JollyRoger
Shared on Tue, 12/11/2007 - 08:24Many of you have asked me, why I haven't blogged recently. Well, to be completely honest, the less blogs you see, the better things are. But, I want to give a review of the last year and let everyone know, who hasn't been filled in, what's going on at home. I may mis a couple of things, and if I do, I will come back and edit the blog.
So, where do I start? A year ago 2old2play gave my family one of the most generous we have ever received. We're still VERY thankful for that. It made the holidays quite a bit more joyous, with the prior months of stress that we encountered. When the new year began, we were no closer to finding out what was wrong with Megan. Finally, through many phone calls and doctor referrals, we were able to get a consultation appointment with Dr. Shoffner, a leading Neuro-Geneticist located here in Atlanta. His specialty? Something we had heard only mentioned a few times, Mitochondrial Disease. The name of the comapny he works for is Horizon Medical and they are one of three offices in the U.S. that specialize in these types of diseases. So, we met with him and he scheduled a muscle biopsy be taken from Megan, and analyzed for the next 4 months, to determine exactly what she was suffering from. Well, we waited and waited and waited. Those 4 months seemed to never-ending. Through all of this 2old2play prayed and sent their thoughts. Finally, at the end of May, we received the news. Both a relief and burden was placed upon us. She does, in fact, have Mitochondrial Disease. Mitochondrial Encephalomyopathy, with Complexes I-V. A lot to digest, but in short, an incurable disease. We literally mourned for a week. It was a tough jagged pill to swallow, knowing our daughter, this site seemingly adopted child, may not live to her teens. After receiving the results, we then made a follow up appointment with Dr. Kendall (Dr. Shoffner's partner) to explain the results. After attending the LAN (a gift from you) with Megan along with us, which I might add was an awesome experience, we met with Dr. Kendall in late September. Sh pretty much explained things to us in english, since the results were full of big doctor-type words. She said basically what we have read on the internet. Although, she did caution us to not think that there was some sort of time table now. But, to also remember the unpredictability of this disease. Here's how it works. Megan's mitochondria (energy factory of the human body) do not fuinction properly, therefore the energy her body needs to survive is in short supply. As she ages, the energy will get less and less until finally organs just shut off, no warning given, no symptoms, just like a light switch...off. The unfortunate thing is no one knows when that will happen. It's not a matter of if, it's when..period. I wish to God that I could tell you there is a chance she will get over this, or she will be fine. I just can't do that. Megan is our precious gift from God and we will cherish her for as long as He see fits to let us keep her. When he takes her, it will be His will, not ours.
Since September, we have been awaiting a couple of more tests that they are running, to narrow down what type of disease she has (i.e. Lee's Disease, MELAS etc.). We hope to know this in early 2008. This will help the doctors only in treating her when she gets sick. There are no medicines to help cope with this right now. There are experimental drugs that may or may not help with the energy productions, but so far those have failed to the point where she can't take them anymore. They make her sick. The good things that have come out of this? We have gotten closer in our relationship with God. We have made a number of new friends, including more people on this site. We have seen the glory of God shine through others, like you, with your generous gifts and prayers. We have learned to value what life we have and not get wrapped up in petty arguments over the little things. We have learned to love more. Not just each other, but everyone. We are also now on Medicaid to help with the bills, Megan is now on Social Security to help us with home life. Megan has a nurse that comes over 3 days a week to help (and could be 5 days starting in January or February). She is now in a cool wheel chair, that doesn't really look like a wheel chair. Someone donated a wheelchair accessible van to the church, which we now drive. God has met our every need through Himself, and the actions of others.
We are now in a holding pattern. Megan is doing OK. She had a cold a couple of weeks ago but has since gotten better. We are VERY cautious when she starts to sniffle or cough. Fortunately, with having a nurse there, she doesn't automatically have to go to the doctor, the nurse will check her out and let us know.
That's about it, in a nutshell. I know I have probably left a couple of things off, and I apologize. If I remember something, I will edit it. Again, thanks goes out to 2old2play for all you have done for us. We love you guys. Take care and God bless you all.
Romans 5:3-5
" We can rejoice, too, when we run into problems and trials, for we know that they help us develop endurance. And endurance develops strength of character, and character strengthens our confident hope of salvation. And this hope will not lead to disappointment. For we know how dearly God loves us, because he has given us the Holy Spirit to fill our hearts with his love."
END OF LINE
JR
So, where do I start? A year ago 2old2play gave my family one of the most generous we have ever received. We're still VERY thankful for that. It made the holidays quite a bit more joyous, with the prior months of stress that we encountered. When the new year began, we were no closer to finding out what was wrong with Megan. Finally, through many phone calls and doctor referrals, we were able to get a consultation appointment with Dr. Shoffner, a leading Neuro-Geneticist located here in Atlanta. His specialty? Something we had heard only mentioned a few times, Mitochondrial Disease. The name of the comapny he works for is Horizon Medical and they are one of three offices in the U.S. that specialize in these types of diseases. So, we met with him and he scheduled a muscle biopsy be taken from Megan, and analyzed for the next 4 months, to determine exactly what she was suffering from. Well, we waited and waited and waited. Those 4 months seemed to never-ending. Through all of this 2old2play prayed and sent their thoughts. Finally, at the end of May, we received the news. Both a relief and burden was placed upon us. She does, in fact, have Mitochondrial Disease. Mitochondrial Encephalomyopathy, with Complexes I-V. A lot to digest, but in short, an incurable disease. We literally mourned for a week. It was a tough jagged pill to swallow, knowing our daughter, this site seemingly adopted child, may not live to her teens. After receiving the results, we then made a follow up appointment with Dr. Kendall (Dr. Shoffner's partner) to explain the results. After attending the LAN (a gift from you) with Megan along with us, which I might add was an awesome experience, we met with Dr. Kendall in late September. Sh pretty much explained things to us in english, since the results were full of big doctor-type words. She said basically what we have read on the internet. Although, she did caution us to not think that there was some sort of time table now. But, to also remember the unpredictability of this disease. Here's how it works. Megan's mitochondria (energy factory of the human body) do not fuinction properly, therefore the energy her body needs to survive is in short supply. As she ages, the energy will get less and less until finally organs just shut off, no warning given, no symptoms, just like a light switch...off. The unfortunate thing is no one knows when that will happen. It's not a matter of if, it's when..period. I wish to God that I could tell you there is a chance she will get over this, or she will be fine. I just can't do that. Megan is our precious gift from God and we will cherish her for as long as He see fits to let us keep her. When he takes her, it will be His will, not ours.
Since September, we have been awaiting a couple of more tests that they are running, to narrow down what type of disease she has (i.e. Lee's Disease, MELAS etc.). We hope to know this in early 2008. This will help the doctors only in treating her when she gets sick. There are no medicines to help cope with this right now. There are experimental drugs that may or may not help with the energy productions, but so far those have failed to the point where she can't take them anymore. They make her sick. The good things that have come out of this? We have gotten closer in our relationship with God. We have made a number of new friends, including more people on this site. We have seen the glory of God shine through others, like you, with your generous gifts and prayers. We have learned to value what life we have and not get wrapped up in petty arguments over the little things. We have learned to love more. Not just each other, but everyone. We are also now on Medicaid to help with the bills, Megan is now on Social Security to help us with home life. Megan has a nurse that comes over 3 days a week to help (and could be 5 days starting in January or February). She is now in a cool wheel chair, that doesn't really look like a wheel chair. Someone donated a wheelchair accessible van to the church, which we now drive. God has met our every need through Himself, and the actions of others.
We are now in a holding pattern. Megan is doing OK. She had a cold a couple of weeks ago but has since gotten better. We are VERY cautious when she starts to sniffle or cough. Fortunately, with having a nurse there, she doesn't automatically have to go to the doctor, the nurse will check her out and let us know.
That's about it, in a nutshell. I know I have probably left a couple of things off, and I apologize. If I remember something, I will edit it. Again, thanks goes out to 2old2play for all you have done for us. We love you guys. Take care and God bless you all.
Romans 5:3-5
" We can rejoice, too, when we run into problems and trials, for we know that they help us develop endurance. And endurance develops strength of character, and character strengthens our confident hope of salvation. And this hope will not lead to disappointment. For we know how dearly God loves us, because he has given us the Holy Spirit to fill our hearts with his love."
END OF LINE
JR
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Comments
Submitted by Gatsu on Tue, 12/11/2007 - 08:27
Submitted by SoupNazzi on Tue, 12/11/2007 - 09:02
Submitted by Big0ne on Tue, 12/11/2007 - 13:04
Submitted by WallyBR on Tue, 12/11/2007 - 13:07