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  #151  
Old 08-01-2010, 08:57 PM
suranyi is offline
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Oh my God, I am the father of an eight-month old baby boy, and reading this is leaving me in tears. I am so, so, sorry, Bearflag.
  #152  
Old 08-01-2010, 09:09 PM
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I am so very sorry to hear of this, Bear. Please know that so many of us are here for you. Use us to dump the rage and sorrow as best you can.
  #153  
Old 08-01-2010, 11:03 PM
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I have a friend with SMA. The docs said he wouldn't make it past age three - they were off by quite a bit. He's married, has two bachelor's degrees and a full-time job. I know there are varying degrees and types, but since he was given the same prediction as your daughter, all may not be lost.
  #154  
Old 08-01-2010, 11:09 PM
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He's 28 years old.
  #155  
Old 08-02-2010, 12:34 AM
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Understanding
Loving
Sharing
Grieving
Accepting
Family
Friends
Support
Time

With all these things in abundance over the past couple days, we feel a lot better than we did when the news hit. It's by no means easy, but it is better now than it has been.

We also know that, for all of our sakes, we cannot just curl up a whither away. We need to be strong and pragmatic. We also need to hold each other and cry.

We need to give the little owl as much of ourselves as we can and ensure she is happy and fulfilled.

All of your comments help. My wife is not a Doper, but she knows I am. I showed her this thread and I'm sure she'll see it again. We thank you again.
  #156  
Old 08-02-2010, 12:37 AM
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Bearflag, when my son was hospitalized as an infant, I remember that one of the hardest things for me was realizing that the sun still rose and set, and that other people's lives continued on unchanged, while our world was turned completely upside down and inside out. So, know that at least this small group of people here on this message board is not unchanged by this news, and we are all with you in spirit in this difficult time.
  #157  
Old 08-02-2010, 12:39 AM
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I'm so sorry for what your family is going through, Bearflag70. I'm sure you will face this as well as it can be faced and I hope the outcome for you is better than expected, like Dan Turk's story about his friend.
  #158  
Old 08-02-2010, 02:50 AM
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Bearflag, I am so, so sorry. I know people who had or have similar conditions (I don't know the exact diagnoses, but both a second cousin and a classmate had "a problem with his back muscles", which sounds like this); that particular classmate was a normal student except for being in a wheelchair and having less movement range in his arms than other people, he didn't even miss class for doctor's visits more than any other teenager. I don't know how long will you and your daughter be able to enjoy each other's company, but I am glad that she has loving parents.

Last edited by Nava; 08-02-2010 at 02:51 AM.
  #159  
Old 08-02-2010, 03:23 AM
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I'm terribly sorry to hear this news about your precious daughter Bearflag. Having a new baby should be a time for joy and looking forward, not one of such sadness and dreaded anticipation.

However, you're little girl is still very much here and now. I imagine you'll just love her madly and bless the days you do have together: may they be many.

kambuckta
  #160  
Old 08-02-2010, 03:31 AM
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Your family and your precious little one will be in my thoughts and prayers, Bearflag70 and I only wish that there were more I could do.
  #161  
Old 08-02-2010, 03:37 AM
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I'm am so sorry for you and your child. Please hang in there.

Last edited by Crowbar of Irony +3; 08-02-2010 at 03:38 AM.
  #162  
Old 08-02-2010, 03:40 AM
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7-month old son here, and we can't even imagine how you're coping with this.

You're in our thoughts,


DA
  #163  
Old 08-02-2010, 05:12 AM
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You're in my thoughts and prayers. Cuddle your baby and give her everything you can, for however long that may be.
  #164  
Old 08-02-2010, 05:28 AM
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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 just gut-wrenching. We have a 17-month old, and we did the same thing when he was a "baby burrito" (that's how we refer to his early days, when we swaddled him like a burrito.) Knowing we would lose him soon would be unbearable. I am SO sorry, Bearflag. I hope you get some good news soon. I really do.
  #165  
Old 08-02-2010, 09:11 AM
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If the tears of strangers could heal your daughter, we’d have forced the universe to take this back. I am so sorry.
  #166  
Old 08-02-2010, 09:29 AM
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My heart goes out to you and your family.
  #167  
Old 08-02-2010, 09:45 AM
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If the tears of strangers could heal your daughter, wed have forced the universe to take this back. .

This is beautiful.


I cannot add to anything that hasn't been expressed here more eloquently.

You and your wife are in my thoughts.
  #168  
Old 08-02-2010, 09:47 AM
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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 may be the most heartbreaking - yet the most wonderful - thing I've ever read.

Owl doesn't know that she is ill; what she does know is that it's fun to have these two big people love her enough to spin her limbs 'round and 'round.

Wishing all of you strength.

mmm
  #169  
Old 08-02-2010, 10:16 AM
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I've been writing and erasing things but cannot put into words much more than I'm so sorry, and that your family is in my thoughts.

I'm glad to hear you're cherishing every moment and remembering to never give up hope. No matter what happens to your baby the love you give her now will keep going forever.
  #170  
Old 08-02-2010, 10:17 AM
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I've got a four and two year old and the thought of losing either of them makes me sick. Why the fuck does life have to come by and just give you a swift kick in the balls every so often?
  #171  
Old 08-02-2010, 10:23 AM
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hugs. I have nothing to add except my heartfelt sympathy. I have to go hug my boy now.
  #172  
Old 08-02-2010, 10:34 AM
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So sorry. I wish words could heal the pain.

Use all the support systems offered to you, even if you feel you don't need it at the time.

I hope the little owl gets stronger and is able to fight.
  #173  
Old 08-02-2010, 10:39 AM
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Bearflag and Family,
I'm so sorry for your pain and unbearable frustration right now. There are many children who survive for years w/ SMA consuming nothing but breastmilk; you may have already heard about that but I want to share w/ you the blog of one family doing just that to keep their son alive.
Thank you for sharing all your experiences w/ us so we can learn to understand, support and appreciate those around us more fully.
  #174  
Old 08-02-2010, 10:49 AM
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Bearflag, I'm so very sorry. I will offer prayers for your little owl, and for you and your wife too.

I've been where you are. If you want to talk, just let me know.

Ellen
  #175  
Old 08-02-2010, 11:38 AM
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Friend Bearflag, my sincere sympathies for this most unwelcome news.

"All we can really do is love our little owl and each other as much as possible each day."

Peace and comfort to all your family.
  #176  
Old 08-02-2010, 11:49 AM
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How's the money situation, BearFlag? Still think there will be problems? I'm sure there's something we can do. Hell, we raised $5,000 once just to pay someone's electric bill.
  #177  
Old 08-02-2010, 12:05 PM
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I have a friend with SMA. The docs said he wouldn't make it past age three - they were off by quite a bit. He's married, has two bachelor's degrees and a full-time job. I know there are varying degrees and types, but since he was given the same prediction as your daughter, all may not be lost.
I wanted to add that I went to school with a girl with SMA. Her prognosis was about seven or eight years. When she was a teenager I helped her with a typing system for her computer. I don't know where she is now, but the last I heard about her, about five years ago when she was in her thirties, was that she had become a lawyer and got married. I know false hope can be counterproductive, but I still want to give you another datapoint that defied the predictions.

Thinking of you.
  #178  
Old 08-02-2010, 12:09 PM
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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.
Beautiful words to live by. Love brings the most pain and the most joy of anything we can do. What's important is to remember that it's worth it. It's worth it.
  #179  
Old 08-02-2010, 12:14 PM
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How's the money situation, BearFlag? Still think there will be problems? I'm sure there's something we can do. Hell, we raised $5,000 once just to pay someone's electric bill.
My wife says she cannot go back to work when school starts in a few weeks. The school admin is ware and is looking into options and benefits. All sick and vacation hours were spent at birth because the district only gives 2 days maternity leave. We are thinking about my wife doing some kind of

We don't know yet what the financial options are. We do know that anything much less that a full paycheck from my wife is not sustainable and we will default on something. We have come to the conclusion that if our situation means defaulting/bankruptcy, then so be it.

We will do what we can to eat, hang onto the house, keep the utilities on, keep auto insurance, and keep my business afloat. Her auto loan, our credit cards, our student loans, and other non-essentials are just that ... non-essential. Even the house is non-essential if it really comes down to it, but I can't imagine moving in the middle of all this.

A friend has offered to host some fundraisers to supplement our income. We are considering taking her up on it.
  #180  
Old 08-02-2010, 12:20 PM
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We are considering taking her up on it.
"Considering"? Nah, man. TAKE IT. It's just money. Your friend won't miss it.

Let's talk dollars and cents here. How much income needs replaced? What's your wife's monthly income?
  #181  
Old 08-02-2010, 12:21 PM
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Do take advantage of the friend's offer - you're looking at a lot of medical bills, caregiver bills etc.

If possible, try to keep the car paid up - you'll both need transportation. Ditto house (you need a place to live and you don't need the hassle of moving under duress). Credit cards etc. can go to hell.

Depending on how your daughter is doing, your wife might try to see if she can go to work now (if at all possible, I know with the ton of bricks you have had dumped on you she genuinely may not be up for it). My thinking is that if she can work now, at least some, then she'll have more flexibility for times when Baby Owl is sicker.
  #182  
Old 08-02-2010, 12:22 PM
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How's the money situation, BearFlag? Still think there will be problems? I'm sure there's something we can do. Hell, we raised $5,000 once just to pay someone's electric bill.
I like this idea--I'd be glad to donate what I can. At least then I could feel like I was doing something, even if it's just a little something, to help.
  #183  
Old 08-02-2010, 12:23 PM
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Quote:
Originally Posted by Dan Turk View Post
I have a friend with SMA. The docs said he wouldn't make it past age three - they were off by quite a bit. He's married, has two bachelor's degrees and a full-time job. I know there are varying degrees and types, but since he was given the same prediction as your daughter, all may not be lost.
I wanted to add that I went to school with a girl with SMA. Her prognosis was about seven or eight years. When she was a teenager I helped her with a typing system for her computer. I don't know where she is now, but the last I heard about her, about five years ago when she was in her thirties, was that she had become a lawyer and got married. I know false hope can be counterproductive, but I still want to give you another datapoint that defied the predictions.

Thinking of you.
Thank you. It sounds like Type 2, which is less severe and has a longer life expectancy. Current indicators point to Type 1 in our case, which is most severe.

My understanding so far is that the three types of SMA are based upon performance:

Type 1: Unable to support own weight when sitting
Type 2: Able to support own weight when sitting but unable to walk
Type 3: Able to walk, although that ability may be lost at some point

When we put our girl in a sitting position, stabilize her, and let go, she just flops over. I don't know how much of that she should be able to do at 4 months, but the current thought is Type 1 with a life expectancy of anywhere from a few months to 2 years.

There are Type 3 people who live well into adulthood.
  #184  
Old 08-02-2010, 12:29 PM
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My wife needs to be "on" and focused all day in front of high school kids and does not have the luxury of being able to leave the room or break down crying in the middle of class. She doesn't think she can do it. In the back of her mind, by being at work, she will feel like she is abandoning her sick child at a time of need. there's no way she can get through the day like that.
  #185  
Old 08-02-2010, 12:34 PM
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My wife says she cannot go back to work when school starts in a few weeks. The school admin is ware and is looking into options and benefits. All sick and vacation hours were spent at birth because the district only gives 2 days maternity leave. We are thinking about my wife doing some kind of

We don't know yet what the financial options are. We do know that anything much less that a full paycheck from my wife is not sustainable and we will default on something. We have come to the conclusion that if our situation means defaulting/bankruptcy, then so be it.
Absolutely. One of the first things I thought when I heard about your situation is that I'd quit everything to spend all the time I could with her if I were you. I like the fundraising idea. As my dad said last time I moaned to him about trying to fund grad school, "It's only money. There are a lot of things more important than that."
  #186  
Old 08-02-2010, 12:42 PM
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As far as taking up the fundraiser offer, we need a specific diagnosis with blood work first. We need a specific prognosis based upon the hard facts before we consider taking up any kind of fundraiser.

We need to assess our financial needs and determine what our revenue options are by way of alternative work options, school district benefits, government benefits, and charitable organizations. Apparently the district does allow sick and vacation day donations. We won't solicit that kind of donation but word will get around and some teachers will probably donate something.

After doing all that, we can calculate the the financial shortfall and assess accordingly.

Her monthly take-home pay is roughly $4,200.00, which includes some extra pay for doing things beyond her base contract work.
  #187  
Old 08-02-2010, 12:45 PM
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Originally Posted by Chessic Sense View Post
How's the money situation, BearFlag? Still think there will be problems? I'm sure there's something we can do. Hell, we raised $5,000 once just to pay someone's electric bill.
My wife says she cannot go back to work when school starts in a few weeks. The school admin is ware and is looking into options and benefits. All sick and vacation hours were spent at birth because the district only gives 2 days maternity leave. We are thinking about my wife doing some kind of
That got cut off somehow. We are thinking about my wife doing some kind of home schooling or tutoring option as a revenue alternative.
  #188  
Old 08-02-2010, 12:47 PM
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As far as medical bills, we have Kaiser, which is pretty damn comprehensive. I understand there may be Medicare options for terminally ill home care, but I don't know.
  #189  
Old 08-02-2010, 12:58 PM
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Fundraisers are a snap to put together, so don't feel like your friend would have to take on this huge burden. Not even remotely close to the same thing, but I'm helping a friend with his campaign for county sheriff and we've used Facebook for most of what we've accomplished. Friends of friends of friends can get the word out pretty quickly and if I have managed to get as many donations as I have for a candidate for sheriff (silent auction items, including gifts certificates from local business; venues for events, like the pig roast we had (donated pig, the butcher donated his time, etc.); bands to play; straight dollars), I'm sure with the help of friends and family, you guys could find a bunch of people to help you in a hundred different ways. Neighborhood ladies hosting bake sales, people making meals for your family, those decorated cans you always see on gas station counters with a brief description of what's up asking for money help.

Take whatever help you can get. There's no shame in it, not even a little bit.

I personally like the idea of a silent auction because you can't really feel like you're putting anybody out. Businesses like donating gift certs and other services because it's advertising, the potential to gain a new customer (and more because of word of mouth), and it doesn't really cost them anything. The people who bid are getting something in return so it's not charity (not that there is a single thing in the world wrong with that). Plus bidding wars are fun, even for the spectators.

I wish I could be where you are because I would do this in a second.

Last edited by Silver Fire; 08-02-2010 at 12:59 PM.
  #190  
Old 08-02-2010, 01:11 PM
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Thank you, it is a good idea. We just need to have specific medical results first. I'd hate to ask someone start planning the Little Owl SMA fundraiser only to find out that it's not SMA. I have no shame in having a fundraiser, but only when the foundation for it is fully justified.
  #191  
Old 08-02-2010, 01:11 PM
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I wish I could be where you are because I would do this in a second.
Good point. Where are you, Bearflag? Surely some Doper is in your neighborhood and can help out physically.
  #192  
Old 08-02-2010, 01:22 PM
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Sacramento, CA
  #193  
Old 08-02-2010, 01:23 PM
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Bearflag, the easiest and least annoying way to do this is for you to have a PayPal account and let people send you donations. We'd rather do something unofficial and quiet like this but can ramp it up as appropriate.

You and your family are in my thoughts and prayers in this difficult time.
  #194  
Old 08-02-2010, 01:27 PM
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Her monthly take-home pay is roughly $4,200.00, which includes some extra pay for doing things beyond her base contract work.
Of course that says nothing about the how much the shortfall will be once we determine what our other options are.
  #195  
Old 08-02-2010, 01:27 PM
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I am so very, very sorry. I can't even imagine what you must be going through.

If you do a fundraiser, let us know about it. Hell, even if you don't do a fundraiser, let us help somehow.

Also, I generally only deal in Medicare for disabled and older individuals, but if you or your wife need help understanding Medicare, just PM me and I'll do what I can.
  #196  
Old 08-02-2010, 01:28 PM
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Thank you, it is a good idea. We just need to have specific medical results first.
I'm sorry, I saw that you had already said that after I posted (I've been leaving reply windows open too long all day; I'm easily distra... ooh, shiny).

Well, if the time comes. I do believe that people are good and will help in these types of situations however they are needed and able.

It's also a good way to get your friends, family, and community involved and it benefits them too because they won't feel so helpless.
  #197  
Old 08-02-2010, 01:29 PM
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I have a 5 month old son. This is incredibly horrifying. I'm so sorry, Bearflag. You're in our thoughts.
  #198  
Old 08-02-2010, 01:39 PM
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Thank you all. My wife and I are crying that SDMB would even consider this.

I have PayPal in my name, but should I use that or set up a separate account?
  #199  
Old 08-02-2010, 01:43 PM
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If you are willing, please PM me your address.
  #200  
Old 08-02-2010, 01:47 PM
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When we put our girl in a sitting position, stabilize her, and let go, she just flops over. I don't know how much of that she should be able to do at 4 months, but the current thought is Type 1 with a life expectancy of anywhere from a few months to 2 years.

There are Type 3 people who live well into adulthood.
At 4 months, very few infants can sit up on their own without some sort of support. Rolling over is the big milestone at that age. Both of my boys weren't sitting unsupported until about 6 1/2 months (Boy 2.0 was nearly 7mos)--for both of them, when we did their first professional portraits at 6mos and they were posed sitting, I had duck behind them to hold them off camera.

I don't want to be dismissive or misleading or overstep bounds or offer false hope. But, I just wanted to say (in the spirit of the Dope, perhaps) that sitting up unsupported at this age is exceedingly unlikely.

I understand how your wife cannot take the breaks she will need emotionally. I teach middle school, and know what a pain it is even to get to the bathroom during nonschedule breaks. Once you have an official diagnosis and word gets out among staff and students, I'm sure more fundraising will take place and more help in other forms will come forward. And add me as another Doper who'd like to help, in whatever capacity I may. I am in southern California, but have many northern California contacts (particularly in education). I don't know what I can do, but I'm willing to find out.

Boy 2.0 has been sitting next to me and grabbing at the laptop keys. He says hello--or really, mlkjljio.

May I request pictures of your little owlet?
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