Tuesday, April 3, 2012

This Is How She Rolls...

I can remember holding my tiny baby girl in my arms, able to do just about anything while keeping her cradled. I enjoyed easily getting her in and out of the car, carrying her into places, and the ability to stand for long periods while holding her. After growing into a tall 7-year-old girl, I now find it very hard to just sit with her in my arms!

Elise didn’t go through the usual developmental stages that most moms and dads revel in. There were no Saturday afternoons spent propping her up against a Boppy to see how long she could hold a sitting position before toppling over. My boys each had distinctive ways that they would crawl across the floor to me as I called to them in a silly voice. Elise was never able to even begin this activity. We didn’t walk in with surprise to see her pulling up in her crib. Her arms, legs, neck, and body just couldn’t work together to achieve sitting, crawling, standing up, cruising, and so on.

During Elise’s first several years, she was easy enough to carry around. We bought a special needs stroller off of Ebay once she became too big for a baby stroller seat. She needed something to sit in like a stroller, but the regular ones that are sold at Babies R Us or Walmart didn’t even begin to offer enough support for her. So, the special stroller was the way to go. Having this as an option as opposed to having to carry her everywhere revolutionized our life. It wasn’t fancy, but it did the job!

Lane taking his sister on a walk in her umbrella stroller. It was Lane’s when he was younger, but never did support her enough. We only used it a few times.

This is The Cruiser from Convaid Inc. It worked very well for a stage in her life. We even used it periodically through the next year or so on and off depending on where we were going. It was just so easy to travel with and maneuver.

When Elise was 2-years-old, we ordered a more supportive “wheelchair-like” chair for her called a Kid Kart. This new purchase ushered us quickly into the “your kid is definitely disabled” category for the world to see. No matter. It is what it is, we couldn’t cover it up or disguise it. We were mainly just thankful for being able to own a chair that could comfortably seat Elise and get her around town with her family.

Kid Kart

The Kid Kart was great while it lasted -- which wasn’t long! By the time Elise was nearing 4, the headrest had completely snapped off due to the way Elise throws her head back and slams it into anything that she is resting on (such as the floor, a mat, my chest, and any headrest). This is normal behavior for Elise, and cannot be stopped, but only pacified at times. She was also growing like a weed, so a new chair was ordered.

In 2008, Elise received what we call the “Rolls Royce” of wheelchairs. It is called a Kids Rock. It has a shock system that allows her legs and torso to move as she moves. She isn’t stuck in one position, fighting against her straps. For a kid like Elise, who has spasticity, and major extensor patterning issues (she extends her back, neck, arms and legs in a way that could literally fracture a bone if kept too tightly in place). This chair has been our favorite, and has lasted the longest.

This is the Kids Rock. This is what we still have and will miss. It has worked pretty well for Elise. I have loved the shade, "tilt in space" mechanism, and adjustable handlebars.

Elise is, though, outgrowing this chair, and I am worried in anticipation of the switch that is to come with a brand new one. I know I will be sad to see her current chair go, almost as if a part of her will go with it. Yes, it is just metal, rubber, springs and screws, but it’s actually much more than that to me. Elise’s wheelchair becomes an extension of her. It almost shares her personhood. It is a must-have for us to take her to even the shortest of distances. That is why it is always a nerve-wracking process for me when it is time to move on to something new. Her chair has a personality of its own. I know it’s quirks; its ins and outs. It takes a while to get to know a new chair, and how to work all of the intricate details of each part and function. It will use her new headrest (which I’m not used to yet), a new hip stabilizing feature, and different supports. I do rest in the knowledge that her next one will be fabulous, and I will learn to love it.

Any time I get irritated at the fact that I have to wrangle a wheelchair in and out of the back of my van, squeeze it through door openings not meant for big, bulky chairs, and maneuver it through too-narrow aisles at the store, I have to stop myself and remember to have only thoughts of gratitude. I am grateful for the fact that my daughter even has the pleasure of sitting in something that totally supports her, gets her out and about in the world, and offers her everything her little body needs -- the comfort of padded seats, supportive belts, and a place to put stickers collected at the doctor’s office. Without this chair, Elise would not be the only one to suffer. Her whole family would be affected by being stuck at home without the ability to physically carry her around.

When I think about how much her wheelchairs have meant to her happiness as well as ours, I stop to thank God for where we live, our resources, and our accessibility to this life changing equipment.

Now, if only I had a wheelchair accesible van to put her wonderful wheelchair in…

One day, Ashley. One day!

Family picture in Kilgore, Tx at my 10 year high school reunion. She was chubby and bald for a lonnnng time. The Cruiser was perfect at that time. Lots of room to grow.

Elise in the Chicago airport on our way to ABR physical therapy. This was our easiest wheelchair for air travel.

The Cruiser was easy to decorate for Halloween!

Elise with her GiGi along at a doctor’s appointment. Her chunky little legs didn’t reach the foot plates, but that was ok for her development at the time. Now, footplates are a MUST!

When Elise had leg surgery, and was in full leg casts for 7 weeks, we sometimes used this stroller even though we had moved on to a different one at the time. It was easy to prop her legs up on a platform that Chris wedged into the chair’s seat. We had to be creative!!!

Just a close up of the chair and it’s straps for anyone who may be interested (special needs parents). It also collapsed VERY easily and fit anywhere an umbrella stroller would fit.

Kind of a funny picture of Miss Elise... She was still in her chubby with no hair stage... Anyway, this is the Kid Kart. It was much harder to get in and out of the car and travel with. I had to take it apart into 2 pieces. I didn’t have a van at the time, so I spent many frustrating outings trying to stuff it into my car’s trunk!

With all of her wheelchairs, I have attached her favorite texture toys to the vest or other straps. She definitely knows that they are there, and will pick them up to play with them. When she drops them, they don’t fall away, and she always knows where they are. (I really DIDN'T like the shade on this chair. It covered NOTHING!)

With the Kid Kart, I could take the seat off of the wheelchair base and put it on another lightweight base to be taken around more easily. We used this feature to save room while in the house.

You can see how she really grew into this chair. We also liked to used the tray for using switches.

Of course, my able-bodied child had to take his turn in Sissy’s cool chair. This is when Lane was about 4. He is 9 now, and I have to tell him to get out of her chair at least once a week!

This is her in the Kids Rock chair. We propped up Elise’s casted legs in her chair right after getting it. Looks pretty comfortable to me!

Accompanying Paw-Paw and Lane to school for Lane to go to Kindergarten.

This is Elise and Jackie working with a switch hooked up to her fan. We now do most switch work in Elise’s Rifton Chair. We find it much easier for her to work in.

Wheelchair Fashion Show!!!

I use the wheelchair to my advantage in order to get pics of her pretty outfits. Most pictures I get aren’t perfect, but it takes many tries to get one with her hands off of her face, her eyes open (unless she’s asleep), and with her not hitting herself!

We just got a new I2I headrest for her chair. We were having a very difficult time keeping her head on her headrest. She loved to bend it to the side and off of the headrest, getting her head stuck behind it. It was a major issue and very irritating to keep fixing her, so this one keeps her head in place. It kind of messes up my pics of her outfits, though.

Without her wonderful wheelchair, she couldn’t have joined her brothers and me on our 2 mile walk to Sonic for lunch during Spring Break. I love doing things with all 3 of my kids together when possible.

I love the stage that Ty is in right now. He is just tall enough to reach over and give his sister a kiss at his height. He is also the one who loves to take rides on her lap. Sadly, he will soon be too big to do this, but I hope he will always have memories of sharing the chair with Elise!

UPDATE:  This is Elise's "new" wheelchair.  We have had it for over a year now, and are finally adjusted to it!  Changing wheelchairs is always difficult for me.  It's like losing a part of your body and starting over with something new and unknown.   

In this chair, even more than in the last, she keeps her head and chin down more (due to her changing tone and personal behavior). 

We usually recline her to a point where she is more comfortable keeping her head back.  Her PT mentioned that it is usually better to keep her more upright whenever possible, so we sometimes use this chin rest pictured below for her, which works very well. 

Elise's wheelchair means a lot to her as well as to me.  I consider it her legs, and unconsciously become attached to it.  This is probably why I actually took pictures and shed a tear or two when we changed out this last time!


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  2. Hi there! Does Elise's chair have a reclining back as well as tilt in space? We find that our daughter has a much easier time holding her head up with the chair upright and the back reclined just a bit. With tilt in space only she tends to pull her head forward and down. I love the pink chair and your beautiful pictures!

    1. Hi! That is a great observation! As far as I know, her current chair doesn't have a recline option. Her old one did, I know, but I'm not sure we ever used it to help her head control. What you said makes total sense, and I'm going to see if there is any way we have overlooked a reclining option on her wheelchair. It is so true... when we use tilt in space, she just pulls her head forward and down, and it is so bad for her to do that! I hate it! I also don't love her chin rest (it's an eye sore), and would rather find a better option of keeping her head up. She doesn't completely lack the strength to hold it upright at an reclined angle, but she actively pulls it down. So frustrating! Thank you so much for the tip!