For those of you who don't know we are going to attend the Jacob's Cure Canavan Research Summit & Family Conference next weekend in Harrison, New York. What that means is if you are a facebook friend of mine you are going to have to see me count the days down until we leave. Lucky you!! lol We are very excitied to go to the summit. We get to meet many of the wonderful familes we have been talking to and meet all the researchers that have been working so hard to find a cure to Canavan. To read more about the Summit please see the news article located at http://www.lohud.com/apps/pbcs.dll/article?AID=2011105230319 . It has some really great info in it!
In other news I have received two years free hosting from Hostable Web Hosting (http://www.hostable.com) and registered lilysfight.org through Go Daddy! in our first steps to create The Fight For Lily's Future Foundation which will raise money for Canavan and Epilepsy research. We are seriously in our infancy right now. The website is going to take me a while to get going. But when it is ready I will post on here and let you all know!
Also we have another fund raiser coming up in July. Please keep an eye here or at http://4pawsforlily.blogspot.com/ for more information about that.
As always thanks for reading!!
Thursday, May 26, 2011
Sunday, May 22, 2011
I think all parents compare their children to kids of the same age. I know I always have. CJ was always behind in his small motor skills (just like his mama) but I never let it bother me. I knew that he would catch up and he has. However with Lily I find that I can be at times a little obsessed with my comparing. For instance, Lily plays soccer on Saturdays (pics coming soon!). I watch to see what the other kids on her team are doing and what she is doing. They are playing soccer. She is doing ballet, jumping in mud puddles, waving to the crowd, stopping to drop a one-liner here or there, etc. So for a few minutes I feel concerned and slightly frustrated. But then I remember CJ playing t-ball at her age. I remember him digging in the sand when he was suppose to be a 2nd basemen. Him doing handstands in the outfield, etc, etc. Taking a deep breath I realize that this is just my daughter's personality. Not everything can be blamed on Canavan. It's just hard sometimes or me to tell the difference.
We are truly blessed that we had CJ first. CJ provides an excellent basis of comparison for things that Lily does. He keeps me calm because I can look back on things he did at such and such an age and realize that most things are just her personality.
Lily has had 4 evaluations. 3 done by Akron Children's Hospital and 1 done by Green Local Schools. All the evals say that Lily is just about where she should be for her age. That is very much a cause to celebrate! Now I just wish that medical professionals would stop saying to me "Let's just hope that continues." I REALLY don't need to be reminded all the time that it may not. Trust me, I am more aware of it than any of them could ever imagine.
I try not to over push Lily and try to be aware of when I might be just a little (or more lol) over the top. She has to move at her own pace and I know that if I push, she may just back slide. But it's hard sometimes. Finding that perfect balance. Between pushing to what she is capable to do and trying to push her beyond.
Thank you for reading!
We are truly blessed that we had CJ first. CJ provides an excellent basis of comparison for things that Lily does. He keeps me calm because I can look back on things he did at such and such an age and realize that most things are just her personality.
Lily has had 4 evaluations. 3 done by Akron Children's Hospital and 1 done by Green Local Schools. All the evals say that Lily is just about where she should be for her age. That is very much a cause to celebrate! Now I just wish that medical professionals would stop saying to me "Let's just hope that continues." I REALLY don't need to be reminded all the time that it may not. Trust me, I am more aware of it than any of them could ever imagine.
I try not to over push Lily and try to be aware of when I might be just a little (or more lol) over the top. She has to move at her own pace and I know that if I push, she may just back slide. But it's hard sometimes. Finding that perfect balance. Between pushing to what she is capable to do and trying to push her beyond.
Thank you for reading!
Sunday, May 15, 2011
Acceptance or How I Went From Coward to Fighter in the Span of a Year
When Lily was first diagnosed with Epilepsy I had read something about accepting the situation, that was the only way to move forward. I remember I was horrified by such a suggestion. I would never accept that this was anything other than just a fluke. A one or two time deal. Then she had more seizures but I still clung to my resolve, this wasn't real, that this would go away someday. This wasn't possible. This was not happening to my child. No way!
There was no way I was going to accept this situation because if I did, it would make it all real and true. Can't go there. Not gonna happen.
So I stuck on my smiling face, smiling at people when they asked how do you do it? Just smile and said I just do. But I did simply because I didn't believe. Denial at its finest.
Jump ahead to now, many, many months later. I have come to accept the whole situation. The Epilepsy, the Canavan. I can't really tell you when I moved from denial to acceptance, but I can tell you this. You can't move forward without acceptance. You can get nothing accomplished without it. If you don't acknowledge the situation head on then you certainly can't deal with it, move forward with your life, work on changing things, etc. Now don't misunderstand me when I say changing things. I know I cannot change the fact that my daughter has Canavan or Epilepsy, that is something that is set in stone. That fact I no longer deny. But what I do deny is that nothing can be done to change things.
Another fact I deny is that Canavan is rare. Here's what I believe. What they call traditional Canavan is rare. I think the form Lily has is not. Why? Simple if not for her seizures she would have gone undiagnosed. So you may think but she has the seizures therefore Canavan, but wait! My husbands family has a history of Epilepsy. It has been suggested to me that the seizures may not be being caused by the Canavan. So if that history of Epilepsy was not there, Lily may not have seizures, therefore she would not be diagnosed. You follow me?
So why is this such a big deal, you may wonder. After all Lily is not being treated for Canavan because outside the seizures there is nothing to treat (she is being treated for the seizures however). So if kids like Lily go undiagnosed it's not a big deal, right?
Wrong!! Why? Because Canavan needs numbers. There it is, point blank. If there are cases out there that are not diagnosed, they need to be. As a rare disease Canavan receives virtually no funding for research. What does this mean to kids like Lily? Not much. What does this mean to kids with "traditional" Canavan? The world! With research we can cure these kids, with research we can give the kids their lives back. These kids have as much of a right to a normal life as anyone else. Fate has dealt them a terrible hand. YOU can help over come that.
How? You may think. This thing is huge, how can one person make a difference? Well money makes the world go around, so they say. But I disagree, I think it's love. If you are like me and as broke as a joke there are still things that you can do. All it will cost you is time and think of the joy you will gain in your heart knowing that you did what you could to help!
First, educate your self on Canavan. When researching Canavan, watch out for out dated info. Trust me there is a lot out there! A good place to start is http://jacobscure.org/. As you read you may think, I don't understand half of what this is all about, so let me put this in non medical terms. The coating that covers our nerves (which transmits nerve impulses necessary for us to function) is destroyed and does not regenerate in kids with Canavan. That means loose of hearing, sight, swallowing, etc. and eventually death if that process is not stopped. Take this education and spread it. Tell everyone you know about Canavan, including medical professionals! I think you would be surprised by the amount of medical professionals that know nothing of Canavan.
If you aren't into talking to people then consider hosting a screening party for As Daylight Breaks http://jacobscure.org/sponsor.php Once again this will only cost you time.
Before you close this page I want you to look at a previous post called Please Read. You can find it to the right under popular posts. Look at the children. I mean really look at them. They won't go away once you close this page. Their lives still go on and their families still pray for a cure. You can be a part of that process. Open your heart to the children and their families. THEY NEED YOU!! Please don't turn your back on these kids!
As always thanks for reading and please spread this post!!
There was no way I was going to accept this situation because if I did, it would make it all real and true. Can't go there. Not gonna happen.
So I stuck on my smiling face, smiling at people when they asked how do you do it? Just smile and said I just do. But I did simply because I didn't believe. Denial at its finest.
Jump ahead to now, many, many months later. I have come to accept the whole situation. The Epilepsy, the Canavan. I can't really tell you when I moved from denial to acceptance, but I can tell you this. You can't move forward without acceptance. You can get nothing accomplished without it. If you don't acknowledge the situation head on then you certainly can't deal with it, move forward with your life, work on changing things, etc. Now don't misunderstand me when I say changing things. I know I cannot change the fact that my daughter has Canavan or Epilepsy, that is something that is set in stone. That fact I no longer deny. But what I do deny is that nothing can be done to change things.
Another fact I deny is that Canavan is rare. Here's what I believe. What they call traditional Canavan is rare. I think the form Lily has is not. Why? Simple if not for her seizures she would have gone undiagnosed. So you may think but she has the seizures therefore Canavan, but wait! My husbands family has a history of Epilepsy. It has been suggested to me that the seizures may not be being caused by the Canavan. So if that history of Epilepsy was not there, Lily may not have seizures, therefore she would not be diagnosed. You follow me?
So why is this such a big deal, you may wonder. After all Lily is not being treated for Canavan because outside the seizures there is nothing to treat (she is being treated for the seizures however). So if kids like Lily go undiagnosed it's not a big deal, right?
Wrong!! Why? Because Canavan needs numbers. There it is, point blank. If there are cases out there that are not diagnosed, they need to be. As a rare disease Canavan receives virtually no funding for research. What does this mean to kids like Lily? Not much. What does this mean to kids with "traditional" Canavan? The world! With research we can cure these kids, with research we can give the kids their lives back. These kids have as much of a right to a normal life as anyone else. Fate has dealt them a terrible hand. YOU can help over come that.
How? You may think. This thing is huge, how can one person make a difference? Well money makes the world go around, so they say. But I disagree, I think it's love. If you are like me and as broke as a joke there are still things that you can do. All it will cost you is time and think of the joy you will gain in your heart knowing that you did what you could to help!
First, educate your self on Canavan. When researching Canavan, watch out for out dated info. Trust me there is a lot out there! A good place to start is http://jacobscure.org/. As you read you may think, I don't understand half of what this is all about, so let me put this in non medical terms. The coating that covers our nerves (which transmits nerve impulses necessary for us to function) is destroyed and does not regenerate in kids with Canavan. That means loose of hearing, sight, swallowing, etc. and eventually death if that process is not stopped. Take this education and spread it. Tell everyone you know about Canavan, including medical professionals! I think you would be surprised by the amount of medical professionals that know nothing of Canavan.
If you aren't into talking to people then consider hosting a screening party for As Daylight Breaks http://jacobscure.org/sponsor.php Once again this will only cost you time.
Before you close this page I want you to look at a previous post called Please Read. You can find it to the right under popular posts. Look at the children. I mean really look at them. They won't go away once you close this page. Their lives still go on and their families still pray for a cure. You can be a part of that process. Open your heart to the children and their families. THEY NEED YOU!! Please don't turn your back on these kids!
As always thanks for reading and please spread this post!!
Monday, May 9, 2011
MRI results
So got the results back on Lily's MRI on Friday. Nothing has changed in 14 months, which is most excellent.
Now we are getting ready to attend the Jacob's Cure Canavan Conference and Family Summit in NY at the beginning of June. We are really looking forward to meeting the other families and the researchers!
This week will be spent running her and there gathering things I think the researchers may want, like the MRI, test results, ect.
I know this is just a short update but you know what they say....no news is good news!
As always, thank you for reading!
Now we are getting ready to attend the Jacob's Cure Canavan Conference and Family Summit in NY at the beginning of June. We are really looking forward to meeting the other families and the researchers!
This week will be spent running her and there gathering things I think the researchers may want, like the MRI, test results, ect.
I know this is just a short update but you know what they say....no news is good news!
As always, thank you for reading!
Monday, May 2, 2011
All's well
So we are back from her MRI and all went just fine. She is a little loopy but happily munching on a frosty right now. So all is good and I can now let out my held breath! lol Of course the waiting game is now waiting to her from her Dr with the results, but he is pretty fast so I don't anticipate a long wait.
Also Lily is in our local paper today! You can view the article at http://www.ohio.com/news/121071864.html
As always thanks for reading and I will update again as soon as I hear from the Dr.
Also Lily is in our local paper today! You can view the article at http://www.ohio.com/news/121071864.html
As always thanks for reading and I will update again as soon as I hear from the Dr.
Sunday, May 1, 2011
MRI
So Lily has an MRI scheduled for the morning. It was scheduled two other times but both time she came down ill and we were unable to do it. But she is good so looks like she will be having it done tomorrow.
I am rather apprehensive about it. She has had one done before but that was under general due to her sleep apnea. The sleep apnea is gone now (YAY!) so she will be put under sedation tomorrow. I know it's not a big deal but since this is something new for us....well I worry. I am sure she will be ok. After all it's Akron Childrens and they really know their stuff, but being mom, I guess worrying is my job. lol
In other Lily news, Lily has started playing soccer on the Green Grasshopper League. That is so cute and funny! I will be getting some vid's up here soon of her playing or should I say posing for the camera. If we have the camera out she will run by grinning, not a care in her head about where the soccer ball is or which team has it. lol
Also in June Lily will start horse back riding lessons once a week. I think that should be a lot of fun for her and help improve her small motor skills.
I will update tomorrow after we get home form the MRI and then of course I will update again once I speak with her doctor about the results to see if there has been any changes.
As always, thank you for reading and caring!
I am rather apprehensive about it. She has had one done before but that was under general due to her sleep apnea. The sleep apnea is gone now (YAY!) so she will be put under sedation tomorrow. I know it's not a big deal but since this is something new for us....well I worry. I am sure she will be ok. After all it's Akron Childrens and they really know their stuff, but being mom, I guess worrying is my job. lol
In other Lily news, Lily has started playing soccer on the Green Grasshopper League. That is so cute and funny! I will be getting some vid's up here soon of her playing or should I say posing for the camera. If we have the camera out she will run by grinning, not a care in her head about where the soccer ball is or which team has it. lol
Also in June Lily will start horse back riding lessons once a week. I think that should be a lot of fun for her and help improve her small motor skills.
I will update tomorrow after we get home form the MRI and then of course I will update again once I speak with her doctor about the results to see if there has been any changes.
As always, thank you for reading and caring!
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