Missing in action…
July 5, 2007 | Updates
Wow, is your summer as crazy as ours has been? We’re all doing well, just constantly on the go. After our trip to Washington, we came back to a lot of work and a lot of doctor appointments. The first day back, I took Samuel to his 4-year checkup and Nathan to his 1-year checkup. They both had to get shots and Nathan measured on the charts as tall and skinny while Samuel came out in the 15 percentile for both height and weight. Nathan cried through his shots. Samuel just got a little mad. And the greatest thing was when the doctor checked Samuel’s hips and joints, just like he does with every little kid. and he got this great surprised look on his face like he couldn’t believe Samuel didn’t have any problems there. I explained to him about hyperbarics and it only took a few minutes to convince him how much it has helped Samuel. That was pretty fun!
A few days later, we went to Salt Lake for another pump decrease. We are now down to about 275 micrograms a day and I am getting excited as I can see in the future the day that we will be down to nothing at all. We also had an appointment with the spasticity team at Primary Children’s. They hadn’t seen Samuel since just before we left the hospital in October of 2005. They were impressed to say the least. They had discharged from the hospital a miserable, suffering little boy who seemed to have no chance at ever responding to us or enjoying life. The boy they met this time was smiling and sociable and comfortable and happy. They were amazed. They were also amazed at the reduction in the tone in his body. They measured each joint on a scale from 1 to 5 with 1 being low tone and no loss of range of motion and 5 being high tone and severe loss of range of motion. They began with his legs by measuring his ankes and knees and hips and adductors, etc. One therapist would measure while the other one would write down the results. The measuring therapist kept saying, “One, one, one, one…” They were so amazed to see no problems from tone in Samuel’s legs - especially because they remembered what he was like in the beginning.
Then they moved to his arms. This time they switched jobs and the new therapist began saying, “One, one, one…” Then she stopped and asked why the other lady wasn’t writing her findings down. That therapist said, “I already did. I can tell they’re all ones just by looking at him!” The first therapist laughed and said, “You don’t want to wait for my ‘official’ findings?!” It was cute and funny and I could tell they were a bit dumb founded.
In the end, they asked me if I could go back, would I put the baclofen pump in again. I told them I would because I think it was a good thing at the time. But that I only think that because it gave us time to let the hyperbaric treatments have a positive effect on him. I think the baclofen helped keep his range of motion while the hyperbaric treatments worked their magic on his brain. And now that hyperbarics has had such a profound effect on him, I’m looking to get rid of the pump. And when I was done, my rehab doctor turned around to face us and told us she agreed. She said she didn’t know what else they could have done for Samuel in the hospital at that time and that the pump bought him some time. But she also said that hyperbarics clearly made a huge difference for Samuel and had a very positive effect with him. WOW! Two doctors in one week who agreed with us. That’s why this site is entitled “Samuel’s Miracle” because he is a miracle in so many ways. And one thing he is doing is changing the mind set of some of his doctors so they are more tolerant of things out there that might not be “proven” but do work!
Otherwise, we’ve just been really busy. We have been moving our offices and our production line to new buildings and that has taken a ton of time for all of us. And we spent several days camping up Logan Canyon. Samuel, Nathan and I even slept up the canyon in our motor home for a few nights and it went pretty well. Samuel is attending summer school and having a good time there. I guess the thing we are doing the least of is therapy. But we are doing all that we can fit in and I guess I figure the rest of us take a bit of break in the summer, so why not him. We’re all just enjoying the nice warm weather and the chance to be out and about as much as we can. Samuel even enjoyed the fireworks with us last night on our back lawn. He liked the lights, but not the noise so much. He would close his eyes whenever they were too loud. It was pretty cute!
I sure am blessed to have such beautiful boys! Hope everyone is having a fun summer, too! Keep praying.
Love,
The Jewkes
RSS feed for comments on this post.
TrackBack URI
July 8th, 2007 at 8:57 pm, Natalie Says:
It is always so great to read your posts and track Samuel’s progress. I definitely agree that he is a miracle. I remember when I first met him and he was in a continual arch and just so unhappy. I am just so happy to read of his progress and see his beautiful pictures and see how far he has come. And your other boys are so handsome too! Thanks for the update. Glad to hear you’re enjoying your summer! Love ya!
Nat