January 28, 2007
January 28, 2007 | Updates
Well, this week was much less exciting than last week. Yeah! Tom and I spent Monday taking Samuel down to Salt Lake for the pump reduction appointment we missed on Friday. It was funny because I told Tom that we always have the same conversation with each nurse that does the reduction. It always goes like this:Nurse: So you’re here for an increase?Me: No, a reduction.
Nurse: Oh, a reduction? Why?
Me: Because we don’t believe Samuel needs as much medication as he’s getting. He’s too loose and decreasing the doseage has been increasing his abilities.
Nurse: That’s strange. Normally, increasing the dose increases abilities. So how far down are we going.
Me: 75 micrograms.
Nurse: 75?! Have you spoken to his doctor about this?
Me: Yes, and we’ve been going down that much at each appointment for months.
Nurse (as she flips through his chart): Oh, yea, it looks like you have. OK, but I have to check his tone first. (as she checks his tone) Wow! Wow! We never see kids like this. He certainly doesn’t need as much as he’s getting. Let’s do the decrease.
Tom was silently laughing as he watched the exchange at the doctors office just like I had told him it would be. The only difference was this time we put in his chart that we’d like to get the doseage down to zero and remove the pump at some point. We are now down to about 475 micrograms a day (down from 1500 originally) and are seeing no bad side effects. Another 6 months and we should be to zero and then we’ll leave the pump in for 6 months or so just to make sure Samuel doesn’t need it. If we conclude he doesn’t, it will come out. I can hardly wait!
We also spent part of the day looking for a new Suburban and by Tuesday, Tom had one picked out and bought. It was almost like it was supposed to happen because the loan flew right through the bank. It usually takes us longer than most to get a loan because we are self employed and have to prove our income, but not this time. I don’t think we’ve even gotten a loan so easily. So I guess we were meant to get a different car. Who knows why? Maybe the old one just wasn’t safe anymore after all it had been through. Only God knows why.
Samuel woke up sick on Tuesday, which is always a bit scary. He had a low grade fever and a congested cough. The fever hung on for about 3 days and the cough is still lingering. But all things considered, he faired very well through it. He usually throws up a lot when he has a cough, but he only threw up once. And he did a good job at coughing and clearing his throat as it needed it. He even slept well through it all. So, I can’t complain.
The week was pretty slow. We cancel all therapy and Samuel didn’t go to school. We just hung around at home and relaxed. Samuel has been struggling a bit with the pump medication reduction as he always does for a week or two. But we are supplementing him with some oral medication to keep him calm and help ease the withdrawals. It just seems wrong for a 3 year old to have to suffer from medication withdrawals, but Samuel has suffered from that more than anyone I know. He’s also the toughest person I have ever known. He amazes me daily!
We got new padding to cover all the bars on Samuel’s crib so he can’t possibly get his legs through the bars and bruise them up anymore. It’s turned out to be more of a blessing than I thought because now I can put him in bed at night and let him watch a short video and he’ll usually fall asleep. That never worked before because he would just get himself tangled in the bars and never relax enough to fall asleep. So that’s been nice for both of us.
We have a few appointments this week, one with the NACD to redo Samuel’s home therapy program. Hopefully, they can give me good ideas on getting Samuel to use his arms when crawling. Otherwise, nothing much new on the horizon.
I read a marvelous story in the Church News sent to me by Tom’s aunt. (Thanks Aunt Judy!) It was about an 11 year old boy who contracted a mysterious illness and fell into a coma 2 years ago. He suffered brain damage and showed no signs of consciousness for 22 months and then one day began to wake up. Now, just a few months later, he is nearly fully recovered. When this little boy first got sick and his family questioned why, their Relief Society president put it into perspective. She told them, “She thought he was on a two-year mission. He brought the community together. He brought the Church members together. When his two years were over, he woke up.” What a wonderful story! I just wanted to share it with you all.Thank you for all your prayers. Please continue to pray for our little Samuel. We have not lost the feeling that he will someday be well and whole again in this life. Some may feel sorry for us as parents hanging onto something that is simply “impossible”. But it is not just our desire, it is a feeling of peace that we receive when we pray for our little boy. We believe it will happen. If it does not, then it will be a flaw in our perception of the things we are feeling – not a flaw in God’s plan. He will do what is best for us and our little guy and we will be happy either way. But we have not lost our faith and hope that you have not lost yours. We still need your prayers as fervently as ever.Love,
The Jewkes
P.S. I am trying to find someone who will help me build an actual website just for Samuel. We need to raise more funds for treatments that are not covered by insurance and we believe a website may be the most effective way to accomplish that. If anyone knows of someone who might be willing to donate some time towards such a website, would you please let me know. Thanks!
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