ok the last post should've posted some time last week...
update: we have an appt at the MD clinic on Thursday! da da da daaaaa!!!! so check back Friday-ish to find out how that went... I really have no idea what to expect. but they did keep trying to make his appt like it was a follow up, I had to say quite a few times that it wasn't really a follow up because we have never seen any of the drs other than the nurse practitioner. I think the dude was confused because we have been there twice but haven't seen any of the specialists... so well see how it goes!
we have some other sad stuff going on at the moment... but ill write about that later. nothing to do with the kids though, so dont worry! but dont you hate when youre in a down mood and all you want to do is listen to melancholy music which only further deepens your sadness? ugh... vicious cycles and their vicious cycling ways...
the word melancholy reminds of the movie 'melancholia' super weird... just fyi...
Showing posts with label mda. Show all posts
Showing posts with label mda. Show all posts
Monday, July 29, 2013
Wednesday, March 6, 2013
dmd.
after a full year of questions, doctors visits, physical therapy and whatever else we've gone through with our happy baby, we finally have an answer. id like to tell you that its something that with a little time and effort, our sweet boy will be fine. but, unfortunately we were given a diagnosis that is incurable.
my son has duchenne muscular dystrophy.
duchennes is one of the most common and most severe of the different types of muscular dystrophy, but being a common form means that there is always new research and clinical trials being done to not necessarily cure the disease, but at least improve the quality of, and prolong life.
i think we're still kind of shocked by the news.. its just so much to take in. hes fine right now and i guess the current plan of action is to go back to the clinic in may where he'll meet with a team of doctors including a physiotherapist that will track where he is in terms of physical development so that we will be able to see where he's progressing and also when he starts to decline. he'll also see a cardiologist that day to check his heart because your heart is a muscle so it also needs to be monitered.
i also had bloodwork done yesterday to see if im a carrier and the reason finny has dmd, if it turns out that i am, then we will have to get ashey tested just to make sure he doesnt also have it. i dont think that he does, but we would much rather be sure.
its so weird to even think about... you get married and have this plan in your head of what your life will be like, and when something comes along to completely change it, it feels like theres a million things to be sad about. the fact that finnys life wont be normal and we are going to watch him get progressively worse as time goes by is almost unbearable. no parent should ever have to go through that. but also knowing that we wont have any more children is something that we have to deal with, and i feel selfish for even being sad about it. finley will probably never have children. and i have two awesome boys so i should feel so blessed, but when i pictured our lives before, i always pictured three kids, and of course i was so hoping that our third would be a girl. theres just so many changes that we need to deal with right now.
sorry this is so rambly and awkardly written... maybe later i will be able to more eloquently express my feelings, but currently, this i what you get.
my son has duchenne muscular dystrophy.
duchennes is one of the most common and most severe of the different types of muscular dystrophy, but being a common form means that there is always new research and clinical trials being done to not necessarily cure the disease, but at least improve the quality of, and prolong life.
i think we're still kind of shocked by the news.. its just so much to take in. hes fine right now and i guess the current plan of action is to go back to the clinic in may where he'll meet with a team of doctors including a physiotherapist that will track where he is in terms of physical development so that we will be able to see where he's progressing and also when he starts to decline. he'll also see a cardiologist that day to check his heart because your heart is a muscle so it also needs to be monitered.
i also had bloodwork done yesterday to see if im a carrier and the reason finny has dmd, if it turns out that i am, then we will have to get ashey tested just to make sure he doesnt also have it. i dont think that he does, but we would much rather be sure.
its so weird to even think about... you get married and have this plan in your head of what your life will be like, and when something comes along to completely change it, it feels like theres a million things to be sad about. the fact that finnys life wont be normal and we are going to watch him get progressively worse as time goes by is almost unbearable. no parent should ever have to go through that. but also knowing that we wont have any more children is something that we have to deal with, and i feel selfish for even being sad about it. finley will probably never have children. and i have two awesome boys so i should feel so blessed, but when i pictured our lives before, i always pictured three kids, and of course i was so hoping that our third would be a girl. theres just so many changes that we need to deal with right now.
sorry this is so rambly and awkardly written... maybe later i will be able to more eloquently express my feelings, but currently, this i what you get.
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