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  #201  
Old 08-02-2010, 02:06 PM
thirdwarning is offline
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Bearflag, I'm so sorry. You have my prayers, for all of you. I know it's been said here, but do remember, babies only know 'now'. The little owl doesn't have worries, won't have regrets, and won't be afraid. She only knows that you love her and take good care of her.

Hold tight, all three of you. Keep each other close, and share all the joy you can find.

And when you really need to scream, or vent, or rant, or cry, or just talk it out, we're here.

On a practical note, I have a couple of things that might be appropriate for a silent auction, if that ever comes up. In the meantime, I'll be watching for other news.

Try to be gentle with yourselves.
  #202  
Old 08-02-2010, 02:36 PM
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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.

...

May I request pictures of your little owlet?
I figured as much about the normal motor skills at 4 months. I don't yet know how they determine Type 1 or Type 2 at this age.

We just had pictures done the week prior by a photographer who posted a few of the pics at her photography website.
  #203  
Old 08-02-2010, 02:42 PM
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I just looked at her pictures and she's gorgeous! Those blue eyes are ridiculous. Do you squeeze those cheeks every waking moment?

I don't have any other words right now, except that I'm sorry for the diagnosis. I sent you a PM when you have minute.
  #204  
Old 08-02-2010, 02:44 PM
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We weren't ready for family pics that day, so we go back this weekend for that.
  #205  
Old 08-02-2010, 02:49 PM
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Quote:
Originally Posted by Bearflag70 View Post
Quote:
Originally Posted by Ruffian View Post
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.

...

May I request pictures of your little owlet?
I figured as much about the normal motor skills at 4 months. I don't yet know how they determine Type 1 or Type 2 at this age.

We just had pictures done the week prior by a photographer who posted a few of the pics at her photography website.
My 17 week old can't sit up straight or unsupported yet, although he really wants to. If you let him go, he just slides to one side. He's also not that great at rolling over yet.

I just had a look at the pictures, and your daughter is absolutely beautiful. Her eyes are so striking, and her smile just melts your heart. But you knew that already
  #206  
Old 08-02-2010, 02:51 PM
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That is a beautiful baby. I'll light a candle for her and your family.
  #207  
Old 08-02-2010, 02:51 PM
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Yet another Doper crying for your family. Like you and Neeps, I have a four month old, and was following your threads.

Your pictures of her are beautiful. Our family will be praying for your family. Please keep us posted.

Hugs,

Kyra

ETA: my little boy can't roll or sit unsupported yet, either.

Last edited by Lissla Lissar; 08-02-2010 at 02:53 PM.
  #208  
Old 08-02-2010, 03:23 PM
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Bearflag, she is gorgeous! Those eyes are absolutely mesmerizing.

Is that your wife in the 6th and 7th photo? She looks fantastic.
  #209  
Old 08-02-2010, 03:26 PM
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Beautiful family, Bear.
  #210  
Old 08-02-2010, 03:30 PM
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I couldn't bear to read the whole thread, but my thoughts are with you and your family bearflag70. I looked at the pictures - gorgeous, gorgeous little girl.
  #211  
Old 08-02-2010, 03:32 PM
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Bearflag, she is gorgeous! Those eyes are absolutely mesmerizing.

Is that your wife in the 6th and 7th photo? She looks fantastic.
Yes, thank you.
  #212  
Old 08-02-2010, 04:07 PM
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Add me to the growing list of those thinking of you and your family, Bearflag. That's one beautiful little girl you've got there.
  #213  
Old 08-02-2010, 04:08 PM
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Oh my gosh, that picture where your daughter is looking into your wife's face is just the cutest, sweetest picture ever. The expression on her little face is just so angelic. It made me tear up, and I'm at work.

I hope we can help you out with your financial troubles at least.
  #214  
Old 08-02-2010, 04:20 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?
I would think your regular ol' account would be fine unless you're uncomfortable sharing personal information like that with us -- then another account would be the way to go.

In the past I have served as a conduit for people who for one reason or another did not feel comfortable being listed or for Dopers who wished to remain anonymous -- donations sent to me will be forwarded. If you donate through me please tell me if you wish Bearflag to know who you are, otherwise your name will not be disclosed.

TubaDiva
  #215  
Old 08-02-2010, 04:35 PM
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Quote:
Originally Posted by Bearflag70 View Post
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?
I would think your regular ol' account would be fine unless you're uncomfortable sharing personal information like that with us -- then another account would be the way to go.

In the past I have served as a conduit for people who for one reason or another did not feel comfortable being listed or for Dopers who wished to remain anonymous -- donations sent to me will be forwarded. If you donate through me please tell me if you wish Bearflag to know who you are, otherwise your name will not be disclosed.

TubaDiva
I don't mind. People here have figured out who I am before.

Sometimes I use PayPal in a pinch for business matters and they take a percentage. Will PayPal take a cut of donations?
  #216  
Old 08-02-2010, 05:31 PM
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Just adding my voice to the list of Dopers who want to wish your family strength as you figure out how to move forward in this awful situation.
  #217  
Old 08-02-2010, 05:49 PM
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Sometimes I use PayPal in a pinch for business matters and they take a percentage. Will PayPal take a cut of donations?
My understanding is that whether they take a percentage or not is dictated by how the funds are labeled when they are sent. I'm sure someone a little more knowledgeable can explain this further.
  #218  
Old 08-02-2010, 05:50 PM
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Quote:
Originally Posted by Bearflag70 View Post

Sometimes I use PayPal in a pinch for business matters and they take a percentage. Will PayPal take a cut of donations?
My understanding is that whether they take a percentage or not is dictated by how the funds are labeled when they are sent. I'm sure someone a little more knowledgeable can explain this further.
I think that is right, but I am not sure. I think the sender can mark the funds as "personal" to avoid fees. Anyone?

Also, what do you need form me? Just an email address?
  #219  
Old 08-02-2010, 06:04 PM
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According to PayPal...

Personal transfers to friends and family:

FREE TRANSFER
* Fully funded by:
* PayPal balance
* Bank account

FEE OF 2.9% + $0.30 per transaction
* Fully or partially funded with:
* Credit card
* Debit card
* PayPal credit

On the SEND MONEY page, use the PERSONAL tab and not the PURCHASE tab.

email: bearflag70

I truly thank you all for everything from a kind word to any contribution.

Last edited by Bearflag70; 08-02-2010 at 06:05 PM.
  #220  
Old 08-02-2010, 06:07 PM
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My god, she's beautiful.

I'm so sorry that your family is going through this. Add me to the chorus of posters who wish we had something less trite and more comforting to say to you.
  #221  
Old 08-02-2010, 06:58 PM
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She's gorgeous!

Also, I feel a bit shy suggesting this, and feel free to nix the idea or modify it: I want to do something to help but I don't have much money to spare. I am crafty, though, and have an Etsy shop (I sell saint medals, mostly) and I know there are other crafty dopers too. I could set up a Little Owl section in my store for things I/others make with the proceeds going to your paypal account. Or someone could create a new Etsy shop for that, if that'd be preferable. I'd be making cloth or knit toys, mainly. Maybe little quilts, too. Anyone have any thoughts on that?
  #222  
Old 08-02-2010, 07:31 PM
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Not that it would be one iota easier if she were less attractive, but damn that is one beautiful baby girl.
  #223  
Old 08-02-2010, 08:22 PM
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I've thought about you alot this weekend. I am a new mom to a 5 month old boy and I can't imagine. I tried to tell my mom about your situation and I barely could get it out as I choked back sobs.
Ruffian is right. Four months old is too early to sit up on their own. A healthy four month old would flop over too. My five month old flops over as well. They say it takes until six months to sit on their own.
I can't imagine your wife going back to work at this time. I don't think I could either. I would like to donate to your family. Maybe we'll raise enough where your wife can stay home. Your little owl needs to be with her mama.
  #224  
Old 08-02-2010, 08:29 PM
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The pediatrician called just to talk. I asked her about optimism vs. realism and her level of certainty absent the blood work. She said she was probably 90% certain it's SMA. Even if it's not SMA, she said there's some serious issue going on.

Apparently, there is an experimental clinic out of Stanford University. We'll look into that.

Otherwise, it appears, for now, we have located a benefit of 100 days of half pay. We're still looking.
  #225  
Old 08-02-2010, 08:48 PM
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bearflag - When will you know if its SMA-1 or -2?

StG
  #226  
Old 08-02-2010, 08:56 PM
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Blood was drawn today (Monday). Lab results in a bout a week.

We see the neurologist tomorrow (Tues).

The FSMA guy sees us Wed.

One of the big questions at this point is how they decide Type 1 or Type 2 at 4 months of age and which type they think applies in this case and why. I hope to have some answers tomorrow. However, I seem to recall the neurologist saying something to the effect that if it's discovered before age 6 months, then it's most likely Type 1.

Last edited by Bearflag70; 08-02-2010 at 08:57 PM.
  #227  
Old 08-02-2010, 09:50 PM
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Bearflag,

I'm in San Jose -- 30 minutes from Stanford -- so if you need a place to stay or hang out if you need to be at Stanford for a few days in a row, let me know. I've got a big house and an empty guestroom (with en suite bath).

And I have more baby gear than I care to admit.
  #228  
Old 08-02-2010, 10:03 PM
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Glad to hear that it sounds like you guys may be able to get an opinion from Stanford. It sounds like the peds neurologist there is doing some great research on this disease and may have a helpful perspective on what is realistic and possible since he deals with so many children with this condition. All the best once again.
  #229  
Old 08-02-2010, 11:09 PM
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We received a contribution to the Baby Owl Fund from someone and wanted to say thank you, but the email I send keeps bouncing back. So, thank you, thank you, thank you!

I cried when the first one came in. We appreciate every penny, thought, suggestion, effort, and kind word. Thank you!

Last edited by Bearflag70; 08-02-2010 at 11:10 PM.
  #230  
Old 08-02-2010, 11:24 PM
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My thoughts and prayers are with you and your family.
  #231  
Old 08-03-2010, 12:48 AM
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I read the whole thread as soon as I noticed the title had changed.

(((((((Bearflag, and family)))))))

and an extra hug for Baby Owl.
  #232  
Old 08-03-2010, 01:18 AM
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Quote:
Originally Posted by Bearflag70 View Post
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,
IANAD, but The Nephew could not support his own weight sitting up at 4 months. He could stay sitting up if you propped it at the corner of the sofa, but otherwise no. Other than a problem with a kidney, he's a perfectly normal kid. His sister otoh had and has the strength of a weightlifter; by 4mo she could sit up and by 7mo she'd do squats if you kept your hands around her (without pushing, just as a sort of placeholder). So based on a non-representative sample of two, it varies wildly.
  #233  
Old 08-03-2010, 03:42 AM
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Ye gods. {{Bearflag & family}}


Fingers crossed for a misdiagnosis.
  #234  
Old 08-03-2010, 05:17 AM
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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
I'm not sure of her type by these definitions. As a child, she was propped in an electric wheelchair with just partial movement in one hand, but by the time she was a teen she lay on a wheel-bed and had to be moved by someone else - she had a very undeveloped, inert body; she could speak and wiggle two fingers only. This is how she was the last time I saw her as an adult.

Anyway, that's more detail than I really should be giving.

Once again, my thoughts are with you.
  #235  
Old 08-03-2010, 05:36 AM
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I just had to come back in and say your daughter is so beautiful. The thought of the world losing such a gorgeous girl is unbearable, let alone the thought of you losing her...

This is a UK site so I'm not sure how relevant is it, but they seem to have some news on new research so I hope it might be of interest - http://www.jtsma.org.uk/

(Jennifer's Trust for SMA, UK)

Again, all I can do is offer my best wishes and say my thoughts are with you, and I'm checking this thread daily, hoping for good news for you.
  #236  
Old 08-03-2010, 07:07 AM
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All the best. Take care of the little angel and give her a kiss from Uncle Ak84.

My thoughts are with you.
  #237  
Old 08-03-2010, 07:15 AM
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I'm sorry and all the best.
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  #238  
Old 08-03-2010, 08:15 AM
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So it turns out that my brother-in-law is an MD/PhD student in neurology, currently working in a lab studying SMA, and recently published a paper about a possible new therapy. From what I read, I don't think it would apply to your case - it was a mouse study, and only applied to very newly born infants - but I've emailed him asking for any information or resources he may have.
  #239  
Old 08-03-2010, 10:25 AM
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Here's what he wrote back:

If diagnosed already by 4 mos. old, chances are that he/she has type 1 and will at least be ventilator dependent by 2-3 years, if they choose to go that route. This is statistically what happens, but there are of course outliers that can make it much longer than that. The Fight SMA website (http://www.fightsma.org/) and families of SMA website has some good information and will tie them in to the community (http://www.fsma.org/FSMACommunity/NewlyDiagnosed/).

They can go to this link and request a packet, and there is a special link for type 1 parents.

One thing we're seeing in the clinic is that patients put on BiPAP earlier than 'needed' (even just at night time) tend to do better than those who wait to 'need' it. This is only anecdotal, but may be something to ask their neurologist/pulmonologist.

I'm sorry to hear they have to go through this, and I wish them the best.
  #240  
Old 08-03-2010, 10:29 AM
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I was very sorry to see how this thread title had changed, too - I believe my words were, "Oh no!" Fingers crossed that you might still hear some good news, Bearflag.
  #241  
Old 08-03-2010, 10:33 AM
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There aren't words that haven't already been shared. I just wanted you to know that I have been moved deeply by this thread and your family. If prayers are welcome I can offer those.

Thank you for sharing the pictures. I love the image I have of you moving her arms and legs and her laughing as you described. Is there a better sound than baby laughs?

I'll just add that though I don't have an experience that compares, Dopers have helped me through some pretty dark times. We're here for you.
  #242  
Old 08-03-2010, 10:47 AM
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I am so sorry to hear this...please let me know if there is anything I can do.

can we put a call out to the school board and have the other teachers donate one of their sick days to your wife - somene earlier in the thread mentioned that they can do that - can we check into your schoolboard/division and see if you can can do that? If there are 200 teachers and each donates one sick day, that buys you some time...

Praying for you...
  #243  
Old 08-03-2010, 11:23 AM
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According to Stanford University:

There are three main types of SMA, classified according to severity and age of onset.

Type I SMA: also known as severe, acute, or infantile SMA or Werdnig-Hoffman disease is the most severe type. Symptoms, usually begin within the first 6 months of life. Mothers who have previously given birth may report decreased movement of the child in utero. Those with Type I are not able to sit unassisted and may appear "floppy." They often are too weak to even speak, and there is a significantly reduced life expectancy due to respiratory complications.

Type II SMA: or intermediate SMA, has its onset in the first 18 months of life. It is often similar to but less severe than Type I and is characterized by the failure to stand or walk unassisted.

Type III SMA: (mild SMA or Kugelberg-Welander disease) presents the mildest symptoms. First onset is usually after 18 months of age and the range of severity is quite broad. Some patients become wheelchair dependent in late childhood and others may live fully independent lives into adulthood. Some of the more severe Type III patients are tough to distinguish from Type II patients. Types II and III are also sometimes called "chronic" SMA.
  #244  
Old 08-03-2010, 11:25 AM
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Thank you all again. I feel bad for having little more to say than thank you to express my gratitude, as you probably feel bad for not having something more to say than sorry. We're all at a loss for words.

Last edited by Bearflag70; 08-03-2010 at 11:27 AM.
  #245  
Old 08-03-2010, 01:36 PM
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Logging in to post for the first time in a very long time. Bearflag70, I'm so sorry your little girl has these issues. Here's hoping for a lot of love and happiness in your family's future, and as favorable a prognosis as possible.
  #246  
Old 08-03-2010, 02:12 PM
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I am so sorry to her about your little girl. I was directed this way by a member of another board I frequent, and I am heartbroken to hear of her diagnosis. Your family will be in my prayers.

Have you considered starting a caringbridge website? It's free, and it's designed for families going through things exactly like this. This way, you can keep a journal (which most everyone finds to be therapeutic as well) that keeps everyone up to date on how things are going, and saves you from having to repeat yourself to everyone in your family, and friends. I believe you can also post how people can donate to your fund to help with expenses. The website is www.caringbridge.org .
  #247  
Old 08-03-2010, 03:07 PM
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I am devastated to read this. I'm actually glad that I can't click on the pictures right now, because I know I would break down.

If you need assistance with benefits and legal matters, there is a Medical-Legal Partnership in your state.

Oh, my heart just is so sad for you.
  #248  
Old 08-03-2010, 03:08 PM
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Words cannot express...Oh shit.
  #249  
Old 08-03-2010, 05:39 PM
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Bearflag,

My heart has been heavy over this for days now, ever since I first opened and read the thread. It hits me in the very tenderest part of my daddy-heart (our own daughter is a beautiful and healthy six years old). As many others have already expressed, your family has my tears, love, and support, as well. Take care.
  #250  
Old 08-03-2010, 06:00 PM
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We went back to the neurologist. He brought in a second neurologist and a geneticist. They all agree with the tentative SMA1 diagnosis. They expect the blood work will just confirm the tentative diagnosis within about 10 days. They called Type 1 in this case based upon the date of onset within the first 6 months of life.

We went over our family medical histories with the geneticists. The only SMA risk factor they see is Northern European white background.

They said our Little Owl looks very alert and is fairly strong for an SMA baby, so we probably won't need any special accommodation for a few months. When things go bad, they usually go bad in the winter, when all the illnesses come around.

They were surprised at how well-versed and well-connected we are with respect to SMA given that we are only 4 days post-diagnosis. They were a bit surprised that I had already learned a little bit about what "exon 7" is (the critical missing ingredient causing SMA). They seemed a bit relieved that we were asking all the right questions, we were were on the ball, and we appreciated a frank and realistic discussion instead of tippy-toeing around the difficulty.

It is by no means easy though. In fact, it's hard as hell.

Last edited by Bearflag70; 08-03-2010 at 06:04 PM.
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