We got the boys all registered in middle school and then Chase went to football practice. Cole has been doing well watching Chase do something he so badly wanted to, but I sometimes wonder when it will wear off. It has to be hard. We sent him away on a small vacation with his grandparents for a couple of days this week. He was the center of attention for a couple of days and we really felt like he could use it. I do think that played a part in him dealing with it a little better, but like I said, I don't know how long it will last.
Chase was running back tonight and Brian's pretty sure he'll be starting since he's one of the fastest and about 20 lbs heavier than the other fast boy. I'll miss his first game because Cole has his Heart Walk that day. But, he will have other games and Cole only does this once per year and I'm hoping this is something he'll continue on with, especially now. He's already done it for 6 years which is awesome for a boy his age.
I just hope Cole learns to be flexible with his life and roll with it all. It's really the only way. However, I will always feel bad for him and pray he doesn't feel like he truly missed out. I could care less about athletics, but if it's something my kids enjoy and are interested in, I greatly care.
Wednesday, August 11, 2010
Sunday, August 8, 2010
The Real World
Mine Vs. Others
Have you ever seen those reality shows? We must be getting Bravo free for a bit, so I thought I'd tune into some of those housewives shows. It just stuns me what their reality is compared to ours. The stuff they worry about and stress about are so stupid and frivolous. Money or not, I'd like to know if their 'lives' are real. Do wealthy really have that low of an existence as some of these people on reality shows portray? Sure they seem to love their kids, etc. but they make their lives so much more complicated than they need to be. Of course, I'm sure there are plenty of people like that in every social class.
I guess I just spend so much time worrying about where this world is going for my children and grandchildren. Is there going to be anything left to save? I wish I had an answer to how to fix the problems of today. I wish I had an answer to how the middle class is going to survive without getting crushed into the poorer classes. And I wish I had an answer on how to get the poorer classes up and handling things better on their own, for the ones who want to. There are too many that fall through the cracks in our society and too many that take advantage of the cracks they seep into to get what they 'deserve'.
I wish there were a way to link up social security numbers. If you partake in social welfare of any sort, disability or otherwise, then you should sign over the government's ability to verify your accounts and holdings. If anything is dependent on your assets and income then there should be proof. Instead, it's left to social workers that there are not enough of and they are left to take the participant's word for it. Yes, if they lie, then they're in trouble, but the truth of it is they don't have time to verify anything. If these verifications were computerized we wouldn't have those same worries.
I know some don't believe government should have too much control, but if you want free government aid then you have to give up some liberties. That would leave more funding for the truly needy. And no, if they put assets, etc. in someone else's name it's going to be hard to verify anything, but they'd have to go through a lot of trouble to hide it at least. It's better than the way it is now. I don't understand the mentality of them 'owing' it to you. I really don't.
I know right now, you're thinking what does the first paragraph have to do with any of the others. My point is that I wonder if this isn't why we're in this predicament. Too many people getting upset, worried and dramatizing petty things in life instead of the things that matter. We've lost some of the important things that used to be taught to our kids and substituted them for the great American dream of having it all and more. I've said it before and I'll say it a million times over. As long as we can pay our bills, keep our children healthy, love each other and teach the kids to be good and caring people this is all I want for my success in life. My kids are thankful for the smallest things and that makes me proud. We can take free passes and take them to the pool for a couple of hours and get thank yous from them. We hope to keep them on that track.
We're not perfect parents, by any means, but how will it do any good if there are so few out there, or so it seems, keeping their children in reality?
Have you ever seen those reality shows? We must be getting Bravo free for a bit, so I thought I'd tune into some of those housewives shows. It just stuns me what their reality is compared to ours. The stuff they worry about and stress about are so stupid and frivolous. Money or not, I'd like to know if their 'lives' are real. Do wealthy really have that low of an existence as some of these people on reality shows portray? Sure they seem to love their kids, etc. but they make their lives so much more complicated than they need to be. Of course, I'm sure there are plenty of people like that in every social class.
I guess I just spend so much time worrying about where this world is going for my children and grandchildren. Is there going to be anything left to save? I wish I had an answer to how to fix the problems of today. I wish I had an answer to how the middle class is going to survive without getting crushed into the poorer classes. And I wish I had an answer on how to get the poorer classes up and handling things better on their own, for the ones who want to. There are too many that fall through the cracks in our society and too many that take advantage of the cracks they seep into to get what they 'deserve'.
I wish there were a way to link up social security numbers. If you partake in social welfare of any sort, disability or otherwise, then you should sign over the government's ability to verify your accounts and holdings. If anything is dependent on your assets and income then there should be proof. Instead, it's left to social workers that there are not enough of and they are left to take the participant's word for it. Yes, if they lie, then they're in trouble, but the truth of it is they don't have time to verify anything. If these verifications were computerized we wouldn't have those same worries.
I know some don't believe government should have too much control, but if you want free government aid then you have to give up some liberties. That would leave more funding for the truly needy. And no, if they put assets, etc. in someone else's name it's going to be hard to verify anything, but they'd have to go through a lot of trouble to hide it at least. It's better than the way it is now. I don't understand the mentality of them 'owing' it to you. I really don't.
I know right now, you're thinking what does the first paragraph have to do with any of the others. My point is that I wonder if this isn't why we're in this predicament. Too many people getting upset, worried and dramatizing petty things in life instead of the things that matter. We've lost some of the important things that used to be taught to our kids and substituted them for the great American dream of having it all and more. I've said it before and I'll say it a million times over. As long as we can pay our bills, keep our children healthy, love each other and teach the kids to be good and caring people this is all I want for my success in life. My kids are thankful for the smallest things and that makes me proud. We can take free passes and take them to the pool for a couple of hours and get thank yous from them. We hope to keep them on that track.
We're not perfect parents, by any means, but how will it do any good if there are so few out there, or so it seems, keeping their children in reality?
Saturday, August 7, 2010
A first for some of the kids
I took 3 of the kids to their first concert. It was only $10 at the county fair, so I thought it would be a good idea to see how well Chelsi would really hold up. She was pretty much the reason I even wanted to go being the BIG country fan she is. It was late, so I wasn't sure what to expect. We didn't get there until 9 and waited around for it to start. She had a BLAST! She was waving her hands and screaming. She was so hoarse. Her arms were in the air more than they were down. She really, really liked Justin Moore! Kaelin and Chase wanted to go to. I think they wanted to experience it. They couldn't see real well and I could only hold Chelsi. We pushed our way towards the front and when we got fairly close there were some nice girls that offered to hold my 50lb Kaelin. Chelsi finally heard 'Backwoods' and was ready to go to bed. We got home and in bed around midnight. I loved watching her enjoy it. She also asked me to take a picture of Justin. I only brought my 10 year old little camera so I wouldn't have to worry so the picture stinks, but it's a picture. :)
Definitely want to take her to a bigger concert some day. She truly loved it!
Chelsi and I at the concert.
And on the way there.
Definitely want to take her to a bigger concert some day. She truly loved it!
Just keep swimming...
We've now done 4 pools in 4 days. The kids are having way too much fun swimming. Thank God all 5 are water babies. They're definitely MY kids.
But, before that I wanted to finally put out the pics of the little kids at Six Flags. I wish I had pictures from the waterpark and the big kids, but it's hard to have fun if you're busy taking tons of pictures. Kaelin road a big roller coaster for the first time and she said her tummy was doing flipflops by the end, but she loved it.
But, before that I wanted to finally put out the pics of the little kids at Six Flags. I wish I had pictures from the waterpark and the big kids, but it's hard to have fun if you're busy taking tons of pictures. Kaelin road a big roller coaster for the first time and she said her tummy was doing flipflops by the end, but she loved it.
Already sleeping on the way there.
Today we were able to swim at a friends house. She wasn't there, but let us swim anyways. Dad needed some alone time, so me and aunt M took them to Lois' to swim. They had a great time!!
Friday, August 6, 2010
I did it!
I took time off just for the heck of it. I haven't even taken time off without a reason in 2 years. That was our last vacation right after the accident, the appendectomy and the seizure. I took a couple hours off to use our pool passes. The kids had a great time meeting up with their friends for a couple of hours. Then, they had their last night of swim lessons. Cole only has one level to go and he can try out for jr lifeguard. I'll have one in 2, 4, 5 and 6 next year.
Then, we took off a whole day for Six Flags. We had a great time. We haven't just gone somewhere without any expectations or an agenda in years and I really enjoyed it. The kids had an awesome time. I haven't been in nearly 20 years. Makes me sound old, huh? I'm not really that old, just haven't been since high school. I don't think Kaelin stopped smiling all day! Jae did great! All of the kids had so much fun!! I loved watching them.
I took off early again today so the kids could go to the pool again, before they close for the season. They got to meet up with their friends again and had a great time. They were thanking me as we were walking out of the park.
I really need to take my vacation a little more often to enjoy life. I'm always so afraid I'll need it, so I really rarely use it. And Cole's heart is a lot of that reason, but sometimes I wonder if I live in the mean time? I'm such a cautious person. Always have been.
And, I have to say Six Flags is definitely an enlightening experience. We saw vehicles with taped up plastic instead of a back window all the way to tricked out Escalades. I saw a man with a belly ring. I've never seen that before. One girl had some sort of ring coming our both cheeks and I think her lip too. Either that or it was a tattoo. I really need to get out more often. I wonder, some days, if my kids will be as sheltered as I've always been. Sometimes that's good and sometimes that's bad.
On the medical side, I'm still waiting to hear from Cole's PC. We're going to try to catch each other so he can explain things to me. Jaemin has an appointment at the end of next month. I'm hoping we'll get somewhere with him then. I got Chelsi in to a ped urologist next month and really have high hopes for figuring things out for her too. They're supposed to call next week to tell me what time to come and what tests we can start with. Jane, if you're reading this it may be an early appointment, so we may need a place to stay that night?
Anyways, I've discovered vacation time in the midst of medical stress is AWESOME!
Then, we took off a whole day for Six Flags. We had a great time. We haven't just gone somewhere without any expectations or an agenda in years and I really enjoyed it. The kids had an awesome time. I haven't been in nearly 20 years. Makes me sound old, huh? I'm not really that old, just haven't been since high school. I don't think Kaelin stopped smiling all day! Jae did great! All of the kids had so much fun!! I loved watching them.
I took off early again today so the kids could go to the pool again, before they close for the season. They got to meet up with their friends again and had a great time. They were thanking me as we were walking out of the park.
I really need to take my vacation a little more often to enjoy life. I'm always so afraid I'll need it, so I really rarely use it. And Cole's heart is a lot of that reason, but sometimes I wonder if I live in the mean time? I'm such a cautious person. Always have been.
And, I have to say Six Flags is definitely an enlightening experience. We saw vehicles with taped up plastic instead of a back window all the way to tricked out Escalades. I saw a man with a belly ring. I've never seen that before. One girl had some sort of ring coming our both cheeks and I think her lip too. Either that or it was a tattoo. I really need to get out more often. I wonder, some days, if my kids will be as sheltered as I've always been. Sometimes that's good and sometimes that's bad.
On the medical side, I'm still waiting to hear from Cole's PC. We're going to try to catch each other so he can explain things to me. Jaemin has an appointment at the end of next month. I'm hoping we'll get somewhere with him then. I got Chelsi in to a ped urologist next month and really have high hopes for figuring things out for her too. They're supposed to call next week to tell me what time to come and what tests we can start with. Jane, if you're reading this it may be an early appointment, so we may need a place to stay that night?
Anyways, I've discovered vacation time in the midst of medical stress is AWESOME!
Monday, August 2, 2010
Tidbits
Nothing of substance today, just tidbit thoughts muddled together.
I was anxious for the mail to come because I had called the PC's office Thursday. They were going to mail some information on Cole's surgery. No dice. I was bummed.
Saturday, I had to take K to the doc for a rash that's been taking outrageously long to heal. Doc says it's neurodermatitis. Great, now it's all in our heads. :) We grocery shopped after the appointment and I had taken J with us. When we went to the store there were Cardinals balloons in the entrance. I didn't even see them until J yelled 'charge'. He definitely knows the Cardinals logo. Looks like Chelsi has some competition as far as kid fans in our house goes.
I stayed home with the little 3 today. I think I'm a sympathetic person to stomach aches. Chelsi started throwing up at bedtime last night. Over and over and over again. We got her in the shower and I cleaned up...luckily it happened to be in the kitchen. Ever since then I felt sloshy. I don't think I'm actually sick, I think I'm just being sympathetic to her being sick. For some reason I do that a lot when they're sick with a stomach bug. I'm rarely actually sick.
Other than these things, life is normal. Back to work as usual. Hopefully, we'll get to do some extra swimming this week though. Summer's sliding to an end and we're really running out of time. Really hate that.
I was anxious for the mail to come because I had called the PC's office Thursday. They were going to mail some information on Cole's surgery. No dice. I was bummed.
Saturday, I had to take K to the doc for a rash that's been taking outrageously long to heal. Doc says it's neurodermatitis. Great, now it's all in our heads. :) We grocery shopped after the appointment and I had taken J with us. When we went to the store there were Cardinals balloons in the entrance. I didn't even see them until J yelled 'charge'. He definitely knows the Cardinals logo. Looks like Chelsi has some competition as far as kid fans in our house goes.
I stayed home with the little 3 today. I think I'm a sympathetic person to stomach aches. Chelsi started throwing up at bedtime last night. Over and over and over again. We got her in the shower and I cleaned up...luckily it happened to be in the kitchen. Ever since then I felt sloshy. I don't think I'm actually sick, I think I'm just being sympathetic to her being sick. For some reason I do that a lot when they're sick with a stomach bug. I'm rarely actually sick.
Other than these things, life is normal. Back to work as usual. Hopefully, we'll get to do some extra swimming this week though. Summer's sliding to an end and we're really running out of time. Really hate that.
Sunday, August 1, 2010
Broken Heart
I'm still trying hard to understand Cole's heart. I 'thought' I understood it 13 years ago. I just can't believe what was explained to me was not really the whole story. Our family doc is getting his full records so he can help explain things to me since the pediatric cardiologist is 2 hours from us. I can't just pop in for an appointment and getting them on the phone has been near to impossible. I just have generic questions, but since I can't see the post op to know exactly what was in there I can't ask those questions very well.
The PC said he has a goretex (PFTE) monocusp. The NP (that works for the PC) said the documentation they have says transannular patch with monocusp. I'm not totally understanding if they both actually mean the same thing or not. I understand what the patch is, but I don't know if they replaced his valve, patched over his valve or if it was never there. Since no one ever said atresia, I'm guessing it was there, just maybe damaged? After all my googling it looks like standard procedure for a standard tetralogy case is to do what they told me they'd be doing. They'd patch the holes between the ventricles (he had 2)...at least that's what I was told 13 years ago...who knows now...I'll check for that too. Then they take out the muscle build up around the valve that is narrowing causing the stenosis.
When Cole was in surgery they called us in the waiting room to tell us they thought they had finished, but had to put him back on bypass because his pressures were still too high. They never explained what they did in that time, but the new PC's office says that's when the patch was put in place. Makes sense. But, why never tell us? From what I understand, if reducing muscle is not enough that's when the patches are put on. However, withing the first 20 years another surgery is always required and it's to replace the valve completely. So even if they spared his valve it will be replaced. The information I found shows that usually about 10 years out is when the leakage is too much. Most kids are good until then, depending on their specific circumstances. So, I guess if we make it 13+ years we're doing good? Just wish we had known.
So, we'll have another appointment next Spring and do the full run of tests including, xray, EKG, echo, MRI and stress test. Then, we're hoping they'll have a better idea of how well his heart is handling things, how much enlargement there is on the right side and when the surgery is coming. For now, his xray confirmed his echo and he should do okay to next year. Can't say I'm not still nervous, because for the first time in 13 years I am.
I'm trusting God. I just remind myself of that and I feel better for a bit.
Lisa
The PC said he has a goretex (PFTE) monocusp. The NP (that works for the PC) said the documentation they have says transannular patch with monocusp. I'm not totally understanding if they both actually mean the same thing or not. I understand what the patch is, but I don't know if they replaced his valve, patched over his valve or if it was never there. Since no one ever said atresia, I'm guessing it was there, just maybe damaged? After all my googling it looks like standard procedure for a standard tetralogy case is to do what they told me they'd be doing. They'd patch the holes between the ventricles (he had 2)...at least that's what I was told 13 years ago...who knows now...I'll check for that too. Then they take out the muscle build up around the valve that is narrowing causing the stenosis.
When Cole was in surgery they called us in the waiting room to tell us they thought they had finished, but had to put him back on bypass because his pressures were still too high. They never explained what they did in that time, but the new PC's office says that's when the patch was put in place. Makes sense. But, why never tell us? From what I understand, if reducing muscle is not enough that's when the patches are put on. However, withing the first 20 years another surgery is always required and it's to replace the valve completely. So even if they spared his valve it will be replaced. The information I found shows that usually about 10 years out is when the leakage is too much. Most kids are good until then, depending on their specific circumstances. So, I guess if we make it 13+ years we're doing good? Just wish we had known.
So, we'll have another appointment next Spring and do the full run of tests including, xray, EKG, echo, MRI and stress test. Then, we're hoping they'll have a better idea of how well his heart is handling things, how much enlargement there is on the right side and when the surgery is coming. For now, his xray confirmed his echo and he should do okay to next year. Can't say I'm not still nervous, because for the first time in 13 years I am.
I'm trusting God. I just remind myself of that and I feel better for a bit.
Lisa
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