February 24, 2014 marked Ava's third birthday. I can hardly believe that our little girl is 3 years old. It seems like just yesterday that she looked like this:
Leaving the hospital
Mason and Ava on her first day home
Maddi and Ava - sisterly love
In typical third child fashion I did not get any good pictures of her small family birthday gathering. So, this phone picture will have to do:
Ava getting ready for her cake
Ava has had quite an adventurous first 3 years. She has opened eyes and captured hearts. We love you, baby girl, and can't wait to see what this year brings.
Family beach trip in July 2013
Photo Credit: Chad Button
Today, February 28th, is Rare Disease Day. I don't often consider what Ava "has" to be a "disease", but rather more of a chromosome "change", because Ava does not have a named diagnosis other than a "partial trisomy of the 1q". It may also be because the word "disease" scares me. Statistics indicate that 30% of children with rare diseases will not live to celebrate their 5th birthday. This is terrifying, heartbreaking, and too close to home. We have no reason to believe that Ava would not celebrate her 5th birthday, but there are many children with rare diseases who may become or are part of that 30% statistic. As I wrap my brain around the enormity of rare disease I will be looking to National Organization for Rare Disorders (NORD) and other non-profits for guidance and education. I want to be educated about as many rare diseases as possible so that I can best support the many families living with and through rare diseases. For more information about Rare Disease Day visit www.rarediseaseday.org.
1008 Days Ago. 1008 days ago, it was a typical day with our family at home juggling care for a newborn and her older siblings; Mason was three years old and Maddi was two years old.We knew that Ava was not gaining weight well, but we had no idea what was preventing appropriate weight gain or what was in store for us.Late in the night on May 10, 2011, Ava developed a high fever and we rushed her to the emergency department.Ava’s oxygen saturation was low and they admitted us for flu observation and oxygen support.Six days later, Ava would fail her first swallow study, we would discover she had aspiration pneumonia - not the flu, she would receive her first NG tube to prevent aspiration, start genetic testing, and not eat or drink by mouth until December 19, 2011 when she was cleared for nectar thick foods and liquids.
Ava
all dressed up for the Royal wedding, 11 days before admission, this dress was
swimming on her! - April 2011
1002 Days Ago…
Is when life, as we knew it, changed and we entered the world of tube-feeding with all of the struggles and blessings it holds.1002 days ago, Ava had been in the hospital for six days while the doctors and nurses tried to figure out why this tiny ten-week old baby girl was not gaining weight and needed oxygen to keep her breathing at a normal level.
Ava after 4 days of NG feeds - May 2011
2 years, 8 months, and 26 days...
Is a long time to live with a feeding tube and to parent a child who is fed with a tube. Especially when the initial assessment was that she would have an NG tube for one week and then reassess (which in my mind meant she would pass the reassessment and we would be tube-free in seven days). It is also a long time to emotionally grow and thrive as parents, while our child physically grew and thrived with her tube feeds.
Maddi and Ava in May 2013 Photo Credit: Jenn Clark Photography
I remember feeling fearful when Ava first received her NG tube in the hospital. Not fearful of what people would think or that she would have it forever because we initially thought it would only be for seven days. I was fearful of the discomfort it would cause her and of learning how to put it in. I hated the tape on her face that irritated her delicate skin. However, learning to feed Ava with the tube was easier than I anticipated. Ava was continuously fed small amounts of food for 24 hours a day to prevent aspiration. That meant that we not only carried Ava everywhere we went, but also her feeding bag, and for several weeks upon discharge, her oxygen tank.
Annual visit to the peony garden, June 2011, shortly after discharge
Super Daddy with Ava, the feeding pump, and oxygen tank - June 2011
For the two weeks that Ava was inpatient, we kept Mason and Maddi at home and in daycare to keep their daily lives as normal as possible. I primarily stayed in the hospital with Ava since it was the end of my maternity leave, while my husband juggled work and Mason and Maddi. We switched places a couple times during those two weeks to give each other a break and for each of us to see the other children.
After two weeks in the hospital, we went home with Ava still using oxygen 24 hours a day and still feeding through her NG tube 24 hours a day. I remember the day we went home like it was yesterday. Mason and Maddi had not come to the hospital and so they had not seen Ava with her NG tube and oxygen cannula. I was worried about what they might think or say; sometimes kids have a way of being very innocent and honest, but say things that adults may not be ready to hear. I was sitting on the couch with Ava in my lap and just staring at her tubes…at her tubes…not at her.
Mason, in his three year old wisdom, came over and lovingly patted Ava’s head and said in his sweet little voice, “awweeee….she’s so cute”, and walked away. I froze...and realized that my heart was pounding because I was afraid he would say something about her tubes and I hadn’t yet figured out how I felt about them, much less how I would explain them to a three year old little boy. But in that moment, seeing Ava through Mason’s eyes, I was forever changed. I no longer saw the tubes on Ava’s face…I only saw Ava. And I knew that Nothing Would Hold Us Back.
Mason and Ava in May 2011
That is when our lives changed again. From that day forward, the way I felt about and viewed tube feeding was in a positive way and not with fear. Tube feeding does not define Ava, it is merely the way she receives her nutrition.
Ava on the beach, July 2011 Photo Credit: Chad Button
Where are we 1002 days after May 16, 2011? Ava now has a g-tube and is successfully fed a blenderized diet over four meals a day. She is also cleared to eat or drink all consistencies of food and liquid. Ava’s oral muscles are still weaker and so she is primarily fed via g-tube, but she enjoys oral eating and is orally eating more and more. Mason and Maddi help carry Ava’s food backpack and have still never questioned Ava’s feeding tube. If people ask about it they simply say that’s how Ava gets her food. Ava has played in the ocean and swims in pools. We bike, camp, hike, run, and enjoy all the activities in life we can handle with three children aged six and under. One just happens to be primarily fed through a tube.
Ava
and the kids hiking in the Hocking Hills. Ava was simultaneously tube
feeding and hiking. The Danger was for the cliffs, not for the tube
feeding! - August 2013 Photo Credit: Stacey Thomson
How do we feel about our child having a feeding tube? Thankful. The feeding tube not only SAVED Ava’s life, but it allows us to LIVE life. Without her feeding tube, Ava would not be here. I don’t say that dramatically, but rather factually. Ava aspirated fluid into her lungs. If we had to continue feeding her orally before her muscles were ready, she would not have survived.
Photo Credit: Renee Tarmoom
Before Ava had a feeding tube I am not sure if I truly paid attention to other children or adults who had them. After Ava received her feeding tube I wanted to run up to every family I saw in public or in the hospital and yell, “MY daughter has a feeding tube, I’m part of the club!!”…but that would be creepy and stalkerish. So, now I politely smile and wave to the kids or smile and nod to the adults. I don’t have a sign on my forehead that says, “I’m a tube feeding mom”, but I am ordering an “I heart a Tubie” button from the Feeding Tube Awareness Foundation store and will wear it with pride!
The Jones Party of Five has had a pretty amazing year of change in 2012 and an even bigger year of change is coming up for 2013. This may be a lengthy posting, but I hope you will stick with us until the end for a picture and a BIG announcement (and no, it is not a new baby - although I've heard the pain may be a close second to giving birth!).
This past year, we have met some incredible people and have even connected with people we've actually known for several years, but held at a distance without knowing it. We are all growing physically, emotionally, and spiritually. Our family is becoming financially secure, giving in ways we never have before, and learning to focus on the important things in life. We have been able to fully embrace our new life of being a family with 3 children, one of whom has special needs. We have been blessed by our family and friends who give to us on a daily basis, in ways they probably don't even know they are giving! We have been given opportunities to help others and it feels so good to give back. The holiday season seems to bring these opportunities to the forefront, but the reality is that these opportunities exist all year long.
Which leads me to our BIG announcement:
Bill and I are running the Detroit Marathon in October 2013 in partnership with LifeChurch and Team World Vision.
October 20, 2013 to be exact. So, as of this posting we have 10 months and 13 days to prepare...and fundraise.
You're probably thinking, "Kori is running a marathon? LOL". And I am laughing right along with you...in disbelief that I feel this great pull to run TWENTY SIX (point) TWO miles when just last year I couldn't run around the block, and have really always dreaded running! However, it's not just any 26.2 miles, it's 26.2 miles to raise money for clean water in Africa.
I completed my first Half-Marathon in Detroit this past October, 2012. And it felt good, really good, that I set a goal and completed it. I told a few friends before the Half that I was running for Ava...because I wanted to be like that Dad who pushes his son in a wheelchair - marathon after marathon...if Ava could never run one herself. Well, I'm sorry to say Ava (or maybe happy to say), but you are going to have to run a marathon yourself because Mommy is never pushing anything or anyone in a race! Now, something was missing from my running.
What was missing? Running for something bigger than myself. That's why I've opted to run with my fellow runners at LifeChurch for Team World Vision, and am asking Bill to do the same. I watched this video after I went for a run and was guzzling water. This video opened my eyes to the reality that I can turn on a faucet and give my children something to drink and not worry about where it will come from or if it is safe, but not all moms can do that. Can you imagine not being able to give your family this basic need?
If you've watched this video and are inspired to help or have been looking for ways to give back or to get in shape, then I challenge you and invite you to join our team. I've thought of a few ways that you can help:
1. Join our team and partner with us to commit to running a full marathon
Not only will you change the lives of many people in Africa, I guarantee that you will change your life as well
2. Donate to our team - Sponsor a mile
If you make a tax-deductible donation to sponsor a mile for me (Just $50 will give one person clean water for life!) then I will print your name to wear on my back during the race. If you can't run next to me (or in front of me!) then at least you will be running with me in spirit and help me through each mile. You can donate in any amount
3. Volunteer to watch my kids or another runner's small children
Especially during our long Saturday runs. Even if you aren't out there running, you are helping other runners fulfill their mission
ANYONE can finish a marathon. I promise that you can do this and we will help you along the way. Take the first step - it's the hardest - email or call me for more details about how to join our team and then get out there and run!!
Thank you for reading this blog message and for supporting our family every day and especially in our endeavor to inspire ourselves and others to continually grow physically, emotionally, and spiritually.
And for more inspiration - here are our little runners who are working on completing 26.2 miles between now and April 2013
9 months since our last post...maybe we're not as good at this blogging thing as we thought! You might think that we are back after 9 months to announce the birth of a 4th child since that seems to be our track record.
New post = New baby, but we are NOT!
Here is what's happened in the last 9 months with a few pictures:
October meant Halloween and the kids dressed up as Spiderman, a Princess, and a Michigan Cheerleader. They had a lot of fun at various events and trick-or-treating through Grandma and Papa's neighborhood.
November brought Turkey Day and a yummy dinner at Aunt Lee's house.
In December Mason turned 4 and had a bouncy house party and a lot of fun. We celebrated Daddy's birthday too and, of course, Christmas and New Year's Eve.
January...was January...and something fun probably happened, but we can't remember, so here is a cute picture of Maddi and Ava.
In February, Ava turned 1 and spent some time in the hospital recovering from RSV. She also transitioned to a blenderized diet and is no longer eating any kind of formula through her tube and is only "eating" real food that mom and dad blend in our high-tech blender. Mason and Maddi went sledding with some friends and had a blast.
March saw the arrival of Ava's first tooth (but, no good pictures of it).
In April, Maddi turned 3 and had a gymnastics party complete with a Hello Kitty theme and a Hello Kitty cake that mom made all by herself along with ice cream cone cupcakes. Mom somehow left the frosting tip in the sink and it got eaten by the disposal so April also brought a new garbage disposal into our house! We celebrated Easter with some new baskets for Maddi and Ava which were MUCH larger than mom thought they would be, so that means Mason will get a new one next year. The kids went on several egg hunts with both friends and family and collected more than enough candy and toys. Mason started T-ball with dad as one of his coaches and mom ran her first 5K race and the kids completed their first 1K.
In May we celebrated Mother's Day at Kensington park and had a wonderful picnic and saw some cute baby pigs. The adults seemed to enjoy the baby pigs more than the kids - they enjoyed the cute Kids' Cottage and wooden truck. Ava participated in the Mott radio-a-thon and was a featured story on the mott blog! Check it out here: Ava's Story. She also met Mike Hart. Mason and Mom went to Arizona over Memorial Day weekend to visit our new cousin, Sylvia Lucille Button, and Mya, Liam, Aunt Katie, and Uncle Chad. We had so much fun and Mason loved riding on the airplane and was a well-behaved little boy. We fit a year's worth of fun into 4 days - how awesome are we?!
Thus far in June, the kids spent the night at Grandma and Papa's with Aunt Lee (or as Maddi says, Aunt Yee) and went to the beach and water park -they had a FANTASTIC time and we will return to spend Father's Day and our 6 year Anniversary there.
What's Coming Up?!
Well, this month we are finishing up tball and gymnastics for Mason who will start swimming next week. Maddi has opted to continue with gymnastics through the summer instead of swimming. Ava is currently sitting very well (with just a little stability help) and can reach for toys without flopping over. We can carry her on our hips and she is laughing and smiling all the time. She still has 2 teeth on the bottom and we expect more...someday. She is in follow-up mode with most of her doctors and has completed her first MRI and bronch wash. Nothing major out of those results so we are still in the wait-and-see approach to what she will do. A gait trainer is on order for her to use at home. It will be a little purple deluxe walker to help her start to stand and push herself forward. She's super cute in it even if she's crying and we will post pics as soon as we can get it. Her Early On therapy at home is on hiatus for the summer so we are looking forward to enjoying a slower-paced summer.
We hope everyone is doing well and we look forward to doing more regular updates!
Ava has been grabbing her toes and rolling to her right side for a few weeks. She has been getting physical therapy help on Monday's and Wednesday's most weeks. This past Monday her PT had her roll down a big foam wedge, much to mom's shock and fear, but she did it twice with flying colors. On Tuesday, she went back to pediatric surgery to remove the PEG tube (that stuck out of her belly pretty far in a loop shape) and replace it with a button (a tube that is more flush to her belly). On Tuesday night, she did something similar to this:
These were taken on Thursday night. On Tuesday night she had scooted herself off of her blanket by 90 degrees and was laying flat on her belly (her right arm had moved out from under her). I was in the kitchen and she started crying. I came in to find Maddi looking at Ava, who was in a completely different spot! Ava has just turned 7 months old - way to go Ava!!
Maddi has started a gymnastics class and absolutely loves it. We have very tall kids and Maddi is by far the tallest 2 year old in her class, but Daddy says she is also the best listener ;-).
This is Maddi on her way to her first class. She kept saying, "Mom, I excited".
Mason has also started a gymnastics class. He is in a class with 4 year old boys, even though he doesn't turn 4 until December, and is doing a great job. He listens to Coach Derek very well and Mom and Dad don't go to the actual class with him!
This is Mason before his first class. Since I couldn't go into the class with him I had to get a picture through the glass.
