Been a couple of weeks. Been busy couple of weeks.
Important things first. Today we had a clinic visit which went well. HGB is up, which is great. WBC are a ted lower, essentially flat and Neutrophils are up. The platelets are down from a month ago - from 306k to 238k. The monocytes are a up a fraction as well. Both, however, are within the normal range and the slight increase in monocytes can be explained by a bug Zevi is getting over. The doctor said she is not concerned at this point. Regardless, blood was drawn for the Chimerism test and in a week or two we should know better.
Another bit of news is sleep training. After basically not sleeping at all we visited the sleep clinic and were instructed to perform sleep training. Right around that time Benya had a virus and was banished to Grandma Rita. Then Alla got a sore throat and was banished as well. I used the opportunity to get to work. Four very, very miserable night followed. The result, however, was almost a week of Zevi sleeping much better, with me coming to his room at most twice a night for a minute to cover him up. These days he sleeps well roughly every other night. On the nights when Zevi does not sleep well, things are still a bit better - there is less screaming, more of me coming over and telling Zevi to get into bed, which he does, and even covers himself with his favorite blanket. We are not done, but things are moving in the right direction.
Another bit of amazing news: our donor wrote back to us! We now know he is a senior in college and by all indications is a great guy. Both he and all of us cannot wait until we get to talk without limitations and, eventually, meet face to face.
Finally, last weekend Oregon served up some amazing weather and we headed to the beach. Great company, a warm bright day, no wind at all. The boys got to play in the sand, run around, met a few dogs. It was great to watch them go crazy (ok, up to a point) and especially good to see Zevi have energy to spare.
The language and cognitive (cleverness?) skills continue to grow too. Benjamin talks up a storm, as always. He often greets me with a hug and says "Papa, you are my friend!" Benjamin also refers to hugging and reminders of friendship when he feels he is about to be in hot water. I helps him about a third of the time. Zev recently provided this bit of fun: Alla and I were out and Grandma Rita was putting the boys to bed (thank you!). Per out request she gave him only a bit of juice at bed time. Zevi, as usual, demanded more. Rita tried to argue that, in fact, Zevi has a lot of juice. Zevi demanded to look and was told that his bottle contained more juice than he could actually see. At that point Zevi suggested they pour out the juice into a clear cup and take a look. At that point, I believe, Zevi got a well-earned increased allotment of juice.
Tuesday, January 27, 2015
Monday, January 12, 2015
Day +150
Friday was another day of good news. Easy to share. The fourth Chimerism test came in at 100% donor - hell yea! We are now officially on monthly visits. Further, Zevi appetite has been returning. All good news.
Zevi also got to experience his first Lego class. Benya only said about 5 times "I will show you, brother!" By the end of the class the teacher was visibly worn, the boys caused only mild havoc, but they did build what they set out to.
Sleep does continue to be a challenge. Zevi asks to be covered, migrates to the couch and back (with entourage of blankets, pillows, juice bottle, one dragon, and one sleepy/pissed parent. Tonight at bed time the boys could not decide who should sit with them for five minutes. So, I suggested that instead they tuck mom and me in, and sit with us. Zevi was having none of it, Benya looked like he might go for it. Now, if I could get Benya to tuck his brother in 4-5 times per night, we'd be set.
On Saturday Alla and I got a night off to celebrate New Year according to the old Russian calendar. Never done it before, but it was a chance to get away - compliments of grandma Rita - so I am all for weird traditions all of a sudden. It was a nice night, great company, good music, a chance to see an old friend in action on stage.
Another "first" I'd like to share. On Saturday we took Zeva to sushi. Come to think of it, it was the first for him since transplant, but that was not the first I was talking about. For the first time ever all four of us ate at the sushi place and did not leave a pile of food on the floor. It was good to leave the place and not feel like I had to apologize to the staff for the terrible mess.
On that note, let me leave you with the wishes of a good week.
Zevi also got to experience his first Lego class. Benya only said about 5 times "I will show you, brother!" By the end of the class the teacher was visibly worn, the boys caused only mild havoc, but they did build what they set out to.
Sleep does continue to be a challenge. Zevi asks to be covered, migrates to the couch and back (with entourage of blankets, pillows, juice bottle, one dragon, and one sleepy/pissed parent. Tonight at bed time the boys could not decide who should sit with them for five minutes. So, I suggested that instead they tuck mom and me in, and sit with us. Zevi was having none of it, Benya looked like he might go for it. Now, if I could get Benya to tuck his brother in 4-5 times per night, we'd be set.
On Saturday Alla and I got a night off to celebrate New Year according to the old Russian calendar. Never done it before, but it was a chance to get away - compliments of grandma Rita - so I am all for weird traditions all of a sudden. It was a nice night, great company, good music, a chance to see an old friend in action on stage.
Another "first" I'd like to share. On Saturday we took Zeva to sushi. Come to think of it, it was the first for him since transplant, but that was not the first I was talking about. For the first time ever all four of us ate at the sushi place and did not leave a pile of food on the floor. It was good to leave the place and not feel like I had to apologize to the staff for the terrible mess.
On that note, let me leave you with the wishes of a good week.
Friday, January 2, 2015
Day +141
The recent two weeks have been good, if not perfectly smooth. The recent blood numbers have been very good - ANC 5300, HGB 11.0, PLT 306 - new record. WBC is 9.77 - the high side of normal, consistent with someone finishing off a viral cold.
Due to the same bug Zevi's eating has been varied. Sleeping - don't even start me on sleeping. Alla and I either split nights or one of us takes a whole one to give the other a break. Stomach is functioning, but with occasional rumble, literal and figurative. It is this "occasional" business that somewhat drives us nuts. As the doc said, now that the immune suppression is over, if we are going to see GVH, we will see it in the next few months. On top of that, we watch for signs of the way things were before the transplant, such as low fevers, not-eating and being tired. Rare conditions for a toddler, right? So, every loose stool, every day of poor eating raises an inevitable question of "is it GVH? Do we scope him?" On a rational level it is clear that a three year old whose food restrictions have been lifted recently will eat all manner of things and an occasional upset stomach is to be expected. What can I say: in the language of computer games, we passed the "rational" level long ago, ran straight through "slightly off," entered into "straight up crazy," exited that into "barely keeping it together" which we regularly leave for a an extended stay in "sleep deprivation induced psychosis." And that, my gentle reader, I want to make clear - is not me whining. So far, we have done extremely well, things are going smoothly, and I have truly nothing to complain about for the 141 post-transplant days.
So let me leave 2014 with the following thought (and boy, are we ready to leave it!); it was a heck of a rough year, yet somehow I have reason to be very, very grateful. Unlike some others, I do not do optimism, so this is as close as I get to being hopeful. One more thought; thank you for being there, sticking with us, reading this. Thank you.
We are ready to move on. Blood sample for the most recent Chimerism test was drawn on Tuesday we are waiting for the test results. One day, one test result at a time.
Due to the same bug Zevi's eating has been varied. Sleeping - don't even start me on sleeping. Alla and I either split nights or one of us takes a whole one to give the other a break. Stomach is functioning, but with occasional rumble, literal and figurative. It is this "occasional" business that somewhat drives us nuts. As the doc said, now that the immune suppression is over, if we are going to see GVH, we will see it in the next few months. On top of that, we watch for signs of the way things were before the transplant, such as low fevers, not-eating and being tired. Rare conditions for a toddler, right? So, every loose stool, every day of poor eating raises an inevitable question of "is it GVH? Do we scope him?" On a rational level it is clear that a three year old whose food restrictions have been lifted recently will eat all manner of things and an occasional upset stomach is to be expected. What can I say: in the language of computer games, we passed the "rational" level long ago, ran straight through "slightly off," entered into "straight up crazy," exited that into "barely keeping it together" which we regularly leave for a an extended stay in "sleep deprivation induced psychosis." And that, my gentle reader, I want to make clear - is not me whining. So far, we have done extremely well, things are going smoothly, and I have truly nothing to complain about for the 141 post-transplant days.
So let me leave 2014 with the following thought (and boy, are we ready to leave it!); it was a heck of a rough year, yet somehow I have reason to be very, very grateful. Unlike some others, I do not do optimism, so this is as close as I get to being hopeful. One more thought; thank you for being there, sticking with us, reading this. Thank you.
We are ready to move on. Blood sample for the most recent Chimerism test was drawn on Tuesday we are waiting for the test results. One day, one test result at a time.
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