Day #6 Lily's Wheelchair

Lily is almost two years old and a few weeks ago, she got her first wheelchair (see more pictures and video here). A lot of people (including some of her doctors) have expressed doubt as to the need for her to be in a wheelchair at such a young age. We can still carry her and push her in a stroller, so why bother? Joel and I have felt strongly that any kind of aid that would make Lily's quality of life better is worth pursuing and using. In my mind I compare it to my three year old using a stool to reach the sink in the bathroom. Yes, we could lift him up every time he needed to reach it, then one day he would be tall enough to reach it on his own. But why not give him a tool that will allow for him to be more independent now?

It only takes seeing her in the wheelchair one time to realize what a gift it is for her, even at this young age. Her personality really comes alive when she is in it, I think because she is able to feel more confident and capable. She also is able to have a new independence in new surroundings (like church, the mall etc.). All of these things, in my opinion give her an opportunity for more normal experiences and lead to more normal development.

I am grateful for Lily's wheelchair. Joel and I can't help but beam with pride as we follow her around and encourage her to explore in it.

**I'm sharing gratitude every day on my blog for one full year! Read about The Gratitude Project and join me! It's not too late. :)

BONUS: Watch Lily bowl. Isn't this so precious?

Day #5 Still trying to appreciate the snow. . .

I got up this morning and it had snowed . . . again. Hmmm. . . I am really going to have a hard time being grateful every day of the winter if I can't get over my dislike for snow.

In an effort to find a way to be grateful for the snow, I have been thinking about it all day. I got up and shoveled the snow, and I thought about it. I shoveled it from our front steps and then our driveway before the girls went off to school all bundled up in their boots and coats. The shoveling turned out to be great exercise; the first exercise I've gotten in a while. I felt grateful for that. I continued to think about it later in the day as I was running errands. I got out at the post office with my two little ones and helped Jojo hop over the snow in the parking lot. At Costco I parked as close as I could to avoid more slushy snow. Lily's hands still got wet and dirty from pushing her wheelchair in the parking lot. I went through the drive thru at Wallgreens, McDonalds and D.I. and felt grateful for the fact that there are so many drive-thrus in Utah (doesn't everywhere have a drive-thru here?). Then as I was on the road home a thought came to me, that has really made me feel sincere gratitude. I remembered a scripture from the New Testament:

Isaiah 1:18 ". . .though your sins be as scarlet, they shall be as white as snow. . ."

Wow. What a wonderful way to look at it. If the snow can be a reminder to me of the cleansing power of the atonement, then, I think I can make it through the winter okay. I am grateful that today I have been able to change my attitude and turn something I dread into something that can turn my heart to Jesus Christ, my Savior.

Day #4 Shelter

I took this photo almost two years ago on the day we were moving in. It just so happened to be a snowy day like today.

It's hard for me to feel grateful on a snowy day. . . But, today when I was praying over our Sunday dinner and I was thinking about the snow, I felt grateful for our warm shelter. Honestly, since we bought this home, I have felt grateful every day for the beautiful shelter it provides. I never imagined I would live in such a comfortable and spacious home. Looking at what we have I can't help but feel happy and grateful.

**I'm sharing gratitude every day on my blog for one full year! Read about The Gratitude Project and join me! It's not too late. :)

Day #3 Joel

This is an old picture, but a cute one of Joseph and Joel at the 2009 Fathers and Sons Campout.

Our son, Joseph has asthma. For him any kind of a cold can throw him into a two or three week "episode" where he coughs and really struggles to breathe. Usually at night it gets worse. Last night was one of those nights. Joel and I have learned to recognize the sound of that scary cough in the middle of the night that needs attention, and we heard it. It's all a little bit of a blur to me, because I got to stay asleep, but Joel got up and took care of it. He gave him his puffer, laid down with him, and helped him get comfortable. This is typical for Joel. I don't let him do all of the hard work, believe me. But Joel has never hesitated to really pitch in and help with the kids.

I am so grateful for Joel. I count him as one of the greatest blessings in my life and I am thankful that I have him as my eternal partner.

**I'm sharing gratitude every day on my blog for one full year! Read about The Gratitude Project and join me! It's not too late. :)

Day #2: The Place I Grew Up

Areal view of Laie, Hawaii

Laie, Hawaii Temple

Chinaman's Hat

BYU Hawaii

These pictures could be enough to explain why I will forever be grateful for the beautiful place I grew up. I just want to share I few thoughts on the subject.

When I served my mission in Guatemala, I became very aware that the world is a big place. People I came into contact with there were in difficult circumstances: poverty, lack of good medical care, low education, etc. Many people would say to me, "You are lucky. You're from America. You're rich." That bothered me a lot. I never saw myself as "rich." But over time, as I thought about it, I realized that I was. I had running water, heated water, a beautiful home, a complete education, good medical care and so on. I loved the people of Guatemala so much and saw them as equal in the the eyes of the Lord. So, I asked myself, why was I so blessed to be placed where I was? It was then that I realized the blessings that were right in front of me that I took for granted all my life. It was then that I took my happy childhood in a beautiful, safe, carefree place as one of my greatest blessings in life.

Laie and Hawaii and BYUH have all become stores of memories and beautiful places I can go back to in my mind during difficult times. In fact I remember as a missionary closing my eyes at night after a long, hard day, and imagining myself walking up or down the path to BYUH with the palm trees swaying and the trade-winds blowing. It was not because I was homesick. It was a comfort to me. And to this day I can still feel the wind on my face, smell the air and hear the sounds as I would walk down that pathway.

On a final note. I was determined to raise my own children there in Laie and if not Laie, in Hawaii. But it was not meant to be for our family (which has ultimately been another blessing in disguise). One thing I have come to on this subject is this. Instead of feeling sad or bitter about not being able to raise my children there. I can feel a great measure of gratitude for the fact that I had so many years there. This brings me great joy and happiness.

The Gratitude Project: 365 Days of Gratitude

I have been thinking a lot about gratitude since this last General Conference. Our prophet, Thomas S. Monson gave an inspiring message about the virtue of gratitude. One part of his message has really stuck with me. He shared that:

“feeling gratitude and not expressing it is like wrapping a present and not giving it.”

He also said:
"Do material possessions make us happy and grateful? Perhaps momentarily. However, those things which provide deep and lasting happiness and gratitude are the things which money cannot buy: our families, the gospel, good friends, our health, our abilities, the love we receive from those around us. Unfortunately, these are some of the things we allow ourselves to take for granted."

I testify that Thomas Monson is our prophet today. So, in an effort to follow his teachings in my own way, I would like to use my blog as a place to express gratitude for one full year. I am calling it "The Gratitude Project." I am committing to express gratitude for one thing (big or small) every day. If I am unable to get to my computer, I will write it on a piece of paper, then transfer it to the blog at the next soonest date. Any of you are welcome to join me in this project. If only for one day, I think it would be a worthwhile effort.

TODAY will be DAY #1

Growing up, my family had the tradition at Thanksgiving to write a note to one person we were especially grateful for that year. I have kept this tradition and have always enjoyed the opportunity to reflect on who I am grateful for in my life. This year the list could be a very long one. So, despite the fact that I could thank everyone, if I must choose one person it would be Eryn's Nurse Practitioner, Ann Marie Hannon (I have written her a personal note as well).

Many of you know the difficulties Eryn had at the end of last year, going on into the spring. She had multiple health problems occurring at the same time, including (just to name a few): bloody stool, urine retention, wetting issues, kidney disease and painful urination (for a long time). We had been seeing a doctor in the Pediatric Urology office at Primary Children's off and on for a year prior. He was very good, but the minute we were handed over to the Nurse Practitioner, Eryn's care completely changed. Ann Marie gave professional care with KINDNESS and COMPASSION. She reached out to Eryn in very personal ways. She came in early so Eryn didn't have to miss school and stayed through lunch hours and after hours trying to work with her on learning how to cath herself. She listened to me cry more than once. She also sent us to the emergency room and to another specialist at very critical times which helped us discover the two other layers to her deteriorating health. And ultimately she helped the other doctors come to the realization that Eryn needed surgery. That surgery to create the catheter "port" in her belly has made ALL the difference. Thank you Ann Marie! You are a hero for our family.

Happy Thanksgiving to all of you who read my blog. Thank you for taking the time to read and to keep up. It means a lot to me.

She Has Wheels!

After many long months of waiting, Lily finally has her wheelchair!!! Joel was unable to be there with us at Shriners because he had to be in Colorado for work. So. . . Lila was nice enough to come and give us some support for the big day.

The appointment lasted over two hours. Most of the time was spent getting her chair to fit her little body perfectly: the seat, the footrest, the buckles and belts, the wheel position etc. The wheelchair guys said that everything on her chair is as "mini" as it can go. We had to give her a lolly-pop to keep her happy while the experts got her fitted in the chair. Once we got everything in the perfect position, we let her take the chair out to the play area for some fun. I fully expected her to immediately do well at moving around. But I didn't expect her to move so freely and quickly. I have to admit that I surprised myself when I burst into tears seeing her really move for the first time. What a huge blessing it is for Lily to have this wheelchair at such a young age. This is only going to give her more opportunities for growth! Once the wheelchair specialists were pleased with how she looked in it, I got to learn how to adjust the chair for her and take the whole thing apart. Finally we were able to take it home.

Since coming home she has already used her wheelchair out and about in the neighborhood, to nursery, playing at Chuck E. Cheeze and the mall. It has been very exciting to see her move so well in her chair. She is obviously loving her new mobility and freedom. In fact, since getting the chair, we are noticing a more spunky side to her personality. She threw a total fit in the mall when we had to leave a store that she liked and kept trying to back her chair up into the store again. I could not overpower the strength of her arm hold on the tires. So I had to resort to chocolate to persuade her to let me push her out of the mall. I love that she has the ability to exert her independence. I guess this just means I am going to have to stock my purse with a lot more chocolate!!!

I hope that the multiple videos aren't too many. They are all very short. Each one is of Lily at Shriners.

Lily's AMAZING Therapists

Lily has three different people who come to our home and work with her.

Her wonderful Occupational Therapist was featured in a video in the last post. He began working with Lily when she was struggling with eating. At 9 mos. she could not eat any foods with texture and she gagged on everything. Her O.T. came into our house regularly and observed her eating, then trained me how to work her up to a variety of foods through lots of little techniques and ideas. Once she was doing well with her eating we moved into working on her trunk (waist-up) strength. He likes to get her reaching up high to strengthen her lower trunk muscles (whatever is wired to work). Some muscles on one side may work more than on the other, but Joel and I are determined to make every working muscle as "buff" as possible. :)

A woman also comes in to the house regularly and does physical therapy. She has exercised a great deal of ingenuity and patience as she has worked with Lily since she was three months old. She has helped her to be able to roll over, sit up and ultimately crawl. We are grateful for her experience and persistence. I can't believe we don't have a picture of her!!

Another fantastic person Lily works with is Mike. He is the physical therapist everyone consults with at the Spina Bifida Clinic. We liked working with him so much, that we have begun to work with him privately. Mike is a positive, happy and upbeat person. We feel that he brings the right balance between reaching for the stars and making realistic goals. This summer Mike met us at the park a few times to teach us how to get her actively moving on the play equipment. He also taught me how to support her and how to properly put her down the slide (so she doesn't break a leg).

Check out a short video with Mike at the park. He taught her how to use the big holes in the equipment floor to put her fingers through and pull herself easier.



Mike has also created his own piece of equipment we like to call the Kangaroo. It is basically a trainer for using a rolling walker. The idea for using the Kangaroo is that someone like Lily (who has no natural way to learn the walking motion) could learn how to move herself around by the sheer force of her upper body and arms. In the future we would add bracing to her legs and feet and take off the top portion. At that point she would already understand how to move herself around. We have a long road ahead of us in the walking department, mostly because she just needs to get bigger, smarter and stronger, but we think the Mike is going to help us get her there.



Take a look at Mike's website.

Lily has also been training for a wheelchair on this little cart. A friend passed it on to us after their daughter didn't need it anymore. Her pink wheelchair officially comes home from Shriners on Thursday!

Updates on Lily

Lily has been doing so wonderfully lately. So I thought I would share details of what she has been up to.

She loves going outside. She has especially loved my sister's sandbox.

She still goes to Lila's once a week and LOVES it! Lila is a sister in the ward who has been taking care of her for a few hours once a week since she was three months old. Lila teaches her words, reads books, takes her on walks and simply holds her and loves her. It has been a very sweet relationship.
Sometimes we have to come up with different ways of doing things. . . but. . . it all works out.

This is my least favorite position she gets herself into. Her legs look completely backwards. I try to catch her when she does this and re-position her.

Toilet paper unrolled all over the floor is a celebration for us! We love it that she can be naughty and get into things.





She is crawling really well and can get all over the house.



This video is of Lily working with her Occupational Therapist, Joel. We enjoy working with him. I thought it would be fun to see how she handles herself sitting and playing. She always has to kind of hold herself up with her hands.

I have a few more pictures and videos to upload, but maybe tomorrow. . . :) Lily's wheelchair may finally come this Friday. There has been a delay because of a defective part. We will definitely post pictures as soon as we get it.

It's Official: I'm a Soccer Mom

This fall we signed-up Joseph for 3-year-old soccer. My sister talked me into signing him up, knowing it would be hilarious to watch. She was right. Joseph was the kid who stood on the field, watching the others pass him by. He also sat on the field, picked the grass, bit his shirt, hugged friends on his team and sometimes chased the kids who were kicking the ball. I have never laughed so hard. It was so funny to watch him. Believe it or not, he loved going to soccer and was pretty proud of himself following each game.