Monday, March 21, 2011
Now the doctor's want to start all over again with new genetic testing. Ahhh!
It has been several years since any testing has been done on Meagan and now the doctor's want to start all over and re-due every test they have already done. But they also want to do muscle biopsy, which I am terrified about because they take a piece of muscle and test it. I don't want to put her through that pain, its very scary. I almost don't want to know. We are happy right now and I don't want to do anything that will change it. However, if she does have something that is life threatening but manageable I want to do everything I can to give her long and happy life. Decisions, decision, why can't life be easy? I am also scared to know the truth, what if she does have a genetic disease? That means we definitely won't be having anymore children. That makes me really sad. I always pictured us have two children hopefully a girl and boy. But that is not the cards that we were dealt and I will have to be a big girl and do the right thing. They are going to start out with the blood tests again and more MRI's. I know its going to be fine but there is nothing worse then not knowing and waiting for all the test to come back negative. I am only going to work with that thought process because anything less would be a dent in my armor. I love my daughter more than my own life and would give it without a single thought if she could have a normal life. Why did this have to happen to her. I remember when she was a baby and I used to tell everyone they better keep on Meagan's good side because she is going to be the first female president. I'm sure every parent feels this way about their children. Our children are our legacy. One thing I have learned in the last six months is that I am even stronger than I thought and my future is going to be limitless. I know this and I will work my ass off to get it! But still in the back of my mind I am terrified to get bad news. I don't know how I will deal with that. I can't even imagine a world that does not include my baby.
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Big hugs to you You are dealing with so much It does make you stronger but sometimes I know it's hard just to put one foot in front of the other Sending blessings and good vibes for a good result!
ReplyDeletewow! the things life hands us!!! hard to know sometimes that things work out for the best and we can't see it at times! blessings sent to ya
ReplyDeleteWow you guys are in my thoughts and prayers. Thinking of you during this time. I too always planned on a boy and a girl but that didn't seem to be the cards we were handed either. I do have a boy though and he is my world! Good thoughts and peace coming your way!
ReplyDeleteShannon, I really feel blessed to finally have the chance to really know you. You do so well at putting on the 'strong face'. I have always been amazed at Meagan's beautiful smile. Sorry we haven't been closer. Life gets so busy, and the miles don't help. Keep on writing. It helps you heal your inner wounds, I know. That is why I write too. Aunt Flip
ReplyDeleteShannon I found you when you replied to my post on Blog Frog. Boy, do I relate to your story and post. We have gone through similar roller coaster rides, with tests, MRI's, possible horrible diagnois, then nothing concrete, only to have to go through it again when something else crops up. We just had some new gentic testing done this year and are awaiting some results. I too have decided to live each day enjoying our wonderful daughter. The truth is none of us know what each day will bring. It does stink though!!! My thoughts and prayers are with you! Thank you for your blog, I'm now a new follower! Take care!
ReplyDeleteI found your blog through BlogFrog. My son has a fatty-acid oxidation disorder (VLCADD), which is a type of mitochondrial disorder. His genetic disorder is autosomal recessive, which means he has to receive one "bad" gene from each parent (carrier). There is only a 1:4 chance any child of ours would have the disorder, 2:4 chance any child would be a carrier, & a 1:4 chance they would be completely unaffected. Depending on the type of disorder they may/may not find through a muscle biopsy, you may have the same "odds."
ReplyDeleteGood luck and I hope all works out for the best. I look forward to reading more of your posts.
I've been following your blog for a while. I work with a little boy and his parents have this website.
ReplyDeletehttp://www.rileyswarriors.org/
You should check it out.
I think you should let for test,it whould be better for her. Thanks.
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