The concept: a way for kids to use markers and fingerpaint without there being a risk of making a mess other places, like the wall or the sofa. The colors will only show up on the special Color Wonder paper. It comes with a Color Wonder coloring book and another set of plain Color Wonder paper, as well as 6 markers and 6 fingerpaint colors. In theory, this is a great idea--markers and paints that won't decrease the value of your home.
It says for ages 3 and up but if your child doesn't put everything in his mouth and you supervise the activity, it is fine for younger kids who should be working on fine motor skills.
The color wonder markers and fingerpaints do work on the special paper, but it doesn't show up right away. It takes even longer for the fingerpaints than for the markers, but in both cases it is difficult to know exactly what you've drawn.
The fingerpaint doesn't quite have the consistency of fingerpaint. It is more waxy. Like a partially melted candle, but greasier. I'm not sure I would want that stuff on my sofa either.
Also, with the set that we bought, the Go Diego Go set, the colors aren't great. It comes with brown, peach, orange, green, light blue, and dark blue markers. The fingerpaints are blue, orange, light green, brown, grey, and pink.
It isn't terrifically expensive and may be worth a try but personally, I'd rather that The Boy stick with crayons for now, because they aren't too messy either and he can see what he has drawn without waiting for the color to show up. It toys with his sense of cause and effect not to be able to see the colors.
Tuesday, March 3, 2009
Monday, March 2, 2009
PT
Not to be confused with Potty Training.
The Boy had his first physical therapy session today. As I expected, her main focus with him is going to be on walking. He was relatively cooperative, and, more importantly, he did a lot of things that showed her exactly what skills he had and what issues he was facing.
As far as issues go, the dropped foot is definitely evident. As we suspected. It isn't that severe, but when he picks up his feet to move around, his foot turns down more than it should.
The therapist said that he demonstrates a lot of walking and motor skills that are more advanced than most early walkers. He stands on tiptoes to reach things and has no problem squatting down and standing back up while holding on. He has, a few times, done that without holding on. Furthermore, he was able to push up from the floor to standing not very long after he started taking steps. Because he was pretty close to walking at the time of his diagnosis, at 10 months old, she thinks that he continued to grow and learn but that there was a disconnect between the other skills that he learned while holding on or using push toys and actually being able to let go and walk. His body was too busy just trying to make it through chemo to worry about silly little things like walking.
Overall her attitude seemed to match ours, that we were pretty sure he'd be okay but that he'd need a little extra help and that it made a lot of sense to have him followed to be sure that he stays on track.
She had a few things that she wanted us to work on with him. To strengthen the legs and encourage him to do "squats" she placed a wood puzzle on a chair and put the pieces on the floor. He wasn't having that at first but he did come back to it. He plays with magnets on the fridge and often does the same thing. Also, when he plays while sitting on my lap, she said to turn his feet so that they are flat on the floor. That way he is more likely to stand up from there. A stepstool would also accomplish the same thing.
So that went well, and I feel like it will be pretty easy to do what she suggests. Having the therapists come makes us more aware of what sorts of things he needs to work on in order to stay on track.
The Boy had his first physical therapy session today. As I expected, her main focus with him is going to be on walking. He was relatively cooperative, and, more importantly, he did a lot of things that showed her exactly what skills he had and what issues he was facing.
As far as issues go, the dropped foot is definitely evident. As we suspected. It isn't that severe, but when he picks up his feet to move around, his foot turns down more than it should.
The therapist said that he demonstrates a lot of walking and motor skills that are more advanced than most early walkers. He stands on tiptoes to reach things and has no problem squatting down and standing back up while holding on. He has, a few times, done that without holding on. Furthermore, he was able to push up from the floor to standing not very long after he started taking steps. Because he was pretty close to walking at the time of his diagnosis, at 10 months old, she thinks that he continued to grow and learn but that there was a disconnect between the other skills that he learned while holding on or using push toys and actually being able to let go and walk. His body was too busy just trying to make it through chemo to worry about silly little things like walking.
Overall her attitude seemed to match ours, that we were pretty sure he'd be okay but that he'd need a little extra help and that it made a lot of sense to have him followed to be sure that he stays on track.
She had a few things that she wanted us to work on with him. To strengthen the legs and encourage him to do "squats" she placed a wood puzzle on a chair and put the pieces on the floor. He wasn't having that at first but he did come back to it. He plays with magnets on the fridge and often does the same thing. Also, when he plays while sitting on my lap, she said to turn his feet so that they are flat on the floor. That way he is more likely to stand up from there. A stepstool would also accomplish the same thing.
So that went well, and I feel like it will be pretty easy to do what she suggests. Having the therapists come makes us more aware of what sorts of things he needs to work on in order to stay on track.
Sorry, no superpowers
This morning, despite the weather, we took The Boy to the radiation oncologist. Thankfully, Musical Daddy had a snow day, so he was able to go to the appointment. I hope that he feels a bit better about the whole process...
Even though it still sucks.
The doctor was very friendly and explained everything pretty well. My mother and my father-in-law were both in attendance, and both of them have had radiation, so they had some questions that we may not have thought of.
Assuming that they do the standard treatment that is a part of his protocol, he will go there seven times, with the first time being when they fit him for a mold of some sort that will put him in the exact same position each time. The next time, he will have imaging along with the radiation. The five times after that will be, pardon the word choice, zap-zap and he's done.
Good things: word on the street is that radiation is a cakewalk compared to chemotherapy. My father-in-law was treated with only radiation for his prostate cancer, and he only started feeling tired toward the end. My mother was also treated with radiation and she echoed the sentiment about being tired, and also said that she had what amounted to a sunburn. The Boy is receiving a much lower dose, and the doctor said that for him, immediate side effects would be minimal. We will give him his Zofran regularly, because nausea is a possibility. Additionally, he could have issues with blood counts. Radiation can affect red cells, white cells, and platelets. We'll find out when and if he needs to visit the treatment center to monitor his blood.
Bad things: although there are not many immediate side effects, with children the concern is late effects. As I may have mentioned, the radiation could have an effect on his growth in the area where he is radiated. He could end up having a slightly shorter sitting height because his midsection might grow a little less. It doesn't sound like a major problem, and we hope that it will not be. Another possibility, which the doctor said was very unlikely but couldn't be ruled out, is a secondary cancer in the radiated area that could develop later on. Furthermore, the radiation could affect kidney function. Since he will be followed by the oncology team and a nephrologist already, I don't see these as new concerns. Granted, the rareness factor doesn't mean beans to us, since childhood cancer is rare, Wilms tumor is rare, Wilms tumor shows up more often in girls, and chemo is supposed to work the first time. Nevertheless, there's not much of a choice, and if it keeps the cancer away, we'll do it.
Annoying things: for all of the treatments, The Boy will need to be sedated. He will need to go without food for 6 hours and without clear liquids for 2 hours. Because this process has happened rather quickly, scheduling was a bit of an issue. On Wednesday, The Boy needs to be there at 9:30 for an 11:00 procedure. He will not be too thrilled about having to wake up for a 4:40 breakfast (has to be done eating by 5) and will be less thrilled about having to wait for lunch. The plan is to wake him for breakfast, try to go back to sleep, and meet Grandpa for an 8:30 mall walk before going to the appointment at 9:30. Thursday's is even worse; it is a 2:00 session with a 12:30 arrival time. He will be able to eat his normal breakfast, finishing up by 8:00, but he has to go without any other food after that. My job will be to keep him out of the house and away from food in general that day; I'll probably bring him to Musical Daddy at some point so that I can eat.
Fortunately, the other appointments are at 7:00. It means getting up extra early, but it also means fewer issues for The Boy in terms of food and an otherwise normal day after treatment. Also, the other appointments are very short--waiting around for sedation is the longest part of the process.
Assuming that the weather doesn't get worse, The Boy has physical therapy today. The therapist will come to the house at 1-something.
I am so very proud of The Boy. He has really progressed developmentally over the past month or so. He is walking more, he is saying more words, and he is following directions. You know, when he wants to.
Even though it still sucks.
The doctor was very friendly and explained everything pretty well. My mother and my father-in-law were both in attendance, and both of them have had radiation, so they had some questions that we may not have thought of.
Assuming that they do the standard treatment that is a part of his protocol, he will go there seven times, with the first time being when they fit him for a mold of some sort that will put him in the exact same position each time. The next time, he will have imaging along with the radiation. The five times after that will be, pardon the word choice, zap-zap and he's done.
Good things: word on the street is that radiation is a cakewalk compared to chemotherapy. My father-in-law was treated with only radiation for his prostate cancer, and he only started feeling tired toward the end. My mother was also treated with radiation and she echoed the sentiment about being tired, and also said that she had what amounted to a sunburn. The Boy is receiving a much lower dose, and the doctor said that for him, immediate side effects would be minimal. We will give him his Zofran regularly, because nausea is a possibility. Additionally, he could have issues with blood counts. Radiation can affect red cells, white cells, and platelets. We'll find out when and if he needs to visit the treatment center to monitor his blood.
Bad things: although there are not many immediate side effects, with children the concern is late effects. As I may have mentioned, the radiation could have an effect on his growth in the area where he is radiated. He could end up having a slightly shorter sitting height because his midsection might grow a little less. It doesn't sound like a major problem, and we hope that it will not be. Another possibility, which the doctor said was very unlikely but couldn't be ruled out, is a secondary cancer in the radiated area that could develop later on. Furthermore, the radiation could affect kidney function. Since he will be followed by the oncology team and a nephrologist already, I don't see these as new concerns. Granted, the rareness factor doesn't mean beans to us, since childhood cancer is rare, Wilms tumor is rare, Wilms tumor shows up more often in girls, and chemo is supposed to work the first time. Nevertheless, there's not much of a choice, and if it keeps the cancer away, we'll do it.
Annoying things: for all of the treatments, The Boy will need to be sedated. He will need to go without food for 6 hours and without clear liquids for 2 hours. Because this process has happened rather quickly, scheduling was a bit of an issue. On Wednesday, The Boy needs to be there at 9:30 for an 11:00 procedure. He will not be too thrilled about having to wake up for a 4:40 breakfast (has to be done eating by 5) and will be less thrilled about having to wait for lunch. The plan is to wake him for breakfast, try to go back to sleep, and meet Grandpa for an 8:30 mall walk before going to the appointment at 9:30. Thursday's is even worse; it is a 2:00 session with a 12:30 arrival time. He will be able to eat his normal breakfast, finishing up by 8:00, but he has to go without any other food after that. My job will be to keep him out of the house and away from food in general that day; I'll probably bring him to Musical Daddy at some point so that I can eat.
Fortunately, the other appointments are at 7:00. It means getting up extra early, but it also means fewer issues for The Boy in terms of food and an otherwise normal day after treatment. Also, the other appointments are very short--waiting around for sedation is the longest part of the process.
Assuming that the weather doesn't get worse, The Boy has physical therapy today. The therapist will come to the house at 1-something.
I am so very proud of The Boy. He has really progressed developmentally over the past month or so. He is walking more, he is saying more words, and he is following directions. You know, when he wants to.
Sunday, March 1, 2009
Violin!!!
The Boy said "violin" while gesturing to the violin, indicating that he wanted to hear it. Sounded like "by-een" which is pretty darned good!
So smart.
He's getting a tiny violin, either for his 3rd birthday or as a potty-training present.
I wish I could play bass for him more often but there are extra steps. It is a very important word for him to know.
So smart.
He's getting a tiny violin, either for his 3rd birthday or as a potty-training present.
I wish I could play bass for him more often but there are extra steps. It is a very important word for him to know.
Play-Doh (or, Grandma Hates Us)
Play-doh has AMAZING play value for The Boy and even though I was less than thrilled about the idea of introducing that messy nightmare, it was SO worth it.
We used a place mat on the floor. We used one color at a time at first (the package came with red, yellow, blue, and white). He enjoyed squishing it, putting pieces in the containers and taking them out, stacking the containers, and watching Mommy put it on her nose.
Grandma suggested it because it would encourage him to use his fingers more and develop manual dexterity.
Just for reference, parents, baby-led weaning (finger food at the table; no mush) does the same thing. And it doesn't matter if food gets eaten.
We used a place mat on the floor. We used one color at a time at first (the package came with red, yellow, blue, and white). He enjoyed squishing it, putting pieces in the containers and taking them out, stacking the containers, and watching Mommy put it on her nose.
Grandma suggested it because it would encourage him to use his fingers more and develop manual dexterity.
Just for reference, parents, baby-led weaning (finger food at the table; no mush) does the same thing. And it doesn't matter if food gets eaten.
Mommy OUT
With Grandma here for a fun visit instead of a hospital visit, I felt that much more comfortable going out last night to hear The Big Apple Chorus, with guests Voices of Gotham and The Alexandria Harmonizers. Good show. Good times. Nice to get out of the house. Of course, going into NYC is a giant pain. Thanks to my friend who drove. Of course, everything gets complicated when dealing with four other people...getting from place to place was a production each time. Mental note: bring GPS next time, no matter who is driving.
Review from Baby Bear: mad kicks to 'Round Midnight and Alexandria. Favorite songs were "Since I Don't Have You" (not sure if I have the right title) and Drunken Sailor.
I didn't do as much singing at the afterglow as I thought I wanted to. In retrospect, I should have found time to take a nap yesterday because I was a little giddy and very tired. It was after 2AM when we finally left the place. A conversation that I had involved my saying "I like cake" despite the fact that my opinion on said cake was not requested. Actually, I was telling someone that Musical Daddy was not in attendance that evening because he had schoolwork to do and gigs coming up over the next few weeks that would make it difficult to get much done, so he had to stay home and work. Not entirely true because he did spend a good chunk of time with Uncle B (not his uncle; his BFF) playing games and reading comics, but since he was not out past 3AM, he was able to spend the later evening on his work. Point being, I said that missing the show was a drag, but gigs are nice and we like money. Then I said I like cake. What, don't you?
Voices of Gotham performed an arrangement of "Loch Lomond" last night. The arrangement was, I thought, only okay, but the performance was quite good. I'm rather fond of the way that Realtime sings it, which might possibly have colored my perception a bit. The song makes me think of my kids at school, as I envisioned and arranged this song for them last spring. It took quite awhile for them to even like the arrangement, but they did, and it worked fantastically.
I miss them.
Anyhow, it has been a wonderful weekend with The Boy and Grandma, and even with Musical Daddy being more available this weekend than he will be for the next two. He has continued to be energetic and fun and sweet. And hungry. I do worry as we get further away from him having had a treatment of some kind, but the next phase starts very soon, and I fully expect the doctors to keep things under control.
Meanwhile, I'll just keep feeding him as much delicious food as he wants, and I'll continue to let him play and improve his walking skills and talk to us. It does seem as though he backslides a bit after staying in the hospital and only bounces back once he has finished feeling sick from chemo. Radiation is not supposed to be too bad in that regard although Grandma was quite tired from her treatment. Of course, she wasn't too tired to come here and await the birth of The Boy...seems like ages ago.
To do today: straighten up (again; should last for 30 minutes or less), go to the grocery store. Play with The Boy.
Review from Baby Bear: mad kicks to 'Round Midnight and Alexandria. Favorite songs were "Since I Don't Have You" (not sure if I have the right title) and Drunken Sailor.
I didn't do as much singing at the afterglow as I thought I wanted to. In retrospect, I should have found time to take a nap yesterday because I was a little giddy and very tired. It was after 2AM when we finally left the place. A conversation that I had involved my saying "I like cake" despite the fact that my opinion on said cake was not requested. Actually, I was telling someone that Musical Daddy was not in attendance that evening because he had schoolwork to do and gigs coming up over the next few weeks that would make it difficult to get much done, so he had to stay home and work. Not entirely true because he did spend a good chunk of time with Uncle B (not his uncle; his BFF) playing games and reading comics, but since he was not out past 3AM, he was able to spend the later evening on his work. Point being, I said that missing the show was a drag, but gigs are nice and we like money. Then I said I like cake. What, don't you?
Voices of Gotham performed an arrangement of "Loch Lomond" last night. The arrangement was, I thought, only okay, but the performance was quite good. I'm rather fond of the way that Realtime sings it, which might possibly have colored my perception a bit. The song makes me think of my kids at school, as I envisioned and arranged this song for them last spring. It took quite awhile for them to even like the arrangement, but they did, and it worked fantastically.
I miss them.
Anyhow, it has been a wonderful weekend with The Boy and Grandma, and even with Musical Daddy being more available this weekend than he will be for the next two. He has continued to be energetic and fun and sweet. And hungry. I do worry as we get further away from him having had a treatment of some kind, but the next phase starts very soon, and I fully expect the doctors to keep things under control.
Meanwhile, I'll just keep feeding him as much delicious food as he wants, and I'll continue to let him play and improve his walking skills and talk to us. It does seem as though he backslides a bit after staying in the hospital and only bounces back once he has finished feeling sick from chemo. Radiation is not supposed to be too bad in that regard although Grandma was quite tired from her treatment. Of course, she wasn't too tired to come here and await the birth of The Boy...seems like ages ago.
To do today: straighten up (again; should last for 30 minutes or less), go to the grocery store. Play with The Boy.
Friday, February 27, 2009
Oh good grief!
No chemo. At least not yet. They want to do radiation after all. The tumor board didn't discuss it, but the doctor who is in charge of the bilateral Wilms Tumor study did recommend radiation. When, you might ask?
Sometime between the moment we walked into the outpatient center for counts and the time that the doctor examined The Boy.
The nurse asked if we'd like to do the finger stick for counts or if she should access the port. I said that she should go ahead and access the port, since (I thought) we were going right upstairs and that was one less thing for them to worry about up there.
Then we played for awhile. Grandpa was there (Musical Daddy's daddy), and we had some fun. Then the doctor said to come in, and maybe Grandpa would like to hear what she had to say as well. Of course I panicked, thinking that the counts were bad even though he had the extra recovery time, or even something worse. No, just a report that she had JUST received this message and that we were doing a radiation consultation on Monday.
Grandpa says that radiation is a cakewalk compared to chemo. It is a little trickier with a little guy, since he'll have to be sedated for it, but other parents of kids who have had radiation agree that radiation is easier to deal with.
The downside? Radiation can have side effects or late effects just like chemo. Most notably, radiation can affect the kidney. Since he has not even a full kidney, that is a concern; they decided to go ahead and radiate because he had enough to handle it (we hope). Also worth mentioning is that the doctor said his growth could be affected in the radiated area. He may end up being a little shorter in the trunk (his "sitting height") than he otherwise would have been. This certainly concerns me. However, Musical Daddy has shorter legs than he otherwise would have had because of his asthma medication as a kid. My father has a shorter trunk because of scoliosis surgery. Musical Daddy has a cousin with the same issue from the same surgery, as I learned today from his father, and she is tall and very athletic. Other children who have been through more of this sort of treatment have come out on the other end and are fine.
I'm not any more scared of radiation than I am of the chemo that he is getting. It's all nasty stuff that we are having done to him in the hopes that other nasty stuff, namely the cancer, doesn't come back.
It's still scary, though. He has cancer. Cancer can kill people. This morning a little girl in Norway passed away, having lost her battle with diffuse anaplastic (a very unfavorable histology) Wilms Tumor. She was 4.
But we keep on keepin' on for The Boy, knowing that every time they treat him, it's because they think that the treatment will work and make him better.
Sometime between the moment we walked into the outpatient center for counts and the time that the doctor examined The Boy.
The nurse asked if we'd like to do the finger stick for counts or if she should access the port. I said that she should go ahead and access the port, since (I thought) we were going right upstairs and that was one less thing for them to worry about up there.
Then we played for awhile. Grandpa was there (Musical Daddy's daddy), and we had some fun. Then the doctor said to come in, and maybe Grandpa would like to hear what she had to say as well. Of course I panicked, thinking that the counts were bad even though he had the extra recovery time, or even something worse. No, just a report that she had JUST received this message and that we were doing a radiation consultation on Monday.
Grandpa says that radiation is a cakewalk compared to chemo. It is a little trickier with a little guy, since he'll have to be sedated for it, but other parents of kids who have had radiation agree that radiation is easier to deal with.
The downside? Radiation can have side effects or late effects just like chemo. Most notably, radiation can affect the kidney. Since he has not even a full kidney, that is a concern; they decided to go ahead and radiate because he had enough to handle it (we hope). Also worth mentioning is that the doctor said his growth could be affected in the radiated area. He may end up being a little shorter in the trunk (his "sitting height") than he otherwise would have been. This certainly concerns me. However, Musical Daddy has shorter legs than he otherwise would have had because of his asthma medication as a kid. My father has a shorter trunk because of scoliosis surgery. Musical Daddy has a cousin with the same issue from the same surgery, as I learned today from his father, and she is tall and very athletic. Other children who have been through more of this sort of treatment have come out on the other end and are fine.
I'm not any more scared of radiation than I am of the chemo that he is getting. It's all nasty stuff that we are having done to him in the hopes that other nasty stuff, namely the cancer, doesn't come back.
It's still scary, though. He has cancer. Cancer can kill people. This morning a little girl in Norway passed away, having lost her battle with diffuse anaplastic (a very unfavorable histology) Wilms Tumor. She was 4.
But we keep on keepin' on for The Boy, knowing that every time they treat him, it's because they think that the treatment will work and make him better.
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