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.
Tuesday, January 6, 2009
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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