Wednesday, August 31, 2011

Friday, August 26th, 2011

3rd Annual HopeKids Wasatch Adventure 2011

Sunday, August 28, 2011

Wednesday, August 24th, 2011

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

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

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 17, 2011

Wednesday, August 17th, 2011

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

Peyton Nicole Smith

Monday, August 15th, 2011

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

Sunday, August 14, 2011

Saturday, August 13th, 2011

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

Thursday, August 11, 2011

Saturday, August 6th, 2011

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

Sunday, August 7, 2011

Monday, August 1st, 2011

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

Peyton Nicole SMith

Thursday, July 29th - Sunday, July 31st

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