she got me into my car seat I told her, "I had a great time at the hospital" but when Mommy asked if I wanted to stay another night I responded with a firm no!

We grabbed some lunch on the way home and I got a few minutes to play before both Mommy and I took at nap. In the evening we stopped by Grandma and Papa Smith's to drop off the car they had let Daddy borrow and then on to the dealership to pick up Daddy's car. Then we went to dinner at Mimi's. I had tons of fun coloring before heading home for a bath and bed.

Peyton Nicole Smith

Friday, July 15th, 2011

2011-07-17T21:14:00.000-06:00

Mommy just loves surprising me! She woke me up at 6 am to head in to Primary Children's for some tests. On Wednesday, she got a call from the scheduler that they had a cancellation today and hoped we could take the appointment. So last night Mommy turned off my feeding at midnight and switched me to Pedialyte until she woke me up. I got dressed still half asleep and then gave Daddy some kisses before we got into the car. I was in no mood for tests and I cried a little on the way in. When we arrived, Mommy let me throw some money in the fountain which brightened my mood.

When we made it to the presurgery area I had about 20 minutes to play before they called me name, but as soon as they brought me back to be weighed I knew exactly where I was and refused to get on the scale. Eventually I stopped crying long enough to get a height and weight (28 lbs 1 oz) and then was led back to the exam room. Once again, I knew I was in for some trouble when I saw the standard issue PJ's waiting on the table. As nurses came in to update Mommy and get my blood pressure (147/76), temp and O2 saturations I was pretty upset so Mommy talked them into letting me wait to put on the PJ's until after I got the Versed. A few minutes later they returned with the meds and I pushed them in. Immeadiately they had me go to the second waiting area but warned Mommy to hold on to me since the Versed would take it's toll quickly. With all our past experience with it, Mommy figured she had a few minutes but it was only seconds before I got all wobbily which meant she had to carry me to the play area and keep me sitting up to play despite my insistence that I could walk around on my own. At one point Mommy had me sitting on the floor and had one arm around my waist, as she went to reach for a toy I fell face first into the carpet - the Versed is good stuff!

A few minutes later the anesthesiologist came by and let Mommy know that since I am rumored to be such a fighter in the post op area that he was going to try a different medicine that will allow me to wake up slower and calmer - Mommy was on board with that! He told Mommy to put me in the wagon with the toys I was using and he would lead us back to the OR. When we arrived in the hall and Mommy tried to take my hearing aids I threw a fit so he had Mommy follow him into the restricted area and had her wait right outside the OR door while he hooked me up to the anesthesia. Once I started to drift off, he brought the hearing aids out to Mommy and she found her way back to the waiting area.

She had about 40 minutes to relax before Dr OGorman (GI) and Dr Muntz (ENT) arrived. They brought her into the consultation area to discuss the findings. Dr Muntz performed the laryngoscopy and bronchoscopy. Although my airway looks great (no granulation tissue or granulomas) my airway is still pretty small and too risky for decannulation in case I had more surgeries and needed to be intubated. Mommy was not entirely surprised but the discussion was to look at it again in a year or when most of the surgeries were completed.
Dr OGorman shared some photos of my internal organs and verified that although my button balloon was awfully close to the duodenum there were no signs it was creating any blockage. She did say that when she did the endoscopy, placed the ph probe and got the biopsies there was signs of esophagitis (inflammation of the esophagus) but until the probe test and biopsies came back the cause was not known - it could be reflux but it could also be allergies. Even if it was reflux, it wasn't too bad. With that, Mommy had a few minutes to take it all in before she was called back to post op.

The nurse caring for me has cared for me in post op before and remembered what a fighter I was. But with the new drug the anesthesiologist gave me, she and the nurse had plenty of time to talk because instead of taking me just a few minutes to wake up they sat together for almost 90 minutes! When it came time to move me to my room I still wasn't awake! While waiting in post op they had some discussions about where to put me and settled on the infant unit. Although the infant unit is traditionally for children up to age 2, due to staffing that is where I ended up. On the drive up I started to wake a little but fell back asleep before reaching the room and stayed asleep for another hour or so until Uncle Jason arrived for a visit. Mommy was grateful for the iced coffee and bagel but didn't have much time to enjoy it before I woke up and was pretty ticked. In post op they had placed "no no's" on my arms to keep me from pulling out the ph probe but once I was awake enough to understand, Mommy told me she would take them off if I promised to leave the probe where it was. I agreed and off they came. Just as Uncle Jason was leaving, Grandma and Papa Smith came by to check on me too. I was supposed to have a chest xray to verify the placement of the probe before eating but I had already gone 6 hours without anything in my stomach so Dr OGorman overrode her orders to allow me a feeding before heading down. With a little in my tummy, the four of us and the nurse headed down to the radiology department. Just like always I freaked out and needed several techs to hold me down to get the xrays but I stopped sobbing as soon as it was over to make sure I put in my request for a sticker - which I got. Rather then riding in the crib on the way up, Mommy carried me and instead of putting me back in the crib when we arrived at the room, Mommy let me sit in the rocking chair and watch Caillou on her phone.

After a while, Grandma and Papa Smith headed home and Mommy and I got some time to relax a little. Mommy had to learn how to work the machine attached to the probe and Child Life brought me a craft project, toys and some books to help keep me entertained. Mommy and I had just finished up the craft project when Aunt Kristin showed up with a cool Barbie pool toy. Mommy helped put it together and at first I played with it without any water. After Aunt Kristin left, though, Mommy let me put a few cups of water in to really try it out. Around 6:30 Daddy stopped by after work. He and Mommy headed down to the cafeteria to get some dinner while I stayed and played with the nurse who I was already fast friends with. When they came back I had some more time to play with Daddy and then we put in the Toy Story vhs tape. Daddy headed home to my furry brothers while Mommy stayed with me. When Mommy broke the news we had to stay the night I demanded to go home. She told me that she had to stay the night at the hospital and could I stay with her to keep her company and I reluctantly agreed. The nurse changed out the crib to a big girl bed so Mommy and I could sleep together. We finished most of Toy Story and then read a few books. I finally fell asleep around 11:00. But sleep was not on Mommy's agenda. She had decided to use my feeding pump from home which the nurse didn't no how to use and she also had to keep hitting buttons on the machine attached to the probe. Since I was going to be getting alternating feedings of formula and apple juice every four hours - Mommy didn't get much sleep. In addition, at 4 am then nurse tried to flush my IV and I bolted awake pissed off. At that point I had been tolerating all my feeds so Mommy held me down while the nurse removed the IV. But I was wide awake now so Mommy popped in the Little Mermaid and I fell asleep about 20 minutes in. Mommy fell back to sleep with me one last time.

Peyton Nicole Smith

Wednesday, July 13th, 2011

2011-07-14T21:37:00.000-06:00

I have a favorite dolly (who I refuse to name) and the other day I got to buy her a new outfit. It came with shoes, a dress and a headband. When I went to hang up my hearing aids at the end of the night, I took my dolly's headband and told my parents I was hanging up her "hearing aids" too.

Peyton Nicole Smith

Sunday, July 10th, 2011

2011-07-14T21:26:00.000-06:00

Yes, Uncle Jeff and I are wearing parrot glasses and a parrot hat. I saw them at the store and absolutely had to have them. Mommy shouldn't be surprised, I own more glasses, hats, shoes and purses than she does and I'm not ever four yet!

Peyton Nicole Smith

Saturday, July 9th, 2011

2011-07-14T21:18:00.000-06:00

Really we could so be twins!

Peyton Nicole Smith

Friday, July 8th, 2011

2011-07-14T21:15:00.000-06:00

Julz and Mommy met in 1995 at First Health. Although they have lived hours away from each other for about a decade and talking on the phone doesn't happen as much as they would like, they still consider each other "besties". And because they are, Mommy feels no guilt in totally stealing these photos from Julz and Joe's blog!

Mommy took some vacation hours and spent some time with Julz and her new husband, Joe when they came to Salt Lake for a concert. They had to stop by Training Table for lunch and then Mommy came to pick me up and I entertained the newlyweds for several hours while they all caught up. I have been changing my mind over the last few days on what type of a birthday party theme I want and then Julz showed me all her fun dolphin jewelry and now I am sure that is what I want!

Wish you lived closer, Julz and Joe!

Peyton Nicole Smith

Tuesday, July 5th, 2011

2011-07-06T07:44:00.000-06:00

In prep for my craniofacial appointment on 7/18, Dr Morales asked that I get a panoramic xray done. Now if you have followed my blog you know that getting traditional xrays has been an awful experience for many years. The last xrays in the spring for my shoulder and my jaw took an hour and resulted in emotional scarring. Add to that my past hypersensitivity with anything to do with my mouth and Mommy was a little nervous.

It was only a few minutes after we signed in that the tech brought us back to the xray room. Although I have been to the dental office at Primary Children's multiple times, I had never been in the xray room and was a little hesitant. Once Mommy explained that there were "no hands" (I wasn't going to be held down) I cheerfully responded with "OK" and was happy to go along. The tech got me on a chair and covered me with the xray gown (that is usually enough to set me off but I was fine) and then I had to get my chin positioned on top of the metal, my head between two arms and I had to put a small piece of plastic in my mouth. And then I had to sit completely still for about 30 seconds as the xray film rotated around my head. Mommy stood on the other side so I could see her and encouraged me to sit perfectly still and once it was done I demanded a sticker and we headed back to the waiting room for the film to process. While we waited the tech brought me a sticker and a ball for being so good. I was content to play for a few minutes but the tech came back and said I had "wiggled" just a little so we had to do it again. Before Mommy had time to cringe, I shouted "yeah!" and went running back to the room to do it again. So back on the chair I hopped and Mommy encouraged me to do like we do with the Yo Gabba Gabba songs and "hold still" and "freeze". I was happy to play along and within a few minutes it was all over and back to the waiting room we went. The receptionist was so taken with me she asked Mommy if it would be okay to send me down to the cafeteria for a complimentary ice cream treat but Mommy broke the news that I have a severe milk allergy. A few minutes later, the tech came back out with the film to take to the appointment next week and you can see it above. Let's just say I will need a lot of orthodontia work in the future which is not unusual for children with Nager Syndrome!

Mommy and Grandma Glenda were very impressed with me and how well the appointment went. I have really grown up in the last year and with the exception of the traditional xrays I like going to my doctor's appointments now.

Peyton Nicole Smith

Monday, July 4th, 2011

2011-07-06T07:19:00.000-06:00

4th of July dawned bright and early in our household as I was awake by 5:30 am! That's okay because we had plans to head up to Brighton Ski Resort for their annual pancake breakfast and parade. With it heating up in the valley it was nice to head up where it was much cooler - and there was still a little snow on the ground!

Jackson, me, Mommy, Aunt Kristin and Uncle Lonnie met Grandma and Grandpa Mower for the pancake breakfast at 8 am. Apparently veterans of this event realize that 8 am is way too early and wait until closer to 10 am to eat their breakfast. Because we had several hours before the parade would start, Jackson, Uncle Lonnie, Mommy and I went on a hike around the lake. We spotted elk tracks and saw a few chipmunks. Uncle Lonnie scared me when he said he saw a snake in the water and I made Mommy carry me the rest of the way. As the time drew close for the parade, we set up our chairs along the route and threw pop it's and Uncle Lonnie fired a cap gun. (Neither Jackson or I liked that at all).

I have never been to a parade and was super happy when the folks in the parade threw candy at us as they drove by. It was so much fun to wave at everyone and a local photographer took some photos of us (you can see the photos here: https://skydrive.live.com/?cid=2676ebdd0736b50d&sc=photos&Bsrc=Photomail&Bpub=SDX.Photos&id=2676EBDD0736B50D%21436&sff=1)

There was a World War II veteran in the parade and that got Mommy, Grandpa and Grandma to crying. I wasn't sure what all the fuss was about but I blew him kisses as he drove by. As the parade came to an end, the only way out was to drive on the parade route and several people threw candy into the open windows of the car - cool! Jackson and I have decided that we are going to get lots of candy next year and be in the parade!

After a long nap, Daddy and Mommy and I went out to eat and as it got dark we camped out at the Sandy Ampitheater to watch the fireworks going off across the valley. Since the laws changed to allow aerials it was quite the show since everyone seemed to have bought them this year! I was interested for about five minutes and then I just wanted to play with Daddy's binoculars. There was a small miscommunication about the location so I never met up with Jackson, Uncle Lonnie, Aunt Kristin and Grandma and Grandpa as planned but we'll make sure to work it out for next year.

I was home around 10:45 but it took me until after midnight to fall asleep - what a day!

Peyton Nicole Smith

Saturday, July 2nd, 2011

2011-07-03T05:58:00.001-06:00

With summer (and hot weather) finally upon us it is time again to announce the upcoming Wasatch Adventure 5K to benefit HopeKids. Although I got sick last year and wasn't able to walk, my supporters raised $565 on behalf of HopeKids - exceeding my $500 goal. I am hoping we can raise $500 again this year for Team Princess Peyton!!! If you would like to help support me and the fun experiences this group provides for me and my family you can follow the link below.

http://www.firstgiving.com/fundraiser/princesspeyton/3rdannualhopekidswasatchadventure2011

Peyton Nicole Smith

Sunday, June 19th, 2011

2011-06-20T21:24:00.000-06:00

Happy Father's Day Daddy!

Love, Peyton

Saturday, June 18th, 2011

2011-06-20T20:37:00.000-06:00

What I thought was going to be a day being lazy around the house turned into lots of fun. First Daddy had to unload a truck at work. Mommy and I invited ourselves along. We packed my bike and while Daddy used the forklift to take pallets of wood off the semi, Mommy escorted me around the warehouse on my bike. Daddy even let me take a short ride on the forklift with him when we opened the gate for the driver of the semi truck.

I was a little distressed at having to leave so Mommy suggested we head to Gateway to view the Chalk Art Festival. It was already getting warm but we had a nice time strolling along checking out the works of art in progress. My favorites were the ones with Disney characters! When we reached the end of the art we had made it to the fountain. Although there were a few kids running through the water it was a little too overwhelming for me and I decided just to watch.

My shoulders were starting to turn pink from the sun so my parents headed to the Discovery Gateway which is an interactive children's museum. I had lots of fun playing in the water, shopping in the Peyton-sized grocery store and getting on the horse. I told my parents that the next time we would have to bring my cousin, Jackson with me because he would love it too.

Peyton Nicole Smith

Friday, June 17th, 2011

2011-06-18T20:10:00.000-06:00

This is what my family calls my "Hollywood" look. I like nothing better than to traipse around town in my Jackie O sunglasses and sun hat!

Peyton Nicole Smith

Thursday, June 16th, 2011

2011-06-18T20:06:00.000-06:00

What do you get when you combine two 3-year-old's with cement? A super surprise Father's Day present. So we'll have to keep it a secret until after Uncle Lonnie and Daddy get their gifts!

Peyton Nicole Smith

Tuesday, June 14th, 2011

2011-06-14T21:52:00.000-06:00

Butterfly Peyton

Sunday, June 12th, 2011

2011-06-13T21:41:00.000-06:00

What sounds like tons of fun on a hot summer day? Taking two 3 year old's to a crowded zoo, right!! While Jackson's parents were out of town, Daddy, Mommy, Uncle Jeff and I met up with Jackson and his grandparents from Tennessee to spend the afternoon at the zoo. By the time we got there at 11 am it was packed! Trying to keep two three year old's headed in the same direction at the same time was somewhat challenging - like herding cats. But we were never too far apart from each other as you can see in the pictures above. In fact, one woman asked Mommy if we were twins!

There were dinosaurs on display at the zoo and Jackson is currently a dinosaur fanatic. But because they were moving and roaring he was more scared than excited to see them. If he thought that was scary he was in for an unpleasant surprise when the elephant statue suddenly sprayed water at the precise moment he put his face in front of it! It's a pretty forcefull spray and probably stung a little but definately scared him! I caught a little too but I was more upset that Jackson was crying and started crying myself! A whirl around the carousel and we were in a better mood but hungry and tired. After a few snacks it was time to go.

Peyton Nicole Smith

Saturday, June 11th, 2011

2011-06-11T21:54:00.000-06:00

Ok so maybe swimming isn't on the agenda (despite what her PT at USDB mentioned as a great summer activity in her progress report - hee hee) but there is nothing stopping me from running through my new turtle sprinkler. I just need to take off my hearing aids and put on my cap and away I go!

Peyton Nicole Smith

Thursday, June 9th, 2011

2011-06-11T21:47:00.000-06:00

A note from Mommy:

I'm not even sure where to begin after today's surgery consult about the placement of Peyton's gtube. OK actually I do know where to begin - for every other time the option of surgery was put before us we didn't really hesitate. This time around we don't have a clear direction and that is not something we are accustomed to.

For those who haven't followed her blog from the early days, Peyton's gtube was placed when she was three weeks old. Although we didn't know it at the time, the placement of the gtube was unusual as compared to most other children. When she was about 2 1/2 months old the switched out the gtube and put in the Mic-KEY button. Most of the time when I blog I still call it a gtube but it is actually the button. At the time that the Mic-Key was placed, Peyton had some granulation tissue growing around the stoma which is pretty common. At the time they measured her for the button they measured a little bigger to accomodate the tissue. A few months later Peyton was admitted for a pyloric blockage. The stem of the Mic-KEY button was too long and had migrated into her pyloris causing an obstruction. She went from a button that was like 2.3 to where she is now which is 1.5. We briefly tried out a 1.7 last fall but are now back to the 1.5. So in four years we have yet to truly upsize from the placement she had when she was a few months old and she is now almost four so that tells you the button they first put in was WAY TOO LONG!

When Peyton first came home she was on breast milk but when she was transitioned to formula she began to have more and more incidents of vomiting. At the time it was attributed to reflux which is common in non trached/non gtubed babies let alone kids with extra holes! There was no testing done, but she got started on reflux meds but even that did not seem to help much. At around 7 months old, she developed a short lived stomach virus that resulted in a long lived "lactose intolerance". Her GI at the time moved her to a soy formula and the vomiting virtually went away completely. In May of 2010 while hospitalized for an URI, they did a blood test and determined her "lactose intolerance" is actually a severe milk allergy which was probably the cause of all the vomiting all along.

After moving to the soy formula we spent the next year moving her off of continuous feeds to 5 bolus feeds during the day and eventually we even got her off of night feeds all together. We also did away with the reflux meds. In the summer of 2009 her night nurse started to notice that she would wake up in the middle of the night in pain clutching her stomach. This led to the infamous showdown in which the nurse said we were starving Peyton. Eventually, I witnessed the button "sucking" in after she woke up one morning before I could start her first feeding of the day. We contacted Peyton's GI but she had never heard of anything like it before. As the months passed, we noticed that as soon as we would put a little milk through the button when it was sucking in it would release. I did some research online and came across a few adults on some gtube forums who had experienced the same thing and they had also determined that starting a feeding was the only way to short circuit it. Although certainly not experts in anatomy Travis and I came to the conclusion that when Peyton's stomach was empty too long, the muscles of the stomach would start contracting and pull on the stem of the tube.

In late summer of 2010, we got into the dysphagia clinic at Primary Children's. We had just started back up with night nursing and had instructed the nurses that when Peyton would wake up in pain clutching her stomach to run a little water through the tube. Unfortunately, they were having to do it multiple times a night and it resulted in a lot of interruped sleep for Peyton. When Dr O'Gorman saw Peyton in clinic that day it just so happened that the button sucked in while we were sitting there. She was honest that she had never seen anything like it. With Peyton's jaw distraction looming on the horizon she didn't want to do anything at the moment except to get an upper GI study to look at the anatomy and determine if there was anything concerning about the placement in the meantime. When those results came back that yes it was not normally where a tube was placed but it didn't look to be causing any harm we agreed that we would keep things as they were until after the jaw distraction.

Post distraction we started seeing Peyton's speech therapist again. With Peyton now able to open her mouth and Courtney able to see in she mentioned that she saw some "cobbling" which could be indicative of reflux. Since we had dysphagia clinic coming back up, she recommended that we talk with Dr O'Gorman about it just to be safe.

With the distraction behind us, Dr O'Gorman felt that it was best to plan on moving the tube and during the surgery if the scope showed signs of reflux to plan on the Nissen procedure at the same time. And so that is how we got to Dr Downey's appointment today.

First off, Dr Downey had us go through the long history I just gave you above. He verified that Peyton doesn't have formula showing up in her mouth during or after tube feedings and that she doesn't have coughing fits (beyond what would be expected with a trach).

Dr Downey started off by saying that the reason for Peyton's unusual placement was probably not anything related to her specific anatomy (this would make sense since her first GI knew what surgeon had done Peyton's surgery based on where it was) but he would double check her upper GI that had been done last fall. He indicated that another surgeon had decided to do a different placement because he thought it would result in less reflux (more on that in a minute) but nothing had ever been proven to show that it did. However, there were other surgeons that got on board and started to put their tubes there as well - although they were far in the minority.  I quizzed him as to why the sucking in problem wasn't happening all the time but I pretty much answered my own question when I realized that for the first few years she was getting night feedings and the first year she was getting continuous feedings during the day as well - her tummy was just never empty long enough for it to happen.

Then Dr Downey did a short explanation of the anatomy with us. In the first illustration you can see a normal tube placement. It is left of the midline and below the esophagus. Peyton's placement is on the opposite side (on the illustration next to the belly button). As you can see based on where that is it is very close to the pyloris and duodenum. In fact, Dr Downey said based on the length of the stem of Peyton's first button when she had the blockage we were very lucky it didn't blow out her duodenum!

Dr Downey also can't guarantee that moving it to the left side will prevent the sucking in problem but he is also highly suspicious that it would since he has also never seen or heard of the sucking in problem either. So that brought us to discussion of the Nissen procedure. The second illustration shows what happens during the Nissen fundoplication procedure - essentially the fundos (upper part of the stomach) is wrapped around the lower end of the esophagus and stitched in place. It prevents refluxing but it can also prevent vomiting. Now remember, Dr O'Gorman had said if there were signs of reflux that it would probably be a good idea to get the Nissen done. However, I have heard so many negative things about the Nissen that I wasn't on board. First off, Dr Downey doubts Peyton has reflux. And there is no chance he would do the Nissen without first having several tests that show severe reflux. As he explained once you do the Nissen there is no going back so it should only be used when everything else has been tried. So before he would consider it he wants a EGD, probe test and biopsies of the stomach.  Although he is very cautious in doing the Nissen procedure he knows that not all his collegues have the same protocols and there are many children who have had the Nissen done without any diagnostic measurement to indicate reflux at all - let alone severe reflux. Some surgeons just standardly do the Nissen with the gtube.

Then came the second part of the reflux discussion. I have heard many parents say that after their child got a tube, they either started having reflux or previous reflux got more severe. Dr Downey again pointed to the anatomy. The normal tube placement is just below the fundus. Because of the weight of the tube it can somewhat change the shape of the stomach and it is possible that it results in reflux. This is just a theory and one that he does not put any stock in. He did say, though, that another doctor in the practice completely disagrees with him and does think there is a correlation between tubes and reflux.

Should Peyton have severe reflux and need a Nissen there would be no ability to have it done with her tube where it is now. They would have to close off the current tube, move it to the new location and do the Nissen at that time. It would be a 3-5 day inpatient stay.   Should Peyton not have reflux and we choose to move the tube to try to correct the sucking in problem it would most likely be an overnight stay - although that is only because we are not tube newbies.

So the first step is to have the EGD, biopsies and probe test done. They can all be completed at the same time and my parents are hoping to have the ENT's throw in a bronchoscopy at the same time to look at her airway. Dr Downey is going to get back with Dr O'Gorman to start that process.

Meanwhile we have more questions than answers. When I went into this appointment it was with the thought of getting the tube moved so we could get rid of the night feedings. Travis didn't think it was worth another surgery. At the end of the appointment I am in agreement with him. If she has severe reflux then moving the tube is required to do the Nissen and we'll have to consider going down that road. But if the tests don't show reflux (and we are pretty sure they won't) we probably won't go any further. Although Peyton has to have night feedings, she is finally putting on weight, hardly ever vomits and is interested in eating orally. We don't want to jepordize any of that by moving the tube and potentially ending up with reflux - it's just not worth it.

Tuesday, June 7th, 2011

2011-06-07T21:53:00.001-06:00

So two things, my parents (and Chili) were very nice to sit still for me while I took countless photos of them. I was sitting on the changing table (yes, not very safe) and as Mommy has taught me in the past asked them to say "cheese" over and over again. Not a great photo with my foot in it but you do get a good idea of the size of the big, big bear in relation to everything else in my room!

So the other thing is the new trach change video. My parents are prepared for numerous comments wondering why the hell they would allow a 3 year old to take out her own trach (actually I am closer to 4 but who's counting). Actually, they have been letting me take my own trach out during trach changes for several months now. Although I need a little help getting it back in, taking it out is no big deal! OK so here is my parents philosophy on this - bear with me. This trach thing is probably pretty long term for me so the sooner I get involved in my own care the better. Obviously I am a pretty smart cookie so they weren't surprised when I wanted to participate in this weekly event. In addition, they figure if I get to take it out once a week with their permission I will probably be a lot less interested in taking it out on my own to try to irritate or scare them. Now if I was not stable without a trach in for a few minutes at a time my parents would never have gone down this path but as it is they really are not too worried since I can stay capped for hours at a time. So I should probably put the warning out there not to try this at home but there might be a few other trach toddlers out there who might want to give it a shot and some parents who are not currently having heart palpitations watching my video - to those of you have fun - let us know how it goes!

Peyton Nicole Smith

Monday, June 6th, 2011

2011-06-06T17:06:00.001-06:00

A note from Mommy:
I just finished reading "Two Kisses For Maddy" a few weeks ago. If you aren't familiar with it, a woman gave birth prematurely to a little girl after several weeks of hospitalized bed rest. The next day when she got out of her hospital bed for the first time to visit her child in the NICU she passed a pulmonary embolism and died. "Two Kisses For Maddy" is the story of how her husband coped with the loss of his wife and birth of his child within 27 hours of each other. It was a book I knew I wanted to read but dreaded reading and I sobbed many times. And today I was horrified to learn that a fellow "trach mommy" passed away the day after giving birth to her second child. Her first child had Pierre Robin Syndrome and was trached (and later decannulated). Just hours after posing on the trach forum about the birth of her second child she also passed an embolism and was later declared brain dead and removed from life support. Karin was someone special - not just because she was a trach mommy - but because she could always be counted on to offer love and support to all the others on the trach forum. Even after her son was decannulated she still commented often - not forgetting the rest of us still on our trach journeys. Although a trach child's death is heart wrenching it isn't altogether unexpected with these kiddos. But the death of a trach mommy leaves the rest of the trach community stunned and numb. Bless her husband, bless her son Alex who got to experience her fight to get him to where he is today and bless her new baby Brycen.

http://www.legacy.com/obituaries/washingtonpost/obituary.aspx?n=karin-j-kincaid&pid=151506879

Sunday, June 5th, 2011

2011-06-06T16:47:00.000-06:00

A note from Mommy:

It was a beautiful summer day and what better way to spend it then to support a good cause! Travis and I joined around 2500 other bikers to Ride for a Cure for MDA. It was actually the first time I had ever even gotten on the motorcycle we purchased a few months back. While Peyton was happily spending a day with her Grandma and Papa Smith, Travis and I rode down to the Salt Lake Harley Davidson dealership and then headed out to Wendover with the group. I still get chills every time I hear the sound of hundreds of motorcycles start their engines. As we rode down State Street to the freeway we had a police escort and a gigantic American flag flying above a Salt Lake fire engine.

It was a hot and windy ride and we made our first stop at a gas station in Delle, Utah. Although many riders were partaking of a cold beer, we were happy to stretch our sore muscles and snap a few pictures before getting back on the road. We made a final stop at the rest area 10 miles before Wendover. It just so happened that we were ready to get back on the road when the police escorts were transferring a person with MDA onto a motorcycle and then rode them in with lights and sirens flashing. If I had chills at the start of the ride, it didn't even compare with following just a few bikes behind this police escort for 10 miles. Amazing and emotional.

We had a few hours to rest and eat before getting back on the road and safely making it back home. From the news last night they believe they met their goal of raising $200,000 for MDA which will help to go towards research and sending children with MDA to summer camp.

Saturday, June 4th, 2011

2011-06-06T16:33:00.000-06:00

Tonight I got a special surprise when Uncle Jeff brought this stuffed bear for me! Like my doll I refuse to give it a name beyond the "big, big bear" but I have already requested that he (or she I guess) accompany me to Grandma's each day!

Peyton Nicole Smith

Thursday, June 2nd, 2011

2011-06-06T16:29:00.000-06:00

Today was my last day of preschool for the year and my last day at USDB forever. End of August next year I will begin preschool at a school in the Canyons district - my local school district. I will be in a preschool program with mostly children who have IEP's like me but with a few "paying customers" from the surrounding area. Although Mommy was conflicted about the change, after seeing me fit right in to the preschool class when we went to observe it she is feeling good that I will do just fine. You can see the photo above of my last day of school as compared to my first day of school. What a big girl I am becoming!

Thanks so all the teachers and therapists at USDB for a wonderful year. Sarah you have been such a great teacher and best of luck with your surgery and master's program this summer. And a big thank you to my Grandma Glenda who was my "nurse" this year. Not only did I have to go to preschool - she did too!

Peyton Nicole Smith

Wednesday, June 1st, 2011

2011-06-06T16:09:00.000-06:00

It was time for my six week follow up appointment with my jaw surgeon. As he was running about an hour late, Mommy was super impressed with how well I did waiting in such a tiny exam room. When he came in, I immeadiately got nervous but I surprised everyone by letting Dr Morales take a flashlight and look in my mouth as well as feel the scars without a peep!

Dr Morales and Mommy talked briefly about the future. Since Dr Morales doesn't want to do anything for six months we will be spending a lot of time just waiting for the bone to heal before deciding where to go next. In the meantime, there is a craniofacial panel appointment coming up in July so Dr Morales would like to see a panoramic xray of my mouth at the panel appointment so Mommy has that to schedule between now and then.

Peyton Nicole Smith

Monday, May 30th, 2011

2011-06-01T21:46:00.000-06:00

A note from Mommy:

In the course of daily life it is easy to forget all the wonderful things about your spouse and concentrate on the 150 things they did that irritated you that day ; )

Tonight Peyton wanted to "swim like a dolphin" like she saw her cousin Jackson do a few nights earlier when she watched him take a bath. Now swimming like a dolphin in the bathtub would be no big deal were it not for that dang hole sitting in the middle of her neck that leads right to her lungs! So when Peyton asked tonight while she was in the bath to "swim like a dolphin" my safety conscious Mommy side immediately jumped in and said "no" (okay probably more like "hell no what are you thinking that could kill you"). Peyton immeadiately started sobbing and I sighed in exasperation. Really - it's not like I want to have to tell her no, it is more than a little challenging to explain to a 3 year old why her cousin is allowed to but she can't.

That's when Daddy stepped in. He went and got her cap and put it over her trach. Although it is not a surefire way to keep water from getting in, it does a pretty good job. Then he had Peyton lay on her belly across his arms and he made sure her neck and head didn't get in the water. And with Daddy holding her up from the bottom of the tub, Peyton swam like a dolphin! I like to invision her as one of those rare pink bottlenose dolphins - after all how many trach kids do you see swimming? It is moments like that when Daddy is willing to take a chance and say yes to let her be a kid and not no because she is a trach kid that stop me in my tracks. He loves her unconditionally and will do anything for her. He's been doing it all along - designing an "iv pole" for her walker, dying her trach ties girlie colors, adding a doorbell to her bed so she can get our attention when she can't get to our room. Instead of expecting her to change her life because of the trach/gtube he is finding ways to change the world around her so she can live life without compromising. Just one more reminder of why I love him - I think that moment gives him a pass for 150 irritating things in a day, maybe even 200!

Sunday, May 29th, 2011

2011-06-01T21:26:00.000-06:00

It is finally Jackson's 3rd birthday party! It was COLD and drizzly but the show had to go on! With the parents shivering outside and the kids running and jumping inside the bouncehouse to stay warm it was not quite the end of May birthday party anyone was expecting. All the parents took turns keeping an eye on the kids out in the cold and then rotating in to eat in the warmth of the house. Jackson wasn't in a picture taking mood so there was no candle blowing (Aunt Kristin will plan on doing that tomorrow on his actual birthday) and he opened most of his presents after the guests had left. As Mommy and I stayed behind to help clean up, the heavens opened up and it started pouring rain so thankfully the party had already come to a close.

The cake was yummy and super cute so if you are looking for a cake or cupcakes you can find her here:

http://www.facebook.com/pages/bumble-cakes/269916847193

Peyton Nicole Smith

Saturday, May 28th, 2011

2011-06-01T21:00:00.000-06:00

It was the day before Jackson's 3rd birthday party and Mommy and I volunteered to run a few errands to prepare for the big day. First up was picking up Jackson's Mickey Mouse Clubhouse cake and cupcakes that were made just for him. Mommy was in terror the whole way to Aunt Kristin's for fear that she would hit the brakes too hard and wind up destroying the cake! But before she could drop it off there was one more stop at Zurcher's to have the Mickey and Minnie themed balloons blown up. Mommy should have probably thought that through a little more because with me, the cake the balloons and Mommy she could barely see out the windows to get everything delivered safely!

When we arrived and got unloaded I got to jump in the bouncehouse with Jackson and Collin. Mommy, Aunt Kristin, Shannon and even Uncle Lonnie eventually joined in the fun too! Jackson was all about playing and not about getting his photo taken so he looks pretty grumpy (turning 3 is hard work)!

Peyton Nicole Smith

Wednesday, May 25th, 2011

2011-05-25T20:34:00.000-06:00

Today at my occupational therapy appointment with Wendee it took a lot to keep me on task. I had a late night, an early morning and no nap so although I was in a good mood I had a hard time staying focused. It didn't help that today we weren't in our small office but in the large play area which is really just an indoor playground complete with slides, stairs, ramps, trampoline and a ball pit. When Wendee pulled out the Junior Whirly Wheel though (pictured above), it definately caught my attention! Once I figured out how to sit on it and Wendee demonstrated how to use my hands to pedal I was hooked. It was hard work and I had to learn to pedal my hands together at the same time or I would just end up going in circles. Wendee was pretty impressed with how far I went up and down the hallway knowing my arm strength is fairly limited. What an awesome toy! (Mommy is going to try to hold out and wait to get it for me for my birthday - after all it is not just a toy it is a therapy tool!)

Peyton Nicole Smith

Monday, May 23rd, 2011

2011-05-25T20:23:00.000-06:00

A note from Mommy:

Tonight was supposed to be Michelle's last night being Peyton's nurse. Because Peyton is far enough out from her surgery and not "sick" enough on a regular basis according to current Medicaid guidelines, the only nursing she qualifies for is respite hours every quarter (about 50 hours a month). Although we knew we would stay in touch (she might even be Peyton's nurse next year for preschool) it was still a sad day knowing we wouldn't be seeing her four nights a week. We have had our share of bad nurses but have only had a few really good nurses. Michelle was all the things we had been looking for - she's dependable, she's knowledgable, she stays awake on shift, she loves Peyton and Peyton absolutely adores her.

But surprise! Apparently there were still 144 hours that hadn't been used so we have a reprieve - we will continue to see her smiling face 4 nights a week through 6/23. Yeah!

Sunday, May 22nd, 2011

2011-05-25T19:56:00.000-06:00

A rite of passage for every child - licking the beater!

Peyton Nicole Smith

Friday, May 20th, 2011

2011-05-22T21:41:00.000-06:00

Like the Dysphagia Clinic appointment earlier this week, Mommy was actually looking forward to my assistive communication evaluation today. A few months ago Mommy learned about UAAACT - Utah Augmentative Alternative Assistive Communication and Technology. They are a part of the Utah State Office of Education and the Utah State Office of Rehabiliation. UAAACT act as a resource for families and schools to find appropriate technologies for augmentative communication. They work one on one to assess which technologies are best suited to each child's communication needs and physical limitations.

I wasn't quite so sure about going but Scott came out to greet me and led me back to their office to start "playing". Although a communication device will be a wonderful tool to assist me in being understood because my spoken language is not always understandable, as far as I was concerned this really was more like playing. Because of my limited hand strength and how tiny I am, there aren't a lot of options that I can carry and manipulate. First off I tried the iTouch, because it was basically just like Mommy's iPhone I had no trouble figuring out how to work it. The iTouch was loaded with the most popular communication app - ProLoQuo2Go. Once I got the hang of the right pressure to use it was no problem to push buttons and hear a girl's voice speak what I had pushed. The iTouch was small and had a cool carrying case that acted as a much louder speaker. The only problem was that because the iTouch was so small it was a little harder to make sure I was hitting the correct image all the time. Scott then pulled out the iPad (first photo above) with the same app loaded. Although it was definately heavier (espesically with a heavy duty case to prevent breakage) it was much easier for my little fingers to make sure I was touching the correct buttons.

After playing with that for a while, we moved on to a more standard communication device the Vantage Lite (second photo above). In some ways it was a little more difficult to navigate because of some assumptions it makes. For example if I wanted to type out "don't like peas" I would push on an image of a knot to get to the no/don't/not type of words. Since Knot and Not sound the same but have different meanings it is a little lost on a 3 year old as to why I would push the button with the picture of a rope with a knot in it. Over time, I would obviously learn to memorize that but it is not real intuitive to someone my age. But it was colorful and lighter than the iPad so it was certainly an option.

Finally, I got to play with a little three ring binder with several hundred tiny images made by BoardMaker. It was definately not high tech but would be a perfect non techie communication method to put in my diaper bag/medical bag to point out what I am trying to say in the case that I don't have a communication device/can't get to my communication device, etc. Mommy is for sure going to go back to UAAACT after purchasing the binder from BoardMaker and then use their software to make me one.

So what is the cost for something like this? Well Mommy compared the iPad with the app and the case to Vantage Lite since they were most compareable and you can see the numbers below:

iPad 2 - $499 + Proloquo2go - $189 + iAdaptor (case/speaker) - $198 = $886

Vantage Lite - $7495

So comparing the two it seems like a no brainer - right? Vantage Lite is almost 10 times the cost of the iPad so for similar technology why wouldn't we go with the iPad? Well here's the kicker. Although insurance companies will generally pay for something like the Vantage Lite it is pretty rare that they will pay for the iPad. Because the iPad is not a dedicated communication device (read you can play games, play on the internet, etc) it is more likely an insurance company will spend 10 times the price for a Vantage Lite because that is all it can be used for - communication. Scott already warned Mommy that Medicaid won't pay for it but there is a shot that one of my two commercial plans may. If not, Mommy is completely prepared to appeal it based on the cost issue alone. After all should there be a new app developed in the next few years that blows ProLoQuo2Go out of the water, it would just be an additional $200 or so to get a new app vs. replacing a $7500 communication device when the technology improves.

Peyton Nicole Smith

Wednesday, May 18th, 2011

2011-05-22T20:50:00.001-06:00

It was one of the few office visits Mommy actually looks forward to - Dysphagia Clinc - and really only because they pay a lot of attention to my weight so Mommy knows for sure we'll get an accurate one. Sure enough first on the agenda was a height and weight. The nurse let us know that I weighed in at 27 lbs. 1 oz. We had a quick chat with the feeding therapist but because I am being followed by Courtney she didn't stay long. When Marie, the dietician, came in Mommy was anxious to hear how my weight was looking since the last visit. Today, I had a weight index of 91% and last time it was 87% - since the goal is to be between 90 and 110% I was officially on the boards! Just to make sure she knew what my magic formula was to figure out my calories she asked Mommy the ratio of water to soy milk I am getting each day. Since Daddy makes up my formula every night, Mommy threw out some numbers that apparently weren't quite right. So Grandma called Daddy at work and he helped even more with comments like "I pour the soy milk to the second line in the bottle". Mommy promised to call Marie back later with the true ratio since it was clear Team Peyton were apparently not numbers people.

A short time later, Dr O'Gorman came in just as I was taking a few photos with Mommy's iPhone. I snapped af ew of her as well and as Mommy and the doctor tried to catch up, Grandma Glenda tried to keep me quiet. I hadn't had my nap and was raring to go! It's a little ironic that just a year ago Mommy was trying to encourage me to talk and now she spends just as much time shushing me!

First off, Mommy let the doctor know that with strict feeding times I can keep my button from sucking in. However, surgeries are a problem because as soon as the Pedialyte is stopped all bets are off. Dr O'Gormon confirmed with Mommy that we had done an xray of my belly and a bigger size button and nothing had helped. At this point with my jaw distraction behind me, she wants to send me on to Dr Downey - a pediatric surgeon - for a consult to discuss moving the button to where it probably should be. Mommy knows there is no guarantees with surgery, but she did ask, "What are the chances moving the button will prevent the issues Peyton has been having." The doctor said I am the only child she has ever seen with that placement and also the only child who has ever had the sucking in problem. Since she has seen a lot of children she has every reason to believe that is what is causing the problem and that moving it will solve it. Luckily, the surgery is pretty minor and would probably be outpatient or a 24 hour observation at the most. You can see in the photos above the top one is my button - just right of midline. The next photo down is the placement most kids have - left of midline. Apparently a few inches can make a big difference!

Mommy and the doctor talked a little about oral eating. Since I have been focusing more on speech because of preschool and less on the eating aspect, Mommy wasn't sure if there was a "window of opportunity" for a child to go from a tube feeder to an oral feeder. Dr O'Gorman said it really doesn't work like that and just because I don't get a tube out in the next few years doesn't mean I won't ever get it out. She also agreed with Mommy that although intensive feeding programs could benefit some children, I was probably not a good candidate because me eating issues are less behavioral in nature and more structural.

Before the end of the appointment Mommy shared with the doctor the troubling signs of potential reflux Courtney had seen a few weeks ago and Dr O'Gorman suggested that at the time the tube was moved they would do a scope and a Ph probe and if I was demonstrating reflux they would also do the Nissen procedure to prevent further reflux. In addition, they could coordinate with the ENT folks to have their scope of my airway done at the same time to see if there were any other issues (like granulation tissue) to be aware of for possible decannulation in the future.

Mommy is certainly not jumping for joy at the thought of another surgery but my tube placement has long been a source of confusion and frustration and getting it moved now before it potentially causes more issues might not be a bad idea.

Peyton Nicole Smith

Sunday, May 15th, 2011

2011-05-18T20:28:00.000-06:00

Even though I may not eat much by mouth, I love to have a "picnic"!

Peyton Nicole Smith

Wednesday, May 11th, 2011

2011-05-17T21:46:00.000-06:00

Mommy really needs to start bringing the camera to my therapy appointments so you have something to look at! So today was my first OT appointment for the first time since before my jaw distraction. Wendee had already got an update on how I was doing from Courtney (speech therapist) since they are in the same office. I was a little disappointed it wasn't Courtney I was seeing but Wendee is a bunch of fun too so I got over that quickly.

During my "off" time, Mommy had finally gotten me in to have an xray done of my shoulder that Wendee had previously requested. Although Wendee wasn't able to view the actual image today, she read the radiology report and it confirmed what we had all been thinking. My shoulder joint is not "normal". The radiology report indicated the joint did not have full movement (it was impeded by too little space in the joint) and it lacked plasticity. So basically what that means is that the range of motion I have now is essentially what I will always have no matter how much therapy I do. Although therapy will not buy me any more range of motion, it will help to build up my strength in other areas and keep me as flexible as possible so it is certainly not a waste of time.

After reviewing the report, Wendee asked Mommy about my goals. She said that one area that people keep being concerned about is my balance and how often I fall. Mommy doesn't think I actually fall much more often than other kids but I don't stop my falls well and end up with lots of scraped noses and goose eggs on my forehead. Mommy has heard many theories on why that is happening - my ankles are weak, the abnormal placement of my ear canals is affecting my balance, nerve endings in my feet aren't firing correctly due to having a syndrome, my arms aren't long enough to protect my face when I do fall, etc. So Wendee took all that information and set out to do a few tests to see if she could figure it out.

The first test was to put me on my tummy on a big exercise ball. She was behind me holding on to my waist and without telling me when - she would shoot me forward to see if I would put my arms out in front of me when I rolled forward to protect myself. I thought it was a ton of fun and initially almost rolled completely around before Wendee explained I was supposed to try to stop from rolling by putting out my hands. Once I got the hang of it, then I would do just as expected and put my hands out to stop me. However, Wendee quickly discovered that although my arms were out because they were so short my head was already going to hit before they would do any good. So theory four proved to be true to some extent.

The second test was to have me sit on the ball facing Wendee. Again she would hold on to my waist and then quickly roll the ball to one side or another to see at what point my arms would come out to the side to stop me. Time after time I would literally be ready to fall off the ball before my arms would come out. Wendee thought I was just playing around and trusting her to catch me but eventually she discovered that it wasn't that at all - I was putting my arms out but by the time my reaction would kick in I was too far gone and there would have been no hope to right myself before falling. Wendee concluded that most likely due to the abnormal location of my inner ear my balance was off. So theory two was proving to be true to some extent as well.

The third test was to have me walk and run with my shoes and socks off to see what my feet were doing. In the beginning I was dancing and skipping because I knew I was being watched. So Mommy tried to take my mind off what I was doing to see how I really walked by asking me to go pick a few things up for her and bring them back to her. Wendee was intrigued by what she saw and marched me down the hall to have a PT look at my gait as well. Sure enough, I was rolling (pronation) my ankles to the side at times when I walked - espescially on the left side. So there was some truth to theory one as well.

My family has already noticed that I fall more when I have thick soled shoes versus when I am barefoot - which is probably because I don't get the "feedback" from the soles of my feet the more there is between them and the ground. Although there isn't a good test for this it certainly lends some credence to theory three as well.

So let's see - four theories and most likely each theory is contributing to some extent to my balance issues. So now what?

Ankles - orthotics to help provide support to my ankles

Ear canals - nothing we can do about this

Nerve endings - thin soled shoes, however this creates a problem because even with thin soled shoes, most orthotics for the ankles also cover the bottom of the foot which would mean less feedback for the nerve endings. This could be challenging!

Short arms - since we can't make my arms longer the only thing we can work on is making the muscles in my arms stronger to try to compensate. Wendee suggested having me be a "wheelbarrow" (you know that wheelbarrow races you did as a kid) and "crab walking"

So after thinking through all this I think it is pretty spectacular that I am walking at all - let alone at 16 months which was considered within the "normal" range!

Peyton Nicole Smith

Tuesday, May 10th, 2011

2011-05-17T21:22:00.000-06:00

This is a photo of how I "play" with my shells. Mommy will swear up and down she is only "a little bit" OCD but Daddy is not sure there is any such thing as just "a little bit" OCD and now he gets to have two ladies in his life so between both of us being "a little bit" OCD that probably adds up to "a lot" of OCD in the house! It's not just the shells - I am also known (just like Mommy) to have to close closet doors, reopen dresser drawers if any little bit of anything is hanging out and before I sit on my parents bed I insist that it be made. (Mommy has to chuckle every time I yell at Daddy to "make the bed". She has been demanding that of Daddy for years and not making any progress!) Poor Daddy!

Peyton Nicole Smith

Monday, May 9th, 2011

2011-05-13T23:02:00.000-06:00

Although I was anxious about going to see the dentist today, when Mommy laid me back on her lap and let the dentist look in my mouth I surprised everyone by opening my mouth wide and didn't fuss a bit. Just as Grandma had told me, he wanted to count all my teeth and there would be no hurts - and she was right. So that was the good news but as Mommy is now getting used to there was bad news as well. Despite faithful brushing each night, my two emerging molars are already showing signs of cavities. Actually, my parents hadn't even noticed my molars until last night when Daddy stuck a flashlight in my mouth and saw them for the first time peeking through. No surprise they weren't doing a good job of brushing them when they didn't even know they were there!

An unfortunate byproduct of the surgery seems to be that I now have loads of saliva pooling in my mouth on my teeth which is not helping the disaster that is my dental health. The dentist suggested again that my intake should be limited to water and milk. When Mommy explained I was allergic to dairy and was using soy milk he explained that has a lot of sugar too so that pretty much just leaves water. But realistically, he knows that trying to get me to have anything oral is a challenge so it is a balancing act. So for now, soda is off limits - at least most of the time. Mommy figures that having it every now and again when we go out to eat is okay but otherwise water is my new drink of choice (okay maybe not my choice).

In the evening, Mommy sat me down to explain again that the dentist said that soda was bad for my teeth and that is why I had to start drinking water instead. When I asked for soda Mommy said "no" and I had a 30 minute freak out than went back to watching my show. I asked again a few minutes later and once again Mommy said no. I looked a little deflated I am sure but I was caving. It didn't take just a few more minutes before I finally asked for water. By a stroke of luck Sid the Science Kid had an episode on about teeth. After watching how a little girl lost all of her teeth because she didn't brush and had too much sugar (seriously it was terrifying even being a cartoon girl) I was on board. In fact I told Mommy later that night, "I like water"! Mommy doesn't doubt there will be more fights on this in the future but we made some head way today.

Peyton Nicole Smith

Sunday, May 8th, 2011

2011-05-13T22:47:00.000-06:00

A note from Mommy:

With Peyton now in preschool, so begins the tradition of school-made Mother's Day gifts. Although we have beautiful castings of Peyton's hands prior to each of her surgeries that Travis spent hours getting just right - this simple hand print is enough to get me all weepy. It will take it's place in the memory box I am keeping, nestled amongst her many hospital ID bracelets, the first trach we ever changed, her jaw distractors and the more traditional baby book. And looking at it I will forever be reminded that despite how her hand print may not be "normal" what it will represent is how very "normal" she is - putting her hand to clay as countless children have done before her and countless more no doubt will do in the future.

Saturday, May 7th, 2011

2011-05-13T22:08:00.001-06:00

A note from Mommy:

This won't be the last time it happens and it certainly wasn't the first time but each time it does my heart gets bruised just a little more. With some decent weather Peyton and I took the opportunity to go the local park. There were a handful of children around us but one little girl - probably around 7 - was obviously staring at Peyton. Every where Peyton would go, the little girl would follow and just blatantly stare. Feeling a little uncomfortable, I decided to head away from the slides to an area off on it's own with a ride on toy. Sure enough, the little girl followed and stood right in front of Peyton, her eyes huge and mouth hanging open. For now, Peyton is still completely unaware of the lack of social graces the girl was showing but I was starting to get a little irritated. In an attempt to help the situation, I asked the girl very nicely "do you have some questions because if you do that would be okay". But she became embarrased and walked away. When we went to play on the slides later she was still hanging around, this time bringing a friend with her to join in the fun but kept a little more distance. Although Peyton didn't care I was tired of feeling ill at ease when I was supposed to be enjoying myself with Peyton so she and I went off to a grassy area to play soccer away from all the stares. We went back to the slides after that family left and came across another group of children who were more than willing to ask questions - much more my comfort zone!

Later I felt a little guilty that I was being unfair to Peyton and essentially punishing her by taking her away from the slides so I wouldn't have to feel uncomfortable. Although there is plenty of literature on how to care for a trach and we had lots of training before ever leaving the hospital with Peyton - there isn't any program in place to prepare us for these type of situations. I can only hope that Peyton is more adept at this as she gets older because I am certainly not an expert!

Thursday, May 5th, 2011

2011-05-13T21:54:00.000-06:00

With two intense doctor's appointments back to back you would think when Mommy announced it was time to go to Speech Therapy today I would go running for the hills. But Courtney is my therapist and I adore her and it has been almost 4 months since I last saw her so I didn't mind one bit. Courtney has followed me on my blog so she had some inkling of how I would look post-distraction. Mommy gave her a few additional updates and then we got to work.

Prior to the distraction Courtney had told Mommy that we would start focusing more heavily on my mouth placement when I speak after the distraction. So today she ran through the basic sounds and helped me remember where to put my tongue for sounds like "d" and "t". Although my "princess spot" for my tongue placement has always been behind my front tooth - now my tongue works a lot differently then it did before so it's time to start training it to do it right now.

Courtney explained that she has worked with the surgeons at Primary Children's and before I would undergo a palate surgery I would first have to pass a test to show that even before the surgery my mouth placement for making the sounds is correct. The reasoning is that if I can't succeed with making the correct placement before the surgery than the outcomes won't be as good and it could end up being an unnecessary surgery. So we have a few months to make sure my placement is correct ahead of getting tested.

Because of my distraction, Courtney was finally able to get a good look in my mouth. She saw what she calls "cobbling" (also referred to as pharyngeal cobblestoning) which can indicate some type of irritation - very possibly reflux. Now Mommy has wanted a bronchoscopy to check out my airway for a long time but since we haven't really been any where close to a potential decannulation it hasn't been necessary. With the cobbling and the very real possibility of reflux Mommy plans on discussing with the craniofacial panel in July about getting one scheduled soon to figure out what is really going on.

Peyton Nicole Smith

Wednesday, May 4th, 2011

2011-05-04T21:02:00.000-06:00

So after the cardiology appointment you think Mommy would cut me some slack but oh no - it was off to the allergist today!

I'm no dummy, as soon as we started walking into the exam room I got upset. Mommy and Grandma had taken the chairs which left me with the exam table. I wasn't having any of that! I insisted Mommy sit on the table while I sit on the chair. Unfortunately, the doctor wasn't fooled!

While I watch Caillou on the iPhone for the second time in two days Mommy filled the doctor in on my allergy/asthma history explained that the Dysphagia Clinic wanted a work up since I had such a serious reaction to milk. The doctor started with a basic panel of testing - 5 different types of trees and bushes, 5 environmental (like pollen), 5 common food allergies and 5 common animals. Before he started the doctor let Mommy know that although blood tests were an option they weren't really as accurate as the skin testing. So the plan would be to do the skin testing if I would let him and use the blood testing as a back up plan. Now for those of you who aren't familiar with allergy testing, it involves just a miniscule prick of what is being tested on an area of the back. First my back had to be numbered and add two for a positive and negative control. Then the pricking began! (Now the doctor pricked Mommy once so she could feel it first and she couldn't even really tell). I thought it was kind of ticklish the first few pricks but about 10 pricks in I was crying and ready for it to be over. The nurse warned Mommy that it had to sit on my skin for 15 minutes and if I did have a reaction to anything I wasn't allowed to scratch it.

So while the minutes counted down I watch some more Caillou and picked out some items from the toy box. The doctor came back in and said that I had a serious reaction to milk (no surprise there) and a mild reaction to cats. Now Daddy has been trying to talk Mommy into getting me a cat since I like Grandma's so much so good thing she held her ground. Although the doctor didn't order Grandma to get rid of her cat, since I spend so much time there he recommended starting me on Zyrtec daily for the symptoms associated with an allergy - runny nose, sneezing, etc.

Dr Moffat told Mommy that in all likelihood I will outgrow my milk allergy in the next few year and by being tested every year we can see how quickly the reaction goes down and when I can start milk trials. However, most pet allergies tend to get worse with time. In addition the environmental allergies (pollen, grass, etc) don't usually start up until a person has gone through several seasons. Since I have only been in Utah a year if I am going to have seasonal allergies I probably won't start to have problems for several more years.

Since my last blood test for the milk allergy was a year ago, the doctor sent me down the hall to the lab to get another test done so he can see where the numbers are going. Now for anyone who knows me, a simple blood test is an oxymoron. Mommy let him know I was a hard stick and not to be disappointed if we didn't get any blood for him today. Down the hall we went and Mommy sat down with me in the chair. The girls were young but fully prepared! One held down my arm while the other looked for the vein. After a few seconds of cleaning and finding the vein in went the needle - one stick guys! It only took about a minute to fill the tube. I was mad as all get out and crying up a storm but it was over before I could get too worked up. Initially I was too angry to think about the offer of a sucker but quickly changed my tune. We walked down the hall and out the door and Mommy explained to the concerned folks in the waiting area that I was really okay and my feelings were more hurt than anything.

So now I have another specialist to add to my list of faithful followers and future appointments!

Peyton Nicole Smith

Tuesday, May 3rd, 2011

2011-05-04T20:33:00.000-06:00

In February of 2008 I went to the cardiologist and was diagnosed with aortic valve disease - mild to moderate insufficiency. Mommy has been writing that on countless forms and informing every new doctor and specialist since then. For the last two years, although I have gotten an EKG I have not wanted to "participate" in getting an echocardiogram. So when we saw my new cardiologist Dr Mack in May of last year he recommended having me get a sedated echocardiogram the next time it could be arranged with another procedure I was already being sedated for. My parents figured my jaw distraction in January of this year would be a perfect time but despite Dr Mack writing the order twice and Dr Norlin's office coordinating with my surgeon it didn't happen. Mommy didn't have high hopes at my yearly cardiology appointment today that I would participate this year either.

First up was the EKG which usually doesn't bother me too much because I think having all the "stickers" put on me is kind of fun. After that was done Dr Mack came in and hauled out a picture similar to the one above and discussed very thoroughly what was going on with my heart. First off - I have a bicuspid aortic valve. Aortic valves are normally tricuspid (with three leaflets) but in 1% of the population it is bicuspid at birth (congenital). Because of my abnormal valve the valve will not open fully (aortic stenosis) and will not close completely either (aortic insufficiency). These two processes often go hand in hand like they do for me. Because the valve does not open fully it blocks blood flow to the heart and because it will not close completely some of the blood leaks back in the wrong direction. My EKG looked great, though, and on listening Dr Mack heard just a slight murmor. He promised to come back to talk after my echocardiogram.

We had to wait quite a while so Mommy let me listen to Yo Gabba Gabba music on her iPhone and even went out to YouTube and let me watch Caillou videos. I was thrilled so when it was time to head to the echo room despite some inital nervousness once Mommy sat me on her lap on the exam table I watched the Caillou videos on her phone and the tech got right to work without a peep out of me. About 15 minutes later we were all done and back in the exam room. Dr Mack came in and went through a short intro into statistics and standard deviations (Mommy had a terrifying flashback to the statistics class she took in college which she never thought she would need again) and explained that a few of the measurements were in the 1.5-2.5 standard deviation range which was not bad but one particular measurement was at the 2.69 standard deviation which was still technically within normal limits but a little higher than he would like to see. Since Dr Mack doesn't have my previous echocardiogram he can't tell how high it was to begin with or how quickly it is changing. For now instead of coming in again in 2 years he wants me back in a year and he is going to try to get my echo results from my cardiologist at UC Davis as a comparison.

Some things Mommy learned today:

1. There are three periods of fast growth that place a strain on the heart - infancy, 18 months and puberty. I have already made it through 2 of them with little change so the next hurdle is puberty.
2. An aortic valve replacement is not the first choice if it were to get worse. I could be placed on blood thinners, have the valve opened by a balloon or even have the valve repaired by either shaving off the thickening around the valve or adding additional tissue to the leaflets themselves to prevents so much leakage. Doctors don't want to cut into the chest any more than necessary and depending on how early a valve is replaced it may need to be replaced multiple times over the course of someone's life.
3. My type of heart disease is not the kind that usually results in someone dropping dead one day like the athletes you hear about on the news. In their cases it is one of three things:
          a. Thickening of the heart - since I am getting echo's regularly this is
               something they are already monitoring
          b. Irregular heart beat - I am not any more likely to have an irregular
               heart beat than someone who doesn't have aortic valve disease.
          c. Unusual electric pathways - just like the irregular heart beat I am
               not any more likely to have this than anyone else
4. Mommy had previously been told that when I am having surgeries (dental extractions, distraction, etc) that I need antibiotics as a preventive measure because of my heart. When I had the hardware removed two weeks ago they had me take antibiotics for three days and when I had it put on I had doses for a week. Dr Mack said that is old school protocols and overkill. I only need one dose prior to the surgery - that's it. My tummy thanks him!

After all the stress of will I or won't I sit for the echo Mommy was so glad to have it over and done with. It was a great visit and Dr Mack and his staff took all the time I needed to get everything done.

Peyton Nicole Smith

Sunday, May 1st, 2011

2011-05-03T21:07:00.000-06:00

After weeks of promises to go the zoo it was finally "nice" enough today to go (if you consider nice being in the 40's, overcast and with a slight breeze)! Even though my nose was red and my hands were a wee bit icy (and the grounds people were shoveling remaining snow off the walks) I had a great time visiting all the animals. However, my trip to the zoo would not be complete without a ride on the train (okay two rides) and a spin on the merry-go-round (okay three spins but really whose counting?)

Peyton Nicole Smith

Friday, April 29th, 2011

2011-05-03T20:47:00.000-06:00

It was such a fun week! I went back to school on Monday for the first time in 3 months. Although there were a few new faces - my two favorites - Ethan and Chloe - were still there. Grandma Glenda told Mommy that I almost launched myself at Ethan I was so happy to see him!

On my first day back I shocked my teacher with a little bit of an attitude. It will take a few days to get back into the swing of things but it isn't such a bad thing to shake things up a bit right?

On Friday night, all my cousins on Mommy's side got together for dinner and play time at Aunt Kristin and Uncle Lonnie's house. Despite warnings from Dr Morales you can see in the photo above I am not holding anything back on the mini-trampoline!

Jackson loves wrestling and poor Gavin got the brunt of all his excess energy! Jackson did slow down for a moment so Aunt Kristin could read us one of his favorite books - Mouse is Mad!

Peyton Nicole Smith

Sunday, April 24th, 2011

2011-04-25T20:36:00.000-06:00

Happy Easter! After yesterday's warm up for egg hunting I considered myself a pro for the egg hunting at Grandma and Papa Smith's today. It was still a little chilly but the rain held at bay long enough that I could find my eggs. The strategy was a little different. Instead of just grabbing any egg I could find, I was supposed to look for pink and purple eggs while Dylan had green and blue and Skyler had one single yellow egg worth $10. I found Skyler's egg right away (it was at my level) but couldn't reveal the secret until he found it on his own!

Peyton Nicole Smith