Wednesday, December 20, 2006

Full Tilt II-The Wheels are in!

Post Description: The post showcases the new wheelchair and is a follow up to the "Full Tilt" post, which was originally posted in late March, and is posted below. In that post, I describe how the excitement for the new wheelchair was quickly diminished with the realization that Dear Son will never walk again.

In late March I met with the wheelchair vendor to order Dear Son's "new" wheelchair. We accepted delivery around Thanksgiving. I've had a few weeks to test out the new chair and overall, it's been great! As you can see from the photo, it's quite large, more like a Hummer wheelchair. This wheelchair is manufactured by Gunnell, Inc. and the model is the "Rehab TNT". As in any wheelchairs, there has been a lot of modifications added for Dear Son.

The new chair fits Dear Son much better and offers the "tilt" feature he needs which allows for better positioning and better head control since it can be tilted back to support him. The manufacturer was gracious and made some accomodations to the frame to allow me to lift it into the car a little easier.

Some of the features that work well for Dear Son are:

1) The oversize headrest-With his previous wheelchair, his head would often fall behind the headrest due to his lack of support and lack of control. With the new one, it's impossible for his head to slip behind.

2) The arm rests-The arm rests are wide enough to support Dear Son's arms and give him some leverage. While he has no real use of his hands or arms, placing them on the arm rests help support him better.

3) The calf supports-Previously, his feet would fall behind the foot rests and drag on the ground or get caught up in the wheels. Most of the time, it was because he didn't want to be in the chair any longer. Sometimes, it was because he didn't have much control. While certainly, I could strap his feet in the chair, I have always preferred to allow Dear Son the freedom to be able to move his feet and be comfortable.

Some of the features I would like to see are:

1) Instructions on how to assemble and disassemble the wheelchair-By the time most people are ready for a "tilt" chair, they typically have a wheelchair van. I can't afford one so I needed a wheelchair that I could take apart and put into my car. Gunnell, Inc. was one of the few manufacturers of "tilt" wheelchairs, if not the only one, that we could find that did that. On the down side, there weren't any instructions on how to take it apart and put it back together. While the vendor did show me how, I am not very good at putting things together. I have since written up my own instructions. Regardless of whether other people have a van, I am certain there will be times when a person needs to take the wheelchair apart, hence the instructions would be needed.

2) There are push pins that lock the seating mechanism to the frame and push pins to lock the back support into the frame. It can be difficult to remember which holes the pins need to lock into. My suggestion would be to color code the push pins and color code the appropriate holes so all that would be required is to match up the colors.

In case you missed it, here is the original post.


"Full Tilt"

I was very excited all week. Friday would be the day that the wheelchair vendor would show us the new “tilt” wheelchair. The problem we had, was finding an “adult” tilt wheelchair that could be taken apart easily and transported in the trunk of my car, versus taking it in a wheelchair van which I neither had nor could afford. The wheelchair vendor had found a manufacturer that had a chair that met these requirements. The manufacturer offered to send the chair via Next Day Air to the school so we could see it.

Every day, I spoke to Dear Son on how exciting it would be. The plan, was that the vendor would come to Dear Son’s school and meet with his Dad and I, along with the physical and occupational therapist, to discuss Dear Son’s needs. He would show us three chairs. Of particular interest, was one of the wheelchairs, which could be taken apart easily and transported in the trunk of my car. Dear Son neither smiled nor shared my excitement for the new chair. I explained to him how great it would be that we could continue our walks this summer and it would be more comfortable for him. But he never wavered and stared straight ahead.

The visit went well and the new chair was selected. Unfortunately, it wouldn’t be ready for months, due to insurance approval and all the customizations required. We were just finishing up when the physical therapist asked me about Dear Son’s gait trainer which was sitting in the school hallway. She explained to me that the school could no longer store his gait trainer and asked if I would like to donate it to the school’s Special Needs Program since Dear Son doesn’t use it anymore. “No”, I said quickly. I immediately dropped my head hoping she didn’t notice the flush in my face. She explained that I would need to pick it up and take it home as soon as possible because they no longer had room to store it. I looked up again and said, “O.K.”

Inside, I was dying. I was not prepared for this moment. The excitement of the new chair quickly vanished with the mention of the gait trainer. Dear Son had not used the gait trainer since early 2004, almost two years ago. Back then, Dear Son could walk on his knees but could walk on his feet with the aid of the gait trainer that he used daily at school. He was quite good in the gait trainer providing he had his AFOs (leg braces) on. He could actually run in it and the physical therapist always had to tell him to stop or slow down because he liked to run to the windows to look outside. He also liked to come to a “crashing” halt where he would bang into the window or wall and then grin with delight. He thought that was particularly funny. We had to make one of his IEP (Individual Education Plan) goals to listen and not run into the walls; they called this “planning”. There was a fine line between teaching him to be respectful of the property and containing his excitement of being mobile and able to walk. His turquoise blue eyes would light up like they were on fire and his face would glow. The image was quite striking against his nearly jet black hair. He was so proud to be able to walk; it was like he was a different man although he was only a boy at the time.

Dear Son wanted to walk more than anything for as long as I could remember. Of the three therapists-physical, occupational and speech, the physical therapist was always his favorite because they would work on walking. The other therapists at school used to get depressed because he was so excited to see the PT but never them. Dear Son endured endless physical therapy sessions and hated doing all the required exercises but loved it when the word “walk” would be mentioned. We had the hardest time finding a gait trainer initially because Dear Son has no use of his hands/arms so a traditional walker (gait trainer) would never work. The therapist finally located one with a torso strap and Dear Son was on his way.

I remember the first time I actually saw him walk in the gait trainer. He was about 8 years old I believe. It was the oddest thing because it was the first time he ever did anything on his own, without my help. I kept wanting to help him but I knew by the smile on his face that I needed to leave him alone and let him show me how he could do it. He was so proud.

After his multiple hospitalizations in 2004, Dear Son never walked again. Not only hasn’t he walked, he never stood up again, nor will he ever. It was last summer when his pediatric neurologist had “the talk” with me about Dear Son’s deterioration and explained that he had a degenerative condition related to his gene defect and that he was never coming back. I have learned to accept that but I was not prepared to deal with the gait trainer. Getting rid of the gait trainer, is admitting that Dear Son will never walk again. It means I will never see the fire in his eyes, the smile on his face or the glow when he runs to me in his gait trainer.

“No, I said.” “I will take it home”. So with a tear in my eye and a lump in my throat, I made arrangements to take it home.


Anonymous said...

I'm sorry that the wheelchair represents the end of an era for Dear Son but glad that the chair will make him more comfortable and things easier for you. I leave tomorrow for my "Dear Nephew"'s 18th birthday party -- a celebration for both him making it this far and the lifting of a huge financial burden on my brother as the state will now pick up his health insurance.


Anonymous said...

Dear DM...This post brought tears to my eyes, as do most of your posts. You have such a way with words. The reflection of your Christmas tree in the mirror made me think that you and DS deserve so many wonderful gifts under the tree rather that the tilt chair which you just recieved. You and your family are in my thoughts and prayers. You have made a beautiful home for DS and God chose you to be the mother that you are. You are a wonderful person. God Bless. Anonymous.

Dream Mom said...

Thank you both. Liz-Congratulations to your nephew on making it to his 18th birthday. I look forward to the day, when we do a better job as a society, at providing for our children's medical needs. Anon 2:15-Thank you for keeping us in your prayers and for your kind and beautiful words. As for wonderful gifts, I have the best one-spending another Christmas at home with my Dear Son.

Zoe said...

RE: color coding holes & pins, I have found nail polish to be a wonderful invention for tasks like this. It is cheap, comes in many colors and with a handy brush, plus it dries quickly. I'm sorry I can't offer you anything more helpful, I've been reading your blog for a while now and I now how difficult your day-to-day life must be. All the best in the new year.

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