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.

Visiting Amy in Minnesota

Lily and I got to take a plane ride to visit Amy and her new baby in Minnesota. Aside from losing one day in urgent care with Lily. . . we had a wonderful visit. Turns out Lily had strep throat and a bladder infection. :) Amy and Rudy were so nice to show me many of the sites and to take us out to eat etc. I also got to be there for little James' baby blessing which was very special. James is super handsome!! And Amy's girls were so sweet to be with. Aubrey even made my bed every morning. I wish we lived closer!!
Lily loves Micky and Minnie Mouse. So we borrowed Aubrey's Micky to keep her happy in the car as we drove around St. Paul.

New Beginnings

School is in session! I don't know if you have seen this commercial. It has always been a favorite.




I hate to admit it. . . but I felt like that guy when school was just about to start. So excited! I want to be that mom who hates to see their kids go off to school and misses them while they're gone etc. etc. The truth is, the summer was just a few too many parties for me. :) The kids were really getting on each others nerves, too. We all needed just a little bit of space. So far I have been loving the time with Jojo and Lily. I am also enjoying seeing the kids trying new things, learning and growing.

Here is Joseph on his first day of 3 yr old preschool (just two mornings a week).
He was so ready and is already loving it.

Eryn and Anna on their way to 1st and 3rd grade. Both are doing very well so far.

Lily is all fun these days and trying new words regularly.

Happy 10th Anniversary

Ten years and four kids later I am deeper in love now more than ever! Happy 10th Anniversary!

Trying out her first wheelchair!

We had Lily's wheelchair assessment at Shriner's a few weeks ago. It was so exciting to let her sit in the tiny trial chair and give it a try. Take a look!



On the subject of Lily's mobility. . .

As far as we can tell, Lily cannot feel or move her legs. She is 18 months old and doing so well. She is basically keeping up with her peers cognitively. But children her age are already running in circles around her. Joel and I want her to have more normal experiences, to be able to explore her world more freely and to be able to play outside. When she began pulling herself around on the floor we immediately saw an explosion in her language and development. We are convinced that mobility and independence is a huge key to her growth overall.

We have not given up on Lily's chances for walking with bracing. Although it may be slim chances, we will continue to work with her, preparing her for the opportunity. But, we refuse to let her development stall any longer. The bummer for us is that it will take until October 1st to get her chair. Who knew it took three months to get a wheelchair! Needless to say, we can not wait to get her in the little pink wheelchair we ordered. :)

Smith Family Reunion

Here are all of the Smith grandkids together at Bear Lake. We had a very relaxing time eating, playing games and visiting near the lake. Most activity happened outside in the sunshine, which was great! The water was cold, but the kids couldn't stay away from it. Lily even got to splash her hands in the water from a paddle boat.

Ammon, Mike's oldest and the oldest grandchild, just turned 18! I can't believe it. I remember holding him as a baby like it was yesterday. He's going to BYU Idaho in the Fall.

A Long Month of FUN!

After all of our medical drama, it was sure nice to take a long month break full of vacationing and fun. We started by pulling the girls out a little early from school and going to DISNEYLAND. This trip had been planned for a few months and over that time Anna and Eryn worked hard to earn their tickets by doing chores and practicing responsibility. Everyone had a really nice time. Joel's brother and sister and their families joined us for three of the four days which made everything more fun.
As soon as we got home we had a Family Reunion with all of Joel's immediate family.

The above pictures were taken in our backyard. It was great to capture Joel's entire family in one photo.

Following that reunion we went on to a very cold reunion with Joel's dad's family up in Heber. The weather was soooo cold and rainy that we could all see our breath when we talked. Everyone wore lots of extra layers and stayed indoors as much as possible.


We then went on to two more big family gatherings on my side. More pictures to come from my side of the family.

In the meantime everyone is pretty healthy and doing well. I am extremely happy to be back from one motel and four cabins and able to get a vacation from our vacation. :)