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  #51  
Old 07-31-2010, 06:40 PM
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I am too. Peace and love to you and your little owl. Who who.
  #52  
Old 07-31-2010, 06:43 PM
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Oh my God, I am so sorry to hear this, Bearflag. Thinking of you and wishing you strength in the upcoming days.
  #53  
Old 07-31-2010, 06:49 PM
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There are no words. Just thoughts, love, support.
  #54  
Old 07-31-2010, 06:54 PM
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I'm so sorry, Bearflag.
  #55  
Old 07-31-2010, 06:56 PM
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What horrible news. I'm so sorry. My heart goes out to the entire Bearflag family.
  #56  
Old 07-31-2010, 07:04 PM
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I'm so sorry, Bearflag. My prayers and good thoughts are with you and your family.

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  #57  
Old 07-31-2010, 07:04 PM
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Quote:
Originally Posted by Brynda View Post
I am so sorry. Words aren't enough, but know that a stranger far away shed tears for all of you.
Make that two.

I'm really, really sorry, Bearflag. I can't imagine what you're going through. Love that little angel as much as you possibly can. That love will last forever.
  #58  
Old 07-31-2010, 07:05 PM
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I'm so sorry
  #59  
Old 07-31-2010, 07:09 PM
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Quote:
Originally Posted by Bearflag70 View Post
My wife is asleep but I can't fall asleep yet.

Office diagnosis: Spinal Muscular Atrophy

Genetic disorder - degenerative, leading to increased complications over time

Life expectancy: Maybe 2 years.

This is just horrible beyond words. Our baby girl.
{{{hugs}}}

I wish there was something useful I could say, but all I have is "I'm sorry". I'm sorry your daughter is ill. I'm sorry that it looks as if you will experience some of the worst pain a person can feel, the loss of a child.

But you know there are people who will be there for you. Even total strangers on the internet, like in this thread. You are not alone, even when it feels like you are.

Take care. And, again, I wish the news had been better.
  #60  
Old 07-31-2010, 07:10 PM
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Oh Bearflag, , I'm so sorry.
  #61  
Old 07-31-2010, 07:16 PM
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I'm very sorry to hear that you had such horrible news.

As far as the issue of getting a second opinion, I do think it could be valuable to get a second opinion at an academic medical center with expertise in pediatric neurology if it is at all feasible. One of the advantages of that is that you could explore if there are any clinical trials which might hold some promise. Sometimes clinical trials are the best hope for a serious disorder where conventional treatments don't have much to offer. An academic peds neurologist who has expertise in kids with spinal muscular atrophy would be the best person to advise you about if there are trials your child would be eligible for and potentially benefit from.
All the best to you and your family.
  #62  
Old 07-31-2010, 07:21 PM
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I'm so sorry to hear this. Best wishes from here.
  #63  
Old 07-31-2010, 07:34 PM
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Oh damn. Damn, damn, damn. I'm so very sorry. Sending all the good thoughts I have your way.
  #64  
Old 07-31-2010, 07:34 PM
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I am so, so sorry. Sitting here in tears for you, your family, and your precious baby girl. You're all in my thoughts.
  #65  
Old 07-31-2010, 07:35 PM
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I'm so sorry to hear this. Best wishes from me x
  #66  
Old 07-31-2010, 07:38 PM
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Oh, BearFlag, I am so sorry. I'd been following this thread since its benign beginning, as I remember you (well, your wife) being pregnant the same time I was. My son is older (7mos), but I was identifying with your comments and thinking of our own recent baby experiences. But, when I saw the changed thread title and read your update, I audibly gasped, enough that my husband looked up at me alarmed--"What??" When I explained and read your update, he understood.

I, too, am a teacher and will be going back to work in a few weeks, and would also have a very difficult time returning were I in your situation. There may be a few options for your wife--does she have catastrophic leave? Does she have many sick days accumulated? She might be able to use those. If not--if she, like me, burned through all her sick days during her maternity leave--there is always Family Medical Leave Act (FMLA) absence. It will entitle her to upaid time off work to care for an immediate family member without losing her job. It's something to inquire about, at least. She can contact the district's health benefits, payroll, and/or risk management offices to find out. Her union rep (if there is one) might know as well.

This is hellacious, and I am terribly sorry to hear this. You have our thoughts and prayers.

Last edited by Ruffian; 07-31-2010 at 07:40 PM.
  #67  
Old 07-31-2010, 07:39 PM
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Another doper crying over this horrible news. I'm so sorry Bearflag. So terribly sorry.
  #68  
Old 07-31-2010, 07:42 PM
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Oh no. I'm so, so so sorry. I don't even have words.
  #69  
Old 07-31-2010, 07:49 PM
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That's awful.

I hope you all have support in real life, and can use these boards to talk about it - there will always be people here willing to give you a metaphorical shoulder to cry on, or cheer with you in the better times. Don't be afraid of letting it all out.
  #70  
Old 07-31-2010, 07:56 PM
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I am so so sorry.
  #71  
Old 07-31-2010, 08:00 PM
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Fuck...this sucks. I'm really sorry for you and your family man. Ride the ride as long as you can and I wish you well. Jesus. I need to go hug my kids now.
  #72  
Old 07-31-2010, 08:22 PM
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I am so sorry to hear this news. I, too, have cried tears for your innocent little owl. I pray for you to have the strength to survive this ordeal.
  #73  
Old 07-31-2010, 08:34 PM
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Tears, hugs and best wishes from all of us in my family. I'm so sorry to hear your news.
  #74  
Old 07-31-2010, 08:38 PM
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I'm sorry to hear this news Bearflag. I also thought about clinical trials, if you can deal with it. It would help expand what's known about SMA and possible future cures. Wishing you and your family peace and strength.
  #75  
Old 07-31-2010, 08:41 PM
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My thoughts go out to you. I am so sorry.
  #76  
Old 07-31-2010, 08:43 PM
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So sorry. My heart goes out to you.
  #77  
Old 07-31-2010, 08:47 PM
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I'm so sorry, my thoughts are with you and your family.
  #78  
Old 07-31-2010, 08:59 PM
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Damn, Bearflag.

Do you object to prayers on your/your family's behalf? If not, I will pray for you. If so, I will just send all the positive thoughts I can in your direction!
  #79  
Old 07-31-2010, 09:02 PM
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Best thoughts for your family, Bearflag.
  #80  
Old 07-31-2010, 09:02 PM
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I saw the thread title and that I'd clicked it and wondered how come I didn't recognize the title. Then I opened it.

How absolutely horrible. But yes, you should definitely seek out experts, even if you have to travel; having doctors who truly know what's going on is vital, whatever happens next. Though I haven't seen them for a few years, the last orthopedist I saw is at Johns Hopkins, and I live in Idaho now and am not sure there's a doc closer than LA I would trust with me (long story, rare condition).

I am so sorry. Hugs to you and your little one.
  #81  
Old 07-31-2010, 09:08 PM
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I'm so sorry to read this. Good thoughts headed out to you and your family.
  #82  
Old 07-31-2010, 09:12 PM
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My best thoughts go out to your young family, Bearflag70.

Matthew
  #83  
Old 07-31-2010, 09:13 PM
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My heart goes out to you, your wife, and the little owl. Hugs to all -- you and your family are in my thoughts and prayers.
  #84  
Old 07-31-2010, 09:13 PM
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I am really sorry. I cannot imagine how you and your wife feel right now and I know nothing said will help, but I am truly sorry.
  #85  
Old 07-31-2010, 09:17 PM
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Peace and love to your little owl, Bearflag70. My heart goes out to you and your wife.
  #86  
Old 07-31-2010, 09:48 PM
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I am so very sorry. I have no idea what else to say.
  #87  
Old 07-31-2010, 09:51 PM
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Oh hell. My heart is breaking for you and your wife and your little hoot-owl . I wish I knew the magic words to help with your fear and heartache.
  #88  
Old 07-31-2010, 10:17 PM
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Oh Bearflag70 I'm so sorry. I can't imagine getting that news. We're always here for you to at the Dope, but I hope you have family or friends close by to lean on right now.

My thoughts are with you all, and you can add me as another who is crying for you.
  #89  
Old 07-31-2010, 10:18 PM
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Jesus christ this is horrible. My best wishes to you and your family, Bearflag. I really don't have any words. I am thinking of you.
  #90  
Old 07-31-2010, 10:32 PM
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I'm so sorry, Bearflag. My thoughts are with you all. Take good care of each other.
  #91  
Old 07-31-2010, 10:57 PM
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Today, I went for a walk in the park with my wife, our baby girl, and our dog. It was one of the most wonderful things I have ever done.
  #92  
Old 07-31-2010, 10:59 PM
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There should be a law or something. No babies ever get sick. It's just not right. My heart aches for you and your family.
  #93  
Old 08-01-2010, 12:20 AM
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I just experienced that gut-sick feeling you get when you realise the bottom has just dropped out of someone else's world. I am so sorry for the dire diagnosis, and remain hopeful that some kind of miracle will happen for you. This thread is devastating to read and my heart goes out to you.
  #94  
Old 08-01-2010, 12:38 AM
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Bearflag70 , there are no words. Wishing the best for you and yours.
  #95  
Old 08-01-2010, 01:12 AM
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Oh, man. All my best thoughts to you and your family.
  #96  
Old 08-01-2010, 01:19 AM
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I am so sorry. I don't know what else to say. (((hugs)))
  #97  
Old 08-01-2010, 01:31 AM
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No words is right...such a sad thing...thinking of you.
  #98  
Old 08-01-2010, 01:45 AM
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I'm so sorry. Sending thoughts of strength your way.
  #99  
Old 08-01-2010, 02:07 AM
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Oh my god, Bearflag, I'm so sorry. I remember reading your "I'm about to have a baby girl!" thread and being so excited for you. This news is truly awful, and so very unfair. My thoughts will be with you.
  #100  
Old 08-01-2010, 02:12 AM
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I've been trying to think of something to say, and am really struggling. Our babies are almost the same age, and I remember being pregnant at the same time as your wife, both of us preparing for the changes ahead.

Words fail me at this time. I will be thinking about you and your family.
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