Little Paul has flaccid quadriplegia Cerebral Palsy. He is actually 8 but has had stunted growth. He has virtually NO tone, cannot control his head, nor can he sit up or move on his own. He can move his arms but not with much control. He needs all his food mashed because he cannot chew and struggles to swallow. Paul's life has been spent primarily in the crib except for feeding when he is held in a reclined position to allow him to swallow. He is fully dependent on others for everything.
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| The amazing hand made knife |
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| Cuts like a dream! |
He is such a sweet boy, always smiling and is quite handsome. Patricia had made a plaster seat for him and put in in a stroller to get him out of bed when she first started volunteering here (she spent 5-6 months before I arrived). Unfortunately, without follow through and training, Paul was back to the bed.
The plaster cast no longer fit him by the time I arrived and funds are still being requested for a special wheelchair. This is a loooong process.
I had been seeing him for sitting balance. It took all of my arms and legs to hold him because though he had no tone his arms and legs would flail around and he would have sudden strong extension spasticity (which is why he could not be positioned in a chair with pillows...he would slide right out without warning). He was certainly a challenge. Over time, he started getting stronger and his tone started to reduce enough to allow me to sit him next to me on a bed with full support. Still no head control.
Paul developed an upper respiratory infection keeping him in bed for several days. He has NO FAT or muscle and ended up with a sacral and lower spine bed sore. Without intervention, this would progress rapidly. I went out to the foam store, bargained for foam. I realized I had no way to cut it so I asked the guy where he got his long knife. Turns out he makes it out of a long piece of metal...It looked like a long saw. I didn't think it would work but WOW! It works like a dream!
I cut blocks of foam and was able to position this wiggle worm on his side and keep him there! I trained the matrons and they repositioned him every 2 hours. I asked that his protein intake increase (more beans). Paul is quite skinny, but this little guy eats a full plate of food for each meal! Douglass managed the rest. We were able to get his skin healed in 5 days from 3 stage II decubs. It worked!
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| Paul even liked it! |
Despite this, I felt so bad for Paul that I had focused on all the other kids. I wanted to get him up but a special wheelchair (unless I purchased one) was out of the question any time soon. I had Sister Anna get me some large tubs for bathing Paul and another boy since it was hard to do in the big shower with no support. She got a large round tub. I didn't think it would work for bathing due to his extension tone but was doing a "dry run" and trying to figure out if I could get him safely stable for bathing with blankets.
He was soo tucked in with wedges and blankets, there would be no way to bathe him...BUT as I stood there looking at him, I realized that he was smiling, the other kids were coming up to the tub to interact with him, rock the tub making him laugh. HMMM...maybe, just maybe.....Turns out this is our new temporary wheelchair! It worked! I had tried several strollers and chairs before which did not work at all. This worked beautiful.
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| Paul with his crowd |
We started Paul sitting outside with the other kids...he laughed and smiled and even cried when we tried to put him back to bed. Granted, his head is an issue and tends to flop around too much, BUT he loves it and he is getting stronger...he is even making noises!
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| Fred with Paul |
I invited Patricia to come to help me figure out what I am missing and train me in how to manage some of the kids. She had been busy up until now, so one Saturday she showed up with yogurt in hand as a surprise for the kids. They all screamed and ran to her, remembering her from before! It was a fun reunion. She taught me a great deal, gave me hints and recommendations for the kids. I don't know what I would do without her help! It was a great day and the kids are still talking about her. I am not surprised, she has a HUGE heart!
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| Patricia treating Paul to strawberry yogurt! YUM! |
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| Abed with a yogurt mustache |
THANK YOU PATRICIA!
ANY PEDIATRIC PT or OT INTERESTED IN VOLUNTEERING, WE CAN USE YOUR HELP! PAYMENT WILL BE IN MORE HUGS AND LOVE THAN YOU CAN HOLD!
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