Monday, July 25, 2011

The Chair

Today was a big day!!

Toby got his first wheel chair a little before his second birthday.

Toby stopped using that chair at his third birthday.

Not because he needed a new one, but because he didnt need one at all.

It's been sitting in our garage collecting dust. (dont worry we will be donating it to a worthy cause)

But after over 2 years over no wheelchair. And after much discussion. We decided it was time for a chair again. Not because he's not still amazing us. Not because he doesnt prove doctors wrong all the time. Not because he isnt walking amazing well.

It was just time.

There comes a time when a 5 year old is just too big to be held. Too big to be put in a stroller. There comes a time when a 5 year old little boy wants desperately to keep up with all of his friends.
This is toby waiting for his chair.

This is toby trying desperately to get a glimpse of his chair when the door opened.

we've waited at least a couple months.

Toby slightly irritated because he was so excited then he wasnt allowed to wheel because adjustments needed to be handled first.

And then he got his chance. I couldnt get a picture of him not talking.

But then, if I ever doubted (which I did) If my stomach hurt on the way to the appointment wondering if we had made the right decision (which it did)

I think this picture tells it all....and doesnt make me doubt any more.

Pure and total satisfaction!!!

afterward we took a trip to walmart to grocery shop. I wanted him to have a chance to use it during an activity that would be appropriate. He was able to help in the store for the first time in years. He never tired and he loved every moment of it.

I have no doubt we made the right decision.


ps He will STILL be walking. We will STILL be pushing. The chair will be used only for certain circumstances with lots of rules surronding it. : )


Cynthia said...

What a great opportunity for him. Just another way to get around. You are a great mommy!

Anonymous said...

Awesome! I am curious - what are the rules for using the chair? my guy is just 1.5 years old and I foresee us in the same situation.

Cassie said...

Love the new ride! What a great color too!

Our family said...

Cool wheels!

Cathy said...

I somehow landed on your blog and your post reminded me of a little girl my daughter was friends with in grade school. Amanda has SB and was using both crutches, AFOs and her wheelchair when they met in kindergarten. Amanda was forever dropping both and cruising around the halls. Her mom and I became friends and Amanda joined my daughter's scout troop. She did everything the other girls did. I frequently picked her up from school and was skilled at tossing the wheelchair into the van. Amanda stayed over several times and would cath herself as needed. I never treated her differently than the others except to caution her when she got a bit too brave.
I haven't seen her in about 10 yrs as they moved, but recently I saw her name on the dean's list at a nearby college.
She was a fun friend to know.
Thanks for stirring up a good memory.
Cathy, a total stranger

Martina said...

Hi,your blog is so intersting!

I`m a single mother of a 9 year old son. Since he was hit by a car three years ago, he is wheelchair bound.

We look forward to new posts.

Toby looks so cute in his new wheelchair!

All the best wishes

Martina + Tristan

Colleen W said...

I just stumbled upon your blog today...and I can't tell you how much this post has helped me! My son Corey is 6, he has SB L5-S1. He has been walking independantly (just ankle braces) since he was 2. But he's had a rough rough summer. He had a bladder aug, and then adhesions formed to the scar tissue which lead to a bowel obstruction which perforated. The end result was 26 days in the hospital. 26 days where he was not moving much. 26 days of his muscles shrinking.

And now we are 2 weeks away from the start of first grade and we are in the process of getting him his first wheelchair. I am not proud of the fact that it was upsetting to me. But it is such a huge change.

But your post is so right on. This is the RIGHT decision for Corey right now. And it does not mean he won't keep walking. It will give him the help he needs to get around school with his peers with dignity!!

Thank you for helping me see that :)

C. S. Beyer said...

Hi Kari,

I stumbled upon your blog, and reading a few of the entries has given me a very meaningful inside perspective about having a child affected by spina bifida. I am inspired by your courage and touched by the pictures of your family that I had to reach out. My name is Courtney Beyer, and I am the new Study Coordinator at VitaPath Genetics. Earlier this year, we successfully completed the first phase of our landmark study looking at the genetic factors contributing to spina bifida. In conjunction with our academic collaborators at Children’s Hospital Oakland Research Institute (CHORI), Stanford, UC Berkeley and UCSF, we recruited over 1,000 women and their child affected by spina bifida to participate.

Our first phase produced promising results but, we believe that it is appropriate for us to replicate this study in a second, independent group of mothers. We are beginning our second study in early January and are reaching out to more mothers to participate. In order to reach as many women as possible, I would very much appreciate if you could include news about the study in your blog. I also have banners and buttons if you would like to post something on your site. In addition it would be great to connect with you via facebook (search SB Genetics) and twitter @sbgenetics.

I would like to get in contact with you to share more information and answer any questions that you may have. Please email me at and visit This website gives an in depth explanation of the study as well as a link if you are interested in enrolling. Thank you for taking the time to read my note and I am greatly looking forward to being in contact.

Warmest regards and happy holidays,

Courtney said...

Courtney, I read about this from another blog and went to the link and found that you recruited I think over 8000 people for this, that is FANTASTIC! When do you think the results will come out?