The chemo cycle, as I have mentioned somewhat before, is fairly predictable. During the chemo hospital stay, and lasting anywhere from a few days to a week, The Boy doesn't feel as well. He may be fussy and likely less interested in eating. He may be more sensitive in terms of taste and texture. Ironically enough, his dose of Pepcid causes him to throw up sometimes (ironic because Pepcid is an acid-reducing medicine for the stomach). We give it very...gingerly, especially when he isn't feeling as well. But anyhow, he feels a little crappy for those days. As he starts to feel better from the actual chemo, his counts are still going down, so he is at risk for neutropenia and neutropenic fever, which means the hospital again...then after his counts come back, he's good for a few days or even a week before the next chemo.
Sometimes my moods are reflective of what The Boy is going through...as he feels well, so do I. When he starts to feel the effects, it brings me down. When his hemoglobin or platelets are down, and he is tired, I am usually pretty tired too. As he starts to feel better, my mood improves. I was worried about yesterday and being by myself, but it was such a great day with him, and the fact that he was still feeling good, and walking too, made it even better. Today he didn't seem to have as much energy for walking.
But he will again soon.
On Monday, The Boy has his early intervention evaluation. I hope that he feels well enough for them to get an accurate assessment. Then again, he spends quite a bit of time feeling crappy, so it's not going to be inaccurate for them to see him that way.
Saturday, January 31, 2009
Concierge service...?
We're 0 for 2 on the timing of meals here at the hospital. The Boy gets hungry and wants to eat, so we give him whatever food we have on hand, and then he isn't hungry when they bring his meals.
Very annoying.
I'm sure he would have enjoyed macaroni and cheese, carrots, french fries, and whatever else I had to offer him, but he had eaten quite a few Cheddar Cheese Pringles and had no appetite for lunch.
I had a great lunch, however--macaroni and cheese, salad (which I order for myself even though The Boy doesn't eat it), pudding, jello, and juice.
Very annoying.
I'm sure he would have enjoyed macaroni and cheese, carrots, french fries, and whatever else I had to offer him, but he had eaten quite a few Cheddar Cheese Pringles and had no appetite for lunch.
I had a great lunch, however--macaroni and cheese, salad (which I order for myself even though The Boy doesn't eat it), pudding, jello, and juice.
Day 2 morning report
Nothing all that interesting. Grandma said that they brought breakfast after 8:30, and The Boy was hungry before that, so he had already eaten a bar, chips, applesauce and juice. As a result, he wasn't hungry for what he had on his tray.
The hospital has these little cheese omelettes that The Boy likes. I like them even more than he does. They are one of the tastiest things in the world. Why? Because they were one of the first things that I had to eat after The Boy was born, in this very hospital. Oddly enough, the first thing that I'd had to eat was a turkey sandwich (The Boy was born at 3:07 and I wanted to eat a few hours afterwards), which was pretty forgettable. Maybe the reason why those cheese omelettes were so unique was that before having The Boy, I didn't even like omelettes that much, but since having the ones in the hospital, I enjoy cheese omelettes immensely.
Anyhow, enough about omelettes.
The Boy has enjoyed coloring more and more. He basically just makes singular lines at this point, but the quality of the lines has improved over the last few months. This is probably not interesting to anyone unless you have some sort of background or interest in child development, or if you have previously had a conversation about the quality of toddler scribbles.
The Boy also has a Steelers temporary tattoo on his head. Thanks, Grandma.
The hospital has these little cheese omelettes that The Boy likes. I like them even more than he does. They are one of the tastiest things in the world. Why? Because they were one of the first things that I had to eat after The Boy was born, in this very hospital. Oddly enough, the first thing that I'd had to eat was a turkey sandwich (The Boy was born at 3:07 and I wanted to eat a few hours afterwards), which was pretty forgettable. Maybe the reason why those cheese omelettes were so unique was that before having The Boy, I didn't even like omelettes that much, but since having the ones in the hospital, I enjoy cheese omelettes immensely.
Anyhow, enough about omelettes.
The Boy has enjoyed coloring more and more. He basically just makes singular lines at this point, but the quality of the lines has improved over the last few months. This is probably not interesting to anyone unless you have some sort of background or interest in child development, or if you have previously had a conversation about the quality of toddler scribbles.
The Boy also has a Steelers temporary tattoo on his head. Thanks, Grandma.
Friday, January 30, 2009
Chemo 4, Day 1
All in all, another boring day. As I said, we like boring. We got up early and went to breakfast at the diner. We learned our lesson, though, and will likely do breakfast in the hospital cafeteria instead, for the sake of time. But The Boy ate well and was charming.
Thankfully, Musical Daddy took us to the hospital and brought us and all of our stuff to the admissions office. I think that for subsequent treatment stays, we'll do the same. It worked. As soon as we were in there and I was waiting for the person at the desk to process David's admission (which took longer than usual for some reason), I put on his EMLA cream as we waited. Then upstairs to the floor, with the help of the lady from the desk to get the stuff upstairs.
You see, The Boy travels with a lot of stuff. We have the big red bag, which contains his playmat (taking up almost half of the bag) and packages of Seventh Generation Disposable Diapers, as well as some of the toys, containers of Lysol Wipes, and assorted other things in the pockets because we don't want to bring the diaper bag, and we have the toy bin, which is about 2 by 2 by 1.5. I also had an additional bag of stuff that I grabbed on the way out the door, which I otherwise would have stuffed into the red bag. It's really not that bad and I can almost, maybe, kind of, manage it on my own. Except for the fact that I also have to carry The Boy, who doesn't do much in the way of walking. More on that coming up.
Not long after we got into the room, we learned that The Boy's pediatrician happened to be on the floor and would be stopping in to see him. He talked with me for awhile and said that he was pleased about the fact that The Boy seemed to be doing pretty well even with the chemotherapy, and that he was staying on track developmentally, or close enough.
On that topic: as we left this evening, Musical Daddy wondered if The Boy's staying on track was a sign that the chemo isn't working once again. I pointed out that it has had quite an effect on him, what with him needing transfusions so frequently, not to mention that only just beginning to walk at 17 months isn't exactly typical. My thought was, rather, what would The Boy be like if it weren't for the chemo? Unfortunately, it is impossible to speculate on that because the cancer and the resultant treatments are a part of him, and we can't "what if" about him and wonder if he could have been some superstar if it weren't for the cancer. He's still a superstar and I have every hope that he'll stay that way.
Anyhow, getting back to the chronicle of the day--the nurses accessed his port at 9AM. We got one of our favorite daytime nurses, who was assisted by another favorite daytime nurse who hadn't seen The Boy since his initial diagnosis.
The chemo didn't start any earlier than last time, and this is the 6 hour infusion followed by the 1 hour infusion. However, it was finished a bit earlier because she decided to do the Zofran at exactly 12 and 8 instead of doing the Zofran in between the two chemo meds. As a result, the every-15-minutes of blood pressure was not done during the shift change. Also, and maybe this is just because this nurse is that good, The Boy got the meds that I said he gets at 7PM...at 7PM. We learned to say that he gets his meds at 7AM and 7PM because otherwise they forget about the meds and he doesn't get them until 9:30, when he's already asleep and is in no mood.
The day, beyond that, was pretty boring. We napped from 9:30 to 11:00 and again from 2:00 to 3:30. When we weren't napping, we were playing. During his playing, The Boy discovered how to push himself to standing from hands and feet! This was huge! He would sometimes take a few steps after that and sometimes just stand there for awhile. He looked so strong, like he had no problem standing there, and it was almost foreign to me because he's still a baby in so many ways.
He also says the word "shoes" which is the cutest thing in the world.
Drama for today, because we have to have some: somehow The Boy's IV got unscrewed. As in, one of the links came undone. This is BAD, because there is horrible chemo stuff in there. There was some blood return coming out through the line as well. I hit the nurse button and cleared off the mat IMMEDIATELY. Of course our nurse was the only one around at the moment. One of The Boy's oncologists was around, and I asked her for help, which she wasn't so able to do, although she tried, by asking where they keep the flushes. I didn't know (although I'm sure I will know pretty soon). Finally The Boy's nurse gave the oncologist the key to get the flushes. We put the toys and mat pieces to the side to be cleaned, and the nurse got the drippings up from the floor, and fixed the IV. The oncologist examined The Boy after that was all done.
Daddy, Grandma, and Grandpa all arrived around the same time, 5:15-ish, and it was so nice to be together with everyone. Grandma comes to spend the nights with The Boy, and she takes such good care of him. Not to mention, she takes good care of the nurses. And me.
I should have the computer with me tomorrow, so I'll be able to update more regularly, but so far, everything is going well, and we hope upon hope that it all stays that way and we're out on Sunday in time for most of the Super Bowl.
Thankfully, Musical Daddy took us to the hospital and brought us and all of our stuff to the admissions office. I think that for subsequent treatment stays, we'll do the same. It worked. As soon as we were in there and I was waiting for the person at the desk to process David's admission (which took longer than usual for some reason), I put on his EMLA cream as we waited. Then upstairs to the floor, with the help of the lady from the desk to get the stuff upstairs.
You see, The Boy travels with a lot of stuff. We have the big red bag, which contains his playmat (taking up almost half of the bag) and packages of Seventh Generation Disposable Diapers, as well as some of the toys, containers of Lysol Wipes, and assorted other things in the pockets because we don't want to bring the diaper bag, and we have the toy bin, which is about 2 by 2 by 1.5. I also had an additional bag of stuff that I grabbed on the way out the door, which I otherwise would have stuffed into the red bag. It's really not that bad and I can almost, maybe, kind of, manage it on my own. Except for the fact that I also have to carry The Boy, who doesn't do much in the way of walking. More on that coming up.
Not long after we got into the room, we learned that The Boy's pediatrician happened to be on the floor and would be stopping in to see him. He talked with me for awhile and said that he was pleased about the fact that The Boy seemed to be doing pretty well even with the chemotherapy, and that he was staying on track developmentally, or close enough.
On that topic: as we left this evening, Musical Daddy wondered if The Boy's staying on track was a sign that the chemo isn't working once again. I pointed out that it has had quite an effect on him, what with him needing transfusions so frequently, not to mention that only just beginning to walk at 17 months isn't exactly typical. My thought was, rather, what would The Boy be like if it weren't for the chemo? Unfortunately, it is impossible to speculate on that because the cancer and the resultant treatments are a part of him, and we can't "what if" about him and wonder if he could have been some superstar if it weren't for the cancer. He's still a superstar and I have every hope that he'll stay that way.
Anyhow, getting back to the chronicle of the day--the nurses accessed his port at 9AM. We got one of our favorite daytime nurses, who was assisted by another favorite daytime nurse who hadn't seen The Boy since his initial diagnosis.
The chemo didn't start any earlier than last time, and this is the 6 hour infusion followed by the 1 hour infusion. However, it was finished a bit earlier because she decided to do the Zofran at exactly 12 and 8 instead of doing the Zofran in between the two chemo meds. As a result, the every-15-minutes of blood pressure was not done during the shift change. Also, and maybe this is just because this nurse is that good, The Boy got the meds that I said he gets at 7PM...at 7PM. We learned to say that he gets his meds at 7AM and 7PM because otherwise they forget about the meds and he doesn't get them until 9:30, when he's already asleep and is in no mood.
The day, beyond that, was pretty boring. We napped from 9:30 to 11:00 and again from 2:00 to 3:30. When we weren't napping, we were playing. During his playing, The Boy discovered how to push himself to standing from hands and feet! This was huge! He would sometimes take a few steps after that and sometimes just stand there for awhile. He looked so strong, like he had no problem standing there, and it was almost foreign to me because he's still a baby in so many ways.
He also says the word "shoes" which is the cutest thing in the world.
Drama for today, because we have to have some: somehow The Boy's IV got unscrewed. As in, one of the links came undone. This is BAD, because there is horrible chemo stuff in there. There was some blood return coming out through the line as well. I hit the nurse button and cleared off the mat IMMEDIATELY. Of course our nurse was the only one around at the moment. One of The Boy's oncologists was around, and I asked her for help, which she wasn't so able to do, although she tried, by asking where they keep the flushes. I didn't know (although I'm sure I will know pretty soon). Finally The Boy's nurse gave the oncologist the key to get the flushes. We put the toys and mat pieces to the side to be cleaned, and the nurse got the drippings up from the floor, and fixed the IV. The oncologist examined The Boy after that was all done.
Daddy, Grandma, and Grandpa all arrived around the same time, 5:15-ish, and it was so nice to be together with everyone. Grandma comes to spend the nights with The Boy, and she takes such good care of him. Not to mention, she takes good care of the nurses. And me.
I should have the computer with me tomorrow, so I'll be able to update more regularly, but so far, everything is going well, and we hope upon hope that it all stays that way and we're out on Sunday in time for most of the Super Bowl.
Thursday, January 29, 2009
Boring is good!
Next chemo starts tomorrow morning, and I am grateful for another "boring" few weeks from one treatment to the next.
This time, The Boy had two transfusions. Same as last time, although this time he got blood and platelets the first time and just platelets the second time. We were told to expect a decline in platelets with the Carboplatin. He's getting the same thing again, which means that we should expect the same, if not more.
Hey everyone--if you've been considering giving whole blood or platelets, please go do it. As we progress, we'll figure out whether we want direct donations, but in the meantime, go give some blood. I can't, because I'm pregnant, but once I can again, I certainly will.
Anyhow, I'm glad that we have, once again, managed to avoid any unexpected visits. We didn't have any fever scares, even. Another victory!
This time, The Boy had two transfusions. Same as last time, although this time he got blood and platelets the first time and just platelets the second time. We were told to expect a decline in platelets with the Carboplatin. He's getting the same thing again, which means that we should expect the same, if not more.
Hey everyone--if you've been considering giving whole blood or platelets, please go do it. As we progress, we'll figure out whether we want direct donations, but in the meantime, go give some blood. I can't, because I'm pregnant, but once I can again, I certainly will.
Anyhow, I'm glad that we have, once again, managed to avoid any unexpected visits. We didn't have any fever scares, even. Another victory!
Tuesday, January 27, 2009
Walk this way
The Boy took about five steps on his own today! I was walking him down the hallway, with him holding onto my hands, and then I let go. He stayed standing and started walking! I tried to get him to do it again, but no dice.
We'll see if he does it again over the course of the day. I'd love for him to show Daddy!
We'll see if he does it again over the course of the day. I'd love for him to show Daddy!
Monday, January 26, 2009
Hey good lookin'
The Boy looks good. He feels good. AND the numbers reflect it.
He doesn't feel great. His platelets and hemoglobin were only okay, not super, but his white count was excellent. That's a good thing, because it means that I feel less paranoid about taking him places. Specifically, I feel better about taking him to see Daddy at school during his lunchtime.
I had two people come over, yesterday and today, to spend a few hours helping. It's nice just to know that there are people who are willing to do that. Yesterday's guest was a volunteer from Chai Lifeline who is close to my age. She got involved after hearing about the organization through another Jewish organization and had decided that she wanted to become more involved in volunteering. When we are in a better position in our lives, I'd like to do the same. I also regret not doing more when things in my life were better, although I don't know when I would have had the time...anyhow, I feel that much more compelled to give back, but I'm not in a hurry because I'm not able to yet. The other visitor that we had, today, was kind enough to watch the house while I took The Boy for his appointment, and then she stayed for a few hours. She attends my synagogue. I was able to wipe the bathroom counter, get some lunch together, fold laundry with her help and put it away, and feel a bit better knowing that there was an extra person, an extra set of hands. She is retired, having been a nurse, and she doesn't have as much going on. Both of our helpers seemed to enjoy The Boy and were glad to be there to help.
Next time I have either one of them, I'll have to be a bit more organized with what I want them to do, but this time around, I just wanted to get to know them and have them get to know The Boy. And even if I have an extra adult around from time to time, to help a little with stuff, or watch The Boy while I go out to the store, or just to have a conversation with me, it's a good thing.
I felt bad for a family at the center who arrived for treatment and ended up getting admitted right there, because both the baby and the mom had a fever. No fun.
He doesn't feel great. His platelets and hemoglobin were only okay, not super, but his white count was excellent. That's a good thing, because it means that I feel less paranoid about taking him places. Specifically, I feel better about taking him to see Daddy at school during his lunchtime.
I had two people come over, yesterday and today, to spend a few hours helping. It's nice just to know that there are people who are willing to do that. Yesterday's guest was a volunteer from Chai Lifeline who is close to my age. She got involved after hearing about the organization through another Jewish organization and had decided that she wanted to become more involved in volunteering. When we are in a better position in our lives, I'd like to do the same. I also regret not doing more when things in my life were better, although I don't know when I would have had the time...anyhow, I feel that much more compelled to give back, but I'm not in a hurry because I'm not able to yet. The other visitor that we had, today, was kind enough to watch the house while I took The Boy for his appointment, and then she stayed for a few hours. She attends my synagogue. I was able to wipe the bathroom counter, get some lunch together, fold laundry with her help and put it away, and feel a bit better knowing that there was an extra person, an extra set of hands. She is retired, having been a nurse, and she doesn't have as much going on. Both of our helpers seemed to enjoy The Boy and were glad to be there to help.
Next time I have either one of them, I'll have to be a bit more organized with what I want them to do, but this time around, I just wanted to get to know them and have them get to know The Boy. And even if I have an extra adult around from time to time, to help a little with stuff, or watch The Boy while I go out to the store, or just to have a conversation with me, it's a good thing.
I felt bad for a family at the center who arrived for treatment and ended up getting admitted right there, because both the baby and the mom had a fever. No fun.
Sunday, January 25, 2009
That's MY chair
The Boy pulled up and politely indicated that he would like to sit on my lap in the easy chair. Thirty seconds later he was asleep.
Usually that means that I'm stuck, which is a good excuse to relax anyway. I had to get up to fix the balance in the washing machine, so I slipped out and left him sleeping on the chair. He stayed there for about an hour and a half.
He is so comfortable in the chair, and he really enjoys dozing there. Just give him a remote and a football game, and he's good to go.
Usually that means that I'm stuck, which is a good excuse to relax anyway. I had to get up to fix the balance in the washing machine, so I slipped out and left him sleeping on the chair. He stayed there for about an hour and a half.
He is so comfortable in the chair, and he really enjoys dozing there. Just give him a remote and a football game, and he's good to go.
Saturday, January 24, 2009
Review: Kidsline Shopping Cart Cover
I purchased this a few weeks ago. I always carry wipes with me anyway, to wipe off the cart for extra germ control, but I thought that having this would be an improvement.
I had another cover that I didn't like much; it was Freecycled.
As you can see, this amply covers the entire cart so that there is no part of the cart that is exposed to the baby. It is cushy and looks comfortable. It has a seat belt included, to help smaller kids to stay upright.
It also rolls up and snaps shut easily, with the seatbelt serving as a carrying strap.
Here's where I got it:
Great price, great product. Get one.
Friday, January 23, 2009
An Odd Picture
When The Boy and I go on an outing, specifically when we meet Grandpa for our mall walks, I make sure to bring along a sippy cup of the Take n Toss variety (even though I don't actually toss them--it's so that if I do happen to lose it, it won't matter much). Usually they end up staying in the storage part of the stroller, or float around my car for awhile.
Yesterday I brought the cups in from the car and put them on the stroller. Today, while getting ready to leave for our walk, I forgot about them and just tossed them inside the house.
They are still there.
There are a bunch of sippy cups strewn around at the bottom of the steps. It looks like someone threw a wild toddler party and didn't make it to clean-up time.
Yesterday I brought the cups in from the car and put them on the stroller. Today, while getting ready to leave for our walk, I forgot about them and just tossed them inside the house.
They are still there.
There are a bunch of sippy cups strewn around at the bottom of the steps. It looks like someone threw a wild toddler party and didn't make it to clean-up time.
Thursday, January 22, 2009
Security Breach
A good day, in the grand scheme of things, because we're here at home and not in the hospital. That's always a measure of success--going to the treatment center and coming home afterward.
We got there in plenty of time for his 10:00 appointment, yet we had an impossible time finding a parking spot. I finally parked somewhere that was only sort of a parking spot, not knowing that such a maneuver would come back to bite me.
Got in for the blood draw relatively quickly, and I said that we'd go get a few groceries while we waited for the results. They assured me that they'd call as soon as they got the counts, so that in case The Boy needed anything, such as red cells or platelets or OH CRAP I forgot the neupogen.
(I interrupt that story to tell you what just happened: The Boy was just about asleep, settling down in his bed. I left to get the Neupogen. He cried. I came back prepared, put him on my lap, and minor hell broke lose. He squirmed. It hurt way more than it should, I'm sure, when he got the injection, and I managed to stick myself. Fun times. Not doing THAT again without help.)
Anyhow...so back to this morning. We left for the grocery store at 10:30, thinking that surely by the time we were done, they'd call us with the counts and tell us when to come back. But we couldn't get very far, because a gigantic SUV was blocking me in. I talked to the security guard/valet, who proceeded to yell at me. He wouldn't even let me finish telling him what was wrong, just yelled at me in mostly incomprehensible English. Finally, I understood him enough to tell him that no, I did not just come from the ER with The Boy, but rather, from the outpatient center, in the other direction. I still didn't understand why it was relevant until finally he indicated the ID bracelet on The Boy's ankle. We proceeded back to the outpatient center, with him still yelling at me, and me now yelling back that we couldn't leave because he had blocked me in.
Our buddy at the front desk explained to the guard that all of the outpatients also had to wear ID bands to match up with any medications that they were receiving and he explained that he didn't want just anyone to walk out with a patient. Fine. I can see how such vigilance would be useful. But not only was he obnoxious, but I could also not really understand him most of the time. Furthermore, pediatrics patients wear little security tags, like kiddie low-jack. And, to boot, we had been coming to this center for about 7 months, with The Boy wearing an ID band every time, and walking out with it every time. So either the entire security staff had been clueless for that long and longer, or this one guy had just decided to give me a hard time.
The receptionist cut off The Boy's ID tag, and our buddy moved the giant SUV so that we could leave. 10:45, by this point.
A trip to the store takes about 45 minutes, give or take. We didn't get that much food at the store, but we did take our time. Fortunately, I had brought a bagel from the treatment center (they do take care of us in that regard...lots of snacks because we spend lots of time there) so that The Boy wouldn't be too hungry. He usually has a snack in the middle of the day, and he usually has a later lunch. By 11:30, which was an hour after we originally planned to leave the center, we were done shopping, so I called over to the center to see if The Boy's counts were back. Supposedly, it takes about half an hour, maybe a little more...but no matter, I was unable to get a hold of them.
For some unexplainable reason, there are times when the phone doesn't actually get answered and goes instead to the answering service. But the answering service doesn't actually answer anything. They do take emergency messages to page the doctors, usually during off-hours, but other than that...nothing. Sometimes the answering service takes over when everyone is at lunch, but I know that they don't eat lunch at 11:30. No answer...and at this point I should have headed back there anyway, but in my stupidity and in my rage leftover from the run-in with the guard, I went home.
I got The Boy and the groceries in the house, and I gave The Boy some juice. No sooner did I do that than I got a call that yes, we did need to go back to the center. I changed The Boy's diaper, got us back on the road, and took The Boy's juice because I didn't really want him drinking it while we were moving. Didn't want the mess. Fitfitfitfitfit...
We returned to the center, having had no lunch, and got through the preliminaries for the platelet transfusion with surprising swiftness. There were sandwiches, which The Boy wasn't sure about...but fortunately, he ate a big piece of turkey, and some bread. He also finished the juice that I had taken from him as well as about half a cup more.
The platelet transfusion went just fine. The Boy slept for most of it, because he gets Benadryl and Tylenol before his transfusions, in case of a reaction. I watched TV with The Boy snuggled up to me. It is a nice feeling, even though I prefer bed, at home, to the recliner at the treatment center.
Musical Daddy got a little over an hour with The Boy before he had to leave for a meeting and a rehearsal. No fun for him. Good dinner, some playtime, a bath, some snuggles, and bedtime things. And then forgetting the Neupogen. Literally, as I was writing this blog, thinking about platelets, red cells, and white cells, I realized that I had forgotten Neupogen (which triggers white cell production).
I'm beat.
We got there in plenty of time for his 10:00 appointment, yet we had an impossible time finding a parking spot. I finally parked somewhere that was only sort of a parking spot, not knowing that such a maneuver would come back to bite me.
Got in for the blood draw relatively quickly, and I said that we'd go get a few groceries while we waited for the results. They assured me that they'd call as soon as they got the counts, so that in case The Boy needed anything, such as red cells or platelets or OH CRAP I forgot the neupogen.
(I interrupt that story to tell you what just happened: The Boy was just about asleep, settling down in his bed. I left to get the Neupogen. He cried. I came back prepared, put him on my lap, and minor hell broke lose. He squirmed. It hurt way more than it should, I'm sure, when he got the injection, and I managed to stick myself. Fun times. Not doing THAT again without help.)
Anyhow...so back to this morning. We left for the grocery store at 10:30, thinking that surely by the time we were done, they'd call us with the counts and tell us when to come back. But we couldn't get very far, because a gigantic SUV was blocking me in. I talked to the security guard/valet, who proceeded to yell at me. He wouldn't even let me finish telling him what was wrong, just yelled at me in mostly incomprehensible English. Finally, I understood him enough to tell him that no, I did not just come from the ER with The Boy, but rather, from the outpatient center, in the other direction. I still didn't understand why it was relevant until finally he indicated the ID bracelet on The Boy's ankle. We proceeded back to the outpatient center, with him still yelling at me, and me now yelling back that we couldn't leave because he had blocked me in.
Our buddy at the front desk explained to the guard that all of the outpatients also had to wear ID bands to match up with any medications that they were receiving and he explained that he didn't want just anyone to walk out with a patient. Fine. I can see how such vigilance would be useful. But not only was he obnoxious, but I could also not really understand him most of the time. Furthermore, pediatrics patients wear little security tags, like kiddie low-jack. And, to boot, we had been coming to this center for about 7 months, with The Boy wearing an ID band every time, and walking out with it every time. So either the entire security staff had been clueless for that long and longer, or this one guy had just decided to give me a hard time.
The receptionist cut off The Boy's ID tag, and our buddy moved the giant SUV so that we could leave. 10:45, by this point.
A trip to the store takes about 45 minutes, give or take. We didn't get that much food at the store, but we did take our time. Fortunately, I had brought a bagel from the treatment center (they do take care of us in that regard...lots of snacks because we spend lots of time there) so that The Boy wouldn't be too hungry. He usually has a snack in the middle of the day, and he usually has a later lunch. By 11:30, which was an hour after we originally planned to leave the center, we were done shopping, so I called over to the center to see if The Boy's counts were back. Supposedly, it takes about half an hour, maybe a little more...but no matter, I was unable to get a hold of them.
For some unexplainable reason, there are times when the phone doesn't actually get answered and goes instead to the answering service. But the answering service doesn't actually answer anything. They do take emergency messages to page the doctors, usually during off-hours, but other than that...nothing. Sometimes the answering service takes over when everyone is at lunch, but I know that they don't eat lunch at 11:30. No answer...and at this point I should have headed back there anyway, but in my stupidity and in my rage leftover from the run-in with the guard, I went home.
I got The Boy and the groceries in the house, and I gave The Boy some juice. No sooner did I do that than I got a call that yes, we did need to go back to the center. I changed The Boy's diaper, got us back on the road, and took The Boy's juice because I didn't really want him drinking it while we were moving. Didn't want the mess. Fitfitfitfitfit...
We returned to the center, having had no lunch, and got through the preliminaries for the platelet transfusion with surprising swiftness. There were sandwiches, which The Boy wasn't sure about...but fortunately, he ate a big piece of turkey, and some bread. He also finished the juice that I had taken from him as well as about half a cup more.
The platelet transfusion went just fine. The Boy slept for most of it, because he gets Benadryl and Tylenol before his transfusions, in case of a reaction. I watched TV with The Boy snuggled up to me. It is a nice feeling, even though I prefer bed, at home, to the recliner at the treatment center.
Musical Daddy got a little over an hour with The Boy before he had to leave for a meeting and a rehearsal. No fun for him. Good dinner, some playtime, a bath, some snuggles, and bedtime things. And then forgetting the Neupogen. Literally, as I was writing this blog, thinking about platelets, red cells, and white cells, I realized that I had forgotten Neupogen (which triggers white cell production).
I'm beat.
Tuesday, January 20, 2009
Looking over my shoulder...
We watch Scrubs reruns frequently in this house. It's a fun show, especially the middle seasons. TiVo picks it up--the one in the living room that is actually on the TiVo network, and the one in the bedroom that isn't because we don't really need to hook it up in order to get a few things here and there to watch in bed.
A few days ago it picked up an episode that I'm not sure we want to watch. We weren't in the mood for it when it came up, and perhaps we won't watch this particular episode for awhile. The backstory of the episode is that a patient who had been in the hospital for awhile and was everyone's favorite was supposed to go home after being cured of some sort of disease that had something of a risky treatment. Unfortunately, a bumbling idiot who was being dismissed as an intern ended up giving her an infection by touching a dirty glove and then not washing his hands before shaking her hand to say goodbye.
The episode that we didn't watch begins after this, where we learn that because this patient had gotten an infection, she was going to die. Plain and simple. Nothing could be done for her. It didn't seem as though the hospital staff had any knowledge of how she had gotten infected. The episode deals with the typical grieving process as the woman's death approached and how some of the doctors went through it just as much or more than the patient.
That's all it takes, is one little mistake.
So anyhow, not the most cheerful of posts, and not the most cheerful of topics, but things like this sit there in the back of my mind, as something that we don't talk about much, that we don't address because it's PROBABLY not going to be an issue. There's not much reason to think that The Boy won't be just fine after all this is over, with maybe some aftereffects of one kind or another that are still better than not having had him treated. There's not much cause because the prognosis is still good and his care has been great.
But.
Maybe it's the disease and situation as a whole, or maybe it's this little nagging issue of "what if" that makes me treasure every little thing about The Boy. Every milestone that he reaches brings me relief, that I'm glad he gets to ask for juice or use the screwdriver or put on his own hat, so that I can be sure to see it.
And, by the way, I won't apologize for bringing you down, if that's what you are thinking after reading this. No one ever asked us, and no one ever said they were sorry for handing our family this giant crap sandwich.
A few days ago it picked up an episode that I'm not sure we want to watch. We weren't in the mood for it when it came up, and perhaps we won't watch this particular episode for awhile. The backstory of the episode is that a patient who had been in the hospital for awhile and was everyone's favorite was supposed to go home after being cured of some sort of disease that had something of a risky treatment. Unfortunately, a bumbling idiot who was being dismissed as an intern ended up giving her an infection by touching a dirty glove and then not washing his hands before shaking her hand to say goodbye.
The episode that we didn't watch begins after this, where we learn that because this patient had gotten an infection, she was going to die. Plain and simple. Nothing could be done for her. It didn't seem as though the hospital staff had any knowledge of how she had gotten infected. The episode deals with the typical grieving process as the woman's death approached and how some of the doctors went through it just as much or more than the patient.
That's all it takes, is one little mistake.
So anyhow, not the most cheerful of posts, and not the most cheerful of topics, but things like this sit there in the back of my mind, as something that we don't talk about much, that we don't address because it's PROBABLY not going to be an issue. There's not much reason to think that The Boy won't be just fine after all this is over, with maybe some aftereffects of one kind or another that are still better than not having had him treated. There's not much cause because the prognosis is still good and his care has been great.
But.
Maybe it's the disease and situation as a whole, or maybe it's this little nagging issue of "what if" that makes me treasure every little thing about The Boy. Every milestone that he reaches brings me relief, that I'm glad he gets to ask for juice or use the screwdriver or put on his own hat, so that I can be sure to see it.
And, by the way, I won't apologize for bringing you down, if that's what you are thinking after reading this. No one ever asked us, and no one ever said they were sorry for handing our family this giant crap sandwich.
Monday, January 19, 2009
I got shoes, you got shoes...
The Boy needed blood and platelets today. Not unexpected. And, in an intelligent move, they split the blood unit so that in case he needed more of it, he could get it on Thursday.
I was going to bring him in Thursday afternoon, but it would actually be smarter to come first thing in the morning and just get more blood, if he needs it, and if not, someone else can have it.
The oncologist recommended that, in order to help with the walking issue, that we keep The Boy in sneakers (or his sweet Buster Brown work boots) frequently. I had always heard the opposite, that children learning to walk should be barefoot. For The Boy, however, he is bigger than most kids learning to walk and, more importantly, he needs the posture correction that shoes provide. Furthermore, the heavy shoes on his feet will help to make him stronger.
Thus, shoes it is.
Long and boring day at the treatment center. So glad that Musical Daddy did not have work and we were able to go through it together.
I was going to bring him in Thursday afternoon, but it would actually be smarter to come first thing in the morning and just get more blood, if he needs it, and if not, someone else can have it.
The oncologist recommended that, in order to help with the walking issue, that we keep The Boy in sneakers (or his sweet Buster Brown work boots) frequently. I had always heard the opposite, that children learning to walk should be barefoot. For The Boy, however, he is bigger than most kids learning to walk and, more importantly, he needs the posture correction that shoes provide. Furthermore, the heavy shoes on his feet will help to make him stronger.
Thus, shoes it is.
Long and boring day at the treatment center. So glad that Musical Daddy did not have work and we were able to go through it together.
Better night, and play value
The Boy slept all the way from 9-ish (a bit more trouble getting him to stay asleep in bed) to 4 AM, at which point he woke up crying and needed comfort.
Not a bad job on the part of The Boy. 5:30 was his usual crawling across the hall into our room.
He squawked a few times before that, but he got himself right back to sleep.
It's a fine line to walk, because if we go in to soothe him right as he squawks, he has no problem. If we don't, he'll either go back to sleep or require more attention.
But...we're getting there.
In other news, this is the greatest toy ever. It is a walk-behind toy, a riding truck, and it has fun music. The Boy has loved it for 7 months now.
Not a bad job on the part of The Boy. 5:30 was his usual crawling across the hall into our room.
He squawked a few times before that, but he got himself right back to sleep.
It's a fine line to walk, because if we go in to soothe him right as he squawks, he has no problem. If we don't, he'll either go back to sleep or require more attention.
But...we're getting there.
In other news, this is the greatest toy ever. It is a walk-behind toy, a riding truck, and it has fun music. The Boy has loved it for 7 months now.
Sunday, January 18, 2009
Rock Out
The Boy likes Rock Band.
See?
He was playing along with us for awhile on his own drum, and really keeping a great steady beat!
One of the chemo meds from the first regimen he was on, the Vincristine, is often responsible for various nerve problems. They do get better after treatment, and he isn't on this stuff anymore, but I am speculating that he has taken the brunt of the side effects in his legs and not in his hands. His manual dexterity continues to astound us.
Notice how his grip on the drumsticks is really pretty good.
See?
He was playing along with us for awhile on his own drum, and really keeping a great steady beat!
One of the chemo meds from the first regimen he was on, the Vincristine, is often responsible for various nerve problems. They do get better after treatment, and he isn't on this stuff anymore, but I am speculating that he has taken the brunt of the side effects in his legs and not in his hands. His manual dexterity continues to astound us.
Notice how his grip on the drumsticks is really pretty good.
Friday, January 16, 2009
The Sticking Point
This one isn't about needles although with such a title, it could be.
Here's where we are in the sleeping thing: The Boy goes to bed and cooperates, usually, except that tonight it took quite a bit longer. But he goes to bed and he sleeps for awhile. He gets up at some point during the earlier end of the middle of the night (a 12 or 1 sort of thing) and is quickly helped back to bed.
The problem comes at about 4 AM. Too early to be considered morning, or even close to wakeup time. 5:30 or 6:00 is morning, and he can come into bed with us at that point even if we're all going back to sleep, which we probably are doing. But this 3:30 or 4 AM thing just isn't going to work. The issue is that unlike the earlier waking, this one doesn't seem to be solvable by a quick re-tucking and that's it. It requires something more along the lines of 15 minutes of sitting with him, which we just can't handle at 4 AM. Or rather, we can't do it anymore because we've been so spoiled by the pleasant sleep that we've been getting with him. I mean, how cool is it that he sleeps until 8:30 AM on the weekends? What toddler does that?
Right now, we're watching Battlestar Galactica. Too busy to keep writing.
Here's where we are in the sleeping thing: The Boy goes to bed and cooperates, usually, except that tonight it took quite a bit longer. But he goes to bed and he sleeps for awhile. He gets up at some point during the earlier end of the middle of the night (a 12 or 1 sort of thing) and is quickly helped back to bed.
The problem comes at about 4 AM. Too early to be considered morning, or even close to wakeup time. 5:30 or 6:00 is morning, and he can come into bed with us at that point even if we're all going back to sleep, which we probably are doing. But this 3:30 or 4 AM thing just isn't going to work. The issue is that unlike the earlier waking, this one doesn't seem to be solvable by a quick re-tucking and that's it. It requires something more along the lines of 15 minutes of sitting with him, which we just can't handle at 4 AM. Or rather, we can't do it anymore because we've been so spoiled by the pleasant sleep that we've been getting with him. I mean, how cool is it that he sleeps until 8:30 AM on the weekends? What toddler does that?
Right now, we're watching Battlestar Galactica. Too busy to keep writing.
Thursday, January 15, 2009
Needles and pins, needles and pins
Today I was to give the last dose of Neupogen in this particular batch before the new package comes tomorrow. The vial was in the fridge, but for the life of me, I couldn't find the needle. The syringe, I should say. So I figured that I'd just go to the pharmacy and see if I could get one.
In the state of New Jersey, you need a prescription for needles.
Not a huge deal--it wasn't as if I couldn't get The Boy's doctor to call in, but at this point it was already after hours. I had to call the answering service and tell them to page the doctor. She called about 20 minutes later; I explained the situation and gave her the number for the pharmacy. She called back and asked me a few more questions, because the pharmacist wanted to know. She also said that she'd phone in a prescription for seven needles. But I only needed one. I know that the delivery is coming tomorrow. With the right number of vials and needles. I just need to administer the last dose. Doctor said that it would cost the same regardless, so I may as well have the needles on hand.
She called back one more time to tell me to go ahead to the pharmacy; they were going to give me one syringe and that would be that.
Didn't cost anything, either. Maybe because we're frequent customers.
It wasn't the same type of syringe that I had been using for this, so I managed to do a poor job of getting the needle in the skin on The Boy and had to re-jab. I may need to practice with that type of needle a few times in case I ever have to use it again.
The Boy has been asleep in his bed for about an hour. I started laundry but have since been sitting on my bum. I will now remove myself from this comfy chair and clean the bathroom...right...now.
In the state of New Jersey, you need a prescription for needles.
Not a huge deal--it wasn't as if I couldn't get The Boy's doctor to call in, but at this point it was already after hours. I had to call the answering service and tell them to page the doctor. She called about 20 minutes later; I explained the situation and gave her the number for the pharmacy. She called back and asked me a few more questions, because the pharmacist wanted to know. She also said that she'd phone in a prescription for seven needles. But I only needed one. I know that the delivery is coming tomorrow. With the right number of vials and needles. I just need to administer the last dose. Doctor said that it would cost the same regardless, so I may as well have the needles on hand.
She called back one more time to tell me to go ahead to the pharmacy; they were going to give me one syringe and that would be that.
Didn't cost anything, either. Maybe because we're frequent customers.
It wasn't the same type of syringe that I had been using for this, so I managed to do a poor job of getting the needle in the skin on The Boy and had to re-jab. I may need to practice with that type of needle a few times in case I ever have to use it again.
The Boy has been asleep in his bed for about an hour. I started laundry but have since been sitting on my bum. I will now remove myself from this comfy chair and clean the bathroom...right...now.
Mr. Up-All-Night
It was another not-too-bad night but not-too-good in terms of The Boy in his bed.
He went to sleep without any issue for Daddy last night, and he stayed asleep until around the time that I was falling asleep, about 11:30. I went in and gave him quick snuggles and hugs as I put him back into bed.
Then he got out of bed again at about 3:00. Crawled across the hallway. Musical Daddy tried to put him back to bed but he was very much awake, so they went out to play for a bit. He asked me to take him after awhile, and I said that it was close enough to morning that we could just bring him in bed with us. This was at 4:00 AM or so. The boy drank some water and then went back to sleep. He stayed asleep even after I got out of bed, allowing me to take my time in taking my shower.
It would be fantastic if The Boy would just stop getting out of bed. And there's no way to reason with him on the subject. What we need to do is return him to his bed ASAP when he gets out. Any hugs and snuggles are to be given in there. Otherwise he'll think that the best thing to do is come across the hall to get attention.
Bed-sharing really did get us the most sleep but it's just not an option. Especially once I get all big and round.
He went to sleep without any issue for Daddy last night, and he stayed asleep until around the time that I was falling asleep, about 11:30. I went in and gave him quick snuggles and hugs as I put him back into bed.
Then he got out of bed again at about 3:00. Crawled across the hallway. Musical Daddy tried to put him back to bed but he was very much awake, so they went out to play for a bit. He asked me to take him after awhile, and I said that it was close enough to morning that we could just bring him in bed with us. This was at 4:00 AM or so. The boy drank some water and then went back to sleep. He stayed asleep even after I got out of bed, allowing me to take my time in taking my shower.
It would be fantastic if The Boy would just stop getting out of bed. And there's no way to reason with him on the subject. What we need to do is return him to his bed ASAP when he gets out. Any hugs and snuggles are to be given in there. Otherwise he'll think that the best thing to do is come across the hall to get attention.
Bed-sharing really did get us the most sleep but it's just not an option. Especially once I get all big and round.
Wednesday, January 14, 2009
Getting out!
Wednesday night is now orchestra night for me, which is great because it gives me something to do where I am surrounded only by adults and can talk (mostly) about normal people things.
It's a pretty good community group. The instrumentation is okay (they could use more cellos, I think, and more violas), and there actually is a bass section, which means I get to have instant friends.
My bass is being repaired, and the guy doing the work was kind enough to lend me an instrument from his shop. It has two thick nylon strings on the D and G and I don't even know what on the A and E. The instrument itself is decent--I had one just like it before I was so fortunate as to acquire my current instrument--but it isn't set up so well, and it sounds a bit like a tin can. And a bit like a guitar--I make fret noises when I shift.
The friend who originally told me about this orchestra (when I was still singing with a chorus on Wednesday nights) correctly predicted the gender of The Boy when I was pregnant with him. This time around, she says girl. My friend The Bari says boy again. I've been getting mixed reviews on this one, whereas last time pretty much everyone said I was having a boy.
Maybe I'm having a hermaphrodite. Hey--the "10 fingers, 10 toes, no tumors" request didn't say anything about any other oddities.
We'll find out in a month what we're having. In the meantime, bring on the speculation. Even though I want a brother for The Boy, I might be getting a sense that I'm having a girl. I picture a girl more often, when I imagine having two children. But I'm experiencing a similar pregnancy to what I had with The Boy, and I'm not showing so much.
It's a pretty good community group. The instrumentation is okay (they could use more cellos, I think, and more violas), and there actually is a bass section, which means I get to have instant friends.
My bass is being repaired, and the guy doing the work was kind enough to lend me an instrument from his shop. It has two thick nylon strings on the D and G and I don't even know what on the A and E. The instrument itself is decent--I had one just like it before I was so fortunate as to acquire my current instrument--but it isn't set up so well, and it sounds a bit like a tin can. And a bit like a guitar--I make fret noises when I shift.
The friend who originally told me about this orchestra (when I was still singing with a chorus on Wednesday nights) correctly predicted the gender of The Boy when I was pregnant with him. This time around, she says girl. My friend The Bari says boy again. I've been getting mixed reviews on this one, whereas last time pretty much everyone said I was having a boy.
Maybe I'm having a hermaphrodite. Hey--the "10 fingers, 10 toes, no tumors" request didn't say anything about any other oddities.
We'll find out in a month what we're having. In the meantime, bring on the speculation. Even though I want a brother for The Boy, I might be getting a sense that I'm having a girl. I picture a girl more often, when I imagine having two children. But I'm experiencing a similar pregnancy to what I had with The Boy, and I'm not showing so much.
Not a bad night, but not super
The Boy got over the first hurdle in sleeping in his own room, which was the panic wakeup after the first sleep cycle. He was asleep at 9-ish and didn't wake up again until about 1. Unfortunately, he was out of bed at that point and needed help to fall back asleep. He was asleep for awhile, then up again at 3:45 and out of bed again. We took turns.
Once again, at 5:45, he was awake, and welcomed into our bed.
It wasn't a bad night, being that it was only the 2nd night (not counting the diaper change night fiasco) that we had put him in there. But since we've been so spoiled by having him in our bed with us, having him find us and go back to sleep, rarely interrupting us, this is a little bit harder.
This process will probably take longer than if we were to just let him cry to go to sleep, or let him cry in the middle of the night, but it's worth it to me to spend the extra time and not let the child with high blood pressure scream for hours.
Once again, at 5:45, he was awake, and welcomed into our bed.
It wasn't a bad night, being that it was only the 2nd night (not counting the diaper change night fiasco) that we had put him in there. But since we've been so spoiled by having him in our bed with us, having him find us and go back to sleep, rarely interrupting us, this is a little bit harder.
This process will probably take longer than if we were to just let him cry to go to sleep, or let him cry in the middle of the night, but it's worth it to me to spend the extra time and not let the child with high blood pressure scream for hours.
Tuesday, January 13, 2009
Dishes your mom
In about five minutes, I will pick myself up from my very comfy chair and do the dishes. I ran the dishwasher earlier and was able to empty it while The Boy played, but I figured that I only had a certain amount of time to do cleaning-things.
As I mentioned, tonight was presenting itself as quite the challenge in terms of getting The Boy to bed on time, because he had a nap so late in the day. Fortunately, I was able to get him to sleep, although it was about 45 minutes later than I would have liked. Oh well.
He looks so sweet when he is asleep. Maybe even more so when he is asleep in the bed, because he looks so little and so grown-up at the same time. He is in a toddler bed, which is low to the ground and uses a crib mattress, but he'll probably be able to use this bed until he is 4 or 5, at which point child #2 will get the toddler bed (assuming that he/she does end up tolerating the crib) and The Boy will get the twin bed that is currently in our storage room behind the garage.
Many parents worry that when they have their second child, the first child will suffer in terms of amount of attention and number of people fussing over him/her. I am much more concerned about the second child. I'm hoping that most of this will be over before either child really can remember any of it. Still, I have a theory about The Boy and his sweet, affectionate nature. I feel like the more love that you give them, the more they'll want to give back.
I'd even go so far as to say that without his disease, he wouldn't have been getting quite as much attention and affection (of course he would from us, but he wouldn't be getting the extra Grandma/Grandpa/Uncle P time) and that because of his disease, he has such an amazing personality. He doesn't really know that he's having toxic chemicals pumped into his body every few weeks. He is vaguely aware of it when doctors and nurses examine him, and he's not keen on the finger sticks or the port accesses. But most of the time, he's just being snuggled and loved and played with, and that is what sticks in his mind.
So, hopefully, we will be able to find a balance, even if we need to call in reinforcements to do it, to be sure that this next little one of ours gets large quantities of affection and attention.
And remember--no offense to The Boy, but can we please have ten fingers, ten toes, no tumors? Kthxbye.
As I mentioned, tonight was presenting itself as quite the challenge in terms of getting The Boy to bed on time, because he had a nap so late in the day. Fortunately, I was able to get him to sleep, although it was about 45 minutes later than I would have liked. Oh well.
He looks so sweet when he is asleep. Maybe even more so when he is asleep in the bed, because he looks so little and so grown-up at the same time. He is in a toddler bed, which is low to the ground and uses a crib mattress, but he'll probably be able to use this bed until he is 4 or 5, at which point child #2 will get the toddler bed (assuming that he/she does end up tolerating the crib) and The Boy will get the twin bed that is currently in our storage room behind the garage.
Many parents worry that when they have their second child, the first child will suffer in terms of amount of attention and number of people fussing over him/her. I am much more concerned about the second child. I'm hoping that most of this will be over before either child really can remember any of it. Still, I have a theory about The Boy and his sweet, affectionate nature. I feel like the more love that you give them, the more they'll want to give back.
I'd even go so far as to say that without his disease, he wouldn't have been getting quite as much attention and affection (of course he would from us, but he wouldn't be getting the extra Grandma/Grandpa/Uncle P time) and that because of his disease, he has such an amazing personality. He doesn't really know that he's having toxic chemicals pumped into his body every few weeks. He is vaguely aware of it when doctors and nurses examine him, and he's not keen on the finger sticks or the port accesses. But most of the time, he's just being snuggled and loved and played with, and that is what sticks in his mind.
So, hopefully, we will be able to find a balance, even if we need to call in reinforcements to do it, to be sure that this next little one of ours gets large quantities of affection and attention.
And remember--no offense to The Boy, but can we please have ten fingers, ten toes, no tumors? Kthxbye.
Product Review: Messeez Car Seat Cover
I searched Google Shopping to find a reasonably-priced, effective car seat cover so that we would, hopefully, not have a repeat performance of the events of a few weeks ago, which involved rather difficult cleaning of the car seat following The Boy's loss of his breakfast on the way to an appointment at the outpatient center. I found the Messeez "One Size Fits All" cover and ended up purchasing it from Shopper's Choice, as you can see from the link.
I have not yet had to truly test the protection factor of the cover. However, it seems like it would do a pretty good job of that. It is made out of similar material to a windbreaker or the outer lining of a light jacket. It is machine washable or can simply be wiped off. Putting on/taking off the cover is very easy. The straps go through slots which are then velcroed shut. No need to thread anything through.
This car seat cover does not quite fit over The Boy's car seat. It hangs onto the edges. We have the Evenflo Triumph Advance in each of our cars. Granted, the EFTA is a pretty large car seat, but it doesn't look much bigger than the Britax Marathon or other such seats. The material is not stretchy, so it is difficult to get it to conform to the right shape. It also isn't soft or cushy, if you're into that sort of thing. The Boy still fell asleep in the car seat today and didn't have complaints.
At somewhere around $20, plus shipping, this is a pretty good buy. If you have multiple car seats, you can buy one cover for each, or you can buy multiple covers so that one can be washed while the other is in use. Many other covers sell for $75 or even $125.
Pros: waterproof, easy to use, inexpensive. Cons: doesn't fit as well over bigger seats, material not so soft.
It's worth the money that you pay for it. I wouldn't pay much more for this product. I am glad to have it, all things considered. Good thing to have, because most toddlers are messy.
I have not yet had to truly test the protection factor of the cover. However, it seems like it would do a pretty good job of that. It is made out of similar material to a windbreaker or the outer lining of a light jacket. It is machine washable or can simply be wiped off. Putting on/taking off the cover is very easy. The straps go through slots which are then velcroed shut. No need to thread anything through.
This car seat cover does not quite fit over The Boy's car seat. It hangs onto the edges. We have the Evenflo Triumph Advance in each of our cars. Granted, the EFTA is a pretty large car seat, but it doesn't look much bigger than the Britax Marathon or other such seats. The material is not stretchy, so it is difficult to get it to conform to the right shape. It also isn't soft or cushy, if you're into that sort of thing. The Boy still fell asleep in the car seat today and didn't have complaints.
At somewhere around $20, plus shipping, this is a pretty good buy. If you have multiple car seats, you can buy one cover for each, or you can buy multiple covers so that one can be washed while the other is in use. Many other covers sell for $75 or even $125.
Pros: waterproof, easy to use, inexpensive. Cons: doesn't fit as well over bigger seats, material not so soft.
It's worth the money that you pay for it. I wouldn't pay much more for this product. I am glad to have it, all things considered. Good thing to have, because most toddlers are messy.
Travelin' Along...
This week I'm a little more tired. Every now and then I remember, "Oh yea, I'm pregnant" and feel that I may have some justification for needing some extra rest.
Yesterday, aside from driving down the street first thing in the morning to take my bass to the repair shop, I didn't leave the house. My mother left after having breakfast with The Boy and me. She took a cab, figuring that she'd spare The Boy the extra car ride, just in case he wasn't feeling well. I did some straightening things around the house, and The Boy had both of his naps in the easy chair, snuggled up with me.
We tried to have him sleep in his own bed on Sunday night, because he was still with the post-chemo toxicity and not so safe to be snuggled up with pregnant me. I could have slept in the bed with him if I were covered in padding, but the added issue of changing the diapers every two hours just made it too difficult. In retrospect, we should have had him sleep with Grandma that night and just take turns going in there to change him. She had chemo already, and even if she hadn't, she's done having kids. But that's neither here nor there. It was a rough night for all involved, trying so hard to get him to settle down and sleep in his bed. Most of the night, he was in the easy chair with Grandma anyway.
Last night, the bed thing was a relative success. We went into his room to play at 7:45. I put on his iPod and read to him a bit. I gave him his vitamin, brushed his teeth, and put him in his pajamas. I read to him some more, put him in the bed, and continued to read. I also tucked in the covers around him. He fell asleep at 8:15. He was up at 9:30, back to sleep for 20 minutes, and then I spent 20 minutes more in there, helping him go back to sleep.
2:45 AM he woke up because somehow he managed to get stuck halfway out of the bed. Back into the bed, a quick tuck and kiss, and he was fine.
5:45 AM, I hear some noises. He's out of bed and in the hallway. Just sitting there. I'm not sure if he sees me. I figure that at this point, it is close enough to morning that he can come into our bed and snuggle. This way, we can easily go back to sleep, which we do until 7:30.
I'm not sure how tonight will go--The Boy slept a bit in the car today, meaning that he didn't much feel like his afternoon nap until about 4:00. That was with us. And he's still sleeping. We had to wake him to give him his Neupogen shot at 5:00, but he snuggled back in pretty quickly. He is still sleeping, so I'm wondering if he'll actually want to go to bed on time.
I'm all for continuing to let him nap with us, and nap wherever, especially if we can get him to sleep in his bed consistently at night. Musical Daddy just lives for those naps with The Boy as well. We'll have to see how it goes with baby #2.
Today, The Boy and I did our mall-walk with Grandpa and stopped quickly at the grocery store. Among the items on the list were chips and dip, of course.
Yesterday, aside from driving down the street first thing in the morning to take my bass to the repair shop, I didn't leave the house. My mother left after having breakfast with The Boy and me. She took a cab, figuring that she'd spare The Boy the extra car ride, just in case he wasn't feeling well. I did some straightening things around the house, and The Boy had both of his naps in the easy chair, snuggled up with me.
We tried to have him sleep in his own bed on Sunday night, because he was still with the post-chemo toxicity and not so safe to be snuggled up with pregnant me. I could have slept in the bed with him if I were covered in padding, but the added issue of changing the diapers every two hours just made it too difficult. In retrospect, we should have had him sleep with Grandma that night and just take turns going in there to change him. She had chemo already, and even if she hadn't, she's done having kids. But that's neither here nor there. It was a rough night for all involved, trying so hard to get him to settle down and sleep in his bed. Most of the night, he was in the easy chair with Grandma anyway.
Last night, the bed thing was a relative success. We went into his room to play at 7:45. I put on his iPod and read to him a bit. I gave him his vitamin, brushed his teeth, and put him in his pajamas. I read to him some more, put him in the bed, and continued to read. I also tucked in the covers around him. He fell asleep at 8:15. He was up at 9:30, back to sleep for 20 minutes, and then I spent 20 minutes more in there, helping him go back to sleep.
2:45 AM he woke up because somehow he managed to get stuck halfway out of the bed. Back into the bed, a quick tuck and kiss, and he was fine.
5:45 AM, I hear some noises. He's out of bed and in the hallway. Just sitting there. I'm not sure if he sees me. I figure that at this point, it is close enough to morning that he can come into our bed and snuggle. This way, we can easily go back to sleep, which we do until 7:30.
I'm not sure how tonight will go--The Boy slept a bit in the car today, meaning that he didn't much feel like his afternoon nap until about 4:00. That was with us. And he's still sleeping. We had to wake him to give him his Neupogen shot at 5:00, but he snuggled back in pretty quickly. He is still sleeping, so I'm wondering if he'll actually want to go to bed on time.
I'm all for continuing to let him nap with us, and nap wherever, especially if we can get him to sleep in his bed consistently at night. Musical Daddy just lives for those naps with The Boy as well. We'll have to see how it goes with baby #2.
Today, The Boy and I did our mall-walk with Grandpa and stopped quickly at the grocery store. Among the items on the list were chips and dip, of course.
Sunday, January 11, 2009
See Ya Bye!!
It's a little after 7 PM and we're home. This was an easy chemo stay--3 days and 2 nights. The oncologist said that this chemo is sometimes done outpatient (although it is mighty long) with older patients, indicating that it isn't that difficult and doesn't require as much extra stuff and monitoring, so the stays for this chemo will usually be like this.
Once again, we count our blessings--"easy" chemo!
We shall see how the rest of the chemo cycle goes. Let's keep the Zofran coming and keep the germies away, and if you have a dance or ritual to do for "no fevers" then please, by all means, do it for The Boy.
Once again, we count our blessings--"easy" chemo!
We shall see how the rest of the chemo cycle goes. Let's keep the Zofran coming and keep the germies away, and if you have a dance or ritual to do for "no fevers" then please, by all means, do it for The Boy.
Counting down the hours, maybe.
The Boy is still doing reasonably well. He did not keep all of his breakfast down, but the doctor was not concerned. She said that sometimes the Carboplatin causes a little extra nausea. He is on Zofran regularly and will continue to take it at home.
It is 1:35 now. His Etoposide, which is the only chemo he is getting today, will be here at 4:00 and will finish at 5:00. They will keep him for a few more hours, to stay hydrated. His dinner will probably take place here, and then we'll get to go home.
That said, I am not completely counting on going home right away, just because...because. It seems more and more likely that we will be, but that's barring any complications. And obviously, we can't really bar any complications. They'll happen or not, regardless of our plans.
Grandma decided to take a cab to the airport tomorrow morning, so that The Boy would be spared the car ride. This means one less chance for there to be any messes in the car. I'm still waiting on the car seat cover that I ordered. A review will also follow, and if I like it, I'll order 1 or 2 more.
They're awake!! Lunch time. Hope for a positive experience...
It is 1:35 now. His Etoposide, which is the only chemo he is getting today, will be here at 4:00 and will finish at 5:00. They will keep him for a few more hours, to stay hydrated. His dinner will probably take place here, and then we'll get to go home.
That said, I am not completely counting on going home right away, just because...because. It seems more and more likely that we will be, but that's barring any complications. And obviously, we can't really bar any complications. They'll happen or not, regardless of our plans.
Grandma decided to take a cab to the airport tomorrow morning, so that The Boy would be spared the car ride. This means one less chance for there to be any messes in the car. I'm still waiting on the car seat cover that I ordered. A review will also follow, and if I like it, I'll order 1 or 2 more.
They're awake!! Lunch time. Hope for a positive experience...
Saturday, January 10, 2009
It's like vacation...almost
It's been such a great few weeks with The Boy. His last inpatient stay and this inpatient stay have been (mostly) uneventful, thank goodness. This stay and the next stay are shorter stays, so it's almost like a reprieve from the last two.
I have been in contact with another family whose daughter is on the same treatment, but much further along, and I was told what to watch out for with this medicine as opposed to the last one (which is probably some of the more horrible stuff out there). We'll definitely be giving Zofran (anti-nausea meds) for a few days after his treatment in order that we keep the pukiness down to a minimum, as they said that the nauseating effects of the Carboplatin can be delayed. They also said that, with regards to neutropenic fevers, there's just no way to tell when they'll happen. They just will. Carboplatin will have more of an effect on his platelet count, for longer. So he may not need a full transfusion, only platelets, or he may need more blood anyway. Whatever--anything for The Boy.
Any time that we get that is similar to the past 3 or 4 weeks with The Boy is a blessing, and it's like a vacation from the other times, when it could be all sickness all day. Even though we still spend plenty of times going to the doctor/hospital, if he is "well" otherwise, the daytime visits are quick. If he requires something that takes longer, like blood, the daytime visits are at least comfortable.
Today was a fine day. Musical Daddy and I slept a little later and went out to breakfast. We met The Boy and Grandma at the hospital in the mid-morning, to find them snuggling and napping. Lots of playing after he woke up, some unfortunate port trouble that made The Boy rather angry, and then I took Grandma out for a break. We went to the dollar store, to Kmart, and then for a nice leisurely lunch. I had onion rings with my lunch. Haven't had those in AGES!! There's just something about steakhouse onion rings--DEEElicious.
Musical Daddy reported that The Boy had eaten roughly half his weight in chicken.
We returned to the hospital and brought The Boy some coloring books, crayons, and stickers. And some potato chips, so that Grandma could hear him asking for "ips" as he saw them. Good idea: coloring in the high chair so that children get used to sitting at a table to color. Bad idea: coloring and eating chips at the same time--you end up with children trying to eat crayons. Overall, the coloring and stickers were a success. The Boy can hold a crayon and draw some lines and scribbles, and he can pick up stickers and put them on things. He doesn't do it often, so he has not yet developed the enthusiasm for it that I'm sure he will.
More playing, including Mommy building towers of stacking cups and The Boy knocking them over. I say "Oh no!" and he puts his hands on his head. It's adorable.
We are now home, because the weather isn't great, and Grandma figured that it was better that we leave while it was a little easier to get home. Besides, she says that she took that class at the Y...
I have been in contact with another family whose daughter is on the same treatment, but much further along, and I was told what to watch out for with this medicine as opposed to the last one (which is probably some of the more horrible stuff out there). We'll definitely be giving Zofran (anti-nausea meds) for a few days after his treatment in order that we keep the pukiness down to a minimum, as they said that the nauseating effects of the Carboplatin can be delayed. They also said that, with regards to neutropenic fevers, there's just no way to tell when they'll happen. They just will. Carboplatin will have more of an effect on his platelet count, for longer. So he may not need a full transfusion, only platelets, or he may need more blood anyway. Whatever--anything for The Boy.
Any time that we get that is similar to the past 3 or 4 weeks with The Boy is a blessing, and it's like a vacation from the other times, when it could be all sickness all day. Even though we still spend plenty of times going to the doctor/hospital, if he is "well" otherwise, the daytime visits are quick. If he requires something that takes longer, like blood, the daytime visits are at least comfortable.
Today was a fine day. Musical Daddy and I slept a little later and went out to breakfast. We met The Boy and Grandma at the hospital in the mid-morning, to find them snuggling and napping. Lots of playing after he woke up, some unfortunate port trouble that made The Boy rather angry, and then I took Grandma out for a break. We went to the dollar store, to Kmart, and then for a nice leisurely lunch. I had onion rings with my lunch. Haven't had those in AGES!! There's just something about steakhouse onion rings--DEEElicious.
Musical Daddy reported that The Boy had eaten roughly half his weight in chicken.
We returned to the hospital and brought The Boy some coloring books, crayons, and stickers. And some potato chips, so that Grandma could hear him asking for "ips" as he saw them. Good idea: coloring in the high chair so that children get used to sitting at a table to color. Bad idea: coloring and eating chips at the same time--you end up with children trying to eat crayons. Overall, the coloring and stickers were a success. The Boy can hold a crayon and draw some lines and scribbles, and he can pick up stickers and put them on things. He doesn't do it often, so he has not yet developed the enthusiasm for it that I'm sure he will.
More playing, including Mommy building towers of stacking cups and The Boy knocking them over. I say "Oh no!" and he puts his hands on his head. It's adorable.
We are now home, because the weather isn't great, and Grandma figured that it was better that we leave while it was a little easier to get home. Besides, she says that she took that class at the Y...
Friday, January 9, 2009
Peek-A-Boo!!!
The Boy is very cute. He still does the cotton ball thing, where he puts the cotton balls in the right place so that they can collect urine in his diapers.And here he is looking through the "window" using a playmat piece.
It's fun.
Wow, I'm scary
We just saw one of the pediatric residents, who will be coming back in an hour to examine The Boy because I refuse to have his nap interrupted.
As soon as he entered the room, I asked him if he was going to touch The Boy. He said that eventually he'd have to examine him. I then asked in my best teacher voice if he had washed his hands.
This gentleman was somewhat difficult to understand, as English is not his first language. Not his fault, but it did complicate the process. I've figured out that the reason for not keeping all of the medical history info from one visit to the next is so that the residents get a chance to practice asking about it, and as a side effect, the parents get to talk about it over and over again.
The resident asked about the history of The Boy's diagnosis and treatment. He didn't seem to understand some of what I was saying, perhaps because he hadn't encountered anything quite like this case before. I spoke slowly.
I think I've got most of the generic questions down: Was he born full-term (yes, and then some)? Normal delivery (for those too squeamish to say "vaginal" delivery. It was an induction, no other drugs, no complications)? Developmentally okay (mostly, except that he doesn't walk yet, and we can probably thank the nerve damage from the Vincristine for that)? Vaccinations up to date (hey brainy--he's on chemo. No, they're not)?
Then there was a brief family medical history, where I got to answer yes to all of the questions.
He said that he'd have to examine The Boy now, to which I responded that The Boy needed a nap and he'd have to come back later. He scurried away.
As soon as he entered the room, I asked him if he was going to touch The Boy. He said that eventually he'd have to examine him. I then asked in my best teacher voice if he had washed his hands.
This gentleman was somewhat difficult to understand, as English is not his first language. Not his fault, but it did complicate the process. I've figured out that the reason for not keeping all of the medical history info from one visit to the next is so that the residents get a chance to practice asking about it, and as a side effect, the parents get to talk about it over and over again.
The resident asked about the history of The Boy's diagnosis and treatment. He didn't seem to understand some of what I was saying, perhaps because he hadn't encountered anything quite like this case before. I spoke slowly.
I think I've got most of the generic questions down: Was he born full-term (yes, and then some)? Normal delivery (for those too squeamish to say "vaginal" delivery. It was an induction, no other drugs, no complications)? Developmentally okay (mostly, except that he doesn't walk yet, and we can probably thank the nerve damage from the Vincristine for that)? Vaccinations up to date (hey brainy--he's on chemo. No, they're not)?
Then there was a brief family medical history, where I got to answer yes to all of the questions.
He said that he'd have to examine The Boy now, to which I responded that The Boy needed a nap and he'd have to come back later. He scurried away.
Consider the ball officially rolling
The Boy and I met Grandpa at the hospital at 8:00 to get him admitted. The pre-chemo proceedings took place relatively easily, with just a little port access issue that required a second needle, and the chemo itself began at 12:00 on the dot.
We're on the even numbers for diaper changes.
Amazingly enough, The Boy is sleeping in the crib. I didn't try putting the rail up, because it's darned noisy and will wake him up. I snuggled up next to him and read about half a chapter of Charlotte's Web before he conked out. I finished the chapter, for sleepiness insurance, and climbed out of the crib.
Scratch that--now he's awake, at least temporarily, because one of the door alarms is beeping.
How frustrating.
Anyhow, I'll keep the updates coming, as per usual.
We're on the even numbers for diaper changes.
Amazingly enough, The Boy is sleeping in the crib. I didn't try putting the rail up, because it's darned noisy and will wake him up. I snuggled up next to him and read about half a chapter of Charlotte's Web before he conked out. I finished the chapter, for sleepiness insurance, and climbed out of the crib.
Scratch that--now he's awake, at least temporarily, because one of the door alarms is beeping.
How frustrating.
Anyhow, I'll keep the updates coming, as per usual.
Thursday, January 8, 2009
Gearing up again
Tomorrow morning we go in for The Boy's chemo #3. It's 3 out of 30. So we're making progress.
It is possible that it will just be three days and two nights this time. That's the "norm" for this chemo. I'm hoping for him to be discharged "on time" but I won't be surprised, or TOO disappointed, if he isn't. I can't get too bummed out if things don't go exactly right because, as you see, not everything does. If everything went right all the time, I wouldn't be writing this blog.
One of the infusions is six hours, on the first and second day. The other is the one that he gets each time he has chemo, which is a one hour infusion with his blood pressure taken every 15 minutes. This isn't so much fun because the nurses try to put the cuff on and leave it on a timer and you KNOW that The Boy won't keep that cuff on while he is busy playing.
I am excited that my mother is coming in again. Her commitment is amazing. It's almost as if she wants David's chemo time to be a break for us. Not the whole time, of course, but she wants us to be able to go out, and we get the house to ourselves while she stays with The Boy.
It's been a reasonable 4 days with The Boy, being at home, not working. I miss work. I miss my kids. I saw a tin of cookies given to me by one of my little girls at school. Hopefully I'll get to see a concert in the spring, although by then I'll be as big as a house, and I never even got to tell the kids that I am pregnant again. If any of them read my blog, which I doubt, they can tell each other.
I was good this week about cleaning. I did the dishes when I was supposed to, I kept the floors clean in the areas where The Boy plays, and I put his toys away almost every day. Right now, though, I'm not feelin' it. I think I'll straighten up tomorrow after I leave the hospital.
It is possible that it will just be three days and two nights this time. That's the "norm" for this chemo. I'm hoping for him to be discharged "on time" but I won't be surprised, or TOO disappointed, if he isn't. I can't get too bummed out if things don't go exactly right because, as you see, not everything does. If everything went right all the time, I wouldn't be writing this blog.
One of the infusions is six hours, on the first and second day. The other is the one that he gets each time he has chemo, which is a one hour infusion with his blood pressure taken every 15 minutes. This isn't so much fun because the nurses try to put the cuff on and leave it on a timer and you KNOW that The Boy won't keep that cuff on while he is busy playing.
I am excited that my mother is coming in again. Her commitment is amazing. It's almost as if she wants David's chemo time to be a break for us. Not the whole time, of course, but she wants us to be able to go out, and we get the house to ourselves while she stays with The Boy.
It's been a reasonable 4 days with The Boy, being at home, not working. I miss work. I miss my kids. I saw a tin of cookies given to me by one of my little girls at school. Hopefully I'll get to see a concert in the spring, although by then I'll be as big as a house, and I never even got to tell the kids that I am pregnant again. If any of them read my blog, which I doubt, they can tell each other.
I was good this week about cleaning. I did the dishes when I was supposed to, I kept the floors clean in the areas where The Boy plays, and I put his toys away almost every day. Right now, though, I'm not feelin' it. I think I'll straighten up tomorrow after I leave the hospital.
Wednesday, January 7, 2009
One more item off the list
The stent was removed today. The whole not eating for 6 hours thing was really not that bad for The Boy. The procedure itself was pretty simple, albeit a real leg-crosser for the gentlemen. They inserted a little tube into The Boy's penis. It had a camera and a grabby-thing at the end, and that's how they got the stent out. And no, the doctors did not say "grabby-thing" when describing the procedure. He was sedated for this procedure. Good thing too. He's already going to have nightmares about the double-catheter that happened during his first inpatient chemo admission.
His eyelashes are starting to come back in. I'm not so thrilled about that because I don't see them lasting; I rather envision him shedding little stubbly eyelashes every few weeks and hoping that they don't end up in his eyes. Eeek.
Mall-walking with Grandpa this afternoon, which was the primary activity used to pass the time until the hospital visit. We walked for quite awhile, then rested, then walked some more.
There was going to be a playdate with one of the mom's groups, but the host's kid was sick so she cancelled. Shame, too, because this is a good week for The Boy to socialize, what with having high counts and all.
His eyelashes are starting to come back in. I'm not so thrilled about that because I don't see them lasting; I rather envision him shedding little stubbly eyelashes every few weeks and hoping that they don't end up in his eyes. Eeek.
Mall-walking with Grandpa this afternoon, which was the primary activity used to pass the time until the hospital visit. We walked for quite awhile, then rested, then walked some more.
There was going to be a playdate with one of the mom's groups, but the host's kid was sick so she cancelled. Shame, too, because this is a good week for The Boy to socialize, what with having high counts and all.
Tuesday, January 6, 2009
Menu
One of the only things that I truly found to be brilliant about the hospital in Philadelphia (by the way...none of The Boy's treatments are taking place there. He had one surgery there which required WAY too many visits, but we don't have to go back anymore) is the food service. For the patients, that is. All that had to be done was you pick up your hospital phone and dial 4-FOOD and about 45 minutes later you get food. If your child has dietary restrictions, the system keeps that in there too...so the child who is supposed to be on clears can't order himself a bologna sandwich. One of the drawbacks is that they have restrictions on the menu for little kids, like The Boy, but they are not written in. I tried to order him an omelette, because he eats them frequently, but they don't make them for little kids; he got scrambled eggs and cheese instead. As I sit here enjoying breakfast-for-dinner with The Boy because I just didn't feel like making anything else, I am also remembering that from this menu, using this system, breakfast could be ordered at any time of the day.
Overall, though, this menu system is useful, because if you have a child who is sick or in recovery and the only thing that they really want to eat is pancakes, your child can have pancakes all day.
At the hospital where The Boy is being treated, meals are served at a certain time and while you can order at additional times, there's no guarantee that it will arrive when you want it. A menu needs to be filled out in advance. On the breakfast tray, you make selections for that night's dinner, the next day's breakfast, and the next day's lunch. I have no idea what I'm having for breakfast tomorrow; how can I be expected to know what The Boy is having? Admittedly, even with his occasional stomach issues, he isn't a picky eater and will usually eat what is in front of him, especially if he is hungry enough.
Overall, though, this menu system is useful, because if you have a child who is sick or in recovery and the only thing that they really want to eat is pancakes, your child can have pancakes all day.
At the hospital where The Boy is being treated, meals are served at a certain time and while you can order at additional times, there's no guarantee that it will arrive when you want it. A menu needs to be filled out in advance. On the breakfast tray, you make selections for that night's dinner, the next day's breakfast, and the next day's lunch. I have no idea what I'm having for breakfast tomorrow; how can I be expected to know what The Boy is having? Admittedly, even with his occasional stomach issues, he isn't a picky eater and will usually eat what is in front of him, especially if he is hungry enough.
The new deal
Yesterday and today have been fine days. I have not been climbing-the-walls bored, nor have I been overwhelmed with too much. My approach to housework and cleaning has become "just do it now so you don't have to look at it later" and it works pretty well. The Boy has been a pleasure to be around, and it's really not that bad.
He had an appointment yesterday for bloodwork. I was preparing to ask them if I could go out grocery shopping and have them call me with the numbers, or if they needed The Boy to come back. As it turned out, because they didn't have me sign a certain form again, he could not have his blood analyzed at the hospital that week, and they had to send it out. Meaning that it wouldn't be ready that day anyway. It's still not ready today as of 11AM. The doctor is confident that his counts are fine, but since we didn't have numbers, they had me give Neupogen again today, just in case. I hate to waste the dose if it wasn't needed but if it was, it's crucial.
Today he had an ultrasound to determine his readiness for the stent removal. He's ready. The ultrasound was also fine. The bad news is that the only time that this can be done is at 5:00 PM. The procedure has to be done this week, so that he can have it done before his chemo this weekend. Yes, boys and girls, a procedure that requires sedation, at 5:00 PM. They said 6 hours of no food (which is better than 8, I guess) and he could have clear liquids until 3:00. Oooo goody! A hungry toddler all afternoon!!!
In other news, we're 3 for 3 in the napping department. He is napping in his bed. Not only that, but I left his room today while he was still awake, because he waved bye-bye at me. I figured that might have been my cue, and I was actually correct.
He had an appointment yesterday for bloodwork. I was preparing to ask them if I could go out grocery shopping and have them call me with the numbers, or if they needed The Boy to come back. As it turned out, because they didn't have me sign a certain form again, he could not have his blood analyzed at the hospital that week, and they had to send it out. Meaning that it wouldn't be ready that day anyway. It's still not ready today as of 11AM. The doctor is confident that his counts are fine, but since we didn't have numbers, they had me give Neupogen again today, just in case. I hate to waste the dose if it wasn't needed but if it was, it's crucial.
Today he had an ultrasound to determine his readiness for the stent removal. He's ready. The ultrasound was also fine. The bad news is that the only time that this can be done is at 5:00 PM. The procedure has to be done this week, so that he can have it done before his chemo this weekend. Yes, boys and girls, a procedure that requires sedation, at 5:00 PM. They said 6 hours of no food (which is better than 8, I guess) and he could have clear liquids until 3:00. Oooo goody! A hungry toddler all afternoon!!!
In other news, we're 3 for 3 in the napping department. He is napping in his bed. Not only that, but I left his room today while he was still awake, because he waved bye-bye at me. I figured that might have been my cue, and I was actually correct.
Monday, January 5, 2009
Bed.
It's been quite the interesting back and forth in terms of where The Boy is expected to sleep. The crib, which wasn't really a major problem, became one when he was 5 or 6 months old. This was when he decided that naps with Daddy were the only way to go, and sleeping with Mommy at night was the easiest way to get snacks all night.
Our initial efforts to get him back into the crib were foiled by a silly little tumor. If you call 10% of his body weight little. Here are the old posts on the sleep training topic, and you'll see that while we made it part of the way through some sort of process, we didn't finish.
Following his initial hospital stay, he sometimes spent time in his crib, and sometime not. We tried, on various other occasions, to get him to sleep in a crib, either at the hospital or at home. It didn't happen. He seemed to be petrified of the thing. As soon as he was placed in there, he'd turn over, pull up to standing, and howl.
We decided to go with the toddler bed, but we really didn't rush to put him in there. We tried a few times, but the reaction was mostly unfavorable.
I decided that since I'd be home with The Boy starting today, I'd work on the bed thing. I figured that we'd try one nap a day in his bed, with any other resting and sleeping occurring wherever he wanted. He has a hospital stay coming up, and he gets to stay in bed with Gran
dma or Daddy, or Mommy when he isn't chemo-toxic. It isn't worth it to us to put him in the crib for hospital stays, unless he'll actually tolerate it, which I doubt. But then after the hospital stay, we'll start trying to have him sleep in his bed at night as well.
The Boy had a nap in his bed yesterday, and today, so we're 2 for 2.
Tomorrow is an ultrasound for him, to see if he is ready to have his stent removed. If he is ready, the procedure--outpatient--will take place on Wednesday. The doctor in Philadelphia had said that 6 weeks was about the time that he'd need to have it in; it's been 2 months that he has had it in, so we were concerned. The Boy's oncologist said "I'm not sure why you thought it would be 6 weeks; people often have stents in for longer than that, and they stay in for as long as they are needed." I'll chalk it up to another medical item relating to Philadelphia that makes no sense.
Our initial efforts to get him back into the crib were foiled by a silly little tumor. If you call 10% of his body weight little. Here are the old posts on the sleep training topic, and you'll see that while we made it part of the way through some sort of process, we didn't finish.
Following his initial hospital stay, he sometimes spent time in his crib, and sometime not. We tried, on various other occasions, to get him to sleep in a crib, either at the hospital or at home. It didn't happen. He seemed to be petrified of the thing. As soon as he was placed in there, he'd turn over, pull up to standing, and howl.
We decided to go with the toddler bed, but we really didn't rush to put him in there. We tried a few times, but the reaction was mostly unfavorable.
I decided that since I'd be home with The Boy starting today, I'd work on the bed thing. I figured that we'd try one nap a day in his bed, with any other resting and sleeping occurring wherever he wanted. He has a hospital stay coming up, and he gets to stay in bed with Gran
dma or Daddy, or Mommy when he isn't chemo-toxic. It isn't worth it to us to put him in the crib for hospital stays, unless he'll actually tolerate it, which I doubt. But then after the hospital stay, we'll start trying to have him sleep in his bed at night as well.The Boy had a nap in his bed yesterday, and today, so we're 2 for 2.
Tomorrow is an ultrasound for him, to see if he is ready to have his stent removed. If he is ready, the procedure--outpatient--will take place on Wednesday. The doctor in Philadelphia had said that 6 weeks was about the time that he'd need to have it in; it's been 2 months that he has had it in, so we were concerned. The Boy's oncologist said "I'm not sure why you thought it would be 6 weeks; people often have stents in for longer than that, and they stay in for as long as they are needed." I'll chalk it up to another medical item relating to Philadelphia that makes no sense.
Saturday, January 3, 2009
Triumph (not the dog)!
Today was another rather good day. I like those days.
We all stayed in bed for quite awhile this morning. Took us awhile to get moving. For some reason, I woke up at 4:00 AM and tossed and turned trying to get back to sleep, finally succeeding sometime around 5:15 AM. So when the 8:15 AM tackles happened, I just wasn't ready.
We went out for breakfast at the diner, something that we hadn't done as a family in awhile, because it's just not a great idea to do with a boy who doesn't have much immunity, to go to a restaurant and have him sit in a high chair that other people use and mess up. In retrospect, we may have felt better using his booster chair from home (this one although you bet your booties grandma that I didn't pay that price for it) or, even, just putting him in a booster seat, as he is getting to that point where he can handle it. We brought our wipes (actually, I had them in the car, which wasn't a good idea, seeing as how they FROZE) and cleaned the chair and the tabletop before putting The Boy in there.
He ate from a plate, like a big man, instead of requiring his placemat. One less cleaning item for us. He ate every piece and scrap of scrambled eggs with ketchup, about half of the potatoes on his plate, and a few bites of my pancakes. He also drank some water and some juice. Side note: I think that he likes orange juice, so I'll have to get it for him next time. Not that he doesn't like apple juice, but if he is in good condition stomach-wise, I think that orange juice has more to it.
We spent several hours after that doing various forms of relaxing and puttering around. Someone was supposed to come over around lunchtime, but since he wasn't feeling well, he un-invited himself.
We got rid of three items by way of Freecycle today, which is great. If you're not familiar with it, it's sort of like an online swap meet. You can either offer things that you'd like to get rid of, or you can post items for which you are searching. Whomever is receiving the item is the one who does the pickup...so people come to your house and take stuff that you don't need. Mostly, I've been getting rid of stuff. It's perfect if you don't really want to throw things away, because they may be in decent condition, but you don't want to keep or store them.
Some friends came over--Musical Daddy's best friend and his best friend's wife. Of course, they're close like family to us, so The Boy will call them Aunt L and Uncle B. Throughout most of their visit, The Boy was either sleeping or a bit more on the snuggly side. He didn't have any interest in the Mexican food that we had for dinner, but he did eat some of his steak and potatoes and broccoli leftovers.
The farewell was simply precious. He was waving bye-bye, he blew some kisses, and he actually said "bye-bye!" Naturally, we couldn't get him to say it again but 4 adults did hear him say it.
So sweet.
Very minor temperature scare, but fortunately, once again, it came back down after he had calmed down from being upset, probably still about his teeth.
We all stayed in bed for quite awhile this morning. Took us awhile to get moving. For some reason, I woke up at 4:00 AM and tossed and turned trying to get back to sleep, finally succeeding sometime around 5:15 AM. So when the 8:15 AM tackles happened, I just wasn't ready.
We went out for breakfast at the diner, something that we hadn't done as a family in awhile, because it's just not a great idea to do with a boy who doesn't have much immunity, to go to a restaurant and have him sit in a high chair that other people use and mess up. In retrospect, we may have felt better using his booster chair from home (this one although you bet your booties grandma that I didn't pay that price for it) or, even, just putting him in a booster seat, as he is getting to that point where he can handle it. We brought our wipes (actually, I had them in the car, which wasn't a good idea, seeing as how they FROZE) and cleaned the chair and the tabletop before putting The Boy in there.
He ate from a plate, like a big man, instead of requiring his placemat. One less cleaning item for us. He ate every piece and scrap of scrambled eggs with ketchup, about half of the potatoes on his plate, and a few bites of my pancakes. He also drank some water and some juice. Side note: I think that he likes orange juice, so I'll have to get it for him next time. Not that he doesn't like apple juice, but if he is in good condition stomach-wise, I think that orange juice has more to it.
We spent several hours after that doing various forms of relaxing and puttering around. Someone was supposed to come over around lunchtime, but since he wasn't feeling well, he un-invited himself.
We got rid of three items by way of Freecycle today, which is great. If you're not familiar with it, it's sort of like an online swap meet. You can either offer things that you'd like to get rid of, or you can post items for which you are searching. Whomever is receiving the item is the one who does the pickup...so people come to your house and take stuff that you don't need. Mostly, I've been getting rid of stuff. It's perfect if you don't really want to throw things away, because they may be in decent condition, but you don't want to keep or store them.
Some friends came over--Musical Daddy's best friend and his best friend's wife. Of course, they're close like family to us, so The Boy will call them Aunt L and Uncle B. Throughout most of their visit, The Boy was either sleeping or a bit more on the snuggly side. He didn't have any interest in the Mexican food that we had for dinner, but he did eat some of his steak and potatoes and broccoli leftovers.
The farewell was simply precious. He was waving bye-bye, he blew some kisses, and he actually said "bye-bye!" Naturally, we couldn't get him to say it again but 4 adults did hear him say it.
So sweet.
Very minor temperature scare, but fortunately, once again, it came back down after he had calmed down from being upset, probably still about his teeth.
Friday, January 2, 2009
I feel good! (na na na na na na na)
This morning my parents left, meaning that it was time to return to real people land in which Grandma isn't there to offer snuggles for The Boy and moral support for me. And other brands of help for which I am so thankful. My father is also a great person to have around. He's the type that has no problem running out on random errands, but he's also so nice to sit and have a conversation with.
So they're gone for a few hours, and then Musical Daddy turns on the faucet in the bathroom and says "um...we have no water pressure in here." Craaaaaaaaapppp. Sure enough, he went out into the garage and I heard the sound of water spraying on cement. Did I mention, craaaaaappp.
He called his father to ask for help. He found the valve for shutting off the water, and...we wait. His father arrived, assessed the situation, and it was off to Home Depot. I picked up the toys and ran the vacuum in the living room area because those jobs perpetually need to be done, and I need to do a better job of doing them. My friend The Bari arrived around this time, as we had made plans for her to come over just to come over, pretty much.
The gentlemen were gone...and then the HVAC guy came over, because he did have an appointment after all, to discuss the new heating and cooling system that they had devised for us, because we need one. I am intelligent and knowledgeable enough to sit down with the guy for ten minutes while he talks about equipment and leaves the relevant literature until Musical Daddy and his father returned, so rather than reschedule (as he could see that we were in quite a state), I sat down with him and Bari (which isn't a bad girl's name anyway but obviously not her real name) took charge with The Boy.
Another bonus was that Musical Daddy ran into one of the local plumbers while at Home Depot, so he got help within the next hour in repairing the burst pipe.
All of that worked out just fine. We got sandwiches for everyone, and then she and I, and The Boy, had a chance to sit down and just socialize. We caught up a bit on what's going on in each other's lives. I told her about my sisters, and my brother, and explained everything behind the "Please don't burn down my kitchen" song. I asked about the quartet (as I sang with her for close to two years; when life became too complicated for me, they replaced me) and the choruses. She was thrilled about Musical Daddy's current employment situation. She indicated that she'd be available to give me a hand from time to time and even to "house-sit" if we wanted to make the HVAC appointment during a time when The Boy is in the hospital.
Not a bad idea anyway, to have the HVAC work done while The Boy is out of the house. Spares him from being around the extra people and the extra noise.
Musical Daddy finished dealing with the pipe issue. It required some new insulation. I sorted laundry and amused The Boy. And he amused me. He's pretty darned funny. We didn't nap even though it was around his normal nap time, but we did snuggle up and have some crazy baby time, in which he pounces on me repeatedly.
Three other friends came over a little while later and said that they had about an hour to do some housework, so GO TEAM. I spent more time containing and redirecting The Boy than participating in the housework, although I did do some straightening, particularly of The Boy's bookshelf. So much work was done in that time, and we are so thrilled with our friends. Even just to have a few people help every now and then makes a huge difference. In addition to the cleaning, one friend installed some good baby-proofing items that we really should have had before, but especially now that we'll have two little imps in the house, we'll need to have that much more protection.
Babyproofing, as you know and as Musical Daddy has explained on numerous occasions, is not in any way a substitute for adequate supervision. Nor is there any expectation that an intelligent toddler can't foil your efforts in this regard. Babyproofing merely gives you enough time to get to the kid and stop him from doing whatever it was that the babyproofing device was supposed to stop him from doing in the first place.
We spent some time playing in The Boy's room (we'd like to get him acclimated to the room again and sleeping in his bed there; in the hospital, he can still sleep in bed with whomever stays with him that night). We then snuggled up back in our bed. I read him "One Fish Two Fish" and he was asleep right around the part where Ned doesn't like his little bed. I was even able to sneak my way out of the room to prepare dinner. I just heard a peep from him, but I think he has gone back to sleep for now.
The Boy does get enough sleep, and usually his sleeping schedule works just fine for us. These days, while it's Winter Vacation for Musical Daddy (and it would be for me too, if I were actually going back to work) he'll go to sleep around 9:30 or 10:00 and wake up around 8:30 or 9:00 AM. He'll take a nap or two during the day as well. No complaints there. I'm hoping to shift us to maybe a 7:00 AM wakeup time so that during the week, we can have breakfast together. He'll usually sleep longer on the weekends anyway. Furthermore, we'll soon have 8:00 AM mall-walking appointments with Grandpa (Musical Daddy's father; mall-walking isn't really my dad's thing although I bet he'd like it too).
So they're gone for a few hours, and then Musical Daddy turns on the faucet in the bathroom and says "um...we have no water pressure in here." Craaaaaaaaapppp. Sure enough, he went out into the garage and I heard the sound of water spraying on cement. Did I mention, craaaaaappp.
He called his father to ask for help. He found the valve for shutting off the water, and...we wait. His father arrived, assessed the situation, and it was off to Home Depot. I picked up the toys and ran the vacuum in the living room area because those jobs perpetually need to be done, and I need to do a better job of doing them. My friend The Bari arrived around this time, as we had made plans for her to come over just to come over, pretty much.
The gentlemen were gone...and then the HVAC guy came over, because he did have an appointment after all, to discuss the new heating and cooling system that they had devised for us, because we need one. I am intelligent and knowledgeable enough to sit down with the guy for ten minutes while he talks about equipment and leaves the relevant literature until Musical Daddy and his father returned, so rather than reschedule (as he could see that we were in quite a state), I sat down with him and Bari (which isn't a bad girl's name anyway but obviously not her real name) took charge with The Boy.
Another bonus was that Musical Daddy ran into one of the local plumbers while at Home Depot, so he got help within the next hour in repairing the burst pipe.
All of that worked out just fine. We got sandwiches for everyone, and then she and I, and The Boy, had a chance to sit down and just socialize. We caught up a bit on what's going on in each other's lives. I told her about my sisters, and my brother, and explained everything behind the "Please don't burn down my kitchen" song. I asked about the quartet (as I sang with her for close to two years; when life became too complicated for me, they replaced me) and the choruses. She was thrilled about Musical Daddy's current employment situation. She indicated that she'd be available to give me a hand from time to time and even to "house-sit" if we wanted to make the HVAC appointment during a time when The Boy is in the hospital.
Not a bad idea anyway, to have the HVAC work done while The Boy is out of the house. Spares him from being around the extra people and the extra noise.
Musical Daddy finished dealing with the pipe issue. It required some new insulation. I sorted laundry and amused The Boy. And he amused me. He's pretty darned funny. We didn't nap even though it was around his normal nap time, but we did snuggle up and have some crazy baby time, in which he pounces on me repeatedly.
Three other friends came over a little while later and said that they had about an hour to do some housework, so GO TEAM. I spent more time containing and redirecting The Boy than participating in the housework, although I did do some straightening, particularly of The Boy's bookshelf. So much work was done in that time, and we are so thrilled with our friends. Even just to have a few people help every now and then makes a huge difference. In addition to the cleaning, one friend installed some good baby-proofing items that we really should have had before, but especially now that we'll have two little imps in the house, we'll need to have that much more protection.
Babyproofing, as you know and as Musical Daddy has explained on numerous occasions, is not in any way a substitute for adequate supervision. Nor is there any expectation that an intelligent toddler can't foil your efforts in this regard. Babyproofing merely gives you enough time to get to the kid and stop him from doing whatever it was that the babyproofing device was supposed to stop him from doing in the first place.
We spent some time playing in The Boy's room (we'd like to get him acclimated to the room again and sleeping in his bed there; in the hospital, he can still sleep in bed with whomever stays with him that night). We then snuggled up back in our bed. I read him "One Fish Two Fish" and he was asleep right around the part where Ned doesn't like his little bed. I was even able to sneak my way out of the room to prepare dinner. I just heard a peep from him, but I think he has gone back to sleep for now.
The Boy does get enough sleep, and usually his sleeping schedule works just fine for us. These days, while it's Winter Vacation for Musical Daddy (and it would be for me too, if I were actually going back to work) he'll go to sleep around 9:30 or 10:00 and wake up around 8:30 or 9:00 AM. He'll take a nap or two during the day as well. No complaints there. I'm hoping to shift us to maybe a 7:00 AM wakeup time so that during the week, we can have breakfast together. He'll usually sleep longer on the weekends anyway. Furthermore, we'll soon have 8:00 AM mall-walking appointments with Grandpa (Musical Daddy's father; mall-walking isn't really my dad's thing although I bet he'd like it too).
Thursday, January 1, 2009
Fit fit fit fit fit
The Boy has been in a pretty lousy mood for most of the day. He's teething. I see all four canines coming in. His temperature isn't high, so we've been giving him Tylenol (if he has a temperature, it could be some sort of infection, so we can't give Tylenol and we should instead call the doctor and possibly go to the ER).
A few things have helped, temporarily, aside from the Tylenol, but basically, he's throwing a total fit.
A perfectly normal thing for a kid his age to do.
A few things have helped, temporarily, aside from the Tylenol, but basically, he's throwing a total fit.
A perfectly normal thing for a kid his age to do.
Resolutions? Feh.
I'd like to do a few things this year that I didn't do as much of last year. One is to read a few more books, as in, actual paper books. Either for myself, or for The Boy. The other is to go for more walks, mostly with The Boy. While the weather is more frightful, we'll go to the malls and walk inside. The third item on the agenda is to see people. I'll have to be careful with that, because sometimes company is not such a great thing for The Boy.
Beyond that, I really don't think that this is the time in my life to go on any great journeys of self-discovery or to go on a mission to fix everything that is wrong with me. I'm really doing fine in that regard. I know what my issues are. It will be mighty interesting, over the next few years, to see how different I become just as a result of our circumstances.
Beyond that, I really don't think that this is the time in my life to go on any great journeys of self-discovery or to go on a mission to fix everything that is wrong with me. I'm really doing fine in that regard. I know what my issues are. It will be mighty interesting, over the next few years, to see how different I become just as a result of our circumstances.
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