My Charley Girl
Friday, August 20, 2010
Sunday, July 18, 2010
Clinic Visit- July 12, 2010
I hope all of you are having an enjoyable, healthy summer. The weather has been so beautiful here in Michigan and we have enjoyed countless hours swimming and relaxing in the pool. It has offered me a lot of relaxation and I am just as thankful to my parents as the kids are to have it.
Alaina and Charlotte were scheduled two weeks ago for their appointment with Dr. L'Ecuyer but we had to postpone until last Monday due to everyone here being sick. I always start worrying the week before an appointment so postponing them only causes extended worrying, which is not enjoyable.
No matter how much time passes with safe cardiology appointments I am always fearful we're going to begin the road I am not yet ready to travel. Thankfully we avoided it once again. Charlotte is doing great as far as her weight and height are concerned. For awhile there we were struggling crossing percentiles and Dr. L'ecuyer was seeing trends that he felt were pressing the idea of listing her further front and center. This time she had gone from the 10th percentile to the 25th. He thought she looked great, talking, and running around the office, she just continues to suck everyone in with her sweet, silly and sassy personality.
I must admit because of her recent growth pattern I had a small inkling of hope that we were going to be elated by improvement in her function. I hid it well so when he said everything was still the same I didn't show it. Her heart is exactly the same, or as Dr. L'ecuyer put it she looks lousy on her echo but great in person;) So once again I will take this and be thankful that she is still here, growing, bossing and toddlering.
Alaina's Echo also went well as there has been no change in her heart function, it is still normal. They were able to estimate her pulmonary pressures (something they can only do through heart catheterizations for Charley) and those were normal as well. He said Alaina's heart was two deviations above normal last time and now it is 1.5 so that is a good thing too. It has gotten smaller and not larger.
We discussed doing genetic testing and I am still sort of on the fence about it. The Nurse Practitioner who handles the lab gave me all of the information to look through and I think if we pursue it, I will have it started during Charlotte's next heart cath in October so she will be knocked out when the blood is taken. It can be VERY expensive and we wouldn't know how much so until the genetic lab receives the blood and talks to the insurance company. I still feel that if by some chance we could find a genetic abnormality (which there is only a 25% chance) that we could have Alaina tested to see if she carries the same abnormality. I think Dr. L'ecuyer still feels that it is unnecessary as most dilated cardiomyopathies do not carry the same familial occurence that say, hypertrophic does. I on the other hand think I will rest easier if we have it done, even with the chances that we may not find anything at all. So that question, answer is still up in the air.
I actually started this post on Monday of this week, but I am taking composition II right now and writing my paper got in the way, so today is actually Friday when I'm finishing this. It is so fitting of our story the way my week has swayed and ebbed emotionally. I suppose it's still this way every week and yet I wrote this poor suffering Mom on the CCF listserve some bullshit about how the first year is the hardest, it does get better, you learn to cope. After I finished and hit "send" I realized how much I am still "IN IT" so to speak. Anyone who saw the movie Garden State will understand what that means.
I have been feeling good, positive even that our outcome in this will be a long healthy LIFE. Notice, I don't write as often as that first year, things are returning somewhat to our normal that we had before. Jason is golfing again, I am spending time with my friends, taking classes, and not crying nearly as much. Yet every week my emotions swing, and as I read this Mom's (the one I wrote, who is only 6 months out from her daughters diagnosis) posting and finally saw ECLIPSE tonight it is reminding me how still NEW this all is. My life is soo consumed by it that at my class on wednesday we had two and a half hours to find a new research topic for our next paper I just sat there blank. I realized, through talking to my teacher that my life is ALL consumed by organs, transplants, cardiomyopathy, medications, insurance companies, respiratory rates, heart rates, nursing, specialists, and on and on. What the hell else is there, our life is still the AFTER diagnosis life and when I look at pictures of Charley at 2,3,4, months old I cry and can barely stand to look at them because every fricken idea that I had of my life went down the toilet that Apirl 24th, 2009 at 1am in the morning.
All of my idea's about what I wanted, what I believed in, my marriage, my house, car, kids, all of it has been completely altered and I can NEVER go back to being blissfully unaware. I watch my daughter like she's a ghost and not just her but Alaina and Jake as well, like I'm just waiting for all of it to disappear. People tell me all of the time that "everything is going to be fine", or your daughters so cute and strong "she's going to get better", and I just smile now and say "yeah I know" when what I really want to do is absolutely scream. I have seen an incredible amount of cute ass kids who died, they had great parents, great houses, great f in cars. They had crappy cars, and houses, and parents, and none of it mattered when they died. NONE OF IT.... The truth is Charlotte might live until tomorrow, or she might live to be 30, or she might make it to old age, and no one can tell me for sure about anything, or anyone for that matter. It sucks, loving someone so truly, with a heightened sense of poor security. Or no security at all for that matter, and I realize as people tell me ALL OF THE TIME that none of us are guaranteed a tomorrow but come on, charlotte's standing on the edge of a cliff. This is still hard, it is still raw and for me to tell that Mom that oh, "it gets better and easier was complete crap on my part". I should know better by now, no one can fix anything, or make it better, all we can do is love like hell, understand the best we can, try not to run from the pain, and pick up the people that fall.
I'll write a happy positive update later when I feel all warm and fuzzy but for tonight I'm just not feeling it.
Alaina and Charlotte were scheduled two weeks ago for their appointment with Dr. L'Ecuyer but we had to postpone until last Monday due to everyone here being sick. I always start worrying the week before an appointment so postponing them only causes extended worrying, which is not enjoyable.
No matter how much time passes with safe cardiology appointments I am always fearful we're going to begin the road I am not yet ready to travel. Thankfully we avoided it once again. Charlotte is doing great as far as her weight and height are concerned. For awhile there we were struggling crossing percentiles and Dr. L'ecuyer was seeing trends that he felt were pressing the idea of listing her further front and center. This time she had gone from the 10th percentile to the 25th. He thought she looked great, talking, and running around the office, she just continues to suck everyone in with her sweet, silly and sassy personality.
I must admit because of her recent growth pattern I had a small inkling of hope that we were going to be elated by improvement in her function. I hid it well so when he said everything was still the same I didn't show it. Her heart is exactly the same, or as Dr. L'ecuyer put it she looks lousy on her echo but great in person;) So once again I will take this and be thankful that she is still here, growing, bossing and toddlering.
Alaina's Echo also went well as there has been no change in her heart function, it is still normal. They were able to estimate her pulmonary pressures (something they can only do through heart catheterizations for Charley) and those were normal as well. He said Alaina's heart was two deviations above normal last time and now it is 1.5 so that is a good thing too. It has gotten smaller and not larger.
We discussed doing genetic testing and I am still sort of on the fence about it. The Nurse Practitioner who handles the lab gave me all of the information to look through and I think if we pursue it, I will have it started during Charlotte's next heart cath in October so she will be knocked out when the blood is taken. It can be VERY expensive and we wouldn't know how much so until the genetic lab receives the blood and talks to the insurance company. I still feel that if by some chance we could find a genetic abnormality (which there is only a 25% chance) that we could have Alaina tested to see if she carries the same abnormality. I think Dr. L'ecuyer still feels that it is unnecessary as most dilated cardiomyopathies do not carry the same familial occurence that say, hypertrophic does. I on the other hand think I will rest easier if we have it done, even with the chances that we may not find anything at all. So that question, answer is still up in the air.
I actually started this post on Monday of this week, but I am taking composition II right now and writing my paper got in the way, so today is actually Friday when I'm finishing this. It is so fitting of our story the way my week has swayed and ebbed emotionally. I suppose it's still this way every week and yet I wrote this poor suffering Mom on the CCF listserve some bullshit about how the first year is the hardest, it does get better, you learn to cope. After I finished and hit "send" I realized how much I am still "IN IT" so to speak. Anyone who saw the movie Garden State will understand what that means.
I have been feeling good, positive even that our outcome in this will be a long healthy LIFE. Notice, I don't write as often as that first year, things are returning somewhat to our normal that we had before. Jason is golfing again, I am spending time with my friends, taking classes, and not crying nearly as much. Yet every week my emotions swing, and as I read this Mom's (the one I wrote, who is only 6 months out from her daughters diagnosis) posting and finally saw ECLIPSE tonight it is reminding me how still NEW this all is. My life is soo consumed by it that at my class on wednesday we had two and a half hours to find a new research topic for our next paper I just sat there blank. I realized, through talking to my teacher that my life is ALL consumed by organs, transplants, cardiomyopathy, medications, insurance companies, respiratory rates, heart rates, nursing, specialists, and on and on. What the hell else is there, our life is still the AFTER diagnosis life and when I look at pictures of Charley at 2,3,4, months old I cry and can barely stand to look at them because every fricken idea that I had of my life went down the toilet that Apirl 24th, 2009 at 1am in the morning.
All of my idea's about what I wanted, what I believed in, my marriage, my house, car, kids, all of it has been completely altered and I can NEVER go back to being blissfully unaware. I watch my daughter like she's a ghost and not just her but Alaina and Jake as well, like I'm just waiting for all of it to disappear. People tell me all of the time that "everything is going to be fine", or your daughters so cute and strong "she's going to get better", and I just smile now and say "yeah I know" when what I really want to do is absolutely scream. I have seen an incredible amount of cute ass kids who died, they had great parents, great houses, great f in cars. They had crappy cars, and houses, and parents, and none of it mattered when they died. NONE OF IT.... The truth is Charlotte might live until tomorrow, or she might live to be 30, or she might make it to old age, and no one can tell me for sure about anything, or anyone for that matter. It sucks, loving someone so truly, with a heightened sense of poor security. Or no security at all for that matter, and I realize as people tell me ALL OF THE TIME that none of us are guaranteed a tomorrow but come on, charlotte's standing on the edge of a cliff. This is still hard, it is still raw and for me to tell that Mom that oh, "it gets better and easier was complete crap on my part". I should know better by now, no one can fix anything, or make it better, all we can do is love like hell, understand the best we can, try not to run from the pain, and pick up the people that fall.
I'll write a happy positive update later when I feel all warm and fuzzy but for tonight I'm just not feeling it.
Tuesday, May 18, 2010
Video of Charlotte
I am super excited about starting this blog, since I began searching it out and thinking about setting it up permenantly I have found even more cool things about it. I can update it from my smartphone droid just by texting, so that if we are in hospital it will be super easy to keep you all updated with status's and pictures. I can post videos of Charlotte so that all of you can grow with her and see what you have helped hold together. I may post things about our family in general as well for my long distance relatives, friends and followers of our journey. This disease and any for that matter impacts the family as a whole and I don't want Alaina and Jake to ever feel that they do not deserve special devotion.
This year I would have fallen if all of you had not been here cheering me on. People ask all of the time what they can do to help, and most of the time I have no idea. I want to say "well can you fix Charlotte;)?", but praying for her and passing on the knowledge of kids like her will have a very large impact on us all and it has meant the absolute WORLD to us.
This year I would have fallen if all of you had not been here cheering me on. People ask all of the time what they can do to help, and most of the time I have no idea. I want to say "well can you fix Charlotte;)?", but praying for her and passing on the knowledge of kids like her will have a very large impact on us all and it has meant the absolute WORLD to us.
Monday, May 17, 2010
Hi everyone,
I decided that it was time to move our families story to a different outlet. Carepages has been a wonderful way to keep everyone in touch but it is very limiting in sharing photos, isn't always user friendly, and can not upload videos at all. This diagnosis of Charley's is lifelong and although I can't promise I won't change this again, I am hoping that this blog will be a home for us, and a way that you can watch her grow and continue to be part of our journey.
We reached a year out of the hospital on April 24th and for days prior and even now a few weeks after I just can't stop reflecting, I suppose everyday is like this for me now, but every milestone brings it ever more front and center. I just couldn't help but think how far we have come and although nothing has changed within her heart, everything has changed for our's. I hope that through our story, our challenges, or whatever we face with all of you behind us, that we will all learn a little bit about the things that are most important.
So welcome to our new home;) Thank you for supporting us, praying for us and feel free to pass this along to anyone you tell about our Charley.
I decided that it was time to move our families story to a different outlet. Carepages has been a wonderful way to keep everyone in touch but it is very limiting in sharing photos, isn't always user friendly, and can not upload videos at all. This diagnosis of Charley's is lifelong and although I can't promise I won't change this again, I am hoping that this blog will be a home for us, and a way that you can watch her grow and continue to be part of our journey.
We reached a year out of the hospital on April 24th and for days prior and even now a few weeks after I just can't stop reflecting, I suppose everyday is like this for me now, but every milestone brings it ever more front and center. I just couldn't help but think how far we have come and although nothing has changed within her heart, everything has changed for our's. I hope that through our story, our challenges, or whatever we face with all of you behind us, that we will all learn a little bit about the things that are most important.
So welcome to our new home;) Thank you for supporting us, praying for us and feel free to pass this along to anyone you tell about our Charley.
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