I so do not want to write this post...I have five million thoughts swirling in my head. After I post, I think I'm going to take a bump break for a few days so if somebody could bump this on Monday for the working ladies I would appreciate it. Ok, here goes all the junk in my head...sorry for the randomness:
Both girls have been diagnosed with Werdnig-Hoffman disease. Here is the wikipedia article:http://en.wikipedia.org/wiki/Werdnig-Hoffman_disease. It is a rare genetic disease that is untreatable. We are going in Monday to test our blood as well to see if it is something we passed down to them or if it was a mutation they experienced.
They have the most severe form. Their lungs are going to slowly give out b/c the muscles will not be able to help them breath anymore. They are both on feeding tubes, oxygen at night and monitors. They will never be able to sit up or hold their heads up b/c their muscles just can't take it. They might never talk b/c they have to choose between using their energy to breath or to do other things and they instinctively know to breath. Their brains are fine and they do so well interacting with us and each other. They love to be read to and have toys in front of them, they just can't reach them and hold on to them to play with them on their own.
Jake and I are going to have to decide how far we want to take this...some babies can make it longer if they're given a trach tube and have a machine breathing for them. At this point we're not sure that we want that kind of life for our sweet babies. We have a lawyer friend who is going to help us draw up living wills so we don't need to make those decisions under emotional distress. I am going to look into taking a leave of absence from work to be with them, but we're not sure if we can do that financially at this point.
Our friends have pretty much 'circled the wagons' for us to help us take care of all of the logistical stuff in our lives so we can just be with the girls and enjoy our time with them. We're going to celebrate every moment we have with them. We have decided to not do anything to treat the scoliosis and other issues that they have b/c we don't want to put them through that. I'm not even sure how far we want to take physical therapy at this point b/c we want all of their energy going to breathing.
We are looking into family counseling just to help us deal with all of the millions of thoughts swirling in our heads. Jake is doing really well considering (thanks Lexapro!), I have been a hot mess since we were told. I walked out to the car this morning and just started bawling b/c there was such a beautiful blue sky and my girls won't get enough blue skies.
They are asking us to keep them away from too many people b/c even the slightest cold can do major damage to their lungs. It makes me so sad that they can't enjoy their cousins, they won't know what it's like to walk or swim or taste candy, there won't be huge cell phone bills and driving lessons and wedding plans.
Ok, I think that's all I can write for now...I need to compose myself. Thank you all so much for thinking of our family; your friendship has helped so much during all of this!
Brook
Both girls have been diagnosed with Werdnig-Hoffman disease. Here is the wikipedia article:http://en.wikipedia.org/wiki/Werdnig-Hoffman_disease. It is a rare genetic disease that is untreatable. We are going in Monday to test our blood as well to see if it is something we passed down to them or if it was a mutation they experienced.
They have the most severe form. Their lungs are going to slowly give out b/c the muscles will not be able to help them breath anymore. They are both on feeding tubes, oxygen at night and monitors. They will never be able to sit up or hold their heads up b/c their muscles just can't take it. They might never talk b/c they have to choose between using their energy to breath or to do other things and they instinctively know to breath. Their brains are fine and they do so well interacting with us and each other. They love to be read to and have toys in front of them, they just can't reach them and hold on to them to play with them on their own.
Jake and I are going to have to decide how far we want to take this...some babies can make it longer if they're given a trach tube and have a machine breathing for them. At this point we're not sure that we want that kind of life for our sweet babies. We have a lawyer friend who is going to help us draw up living wills so we don't need to make those decisions under emotional distress. I am going to look into taking a leave of absence from work to be with them, but we're not sure if we can do that financially at this point.
Our friends have pretty much 'circled the wagons' for us to help us take care of all of the logistical stuff in our lives so we can just be with the girls and enjoy our time with them. We're going to celebrate every moment we have with them. We have decided to not do anything to treat the scoliosis and other issues that they have b/c we don't want to put them through that. I'm not even sure how far we want to take physical therapy at this point b/c we want all of their energy going to breathing.
We are looking into family counseling just to help us deal with all of the millions of thoughts swirling in our heads. Jake is doing really well considering (thanks Lexapro!), I have been a hot mess since we were told. I walked out to the car this morning and just started bawling b/c there was such a beautiful blue sky and my girls won't get enough blue skies.
They are asking us to keep them away from too many people b/c even the slightest cold can do major damage to their lungs. It makes me so sad that they can't enjoy their cousins, they won't know what it's like to walk or swim or taste candy, there won't be huge cell phone bills and driving lessons and wedding plans.
Ok, I think that's all I can write for now...I need to compose myself. Thank you all so much for thinking of our family; your friendship has helped so much during all of this!
Brook
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