Monday, August 4, 2008
Searching
I often find myself searching for answers on the internet. I have spent hour after hour on the computer reading medical journals. I have written emails to doctors telling them about Chloe and at the same time trying to get more information out of them. I have spent countless hours reading blogs of parents whose children have Heterotaxy. Sometimes, I feel it is not enough. I am like a sponge soaking up as much knowledge as I can. I am trying my best to understand this complex syndrome. But, at times I find myself lost in a pool of information. I think of the parents whose children have it worse then Chloe. I want so much to reach out to those parents who are trying to understand this multifaceted disease. I don’t understand it myself and I never will. All I know is that no 2 children are the same. Each child is different from the next. 4 in 1 million children have Heterotaxy with Asplenia or Polysplenia.
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2 comments:
There is so much to learn and digest with this syndrome...it amazes me how different every child with this syndrome can be - the spectrum of challenges and aliments. It can be over whelming.
We are so lucky that DJ has no issues - I have heard so many problems for other families and I count our blessings - but I always wonder when or if the "other boot will fall".
There will always be unknowns and mysteries...but I want you to know how invaluable and wonderful your blog is - I find answers, strength and support here...thank you.
Hugs to you and the kids.
I do feel like I'm lost in a "pool of information" as well. At the same time, I feel like there isn't enough information about heterotaxy. The doctors barely understand this anomaly, how are we to fully understand? The best we can do is to take it one day at a time, and educate ourselves as much as possible to keep our children as "healthy" as possible. Thank you for sharing all your information.
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