Monday, May 21, 2012

Friday, May 18th, 2012

Today someone passed away who changed the lives of thousands of children across the United States.  Because of her and the determination of her parents, Peyton was able to come home from the hospital with a tracheostomy and a feeding tube. Because of her, we had nursing care to help in those first few years that were so terrifying and overwhelming.  Because of her, we have respite care now so that Travis and I can have a weekly date night.  Because of her, Peyton can live a life as close to normal as possible and she can do it at home instead of in an institution.  Thank you Katie.

Mary Katherine "Katie" Beckett

Mary Katherine “Katie” Beckett passed away at St. Luke’s Hospital on Friday, May 18, 2012. Known as “Katie” to many, her life and legacy will long be remembered.

Born March 9, 1978, to Mark and Julie Beckett at St. Luke’s, she will be remembered by many who passed through those doors: doctors, nurses, therapists, food service workers and cleaning staff who all loved and cared for Katie and her special needs. Her parents are most grateful for them in their instrumental role in her young life.

Katie is survived by her father, Mark William Beckett, and stepmom, Linda, and stepsister, Chelsea Lee; her mother, Julie Beckett; grandpa, Larry Beckett and stepgrandma, Maxine Houser; “Irish” family aunt, Mary Barbara Lenz of Dubuque, and cousins, Laura (Gustavo) and Lisa, and great-niece, Frances, and Dr. Joe and Hannah; uncle, John Joseph O’Connell III (Mary Jo), and cousins, Shannon (Nick) Lampe and John IV (Angie) O’Connell, and great-niece, Abby, and Ashleigh and Casey O’Connell; aunt, Maureen (Chris) O’Connell Barry, and cousins, Shaun (Ashley) and great-niece, Sophie, Kelly (Adam) Fabor, and great-niece, Raven, and great-nephew, Duncan, and Bailey (Matt Keister); uncle, William Ryan (Mary) O’Connell, and cousins, Ryan and Colton; uncle, Michael (Brenda) O’Connell, and cousins, Michael Jr. and Zachary John O’Connell, and Amanda DeDecker; uncle, Patrick (Sheryl) O’Connell, and cousins, Candace (Ryan) Murphy and Brandon O’Connell, and great-niece, Kaylyn; and uncle, Jamie (Dawn) O’Connell, and cousins, Megan and Shamus O’Connell. They will all live to support her memory.

Katie lived at St. Luke’s Hospital for 3 1/2 years in the Pediatric Intensive Care Unit and came home on Dec. 19, 1981, but only after Congressman Tom Tauke, Senators Chuck Grassley and Tom Harkin, President Ronald Reagan and Vice President George W. Bush pushed to have an exception to Medicaid policy changed. Today, this monumental legislation is still referred to as the “Katie Beckett law” and now over a million individuals who would be living in hospitals or care centers are cared for at home and in their communities

She was always an advocate for people with disabilities and special health care needs, testifying many times before Congress and speaking across the country telling her story and making sure people paid attention to “including” people with disabilities in everyday life.

Katie was a writer, dying before she could complete her novel. She had a quick wit and a joyful presence; always tiny in stature, but with an intellect that warned you to tread lightly.

She will be greatly missed by her close friends, Beth, Julie, Erin, Shaun, Cassie and Jessica, as well as her family and the many people who benefited from the work she did. She leaves behind her “children,” the many stuffed animals who were her greatest confidants. She will miss Red Lobster, Barnes & Noble, Starbuck’s, Joe Raposo from Dream Street, WWE wrestling, and her unending love for Shaun Veers.

Waiting to greet her at the golden gates are her grandparents, Peggy Beckett and John and Barbara O’Connell; her beloved, Dr. Darrel Dennis; and her other “parents,” Polly Egan Arango and David Woll.

A visitation will be held Thursday, May 24, at Teahen Funeral Home from 4 to 8 p.m., with a vigil at 4 p.m. Her funeral will be Friday, May 25, at St. Matthew’s Catholic Church at 10 a.m.

According to her wishes her body will be donated to the University of Iowa to help health care workers learn from her experience. Even in death, she wanted to give back.

Online condolences may be left for the family at

Monday, May 14th, 2012

Today started as any other Monday morning - busy at work with a long week stretching ahead of me.  And then a noticed a posting from another Nager mommy that said the geneticist working with her child had discovered the gene for Nager.  For a moment it almost felt like time stood still.  As I reviewed the article from Calgary and then found the actual study (see both below) I was so excited.  Almost 2 1/2 years ago the University of Washington had announced they had discovered the gene for Miller Syndrome which has many similarities to Nager Syndrome.  We figured we would hear any day that the gene for Nager Syndrome would be discovered as well.  But as time went by without any announcement I figured that they must have run into some problems.  So to hear something now after all this time came as an unexpected but welcome surprise.  The Nager Syndrome Facebook page came alive with comments and questions.  We were provided with the email address of the geneticist in Canada that is mentioned in the article so I shot off an email immediately to thank him for his efforts.  Within moments he responded back - how thrilling - it was like talking to a celebrity! 

After the excitement wore off, the reality is that for the moment nothing really changes.  We have a February 2013 appointment to meet with the pediatric geneticist at Primary Children's.  (Yes, you read that right - February 2013!).  Our super star pediatrician, Dr Norlin (who is also now Jason's boss) said that Dr Carey would try to get us moved up to see him by the end of May so that he can review the study and work with Dr Bernier to get Peyton's blood tested for the gene. 

But despite having to hurry up and wait like is often the case with technology, something has changed.  Because now there is hope.  Hope that in the future with genetic testing and/or gene therapy, Peyton may have the ability to have children of her own that don't have Nager Syndrome.  I wouldn't change our experience because I have learned so much about myself, Travis, my family, my friends and the goodness of strangers through Peyton's syndrome.  But if I could remove the pain and fear that Peyton has had to experience I would do that in a second.  Because of the hard work of Dr Bernier and the University of Washington, Peyton may have the opportunity for a "normal" childhood for her child - and my grandchild - and that is more than I ever could have hoped for 4 1/2 years ago when we first heard of Nager Syndrome.

Sunday, May 13th, 2012

I am not sure if was planned this way or not, but Sunday, May 13th kicked off the first Global Tracheostomy Tube Awareness Week.  Since it was hosted by Mommies of Miracles I don't think it was an accident that May 13th is also Mother's Day.  Peyton has definately spread awareness about tracheostomies but it is nice to see that there are other's trying to bring attention to a procedure that has given many children and adults an opportunity for a good quality of life.  In the past I may have felt conflicted about agreeing to Peyton's tracheostomy but looking at her run around each Monday at t-ball I know that we made the right decision and I am thankful every day that it was an option.

Saturday, May 12th, 2012

I have anxiously been waiting for this day to come.  Mommy had told me a few months ago that through Hope Kids, I would be able to start going every other Saturday to ride horses.  Resolution Horse Company just started their second season at their non profit horse therapy company.  When I arrived, I got to meet Dixie who I would get to ride.  First, though, I spent some time brushing her.  Then I helped get the pad that I would be sitting on.  Finally we were off and running (okay walking) and I had a great time singing "Old McDonald Had A Farm" while we went around and around.  At the end, I even got to get her some alfalfa cubes as a treat.  It was so much fun and I can't wait until I can go back again!

Peyton Nicole Smith

Tuesday, May 8th, 2012

It was time for my yearly cardiology appointment and after last year went so smoothly I don't think Mommy was prepared for any resistance on my part this time.  Boy was she wrong!  I did not want to get the echocardiogram done so Mommy pretty much had to wrestle me to the table and once I realized there really wasn't going to be anything that hurt I finally relaxed long enough to enjoy watching my heart beat on the monitor.  When my cardiologist came in later I was in a pretty good mood and didn't fuss at all while he listened to my heart.  He said that based on the results of the echocardiogram I was doing great - no change.  At this point, he would normally only have me return in three years instead of yearly since not a lot of growth happens over the next few years.  Since I have a syndrome and the growth pattern is not well known, though, he wants me to come back in two years instead.  Mommy had a few questions about activities now that I am starting school and he let her know with the exception of football and weight lifting I was able to do pretty much anything any other kid is doing at my age.  Yeah!  Wipe Out here I come - just kidding!

Peyton Nicole Smith

Saturday, May 5th, 2012

As I posted earlier, Peyton and I were asked to host two tables at the Faces of Hope dinner auction for Hope Kids.  Mid-day while Peyton was getting a nap in, I went to Rice Eccles Stadium to set up the tables.  The first had a medical theme and the other had a Dr Seuss theme.  Then I ran home to get ready, get Peyton ready and head right back.  When we stepped off the elevator the first thing we saw was a photo of Peyton blown up.  She was thrilled and felt like quite the star.  We then walked down a narrow hall way with photos and posters of different Hope Kids before we made it to the area where all the tables were now completely set for dinner.  It was amazing to see the place transform in just a few hours.  There were hundreds of auction items laid out and waiting to be bid on.  Peyton and I wound our way through the tables to see the creative ways other families had decorated.  We met up with Elliott and his handler early on and Peyton was in love.  She wanted to follow him around the whole night but I had to convince her to stay at our tables so we could meet the people who were seated with us.  While we waited for dinner to be served, Peyton was fascinated with a beautiful teenage girl who was playing the harp. Over dinner we introduced ourselves to the people at the tables and answered some questions.  Peyton actually did really well for having to sit that long.  In fact, she took a liking to the gentleman sitting next to her and wanted to monopolize his time!

After a few hours of sitting at the table while there were some presentations and speeches Peyton began to get a little antsy and wanted to dance around.  Luckily, I was able to keep her relatively quiet until it was time for the real entertainment to begin.  We headed to the back of the room so she could dance without distracting anyone.  A sweet woman had bid on an item and it came with a stuffed monkey.  When she saw Peyton dancing around, she brought the monkey over so Peyton had a dance partner.  So much for not being a distraction - every one who would walk by would smile and say hi.  We had several people ask to take photos of her because she was just so cute and happy.  As the harpist was packing up, we stopped by to say hello and thank her for the beautiful music.  She was a sweet girl and answered Peyton's questions.  As we walked away she came by and gave me one of her cards.  She wanted me to know that if we ever needed help finding a harp teacher for Peyton or if Peyton just wanted to come by one day and play her harp she would love to help! 

It was a wonderful night and we were so thrilled to be a part of it.  Hope Kids has been a wonderful part of our lives since moving back to Utah and it was great to be able to give back in some small way. A big thank you to Tracel and Angelique of Etsy who donated the thank you cards and the Hope Kids soaps.  I hadn't intended to ask for donations but when they found out why I was ordering them they were happy to donate their time and supplies to brighten up the tables.  Thanks so much!  I also want to make sure that everyone knows that most of these photos were taken by a photographer who donated his time as well.

Friday, May 4th, 2012

What a huge day for my Uncle Jason.  Tonight he graduated with a double Master's degree from the University of Utah!  Everyone in the family was so proud of his hard work.  He had to rush from a job interview (which he later got) to get to the graduation ceremony on time.  That evening we met at Uncle Shawn's pub to have dinner and all of his high school friends were there with their families.  It was a great night!

Peyton Nicole Smith

Friday, April 20th, 2012

Mommy left me for a few days to visit my great grandparents in Portland.  It was beautiful weather for Portland (in the 80's) and they got to walk along the Columbia River with Great Grandpa Gil.  It was a short trip but hopefully next time I get to go along.

Peyton Nicole Smith

Monday, April 16th, 2012

So the Therabite finally arrived but unfortunately it may be too little too late because as Dr Morales predicted my jaw has already started tightening up again. 

Peyton Nicole Smith

Sunday, May 20, 2012

Monday, April 9th, 2012

I am sure like it seemed a great idea at the time to put myself, Jackson and Traiton on the same t-ball team.  And although it is certainly fun to be on the same team, we seem to pay less attention to the game and more attention to each other! 

Peyton Nicole Smith

Sunday, April 8th, 2012

Santa Claus may come down the chimney but apparently the Easter Bunny couldn't make it through the doggy door so when I woke up this morning I looked out on the deck and saw he had left me a sand box and my easter egg pail!  After two easter egg hunts yesterday, I had two more on the docket today.  The first was at Grandma and Papa Smith's house in the afternoon. The second was at Karen's house.  So after a fun filled Easter weekend I am now an easter egg hunt expert.  (So next year at the Cottonwood Easter Egg Hunt I am ready for a rematch!)

Peyton Nicole Smith

Saturday, April 7th, 2012

Easter wouldn't be Easter without an easter egg hunt - okay let's try four easter egg hunts!  Saturday morning Mommy, Aunt Kristin, Jackson and I braved freezing temps to join hundreds of other kids for the annual Cottonwood Easter Egg Hunt.  A big field was divided into different age groups and we were primed for the 3-5 age group.  As the announcer on the loud speaker kept saying - only the 0-2 area were parents allowed on the field.  When it was time to go, the fire engine siren went off.  Jackson took off right into the fray but I had forgotten my bag in the excitement so I lost precious moments coming back to the sidelines for my bag.  By that point I had lost Jackson in the crowd and spent the rest of the time looking for him.  But the real surprise was that Mommy, Aunt Kristin and very few other honest souls had stayed on the sidelines and let their kids gather eggs on their own - almost every single parent went onto the field with them. 

When Jackson and I came off the sidelines it was pretty clear that he had scored big time while I had only ended up with one egg.  And in a twist or irony for a tube fed kid, inside my egg was a gift certificate for an all you can eat meal at Chuck-A-Rama!  As Jackson spent a few minutes gloating about his haul, we went to go see the firefighters and I told them excitedly that I planned on being a firefighter some day.

Peyton Nicole Smith

Monday, March 26th, 2012

Easter is one of my favorite holidays.  It isn't so much about the candy or the egg hunts but mostly beacuse I love decorating Easter eggs.  Grandma Marilyn let Jackson and I come over for the messy project and we had so much fun.  We only spilled a few cups of colored water!

Peyton Nicole Smith

Thursday, March 22nd, 2012

 On Thursday nights, my parents use some of their respite hours to get in a "date night'.  On this night, Uncle Jeff met them while they were running some errands.  They were at the local party store looking for some items for the upcoming Hope Kids fundraiser.  With a whole selection of hats, it was only a matter of time before Daddy and Uncle Jeff decided to pose for some pictures.  With all of his talk that Daddy is his "life partner" it shouldn't be surprising that they chose these hats - or that Uncle Jeff is the bride!

Peyton Nicole Smith

Saturday, March 17th, 2012

It's been a year since Mommy was put in touch with another family in Utah who has a child with Nager Syndrome.  They live about 30 minutes away and we have had good intentions to get together but we were finally able to meet up today at the Discovery Children's Museum.  Daxton is the youngest in a large family and except for those that were working, all of his siblings joined him to meet Mommy and I.  He was a little shy with me but I wasn't shy at all and I was in heaven being carried around by his older sisters.  Mommy was a little teary eyed seeing how much I enjoyed being a "little" sister for a few hours.  Mommy got a great chance to talk with his parents about their medical journey with Daxton.  Since Daxton and I share the same surgeon, they had the opportunity to discuss the similarities in our anatomy and surgical outcomes.  Although Daxton had just turned 5 a few days earlier he was much taller than me - answering one of the questions Mommy has had all along about my short stature.  Towards the end of our visit, I played "Duck, duck, goose" with Daxton and all of his siblings and we ended up chasing each other around the museum.  I was so sad to leave that I cried most of the way home.  Such a wonderful family and a day Mommy and I will not soon forget.

Peyton Nicole Smith

Wednesday, March 14th, 2012

When I woke up this morning at Grandma Glenda's, I headed to the potty first thing.  After being fed slowly all night long talk about needing to pee!  I had been asleep on the couch after Daddy had dropped me off this morning and it wasn't until I was on the potty that Grandma noticed that I was wearing the cap on my trach. Since she knew she hadn't put it on, she asked me if I had put it on.  When I shook my head "no", it occurred to Grandma that something pretty important had happened.  After checking with my parents it became clear that on accident I had fallen asleep overnight with my cap on!  Now this is a little more scary because since Christmas time I have been trading off sleeping with one of my parents.  And since I haven't been in my bedroom with my machines that means I wasn't hooked up to a pulse oximeter while sleeping with my cap.  So on accident my parents tested a theory that they have had for quite some time - I can tolerate being capped while sleeping which is a pretty good sign that I could be decannulated at some point in the future.  Even with this unexpected good news it doesn't mean I am going to be a mouth breather any time soon since I still have many surgeries in my future and my last laryngoscopy still showed a very small airway.  But it is still a tiny, dim light at the end of the tunnel!

Peyton Nicole Smith