"Just the Facts"-- Working on a day schedule, got out of the car today with a spring in his step, felt OK, didn't need blood or platelets. Still getting infused medicine. Eating like a horse.
I may have mentioned previously that B's emotions are quite sensitive. So if anyone responds to his lab reports and is too aggressive or seems hesitant he tends to over react, thinking that something is terribly wrong. Today, he had a very enthusiastic nurse that was really into looking at his lab reports. She saw something, he could tell and then she excitedly came over to him exclaiming that they hadn't run a virus test in over 4 weeks and that she was going to run one. Well this sent him into quite a scare and he called me at work to ask me to get in touch with his coordinator and let her know they were running test! Well I did what was requested and it turned out that they had been running this test every week. This was the work of an over eager nurse. Not the first one we have run into I might add. Everything worked out but it did stir the patient quite a bit. B didn't need any blood infused today, which was a nice unexpected surprise. He was sure that he would need some today, having seen the numbers from yesterday, but the great news was that our little super cells were working hard and producing blood. The medicine B is on plays a big part in how he feels from day to day and how it is working internally as the grafted cells continue to battle and make a new home.
B is almost continually in a fog, both mentally and physically. He just cannot jump up from a sitting position. He actually needs to think about the process and then muster up the strength and gumption to do it. This is pretty typical day in and day out, so today, when he was able to just jump out of the car and go right into the infusion, he was amazed. The thought process that usually goes with that function was on automatic pilot for a moment just like the rest of us. Of course this did not last the entire day, but it was a sign of improvement and it was measurable for him. So today anyway, it was good news and we saw some progress. Of course all this could change tomorrow, as that seems to be how it has been going, but we hope not, as tomorrow is day +70 and that means we only have 30 days more to get to day+100, so we should be seeing better days as we go. Prayer is powerful and we have has so much prayer offered on our behalf. That has been amazing. I just found out my favorite little person is having a really hard time maintaining a stable count for his type 1 diabetes. His numbers are way to low, so he is spending the night with my sister and they are watching him closely, testing him every 15 minutes to make sure he doesn't slip into a coma. If you wouldn't mind could you say a prayer for this little guy? He is 6 and has type 1 diabetes and is the best little guy you would ever meet. Thanks so much.
Until next time,
Hopeful Believer.
Friday, April 8, 2011
Wednesday, April 6, 2011
Apr 6, Day +67 Food Dreams
"Just the Facts"-- Trying hard to gain weight, blood levels bouncing up and down, so infusion is a busy place. Feeling symptom free, but extremely tired.
Can you imagine being able to dream up any type of food concoction to eat without any weight gain concerns? Well this is exactly where B is. They tell us that his metabolism is processing at a very high rate? Can't imagine why, as the best he can do at times is a slow stroll around our courtyard a couple times a day. He doesn't even break a sweat. It's a good thing too as that would most likely result is a pound or two lost. He is still weighing in at 134-135. We can't seem to get above that weight and stay there. The shakes and malts are having a good time at our house. Bagels and cream cheese are high on the caloric scale, mind you all these things have to be pasteurized, homogenize, overcooked and process packaged for B to be able to eat it. He is about as far away from a healthy organic diet as you can get. Most people are opting for pro-biotic these days while B is on a daily diet of anti-biotics! We are still dealing with the body peeling, however most of the body has shed, with the exception of the feet. They are still in a full blown peeling cycle, which requires nightly grooming and moisture application, chased by thick soft socks.
At this stage of recovery, we are holding our breath a bit as the last few times we have been here, the bottom had dropped out of the shoot and B came down with some horrific side effect. So we are praying that we have seen the worst of it and that B is on a smooth incline to full recovery. Still we take it one day at a time. Tomorrow worries are not for us today. The Bible tells us that God is keeping a watchful eye over us and our future. And the Day will come when you will have a whole healed body and Life! We are thankful for that encouragement and will keep our trust in Him. Thanks to all you pray'ers out there, we could not possibly have done all this without you!
Until next time,
Hopeful Believer.
Can you imagine being able to dream up any type of food concoction to eat without any weight gain concerns? Well this is exactly where B is. They tell us that his metabolism is processing at a very high rate? Can't imagine why, as the best he can do at times is a slow stroll around our courtyard a couple times a day. He doesn't even break a sweat. It's a good thing too as that would most likely result is a pound or two lost. He is still weighing in at 134-135. We can't seem to get above that weight and stay there. The shakes and malts are having a good time at our house. Bagels and cream cheese are high on the caloric scale, mind you all these things have to be pasteurized, homogenize, overcooked and process packaged for B to be able to eat it. He is about as far away from a healthy organic diet as you can get. Most people are opting for pro-biotic these days while B is on a daily diet of anti-biotics! We are still dealing with the body peeling, however most of the body has shed, with the exception of the feet. They are still in a full blown peeling cycle, which requires nightly grooming and moisture application, chased by thick soft socks.
At this stage of recovery, we are holding our breath a bit as the last few times we have been here, the bottom had dropped out of the shoot and B came down with some horrific side effect. So we are praying that we have seen the worst of it and that B is on a smooth incline to full recovery. Still we take it one day at a time. Tomorrow worries are not for us today. The Bible tells us that God is keeping a watchful eye over us and our future. And the Day will come when you will have a whole healed body and Life! We are thankful for that encouragement and will keep our trust in Him. Thanks to all you pray'ers out there, we could not possibly have done all this without you!
Until next time,
Hopeful Believer.
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