October 20, 2005
October 20, 2005 | Updates
Just a quick update to let everyone know that the trip to Salt Lake today went well. Samuel slept most of the way down there on his own. (I have had to give him medication to make him sleep on long trips the past few times because he becomes so upset.) But today, I didn’t give him anything but his normal doses and he had a good nap all the way to Salt Lake. (The trip back wasn’t so great, but I guess you can’t always have everything you want!)We met with his doctor at Primary Childrens to have his pump refilled. It all went smoothly and we did lower his pump dose from 1500 micrograms per 24 hours to 1350. We’re trying to get the night dose down as low as the day dose so that he will urinate on his own 24/7. I am still having to cath him during the nights. After asking the doctor a few minor questions, we were done and off.
We next went to visit the hyperbaric clinic where Samuel will be receiving his HBOT treatments. We were there for about 2 hours as they showed us around and explained the treatments and machinery to us. Tom and Samuel took a trial run in one of the chambers to see if Samuel would regulate the pressure in his ears OK. He did fine. He has this little “deal” going where he opens his mouth really wide all the time. It drives me crazy, but it was perfect for keeping his ears regulated during the test run. So I guess I’ll stop complaining about that little habit for a while.
We scheduled to start his treatments this coming Monday and will do one treatment a day - Monday through Friday - for at least the next eight weeks. There is no way to know how much it will help him or if it will help at all. But there are enough encouraging stories of others who have used it for us to want to give it a try. I guess my biggest worry is I’m a little clostraphobic and those chambers are pretty small! 
But I’m sure I’ll be fine because I’ll be too busy worrying about Samuel to worry about that.
I’ll post more in a few days. Right now, I’m really tired. And Samuel is snoozing away, so I’m headed there with him! 
Thanks for all the prayers. Just keep up on them. No matter what happens, it is all for the best. And we have felt time and time again that this is meant to be a long trial. And we also know that great things only happen after our faith is tried. So don’t give up on little Samuel. He’s getting better - slow, but sure.
Thanks again!
Love,
The Jewkes
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