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?
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.
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.
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.
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).
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.
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!
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.
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.
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.
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.
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.
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.
