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  #101  
Old 08-01-2010, 04:48 AM
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Awful awful news, and I'm hoping that you hear something positive about her condition very soon. Can't imagine what you're going through, but we're thinking about you guys and your little owl.
  #102  
Old 08-01-2010, 05:09 AM
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I'm so sorry. I'll be thinking of you and your family, and praying if you don't object. I can't think of anything else to say - I guess there isn't anything. My heart goes out to you.
  #103  
Old 08-01-2010, 05:41 AM
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I'm so sorry to hear your news.

I don't know if there are levels of SMA, but I just wanted to say I knew a guy with it who made it to over 30, yes he was in a wheelchair, but he had a happy full life, very intelligent, active social life, good career, loads of girlfriends and didn't have to rely on a ventilator.

With medical advances, I hope your daughter also defies the current predictions and goes on to achieve great things.

(hugs from a stranger, if you want them)
  #104  
Old 08-01-2010, 06:17 AM
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My thoughts are with you and your little owl.
  #105  
Old 08-01-2010, 06:20 AM
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Originally Posted by Bearflag70 View Post
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.
Cherish the good moments. Try to have as many as possible. I wish you many happy moments over the years despite this horrible news.
  #106  
Old 08-01-2010, 09:43 AM
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Not much more that can be said. The thoughts are appreciated more than the words.
*Thoughts*

Sorrowful, loving, rage-at-the-universe thoughts.

May we ALL enjoy the moments we have with our children while we have them.
  #107  
Old 08-01-2010, 09:45 AM
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I'm sorry to hear your news. My thoughts are with you.
  #108  
Old 08-01-2010, 09:47 AM
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How awful. I'm sorry.
  #109  
Old 08-01-2010, 10:09 AM
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What heart wrenching news.... I wish words could convey how badly I feel about your sweet baby owl's diagnosis. My thoughts are with you and your family.

Enjoy every precious moment while you can.
  #110  
Old 08-01-2010, 10:38 AM
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I am so very, very sorry.
  #111  
Old 08-01-2010, 10:43 AM
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I'm so, so sorry to hear this terrible news. I will be thinking of you and your wife, your little daughter, and your family.
  #112  
Old 08-01-2010, 10:54 AM
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I wish your family well. Treasure the time with your daughter and keep her close to your heart. Best wishes.

Last edited by aceplace57; 08-01-2010 at 10:55 AM.
  #113  
Old 08-01-2010, 11:13 AM
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Another day. Things get a bit easier as time progresses and reality sets in.

Today is our 8 year anniversary of the day my wife and I met. We're learning to live for the moment.
  #114  
Old 08-01-2010, 11:38 AM
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Bearflag, I am so very sorry. I am glad you are living day by day and enjoying every blessed moment with that wonderful little baby owl.
  #115  
Old 08-01-2010, 11:42 AM
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Bearflag, I'm so terribly sorry. *helpless*
  #116  
Old 08-01-2010, 12:05 PM
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I'm so sorry, Bearflag. I know nothing I say can help, but I'm thinking of you and your family and hoping for the best.
  #117  
Old 08-01-2010, 12:10 PM
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Oh, Bearflag, I'm so very sorry. You and your family and especially your little one will be in my thoughts.
  #118  
Old 08-01-2010, 12:11 PM
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BearflagDear Lord, I am so sorry.

One of my wife's best college friends went through this. If you haven't been to http://www.fsma.org/, please go.

Also, if you have Facebook and want to get in touch with her (the friend). PM me and I'll put you guys in touch.
  #119  
Old 08-01-2010, 12:11 PM
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May you have many days with your precious daughter. I wish you and your family all the best in this difficult time.
  #120  
Old 08-01-2010, 12:17 PM
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I am so very sorry Bearflag. Prayers for you all are headed your way.
  #121  
Old 08-01-2010, 12:40 PM
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Godspeed, Bearflag. You and your wife have a challenging journey ahead of you. May you find the strength to make every decision without regrets and enjoy every moment you have together. As others have said, remember we're here for you.
  #122  
Old 08-01-2010, 01:04 PM
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I'm sorry, Bearflag. Sending good thoughts to you, your wife, and your little owl-baby.
  #123  
Old 08-01-2010, 01:20 PM
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All our love, good thoughts and prayers from us to you.
  #124  
Old 08-01-2010, 01:23 PM
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I'm so sorry for this awful news. We're sending good thoughts to your whole family.
  #125  
Old 08-01-2010, 01:39 PM
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I'm so sorry Bearflag. My family's thoughts are with you and yours.
__________________
There is no emoticon for what I am feeling!
  #126  
Old 08-01-2010, 02:09 PM
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Originally Posted by Zakalwe View Post
BearflagDear Lord, I am so sorry.

One of my wife's best college friends went through this. If you haven't been to http://www.fsma.org/, please go.

Also, if you have Facebook and want to get in touch with her (the friend). PM me and I'll put you guys in touch.
I signed up for FSMA the same Friday the doctor gave us the tentative diagnosis. I placed a call to the NorCal chapter Saturday morning. They called us back early Saturday afternoon and they were willing to spend their time just talking and answering all kinds of questions.

The people who run the NorCal Chapter are a couple who lost their son several years ago at age 6 months, but they have dedicated a good chunk of their lives to this issue and helping others. They basically run the NorCal chapter out of their home.

They decided to have another child but they ran prenatal SMA tests to ensure their second child didn't have SMA. She said SMA isn't common enough to be part of the normal prenatal testing, but they can run tests at 10 weeks of pregnancy. Apparently, they can also grow multiple embryos, screen them all for SMA, and implant one of the non-SMA embryos.

They offered to drive out to Sacramento from Santa Rosa as soon as they could. They would bring us materials, photos, and helpful hints. That's a two hour drive each way. I am floored by their dedication and generosity.

They called us again a couple hours ago. They said they could drive out from Santa Rosa on Wednesday to meet us. She was more than willing to talk to me on the phone as long as I needed. I asked all kinds of questions, and she gladly answered all of them. I find the knowledge and demystification very helpful and comforting. I guess that's a trait that drew me into SDMB in the first place.

They are trying to get in touch with some names of Sacramento area SMA parents we may be able to connect with. One of those parents lost twins, both to SMA. I can't even imagine that.

Thank you all again for the kind words. We aren't into prayer, but I appreciate prayers.

Last edited by Bearflag70; 08-01-2010 at 02:11 PM.
  #127  
Old 08-01-2010, 02:27 PM
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As far as the little owl's condition, I don't know that I would say she's "seriously ill" at this point.

For now, she's normal in every way except she is "floppy." She can't support her own weight when sitting up. She wiggles her feet but doesn't move her legs around. She bends her arms at the elbow but can't lift her entire arm at the shoulder. She lacks reflexes when tapped with the little rubber hammer.

Other than that, she's a happy little girl. We have figured out that she really likes it when we move her arms and legs around. It probably feels good to get the circulation going. We move hers arms and legs really fast like she's running, and she laughs and laughs.
  #128  
Old 08-01-2010, 02:43 PM
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God, how awful. My best wishes for you and your family Bearflag and my admiration for how well you are holding up.
  #129  
Old 08-01-2010, 03:08 PM
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I'm sorry. This must be very hard. I'm glad you found support from SMA.
  #130  
Old 08-01-2010, 03:52 PM
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I'm so sorry to hear about your daughter. How terrible.
  #131  
Old 08-01-2010, 03:58 PM
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i'm so sorry.

you and your family are in my thoughts and prayers.

enjoy every little smile, laugh, and moment. know we are here for you 'round the clock.
  #132  
Old 08-01-2010, 05:20 PM
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I don't know if there are levels of SMA
There are different forms of the disease that start at varying times of life, progress at different rates, and change life expectancy in different ways (in fact, there's at least one form that doesn't really change life expectancy at all). There is also one type that doesn't even begin until adulthood with symptoms typically appearing in and after the mid-30s.

Quote:
Originally Posted by Bearflag70 View Post
Other than that, she's a happy little girl. We have figured out that she really likes it when we move her arms and legs around. It probably feels good to get the circulation going. We move hers arms and legs really fast like she's running, and she laughs and laughs.
This is the post that finally got me.

I was fortunate enough to spend some time with a family whose son was going through diagnostic procedure for SMA during clinicals. The mother just about killed me when she looked at me and said "But he doesn't even look sick." And that is pretty much the very moment I decided I probably am not cut out for pediatrics.

Your post reminded me of that. You have just about my whole heart right now, Bearflag. I am so sorry for you.
  #133  
Old 08-01-2010, 05:26 PM
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Damn, that sucks some serious ass.

Quote:
Originally Posted by Ruffian View Post
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.
My mom's school district allows teachers to donate sick days to other teachers, and they often do when someone has a catastrophic family illness like this. You can't get enough sick days like this to stay home through her entire life expectancy, but if she starts getting sick, it can be a real help psychologically and financially.
  #134  
Old 08-01-2010, 05:35 PM
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I'm so sorry, Bearflag70. Your description of your baby girl is so cute and sweet. How heartbreaking.
  #135  
Old 08-01-2010, 05:44 PM
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I'm so sorry. I hope you're a stronger person than me, because I'm not sure I could keep going on.
  #136  
Old 08-01-2010, 05:51 PM
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Bearflag70 and family,

Thoughts, love and the best of wishes sent your way. Inadequate in the extreme, but I have no words to understand what you must be undergoing right now.

Would that I could say something more.

KB.
  #137  
Old 08-01-2010, 06:10 PM
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I'm so sorry.
  #138  
Old 08-01-2010, 06:14 PM
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There are no words. You and your family are in my heart and thoughts. I'm so sorry.
  #139  
Old 08-01-2010, 06:18 PM
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I want to wish you and your family strength and comfort.
  #140  
Old 08-01-2010, 06:22 PM
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Anybody reading this thread can't help but go through some of the 7 stages of grief. The disbelief, the frustration, the anger at the unfairness.

If collective sorrow could be harnessed ......

Damn. When I had a job at least I felt like I could throw money at a problem. I don't understand the varying degrees of the illness but I wish the best outcome for your little owl.
  #141  
Old 08-01-2010, 06:37 PM
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Quote:
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Quote:
Originally Posted by Bearflag70 View Post
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.
Cherish the good moments. Try to have as many as possible. I wish you many happy moments over the years despite this horrible news.
Bearflag, I want to second Broomstick's words. I'm not good at words in situations like this, but please try to remember the good moments and draw strength from them. My thoughts are with you and your family.
  #142  
Old 08-01-2010, 06:42 PM
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I have been reading this thread, trying to come up with just the right words to say to you and then not posting because nothing seemed adequate.

There are many people who have already posted who expressed it way better than I can.

Just know that my heart goes out to you and your wife and your sweet baby girl.
  #143  
Old 08-01-2010, 06:53 PM
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Oh, good Lord. For whatever it's worth, from a very imperfect stranger: I am so deeply sorry for your trouble. I wish you peace and strength in the coming days. Try to hang in as best you can.
Please know that you have friends here.
  #144  
Old 08-01-2010, 07:27 PM
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My heart bleeds for you. My prayers are with you. The most important thing to remember is that she doesn't know things should be different. Watch your conversation in front of her even now. I know when the shock wears off you will continue to fill her life with love, and fun, and softness. She is lucky to have you both.

And remember that being strong doesn't mean refusing to cry or face the pain; it means choosing to love and be loved, even when you know it's going to hurt in the end. Surround her with love, you won't regret it.
  #145  
Old 08-01-2010, 07:34 PM
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hope you have as many moments as you can with your little owl. *hugs*
  #146  
Old 08-01-2010, 07:53 PM
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I just wanted to add another voice of sympathy. I'm so sorry to hear this.

If you can think of anything you need, please post it here. Someone (probably a lot of someones) will be there.
  #147  
Old 08-01-2010, 08:13 PM
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I just wanted to add another voice of sympathy. I'm so sorry to hear this.

If you can think of anything you need, please post it here. Someone (probably a lot of someones) will be there.
Me too. Words feel so inadequate, but I'm so sorry.
  #148  
Old 08-01-2010, 08:27 PM
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I cannot imagine the sadness and grief you and your wife are going through now.

Make every minute count with hugs and assuring words and little joys, both for your daughter and your wife.

My hope is that both you and your wife will someday be able to look back and think about some of the good times and happy moments - no matter how brief they may or may not be.

My sincere best wishes to all three of you.
  #149  
Old 08-01-2010, 08:49 PM
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I haven't posted yet, because really what is there to say? But this story has absolutely been haunting me now for two days, largely because I have a six-month-old daughter, and just trying to imagine what you're going through makes me want to break down sobbing. I'm so sorry.
  #150  
Old 08-01-2010, 08:54 PM
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This will be really tough to go through, but I can see you're being positive and pragmatic, which heartens me.

It royally sucks, but it's life, and I'm sure you'll have the strength to make the most of it where you can. Give your baby all the love it can handle.
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