"Just the Facts"-- What a week, good labs except for one, another midnight trip to the ER for an off the charts level. Still very week, but having to keep exercising.
B seems to be averaging about 1.5 weeks between blood infusions, which has increased from 1 week. We are not quite able to make the 2 week mark yet, but that may come soon. In the meantime another hiccup has presented itself and this one is tricky to manage. We are watching this level and the very first time I tested the reading was so high the range stated: "Call the Doctor" The bummer was that it was 10 pm, so we had to wait 2 hours and test again, which didn't go in the direction we hoped it would, so off we went to the ER for another torturous night waiting, getting IV fluids and more testing. We were finally released to go home at 6am the next day. ugh! I don't know about you, but I need my beauty sleep. B was able to cat nap for an hour or so in between testings as he was laying down. I was on a fold out chair. Oooops, sounds like I am complaining. Anyhow, we have spent the last few days working on a rhythm to get this new phase under control as much as we can. To top it off, B's diet has shifted once again, so what he was eating last week no longer works this week. But, we do have good news and that is the protein shakes we are giving him seems to be working and putting the weight back on. He checked in at 147 this week!
The latest on the hair report is that it is coming in, but still sparsely and a bit wild. When it finally all comes in, it will be very interesting, still cannot tell the color or texture or if it will be as thick as he once had. He still does have that mustache and is set on keeping it until head hair is in full bloom. We had to extend his handicap placard as it doesn't look like he will be driving anytime soon. Bet, you are all happy to hear this! I would choose to stay off the roads if they allowed him to be driving right now. For all the difficulties we are enduring, there are always sweet blessings that come our way. You have to be looking up to catch them and cannot be so self absorbed or you will miss them, but they are very special and delivered at just the right time. So thank you for all the blessings!
Until next time,
Hopeful Believer.
Saturday, May 21, 2011
Monday, May 16, 2011
May 16, day +107 I think I can, I think I can, I think I can!
"Just the Facts"-- Surprisingly did not need blood or platelets today! That was great news, feeling good, but have the slows due to meds.
It is always very exciting when you go to infusion expecting to be there for hours getting your needed blood infusion and then to find out, yea! you don't need them today, as your levels have held or better yet, improved. This is also the report you would expect at post 100 days, however we have come to learn that in this journey, there is not an established path and that B is forging his own unique path each and every day. Because of this, it is even more exciting to find out that his levels are holding and he didn't need blood. He seems to improve just a hair each day, no pun intended, but that seems to be growing too! We do still have set backs, as today he weighed in at 139 so he has lost 8 pounds. This is all due to his glucose shooting up and he does not want to start insulin treatments, so we have shut down all the sugar, which was arbitrarily adding pounds. I didn't know that each day there were root beer floats being consumed. The daughter caregiver and her dad were in cahoots. So we are beating the glucose back down and working on real calories to build muscle and strength. The latest meds are giving him a challenge, it makes him foggy in the head and weak and fatigued. He had a recurrence of the rash, but not nearly as aggressive as before. All in all the real test we watch for is the blood production and that shows signs of working, and for that we are encouraged and feel blessed.
This journey has been going on for 5 months now and even though we think we are through the worst of it, we still have a ways to go. B still cannot drive, or work, or eat like the rest of us. He is still immuno suppressed and cannot be around people. Our family still has to be careful about being around lots of people and anyone sick. Our youngest daughter graduates from high school this June and it is my prayer that B will be healthy enough to attend this milestone in her life. She has experienced most of her senior year without her dad being involved and that has been hard on us all. But I know the Lord has equipped her with strength and character to deal with this difficult phase of her life. He does not promise us all a rose garden, but does promise to be with us during the desert patches of our lives. I have felt His presence and have come to rely on Him during this difficult phase in our life. I recently saw some friends and just the wonderful hugs and well wishes and blessings to pass on to B were wonderful and so uplifting. I thank all of you for your kind and generous support. Truly you each have walked with us on this journey and we so appreciate it.
Until next time,
Hopeful Believer.
It is always very exciting when you go to infusion expecting to be there for hours getting your needed blood infusion and then to find out, yea! you don't need them today, as your levels have held or better yet, improved. This is also the report you would expect at post 100 days, however we have come to learn that in this journey, there is not an established path and that B is forging his own unique path each and every day. Because of this, it is even more exciting to find out that his levels are holding and he didn't need blood. He seems to improve just a hair each day, no pun intended, but that seems to be growing too! We do still have set backs, as today he weighed in at 139 so he has lost 8 pounds. This is all due to his glucose shooting up and he does not want to start insulin treatments, so we have shut down all the sugar, which was arbitrarily adding pounds. I didn't know that each day there were root beer floats being consumed. The daughter caregiver and her dad were in cahoots. So we are beating the glucose back down and working on real calories to build muscle and strength. The latest meds are giving him a challenge, it makes him foggy in the head and weak and fatigued. He had a recurrence of the rash, but not nearly as aggressive as before. All in all the real test we watch for is the blood production and that shows signs of working, and for that we are encouraged and feel blessed.
This journey has been going on for 5 months now and even though we think we are through the worst of it, we still have a ways to go. B still cannot drive, or work, or eat like the rest of us. He is still immuno suppressed and cannot be around people. Our family still has to be careful about being around lots of people and anyone sick. Our youngest daughter graduates from high school this June and it is my prayer that B will be healthy enough to attend this milestone in her life. She has experienced most of her senior year without her dad being involved and that has been hard on us all. But I know the Lord has equipped her with strength and character to deal with this difficult phase of her life. He does not promise us all a rose garden, but does promise to be with us during the desert patches of our lives. I have felt His presence and have come to rely on Him during this difficult phase in our life. I recently saw some friends and just the wonderful hugs and well wishes and blessings to pass on to B were wonderful and so uplifting. I thank all of you for your kind and generous support. Truly you each have walked with us on this journey and we so appreciate it.
Until next time,
Hopeful Believer.
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