So, over the past year, V's food choices have expanded. Due to the fact that his options were so very limited, we started coming up with new ideas; several were his own; as he was growing, his appetite was growing too and so were his taste buds. The following got added to his diet:
1. Pizza: He will eat all the toppings of a pizza minus the crust. That way he derives the satisfaction of eating a pizza. Every Friday for over six months, he has been ordering pizza at school on pizza day. He gets a slice; eats the cheese and pepperoni; I asked him how that was enough; his response was that he anyway eats the carrots and milk that go with it and maybe apple. So this is working well; once a week I make pizza for his lunch or dinner.
2. Melted Cheese: He melts cheese either in the toaster oven or in the microwave at a consistency that he desires.
3. Eating salad with melted cheese.
4. Eating the inside of a dumpling for instance.
I hope to keep adding to this list.
Sunday, September 19, 2010
Night terrors again
So after being event free for several months as far as seizure activity goes, the night terrors happened three weeks in a row, once a week. No idea what might have triggered them. Tried different food combination elimination possibilities and tried different sleep patterns. So far, the past week was uneventful. Lets hope it continues that way. After all, life would not be half as exciting without its challenges!
Saturday, April 3, 2010
Far too long; first time in public
I have stayed away from this blog for far too long. V is having an excellent year; really enjoys having a male teacher who has a great sense of humor. He has had his ups and downs of course. Several things are still day to day and it has become for us commonplace to realise that and take each day as it comes. The good thing is that his teacher realises that he has to take one day at a time and that makes life easier for everyone.
Not only is V doing reasonably well on the academic front (reasonably when compared to the rest; compared to where he was at, he is doing fantastic), he is doing scores better socially and emotionally too. He has a couple more friends which is huge. He is actually trying to play some games at recess, not just stay in the sand box. These are huge leaps in his social growth. Not sure where this will be in a couple of years but we'll see when we get there.
V does still tend to be on the immature side when compared to kids his age; he doesn't realise that he is bothering someone; others get really flustered when he comes near, leave alone say anything. It is a viscious cycle and not one that we are to solve in the near future.
Thanks to a co-worker, I organized a fundraiser for epilepsy to raise awareness and to try and start giving back. It was a small group of friends and coworkers. Was very good. I was surprised at myself giving a small presentation, but it was a small group, in my own home and I didn't really get into details which may have been harder.
This past week however, for the very first time I spoke in front of an audience in a public setting. Apparently, there were 250 people. It was a different discussion, I was bringing up the issue of seeking support, talking openly when your child has a difficulty, health or learning and being able to cope with that. I had 3 minutes to talk, was very nervous and debated several times whether to bring in my personal piece. Without that I decided that the little speal I had was not worth its value. So I went up there, the sentence where I said "On December 31st, 2003 when my son had his first seizure..." and I could hear my voice starting to crack, so I told myself I couldn't let that happen. I went onto completing that sentence without a crackling, didn't go into details, because I didn't trust myself to complete what I had to say calmly and finished the rest.
The next morning I was feeling physically and emotionally drained. All I did was stand there in front of an audience for three minutes. The only sentence was about V's first seizure and how we need to seek support. The buildup to it all, to talk about it in public calmly and have people advocate for themselves - it was too much for me to handle. I haven't felt so mentally tired in a very long time. I was feeling so alone, and still am. All of the past seemed to come crashing down on me; I feel like I am carrying this heavy load. And yet, this should not be about me. It is about V and how he suffered. I can't explain how I am feeling but I have this thing that I need to continue on this mission of helping other parents to learn to accept, to listen, to work with their schools, to seek support. It means I have to build up my mental make up. I considered myself to be a very strong person. And I have come down in a crumbling heap with those 3 minutes. I was barely holding it together for two days, especially when people said to me - what an act of courage - I guess it was but I wasn't looking at it that way. There is a lot more work to be done.
Not only is V doing reasonably well on the academic front (reasonably when compared to the rest; compared to where he was at, he is doing fantastic), he is doing scores better socially and emotionally too. He has a couple more friends which is huge. He is actually trying to play some games at recess, not just stay in the sand box. These are huge leaps in his social growth. Not sure where this will be in a couple of years but we'll see when we get there.
V does still tend to be on the immature side when compared to kids his age; he doesn't realise that he is bothering someone; others get really flustered when he comes near, leave alone say anything. It is a viscious cycle and not one that we are to solve in the near future.
Thanks to a co-worker, I organized a fundraiser for epilepsy to raise awareness and to try and start giving back. It was a small group of friends and coworkers. Was very good. I was surprised at myself giving a small presentation, but it was a small group, in my own home and I didn't really get into details which may have been harder.
This past week however, for the very first time I spoke in front of an audience in a public setting. Apparently, there were 250 people. It was a different discussion, I was bringing up the issue of seeking support, talking openly when your child has a difficulty, health or learning and being able to cope with that. I had 3 minutes to talk, was very nervous and debated several times whether to bring in my personal piece. Without that I decided that the little speal I had was not worth its value. So I went up there, the sentence where I said "On December 31st, 2003 when my son had his first seizure..." and I could hear my voice starting to crack, so I told myself I couldn't let that happen. I went onto completing that sentence without a crackling, didn't go into details, because I didn't trust myself to complete what I had to say calmly and finished the rest.
The next morning I was feeling physically and emotionally drained. All I did was stand there in front of an audience for three minutes. The only sentence was about V's first seizure and how we need to seek support. The buildup to it all, to talk about it in public calmly and have people advocate for themselves - it was too much for me to handle. I haven't felt so mentally tired in a very long time. I was feeling so alone, and still am. All of the past seemed to come crashing down on me; I feel like I am carrying this heavy load. And yet, this should not be about me. It is about V and how he suffered. I can't explain how I am feeling but I have this thing that I need to continue on this mission of helping other parents to learn to accept, to listen, to work with their schools, to seek support. It means I have to build up my mental make up. I considered myself to be a very strong person. And I have come down in a crumbling heap with those 3 minutes. I was barely holding it together for two days, especially when people said to me - what an act of courage - I guess it was but I wasn't looking at it that way. There is a lot more work to be done.
Saturday, November 28, 2009
It has been three months already
I didn't realise that I hadn't posted in three months. During these three months, there was one big change that transpired both for V and me. In the summer he said to me, I will sleep by myself when I get to third grade. Come August, he was telling me, I want to sleep on my own. Now, my mother was visiting and being a three bedroom house, she was in V's room as she always does; so I explained to him how he couldn't sleep there as it would be disturbing both to him and to his grandmother. So he said to me, he was ok if I kept a mattress down in my room. So I got the mattress organized along with a fan (he has to have the room really cold in order to sleep soundly but not so cold that he will shiver). So, the first night, he woke up really early in the morning but continued to sleep in his bed. It took about two nights before he settled in completely.
About six weeks ago, my mother left. V had decided that when she leaves, he wanted to sleep by himself in his room. This took a great deal of independence and courage on his part as well as to let go on my part as I used to be paranoid about the nights. It meant that I would have to let him be no matter what. Well, when he transitioned to his room, it again took a couple of nights before he settled in. After those two nights, he started sleeping in really well. I figured out the right angle of the fan, the bed, the stuffed toys, all the factors that might impact the quality of his sleep; he has been extremely excited about being on his own, has been spending time alone in his room; in short doing what most kids would have done independently years earlier.
I imagine I am sleeping better too as a result as I don't awaken at his every movement or sound. I contemplated buying a monitor to check on his sounds through the night and decided that I had to let go - he didn't really need it and it might actually create a problem where none exists.
Last night, with the long Thanksgiving break and R spending the night at her friend's house, while reading aloud to V before bed, he asked if just this one night he could sleep with me and my husband. I was impressed that he had never asked to do so in three months and I said that was fine. He is ready to go back to his room today after that one night's break just to reassure himself that his mother is around and will be there for him. That is normally my good night message to him - good night, sleep tight, don't let the bugs bite; I love you; relax because mama is going to be there for you, no matter what - she is not going anywhere.
About six weeks ago, my mother left. V had decided that when she leaves, he wanted to sleep by himself in his room. This took a great deal of independence and courage on his part as well as to let go on my part as I used to be paranoid about the nights. It meant that I would have to let him be no matter what. Well, when he transitioned to his room, it again took a couple of nights before he settled in. After those two nights, he started sleeping in really well. I figured out the right angle of the fan, the bed, the stuffed toys, all the factors that might impact the quality of his sleep; he has been extremely excited about being on his own, has been spending time alone in his room; in short doing what most kids would have done independently years earlier.
I imagine I am sleeping better too as a result as I don't awaken at his every movement or sound. I contemplated buying a monitor to check on his sounds through the night and decided that I had to let go - he didn't really need it and it might actually create a problem where none exists.
Last night, with the long Thanksgiving break and R spending the night at her friend's house, while reading aloud to V before bed, he asked if just this one night he could sleep with me and my husband. I was impressed that he had never asked to do so in three months and I said that was fine. He is ready to go back to his room today after that one night's break just to reassure himself that his mother is around and will be there for him. That is normally my good night message to him - good night, sleep tight, don't let the bugs bite; I love you; relax because mama is going to be there for you, no matter what - she is not going anywhere.
Friday, September 4, 2009
Sick again
So, its never fun when a child is sick - only a mom knows what she goes through - it is always hard to focus on anything else. And so it has always been with me and the kids if and when they get sick. I have been relatively lucky with the older one and younger also has a strong immune system, despite the seizures and the other issues. The other day he fell sick - my heart beat almost stops even now when he is sick - I am not as paranoid is what I would like to believe - but two nights ago when he threw up about 8 times, I was on tenterhooks - I am still just relieved that nothing else happened. There was no fever, nothing else - but he just kept throwing up and when it stopped at about 1:30 - just like from about 10 pm - I couldn't sleep because I kept thinking - he is now going to throw up again. It was a nightmare - I guess making up for all of those healthy days he has seen the past several months.
In any case, God is good, all's well with the world and he is hale and hearty again - yelling and screaming and as normal as he can possibly be.
It is obviously a challenge during his throwing up phases - he is anyway on a restricted diet, combined with the throwing up - what can he eat when ok? So when he awoke the only two things he was allowed was apple and banana. Two hours thereafter, when he was still doing fine, he was allowed his cereal, thereafter salad and yogurt, thereafter his nuts.
I am truly grateful everything was shortlived and I can go back to thinking that this phase never happened at all.
In any case, God is good, all's well with the world and he is hale and hearty again - yelling and screaming and as normal as he can possibly be.
It is obviously a challenge during his throwing up phases - he is anyway on a restricted diet, combined with the throwing up - what can he eat when ok? So when he awoke the only two things he was allowed was apple and banana. Two hours thereafter, when he was still doing fine, he was allowed his cereal, thereafter salad and yogurt, thereafter his nuts.
I am truly grateful everything was shortlived and I can go back to thinking that this phase never happened at all.
Monday, July 27, 2009
Fever and tantrums
During this past month when we were travelling, I was lucky in that both children remained healthy. Right at the end of the trip, both the kids fell sick, one after the other, with V being the first. I am still very paranoid when he falls sick not knowing what to expect. However, this time, his fever was under control - lasted one day and there were no repercussions at all. I would use Tylenol when I felt his fever come back and it would disappear sooner than later and he would be fine. For this I am more than grateful. Also, touch wood, he is inherently healthy and bounced back the next day.
V has been having more than his share of tantrums. I am not sure whether it is because of all the changes and his routine change or because of the fact that he did not like the bananas while travelling and barely ate them - just one seller whose bananas he liked and would eat one a day. The fact is that I think this is an issue and needs to be addressed and I will check to see what the best approach would be. Yelling is obviously not the right way but reasoning during those periods cannot happen because he is in a non-listening mode. Basically, this makes me even more convinced that V needs a really rigid diet and routine and slight deviations can cause problems.
V has been having more than his share of tantrums. I am not sure whether it is because of all the changes and his routine change or because of the fact that he did not like the bananas while travelling and barely ate them - just one seller whose bananas he liked and would eat one a day. The fact is that I think this is an issue and needs to be addressed and I will check to see what the best approach would be. Yelling is obviously not the right way but reasoning during those periods cannot happen because he is in a non-listening mode. Basically, this makes me even more convinced that V needs a really rigid diet and routine and slight deviations can cause problems.
How long?
I have become rather irratic about posting regular blog entries. I think the last summer was sort of to get it off my chest and to log my experience so that it truly would help someone - even if it helped one person I would be relieved. Since then, the updates have been infrequent and I need to get myself more disciplined on that front.
We recently travelled to many places - in and out of the country. Touch wood - nothing seems to have changed in his health other than him having lost some weight which is fine as long as he stays active and healthy.
After being disillusioned with the neurologists, particularly the one we had been seeing, I just take V for his annual checkups to his pediatrician whom I hold in very high regard for several reasons. To say that she has been pleased with his development is an understatement. She has not recommended any changes for him, whether in terms of diet, academics, anything. I frequently get asked the question - how long should V's diet continue? To be honest, just as with everything else that I have experienced with him, it is a day to day situation. Not only do I not have an answer to this question, nobody does.
Some say, seizure free for at least two years with the diet before weaning - I weaned him off medication the month after he was seizure free, I was so frustrated with the side effects. Having to experience what he is going through 24x7 is very different from someone seeing him for a short period of time and trying to evaluate what's going on with him is what I have realised.
Some say, if three years, others have other opinions. In short, no one doctor or person with experience has any one common answer. It all depends upon how the child is reacting to different things. In June, right before V's school closed, he had whipped cream with bananas for breakfast at a parent event. That day, his teacher told me, it was really hard for him to stay focused and he was very fidgety. I know exactly what she meant - that is how he used to be every single day in preschool - something his language therapist had noticed when nobody else had. This basically means, even a slight increase in sugar is not something his body can take. So I am not even going to try going down that path. Do I think he will be able to eat the same meal as any of us? I have great confidence and belief that he can. The only question is when to which I do not have an answer. I also don't think the answer is important and to have him on a full carb diet is required as long as he continues to remain not only seizure free but also is able to control his behaviour pattern and has a good night's sleep.
We recently travelled to many places - in and out of the country. Touch wood - nothing seems to have changed in his health other than him having lost some weight which is fine as long as he stays active and healthy.
After being disillusioned with the neurologists, particularly the one we had been seeing, I just take V for his annual checkups to his pediatrician whom I hold in very high regard for several reasons. To say that she has been pleased with his development is an understatement. She has not recommended any changes for him, whether in terms of diet, academics, anything. I frequently get asked the question - how long should V's diet continue? To be honest, just as with everything else that I have experienced with him, it is a day to day situation. Not only do I not have an answer to this question, nobody does.
Some say, seizure free for at least two years with the diet before weaning - I weaned him off medication the month after he was seizure free, I was so frustrated with the side effects. Having to experience what he is going through 24x7 is very different from someone seeing him for a short period of time and trying to evaluate what's going on with him is what I have realised.
Some say, if three years, others have other opinions. In short, no one doctor or person with experience has any one common answer. It all depends upon how the child is reacting to different things. In June, right before V's school closed, he had whipped cream with bananas for breakfast at a parent event. That day, his teacher told me, it was really hard for him to stay focused and he was very fidgety. I know exactly what she meant - that is how he used to be every single day in preschool - something his language therapist had noticed when nobody else had. This basically means, even a slight increase in sugar is not something his body can take. So I am not even going to try going down that path. Do I think he will be able to eat the same meal as any of us? I have great confidence and belief that he can. The only question is when to which I do not have an answer. I also don't think the answer is important and to have him on a full carb diet is required as long as he continues to remain not only seizure free but also is able to control his behaviour pattern and has a good night's sleep.
Subscribe to:
Posts (Atom)
