The Rollercoaster Ride Continues!

So, Sam and I took our first ride in the wheelchair taxi service to the YMCA so we could meet with Sam's kinesiotherapist, OT and personal trainer and come up with a rehab plan to get the big guy moving. Kinesiotherapy is the application of scientifically based exercise principles adapted to enhance the strength, endurance, and mobility of individuals with functional limitations or those requiring extended physical conditioning resulting from clinical or injury reasons. Sam was working with Rick Spenner and Anne Frazier before his diagnosis to help strengthen and expand his physical capabilities. Rick develops the plan and goals while Anne made exercise and reaching those goals fun for Sam. Wendy Orndorf has been Sam's OT since he was 6 weeks old, they have a solid relationship together. Wendy does aqua therapy and hippotherapy (therapy on horseback). Wendy uses the pool for intensity with Sam since he loves the water and the water is great resistance to help Sam strengthen and work on his form and tone. Both Anne and Wendy have learned to work effectively with Sam and he looks forward to seeing them. You can learn more about what Rick and Anne offer at www.kinesio-therapy.com and I would be happy to refer you directly to Wendy, just send me an email or leave a comment.

Each day out of the brace Sam is regaining some further movement but he still has a long way to go. Sam can sit up but tends to be a little wobbly, he can move his right leg fairly well but will only slide his left leg left or right. He is bending his left knee very little and can not lift or move the left leg forward or backward. He seems to be frightened or anxious to put either leg vertical and won't even weight bear on the right leg. We have some work ahead of us.

On Tuesday they delivered Sam's shower chair and walker. Sam was excited to take a real shower instead of having a sponge bath in bed as he has for the last seven weeks. I think sitting in the shower was like a little piece of heaven...well until we noticed how purple his feet and legs were becoming and decided it was time to get him back in bed to restore the circulation. Sam's low tone and surgery seems to be causing some pinching when he sits in an upright position. We need to get those muscles working again to help Sam maintain his leg circulation.

The doctor wrote out prescriptions for PT 2 times per week for 5 weeks and OT and Speech until he returns to work...so I'm thinking until he's 21...that works for me! I can't wait to deal with the insurance company on that one, Hee Hee. I didn't want to go to new therapists and I wanted a cohesive group that knows and understands Sam and would work together to get him moving as quickly and safely as possible.

The plan is to get Sam into the pool 3 times per week to start working on movement and weight bearing. Sam would also have 2 at home visits for PT and strength training along with gentle work on range of motion. This sounds like a great plan...hmmm...now to make it work.

For those of you that have not had to deal with mobility issues let me elaborate. Let's start with transfers. Transfers are the movement from one location to another, like bed to wheelchair, wheelchair to bed, wheelchair to car, wheelchair to shower...and so on.

Let's look at transferring Sam from the bed to the wheelchair. Sam is very low tone, so lifting Sam is the equivalent of lifting 106 lbs. of jello. I have been able to talk Sam into moving to the side of the bed and bringing his right leg over the edge, I then slowly move the left leg over, pull him forward, grab him around the middle, bend my knees as much as I can with the bed in front of me and then lift and pivot Sam to place him in his wheelchair. This is a lot of work and tough on the already ruptured discs in my back....so...enter the transfer board which was suggested to me by the driver of the taxi (it pays to network). The transfer board is used to transition from the bed, car, any surface to the wheelchair. Using a smooth frictionless board you are pulling less weight from one surface to the other instead of lifting. I like how it sounds and I will let you know how it works for Sam when it arrives early next week.

Jeff has been recruited for the transfer or carry to the shower and getting Sam outside of the house in the wheelchair. I now have a new appreciation for the term handicap accessible house. Our shower has a low lip and is a single shower. So picture putting a shower chair in this small shower, then lifting Sam from the middle of the bathroom, luckily we were able to get the wheelchair into our master bath and maneuvering to get two people through that narrow shower door and then trying to turn, pivot and place him gently on the chair. It was a sight to behold. Once we had Sam in the shower we had to monitor him to make sure he didn't slip down on the chair, we used a towel over the chair to give him a more comfortable and secure seat that we could pull up on if he began to slip. I had to laugh when Jeff finished putting Sam in the shower and then turned to me and said "Okay, now how are we going to get him out of there and dry him off?" Getting in was a challenge, now Jeff needed to pick up 106 lbs. of slippery, wet jello. I covered the wheelchair in towels and told Jeff to use another towel to wrap around Sam's mid section when he lifts. After a little bumping into the doorway and a few mumbled complaints Sam was back in the wheelchair drying off with another big smile on his face.

Getting out of the house is another dilemma. Our front and back entrances have steps and getting Sam outside in his wheelchair is work. I told Jeff about the rehab plan and the need to get Sam in and out of the house at least 6 times per week. Jeff quickly realized how that would put a damper on his work schedule and my guess is he and Ben will be building a ramp this weekend.

So let's consider a trip to the YMCA. I have to get Sam dressed in bed, get him out of bed and in the wheelchair, get Sam and the wheelchair outside and transfer him into the car, take the legs off the wheelchair, fold it and lift it into the trunk. Drive to the YMCA, lift the wheelchair out of the trunk and reattach the legs, transfer Sam into the wheel chair, check in, transfer Sam on to a changing table which will have to be covered with a towel or cleaned (let's not forget the germ and immune system issues), get him out of his clothes, into a swim suit, transfer him into a pool wheelchair and then have his PT/OT work with him in the pool. Now the return home, clean or cover the changing table, wheel him into the shower to get the chlorine off (don't want to dry out his skin). Good news is Jeff can loose the shower routine at night (it's good to be Jeff Mayer). Dry him off and transfer him onto the changing table and pull off the wet swimsuit. Apply his lotion, get him dressed, transferred to the wheelchair, out to the parking lot, transfer him into the car, take apart the wheel chair and load it, drive home, unload the wheelchair, put the legs back on, transfer Sam, wheel him up the ramp to the house and transfer him back into his bed. Add to this it is winter in Wisconsin. And this would be when Sue orders her caffe, mocha, vodka, valium latte and collapses on her new recliner.

Now take the above schedule times 3, add in 2 home PT visits, a homebound teacher coming in for 2 hours every day which is my house cleaning time and some time spent on Sam's NACD program.

Wouldn't it make more sense for the doctor to write us a prescription to a home in Florida with a pool for a month??? This would eliminate all the transferring, save my back, get Sam much needed Vitamin D to regrow bone, take away the winter germ/respiratory issues and remove all the other housework stressors. Oprah, where are you????

I'm thinking that one day I may leave the YMCA, jump on the highway and just keep heading south until I'm somewhere handicap accessible, warm and with a pool.

Now I haven't even gone into the fact that I have to convince the insurance company that aqua therapy with an OT and PT is medically necessary along with PT 2 other times per week. And I haven't even mentioned speech????

Sooooo.....while I wrap my mind around that schedule and the issues that come with it I have been also keeping a watch on Sam's thigh incision which has looked a little questionable. I finally took pictures and emailed them to his doctor who requested we come in. Yep, you guessed it, the whole schedule above now to get to the doctor. I gave Sam his Tylenol with Codeine since I would be transferring him to the car for the first time and it was later in the day so I wanted him to be comfortable. Sam has not taken Tylenol with Codeine before. In true Sam fashion, he had a reaction to the Tylenol with Codeine and proceeded to begin throwing up when we got into the doctor's office which led to a slight aspiration and some tense moments of listening to him struggle with his already questionable respiratory system. During a break in the throwing up his doctor was able to look at his thigh incision and determined it didn't look good and was showing signs of infection. Antibiotics and no pool therapy until the two divots close and heal. I won't even go into our issues with antibiotics...another time...another post.

Hmpf...I don't know if I should be relieved or frustrated....or both but most of all I feel bad for Sam who slept all the way home and through the night with me checking on his breathing. I know Sam wants to get moving too.

But in true Sam style he woke up this morning with a big smile and as always hungry. Yep, another day on this rollercoaster has begun! Have a great weekend!!!