Friday, January 07, 2011
Things are Looking Up!
Dear Son is really doing well. To date, I've managed to keep him totally well during the pneumonia season. Next week will be five months since he's been in the hospital! Five months! I credit most of it to Now Foods Organic Virgin Coconut Oil since it really gets rid of any congestion and/or stops any respiratory virus right away. I increase the dose as soon as I hear any congestion, sneeze, cough, etc and it works! I've also been doing his nebulizer every day. As you are aware, keeping a normal person well is one thing but keeping a person who is chronically ill and immobile is a whole different ballgame.
A few weeks back he started moving his left toe and left foot again. Not often, but once in a while. He lost his ability to move his feet and legs after he was hospitalized and on a ventilator last November. I did months of therapy to try to help him regain his movement but nothing seemed to work. The doctors wrote it off to his progressive neurological disease and I didn't suspect things would change. Well, around Christmas time, things started to change. One day, he moved his foot a bit to rock the recliner and another day he lifted his entire left foot off the ground and tried to kick an ornament off the tree. He was so excited. He really enjoyed doing that or at least getting a reaction from me. I wasn't sure if I should jump for joy or tell him not to, lol. Well, he did it another day and then I took the tree down on December 27th so he proceeded to try his trick over at his Grandma's house. Then this week, he was able to move his feet enough to not only rock the recliner but to turn it all the way around. He turned it half way around to watch me cook in the kitchen (he loves cooking). Then he turned it around to look out the window. Then he tried kicking the living room drapes, lol. Anyway, he was doing quite well and starting to move his leg and foot a few days this week.
Today he went to school and did a great job. They sat him in a rocking chair and he rocked for 30 minutes. He listened to music and looked out the window. He was really happy. The teachers and aides at school all commented on how great he looked. Later, he helped cook hamburgers and joined in a lunch picnic (indoor) at school of burgers, chips and potato salad all made by the students in his classroom. Typically, they gather the students around the table for cooking and then talk through everything they are going to do. Sometimes, they'll have Dear Son help by doing hand over hand for stirring (he likes stirring) but most of the time, he just likes being part of it all. Of course, he likes when it gets a little messy, unlike his mother. It seems ironic that he would enjoy cooking so much since he eats via a gtube however he enjoyed cooking in class long before he went to gtube feedings.
So this is quite a wonderful turn of events. Overall, Dear Son has been very happy lately. He still sleeps a lot and has occasional seizures, but overall, he is regaining some strength and some movement in his legs/feet. I still do not see any movement of his right leg/foot but the left one is moving. That was always the leg/foot that he used for all movement.
The biggest issue over the last few months is still the large volume of work it takes on a daily basis to keep him healthy and functioning well, everything from nebulizer treatments, daily leg/foot massages, general grooming, meds every six hours, all tube feedings and moving him and keeping him aligned so he doesn't get any pressure sores. And while I certainly can't predict that he'll never be sick, I will consider it a huge accomplishment if I can keep him out of the hospital for any/all respiratory conditions. My 2011 New Year's Goal is to try to get him through 12 months without any respiratory hospitalizations. But to have him happy and doing well is the absolute best!
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