Saturday, July 31, 2010

Saturday, July 31st, 2010

I had such a fun morning! It was the quarterly HopeKids birthday party and I got to participate. I have posted in the past about HopeKids but in case you don't remember, they are an organization that provides ongoing support and events for kids and their families with life-threatning illnesses. The birthday party was held at Classic Skating and we had several hours of playing in the jungle gym, bounce houses and skating/scooting on the rink. For not ever skating or scooting before I did a really good job. Unlike the movie theater event, Mommy and I got plenty of chances to see some of the other kids and their families and I was one of many kids with trachs and g tubes roaming around.
Towards the end of the party, they set up many tables end to end with plates with cake a candle for each child to blow out together after a group round of Happy Birthday. Yep, Mommy got all teary eyed at that - as the founder of the organization said - every birthday is a big deal for this group and made to be celebrated.
After all the candles were blown out each child got a special gift picked out specifically for them. I got a sweet baby doll that Elizabeth (the daughter of the founder) picked out for me. As you can see, I took to my new baby doll immeadiately.
We have only attended two events so far but we are already big fans of HopeKids. They are having an upcoming fundraiser to continue to be able to provide all this fun to me and so many other kids. Mommy, Daddy and I will be doing an Adventure Walk for HopeKids and would love if our friends and family would help sponsor us. If you would like to make a donation to Team Peyton - here is my FirstGiving page:
I'll make sure and keep you updated on meeting our donation goal!

Peyton Nicole Smith

Friday, July 29th, 2010

It was another great day doing a capping trial. You can see it in the picture above. Mommy called Grandma Glenda mid-way through the day and was told that I was drinking from a straw and using that straw to blow bubbles in my cup - two things I really couldn't do before!

In the evening, Karen came over for dinner and I kept her entertained with my constant chatter and laughing.

Peyton Nicole Smith

Thursday, July 28th, 2010

At Grandma and Grandpa's house tonight for dinner I played with cousin Traiton and Uncle Jason. You can see I am helping out with the hammer on the lawn chair.

I have some exciting news. Today in the mail Mommy received the trach cap she had ordered last week. So when she got me in the car tonight to head over to Grandma's she put it on me and she held her breath. No need for her to worry, I wore the cap for the next five hours without any sign of distress. In fact, Mommy noticed that I was immeadiately a lot more vocal than normal and sang all the way over to Grandma's house. Mommy isn't getting too excited. She understands the logic of keeping the trach in through several more surgeries but the fact that I can tolerate the cap is a great sign for future decannulation!

Peyton Nicole Smith

Tuesday, July 27th, 2010

Guess what this is! I decided to take my art work off paper and put it on the walls for everyone to appreciate. Ok, maybe my parents didn't appreciate it so much but I thought it was pretty!

Peyton Nicole Smith

Monday, July 26th, 2010

Because of all the trouble with my button in the last few months, today Mommy, Grandma and I went to Riverton Hospital for a barium study to check the placement. As soon as I walked into the xray room I knew I was in for it and started crying. Then as four people held me down on the xray table I protested by kicking and hitting. Despite Mommy pointing out the tv screen where I could watch the barium move through my system, I didn't calm down until they let me go. Mommy will wait for a call from the GI with the results, but the technician thought the placement was fine although a little different spot then what they normally see.
Peyton Nicole Smith

Sunday, July 25, 2010

Sunday, July 25th, 2010

With the late night (I didn't fall asleep until after midnight) I was up around 8 am this morning. My parents got up and going and by 10 am we were at the Living Planet aquarium. It was a nice escape from the heat and I had such a fun time looking at the fish and other sea life. My favorite was the penguins and one particular penguin seemed to have a thing for me as well - as he stayed next to the glass checking me out. As we got ready to leave, the three of us got in the photo booth and took some pictures that we will hang on the refrigerator to remind us of
our fun day!

Peyton Nicole Smith

Saturday, July 24th, 2010

After my nap today, Mommy and I went back to cousin Jackson's for some more play time. While Aunt Kristin and Uncle Lonnie were at a BBQ, Jackson and I were having a great time going from one activity to another. Since we generally did not want to do the same thing at the same time we kept Mommy on her toes!
Peyton Nicole Smith

Friday, July 23rd, 2010

Since tomorrow is an official state holiday, Mommy got the day off of work. Technically she got the day off, but she had a deadline so I spent the morning with Grandma and Papa while Mommy and Daddy went to work. Grandma even took me to my hair appointment and they did a great job - getting me in and out in under 10 minutes. Right before nap time, Mommy came to get me and we headed home. I got in a good two hour nap before Mommy woke me up to let me know we were going to cousin Jackson's house to play. Not only was Jackson there but so was cousin Traiton and a little girl named Chloe that was a year older. Despite the heat, we had a great time playing for quite some time. However, I threw a little tantrum and threw cousin Jackson's toy and broke it so Mommy knew it was time to head home!

Peyton Nicole Smith

Thursday, July 22nd, 2010

It's been a couple of busy days. On Tuesday night, Brandy from Maxim came by to do the acuity assessment to determine if I qualify for additional nursing hours through Medicaid. Since we still had the plan of treatment from the Maxim nurses in California it was a pretty short meeting. On Wednesday night Mommy, Grandma and I went to my transition meeting. Basically, USDB and Canyons School District went through what their preschool programs had to offer and now my parents have to make a decision in the next few weeks. They had already decided to move forward with the oral language program at USDB.

Peyton Nicole Smith

Monday, July 19, 2010

Monday, July 19th, 2010

After months of waiting, it was finally time for my first craniofacial panel appoinment at Primary Children's Medical Center. I am by no means a craniofacial panel rookie - I had two panel appointments at UC Davis and one at Stanford/Lucile Packard. This appointment was a little different, though, because it only included a few specialties - ENT, plastic surgery, dentistry/orthodontia and speech. So instead of a 4 hour appointment it was closer to 2 1/2.

First up was dentistry/orthodontia. Dr Yamashiro reviewed the previous panel appointment notes. Since I am already being followed by the dental clinic, he didn't have a lot to add at this point but said, "99.9% of Nager kids need orthodontia work" so Mommy knew we would be seeing him again before too long!

Next was Dr Muntz the ENT. If you have followed the blog over the years, you know Mommy has hoped to find an ENT that she would respect. She felt instantly comfortable with Dr Muntz and breathed a sigh of relief. He didn't have any great news - but it wasn't anything she hadn't heard before. Mommy and Dr Muntz reviewed my past medical history and how we ended up in front of him. He was in agreement that it was best to keep my trach in at least through several more surgeries since I have been a nearly impossible intubation in the past. Despite not decannulation in the near future, he encouraged Mommy to have me try capping sooner rather than later. It would give us a good idea of the status of my airway but it would also contribute to less infection if I was breathing through my mouth and nose instead of my trach. To my serious protests, he did a quick exam of my mouth. He wasn't able to get a great look but he is concerned that I may not have any soft palate at all - which would make a pharyngeal flap surgery very difficult. Until plastic surgery gets me under anesthesia, though, he will have to wait to make a final recommendation.

Next on the list was Dr Morales from plastic surgery. It has been over two years since I first saw Dr Morales for a surgery consult. Although my parents decided to go with Dr Schendel at the time, they liked Dr Morales and have heard great things about him from other families. He also did an exam of my mouth and got a general update of what Dr Schendel had done previously. He agreed that another distraction was in order but I am a pretty complex case due to my TM joint ankylosis. He would actually recommend trying to repair the TM joint first but the reality for children my age is that the needed stretching and exercises that need to happen post surgery is unlikely. Therefore, first up will probably be the jaw distraction. Before any decisions on time and method, though, he wants to see us at his own clinic and he wants a CT scan to get a better idea of what he is up against.

Speech came by for a quick hello since I had seen speech folks in the dysphagia clinic appointment a few weeks ago. While I went back to the wiating room to play, Mommy met with the nurse to get any questions answered. The nurse has been following my blog recently and she let Mommy know that I am one of four kids currently in the craniofacial panel that have Nager syndrome. Mommy just talked to Isaac's mommy a few weeks ago. There is another child in Idaho that she will be contacting soon and will pass on my blog address in case they want to chat. She is going o research who the other child is as well. Although Dr Schendel was treating quite a few kids with Nager syndrome, it sounds like Dr Morales is as well.

It was a busy appointment but there weren't any surprises - in fact it went pretty much as Mommy had predicted. In a few weeks we should get the
"results" back - basically just notes on the recommendations of the specialists. I'll let you know what they say.

Peyton Nicole Smith

Sunday, July 18th, 2010

I shocked my parents tonight when we went out to dinner by wanting to eat some noodles with tomato sauce. For not eating noodles before I was a pro - sucking the noodles through the area where my bottom teeth had been just a few days ago. You can see the end of a noodle in the picture above. The noodles were warm when Mommy brough them to me and I signed "hot". After a few minutes, I signed "hot" "all done" to let Mommy know they had cooled off. Since my extractions a few days ago, my parents have been encouraging me to drink milk and water instead of soda. Tonight, they put a little soda in a nut cup for me to drink. Very seriously, I signed "soda" "good" after my first sip - I was in heaven!

Peyton Nicole Smith

Saturday, July 17th, 2010

It seemed like a good idea at the time - Uncle Jeff and his girlfriend Viv would come over for dinner. Just as they were pulling up, Henry was looking out the window and saw a Rottweiler being walked by. He was barking and wound up and about that time in walked Viv and Jeff. Now Henry knows Uncle Jeff but he doesn't know Viv and she was the first in the door. Before anyone knew it, he ran up to her and gave her a hard nip on her foot - you can see a tooth mark above. My parents were horrified! Uncle Jeff lovingly attended to Viv with some alcohol swabs. With a little bit of wine, Viv was feeling much better although my parents were still shaken.

Despite it getting off to such a rough start, the rest of the night was great with a nice steak, some good wine and me entertaining the crowd as usual.

Peyton Nicole Smith

Friday, July 16th, 2010

Look at me!

Peyton Nicole Smith

Friday, July 16, 2010

Thursday, July 15th, 2010

As you can see, I am none the worse for wear following my dental surgery! I had a little less energy in the morning but by mid-day I was back to my normal self. I even tried to eat a cracker but with essentially all my bottom front teeth gone, it was a little difficult!

Peyton Nicole Smith

Wednesday, July 14th, 2010

My parents haven't been looking forward to this day - it was time for my dental surgery. It was just a little less than a year ago (7/24/09) that I had several root canals, crowns and extractions. Mommy and I met up with Aunt Kristin who took the day off to be with us. While Mommy and I checked in, Aunt Kristin ran to get some much needed coffee. I had a super fun time playing with all the toys until they called me back to an exam room. They started off with a height and weight and I knew I was in for some trouble. Once in the exam room, I had a bunch of visitors. First was the nurse who took my blood pressure (which was very high due to the tantrum I was throwing) and my temperature. The dentist who was doing my surgery came by as well to discuss the plan. Then we met the anesthesiologist who ordered several medications - Pulmicort due to my previous reactive airway issues (see my previous hospitalizations for the common cold), antibiotics (possible infection from dental surgery is not good with a heart condition) and Versed to calm me before they took me away. Aunt Kristin had brought me some new toys to keep me entertained and it helped keep me occupied during the breathing treatment and eventually the Versed kicked in. Mommy rocked me and once I was good and loopy she handed me off to the nurse without a fight.

As Mommy has said in the past - my mouth is the perfect storm for dental decay. It is small to begin with and then when you add my ankylosis, it is nearly impossible to open my mouth wide enough to do any real good tooth brushing. To make matters worse, my bottom jaw sits so much farther back from my upper jaw now that when I clench my mouth closed during tooth brushing, my bottom teeth are hidden by my top teeth. As if the anatomy issues were not enough - then I have a few other contributing factors. Because of the trach and g tube, I don't use my mouth for breathing and eating like most folks which means my mouth is open to the air all the time and I don't have a lot of saliva production which means that any bacteria isn't washed away by the saliva when I swallow - not good! As if I wasn't already a dental nightmare - add on my diet. The only foods I like are refined sugars and carbohydrates - the worst bacteria producers. And in addition, I graze all day which means the bacteria is constantly being produced. So there you have it - the perfect storm. So when the dentist came out to speak with Mommy 2 1/2 hours later she shouldn't have been surprised to hear the bad news. Well she heard the bad news but she also saw the bad news when he handed her a biohazard cup with my teeth in it. Drum roll please - I lost 7 teeth and had 5 teeth crowned! There were four teeth that needed to be extracted but three of the four were fused which resulted in seven extractions in total. The one extraction that was a single tooth was actually a root canal/crown from the last dental surgery that developed an abscess. Now as the dentist explained it, 90% of the time a root canal followed by a crown will take care of the tooth for good - but as you know, I would have to be the 10%! Because of my heart condition and not wanting to chance an infection travelling to my heart, the dentist said he was more agressive then he might normally be which resulted in more extractions then crowns. About this time, Aunt Kristin walked in to hear the update and got to witness Mommy breaking out crying - can you say embarassing! Mommy usually does a pretty good job of keeping it together but seeing the proof of all my little teeth in the cup was just too much - she felt like a horrible parent.

As Mommy mopped up the tears, she was able to come back to visit me in recovery and Aunt Kristin joined her shortly after. I had woken up a few minutes before Mommy arrived to see me and I was fighting! The nurses had put pillows all around the crib to keep me from huring myself. They had given me some anti nausea meds which have the side effect of knocking me out so I was down for the count. After watching me sleep for a good hour, Aunt Kristin went home and Mommy kept watch. Now apparently most children gradually wake up after anesthesia but not me. Out of nowhere, I sat straight up in bed and was ready to go. No grogginess or whining - just wanted to get dressed and leave. And about five minutes later that is just what we did. Mommy called Daddy on the phone on the ride home and I was laughing from the car seat as if I had just spent a day playing at the park - not having serious dental work! I got home and was content to watch Caillou in between irritating the dogs before Daddy got home. I hadn't had much time to say hi before Aunt Kristin, Uncle Lonnie and Jackson came to check on me. Jackson and I spent the next few hours chasing each other around the house, climibing the stairs and jumping on the bed - Mommy never knew children's Tylenol was so good - she might have to have some herself! After all that exercise, it still took me quite a while to fall asleep but I finally did. Mommy and Daddy will keep up the pain meds every 3 hours through the night to keep my pain under control. And tomorrow they will get back on the horse and start brushing my teeth again. None of us like this nightly ritual because I cry and fight and have to be held down but brush they will. I don't have many baby teeth left so here's hoping I keep the rest of them for awhile.

Peyton Nicole Smith

Tuesday, July 13th, 2010

I was super happy to discover that Imani and Nia had some jammies with the princesses and a horse! I couldn't wait to put it on and dance around the house!

Peyton Nicole Smith

Monday, July 12th, 2010

Today I had some visitors - Imani and Nia! They have followed me on the blog but this is the first time I met them in person. And it couldn't have been any better because they came bearing gifts! They have been learning about sharing and giving and they decided to share and give to me - I'm okay with it! They brought me twin baby dolls which I adore (can you tell?), a swing to put the babies in, play princess dresses and a bunch of clothes and shoes they had grown out of. They weren't able to stay long because they had to get to a party but I liked showing them my play room and hope they come back to play soon!

Peyton Nicole Smith

Sunday, July 11th, 2010

Time for a trach change! What do you need? A rolled up blanket under my neck, saline and IV sponges to clean the stoma after the trach is pulled out, steroid cream and Q tips, a 3.5 PED trach and one size smaller just in case and a trach tie. For all the prep, it only takes less than a minute for the whole process.

Peyton Nicole Smith

Sunday, July 11, 2010

Saturday, July 10th, 2010

Grandma Mower called Mommy this morning to let her know that Sandy was having their annual horse parade and thought I might like to go. Since Daddy was waiting for the furniture to be delivered, Mommy and I headed down to the Sandy City Center to watch the horses. I was super excited and insisted that I get to ride them although Mommy kept trying to explain today we only got to watch them.
We found a spot in the shade and with a great breeze it was perfect weather for watching the horses ride by. We stood and put our hands over our hearts as the American flag was carried by and the Marines walked their horses by. There were horses in all shapes and sizes - even little minature ponies pulling little carts. Mommy and I waved at everyone that went by and plan to make this a yearly event!
Peyton Nicole Smith

Friday, July 9th, 2010

I had a great time Friday night at my Grandma and Grandpa Mower's house. My cousins Traiton and Jackson and my Uncle Jason and Aunt Kristin were there as well. Traiton was very nice and brought his t-ball stand and I was content to play with it the entire time. Unfortunately, Mommy required that I share it with Jackson and Traiton too! When it came time to leave, I threw a Category 5 tantrum that lasted most of the way home. Right before bedtime, Uncle Jeff came by with his girlfriend, Viv and I took a few snapshots of the group that he posted on Mommy's Facebook account. What other 2 year old do you know that is asked to be the photographer at events?
Peyton Nicole Smith

Thursday, July 8th, 2010

I am always very talkative during bath time!

Peyton Nicole Smith

Wednesday, July 7th, 2010

After a few quiet months without doctor's appointments, July is going to be busy and today started it off with the dysphagia clinic. In Sacramento, they didn't have a dysphagia clinic but it works kind of like the craniofacial clinic and brings multiple specialties together for one long appointment. We got checked in and into a room and then it was time for a height and weight. Fully clothed I was at 25 lbs 8 ozs - so my parents decision to pump up my volume in the last six weeks worked like a charm - I made up the weight I had lost a few months back. In fact, when the RN went over the growth chart with my parents I was in the 90th percentile for height to weight! I am still small for age compared to other kids but I am doing great when compared to my previous growth charts.
In the next hour, the room was filled with lots of folks - dietician, GI, RN and speech pathologist. Mommy didn't know that GI was part of the clinic so she discovered my GI appointment two days later was able to be cancelled - yeah! Mommy had several items on the agenda for the appointment - changing out my formula, addressing the issue of my g tube getting "sucked in" and establishing care with feeding, speech and GI. First up was the dietician and GI. They both agreed that I was ready to move to an older soy formula. Since Mommy already had some at home for a trial, they encouraged Mommy to start me on it and then call them if it went well so they could get a prescription for the supply company to provide it. Because my growth was on an upward trend they didn't make any changes to volume. They had asked my parents not to feed me for several hours in anticipation of doing a feeding trial so like clockwork, my g tube button sucked in while the GI was in the room. Although my parents don't like seeing me in pain, it was the first time a doctor has witnessed what my parents have been trying to describe. The GI was floored - she had never seen anything like it (just like the last GI). My parents pointed out that the surgeon who put in my g tube in Sacramento puts it in a different location then what is standard in the field. My parents have wondered if that may be contributing to the problem and the GI was curious as well. Since nobody is anxious to have me endure another surgery to move it they decided to change my button size and see if that helps. They are hoping that with a longer stem maybe it will help. So my parents got a prescription for a different size and they will give it a shot and see what happens. If that doesn't help the next step will be to put some barium down the tube and figure out exactly where the tube is located in my stomach.
The speech pathologist came in and helped my parents figure out a good resource for speech and feeding closer to home. She also asked that the new therapist complete a swallow study since it has been almost two years since the last one. To assist in my own self feeding, the speech pathologist also gave my parents a resouce for occupational therapy as well. Helene had me eat and drink a little in front of her and also talk a little by covering my trach. She was pretty impressed with me and told my parents that of the five current Nager children working with the craniofacial panel at Primary Children's, she thinks I am the highest functioning. Mommy knew of only one other child with Nager that just moved to the state in the last few months - so she was shocked to hear there were three others in addition. Helene explained that because Primary Children's is one of the only children's multispeciality hospitals in the region, it is possible the children don't live in Utah and that they end up seeing the children with the most severe cases.
I will go back to the dysphagia clinic every 4 months for a check up but continue to get speech, feeding and occupational therapy in between. After a long day with no nap I was definately ready to get home.
Peyton Nicole Smith

Wednesday, July 7, 2010

Tuesday, July 6th, 2010

A note from Mommy:

Last week when Carrie from the State came to sign Peyton up for the waiver program, I asked her a question. About six weeks ago I had called asking where Peyton was on the list and Carrie indicated that new children with vents had pushed Peyton down the list. There were now three children ahead of Peyton and only two slots were scheduled to open up in the next few months. That meant Peyton would be at the top of the waiting list again but with no open slots on the horizon. So now I wondered, how did Peyton end up coming off the list? I wasn't quite prepared for the answer - a child had passed away providing the open slot. Of course I know that with the children who qualify for the program they have serious medical issues so death is always a possibility but it is something I never imagined benefitting from. After having nursing for several years and then going without any nursing for several months, I already knew I would appreciate it much more this time around. Now in the back of my mind, though, I will also be wondering about the child who died much too young and hope never to take for granted the nursing time we receive due to their untimely passing.

Monday, July 5th, 2010

I got to spend more time with my parents today because it was a work holiday and they had the day off. We started off the morning by going shopping for furniture. Now let me tell you, it is no fun at all to be at a big store with furniture and lots of knick knacks and not be able to touch a thing! Needless to say, after a few hours I was getting antsy and my parents were getting anxious! They finally wrapped up the deal and some new furniture will soon be delivered!

In anticipation of the furniture showing up the toys that had ended up in the family room/dining area needed to move. So my parents moved all my toys downstairs to the basement and now I have my very own playroom! I love having all my toys in one place! I spent most of my time there in the evening. I didn't want to leave to go to bed but my parents promised I could spend more time in the room tomorrow.

Peyton Nicole Smith

Monday, July 5, 2010

Sunday, July 4th, 2010

I spent a few hours at Grandma and Grandpa Mower's today playing with my cousins - Jackson and Traiton. While Jackson played with the bubble blower and picked up pine cones - I worked on my batting and drop kicks. Cousin Traiton had lots of energy today and didn't stay on one taks for very long!

Daddy was busy at home. He replaced the outdoor lights, painted the mailbox, mounted a new mailbox and put on new house numbers. They were small changes but are helping to make a big difference on the house. Good job Daddy!
After dinner, my parents took me and my bike to a local park and it was virtually deserted so I had a lot of room to run around and go down the slide as much as I wanted. To the sound of fireworks in the neighborhood I eventually fell asleep.
Peyton Nicole Smith