JollyRoger
Shared on Thu, 05/22/2008 - 11:33From Megan's Blog:
Is Megan Really Sick?
Does she really have Mitochondrial disease? That thought crosses my mind every now and then. When we get home from somewhere, if she is feeling up to it, we unhook Megan and let her get down to pick her flowers. She LOVES picking flowers. Tonight when we got home from church, I sat and watched as Megan gently bent down and smelled a little pink flower before she picked it. I once again said to myself, I still can't believe she has Mito disease. Her doctor said two weeks ago we could have easily lost Megan. Those are not easy words to hear. But yet today, she was standing there looking absolutely beautiful as she was so elated to see her flowers. I couldn't take my eyes off of her. From what the doctors say, things are just going to get worse for Megan if we can't find a cure. He told us on Friday, the permanent port needs to be put in because it is not a matter of "if" it is only a matter of "when" and we need to be prepared. It didn't take much for Megan to get sick this time. It hit her hard and fast. Thankfully she has bounced back decently well. Of course not without extra meds and a new drain tube and a few other changes but needless to say we made it through. They are more worried about the next time. Each time a mito kid gets sick it just gets harder and harder on them. He said that as good as Megan does through all of this, it is still very hard on her body and her digestive system is just having so many issues that it going to get harder. We know what can happen. We have known since Megan got diagnosed. We also know that things have changed for Megan. Things that we thought might have gone away came back full force this last time in the hospital. It was kind of sad to see. I will tell you this. Megan is a fighter. I believe all Mito kids are. Some days Megan screams from the pain in her muscles and tummy. But it takes nothing for her to get that beautiful smile right back and move on like she has no problems at all. She never knows when she is going to get sick or when the pain will set in but it never stops her from giving a hug or saying I love you. She sat in her chair as her doctor and I looked at her in amazement because of how sick she had been in the hospital. She had a pretty bad choking spell and it just wore her out. She briefly opened her eyes enough to look at him and give him a sweet smile and it brought him to tears. Was it her way of saying, once again, You guys, we've (her and Jesus are very close)got this. Don't you worry about a thing. Those of you who know Megan well, know that she is one amazing girl. She may have cyclic vomiting, violent choking spells, horrible pain at times, tummy tubes, complete exhaustion, seizures, and a port in her future. However, she also plays, sings, laughs, yells at her brothers when they are getting out of control or not giving her what she wants, runs, reads, loves Jesus and anything else she can put her mind to. I can promise you this, Megan may have Mitochondrial Disease but Mitochondrial Disease does not have Megan!
And for Zikan:
END OF LINE
JR
Is Megan Really Sick?
Does she really have Mitochondrial disease? That thought crosses my mind every now and then. When we get home from somewhere, if she is feeling up to it, we unhook Megan and let her get down to pick her flowers. She LOVES picking flowers. Tonight when we got home from church, I sat and watched as Megan gently bent down and smelled a little pink flower before she picked it. I once again said to myself, I still can't believe she has Mito disease. Her doctor said two weeks ago we could have easily lost Megan. Those are not easy words to hear. But yet today, she was standing there looking absolutely beautiful as she was so elated to see her flowers. I couldn't take my eyes off of her. From what the doctors say, things are just going to get worse for Megan if we can't find a cure. He told us on Friday, the permanent port needs to be put in because it is not a matter of "if" it is only a matter of "when" and we need to be prepared. It didn't take much for Megan to get sick this time. It hit her hard and fast. Thankfully she has bounced back decently well. Of course not without extra meds and a new drain tube and a few other changes but needless to say we made it through. They are more worried about the next time. Each time a mito kid gets sick it just gets harder and harder on them. He said that as good as Megan does through all of this, it is still very hard on her body and her digestive system is just having so many issues that it going to get harder. We know what can happen. We have known since Megan got diagnosed. We also know that things have changed for Megan. Things that we thought might have gone away came back full force this last time in the hospital. It was kind of sad to see. I will tell you this. Megan is a fighter. I believe all Mito kids are. Some days Megan screams from the pain in her muscles and tummy. But it takes nothing for her to get that beautiful smile right back and move on like she has no problems at all. She never knows when she is going to get sick or when the pain will set in but it never stops her from giving a hug or saying I love you. She sat in her chair as her doctor and I looked at her in amazement because of how sick she had been in the hospital. She had a pretty bad choking spell and it just wore her out. She briefly opened her eyes enough to look at him and give him a sweet smile and it brought him to tears. Was it her way of saying, once again, You guys, we've (her and Jesus are very close)got this. Don't you worry about a thing. Those of you who know Megan well, know that she is one amazing girl. She may have cyclic vomiting, violent choking spells, horrible pain at times, tummy tubes, complete exhaustion, seizures, and a port in her future. However, she also plays, sings, laughs, yells at her brothers when they are getting out of control or not giving her what she wants, runs, reads, loves Jesus and anything else she can put her mind to. I can promise you this, Megan may have Mitochondrial Disease but Mitochondrial Disease does not have Megan!
And for Zikan:
END OF LINE
JR
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Comments
Submitted by tait on Thu, 05/22/2008 - 15:49
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