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.
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…
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.
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.
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.
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 .
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.
Words cannot express…Oh shit.
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.
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.
{{{{{Bearflag}}}}}
Thank you. I was thinking about this and wondering if it is any better or worse than creating a Facebook profile for the Little Owl and updating people that way.
{{{{{{{bearflag70 & family}}}}}}}}
Caring Bridge is great! I’ve used it in victims’ services to get info out to masses of people. The family can set it up and get all the info out and it is very well-organized and easy to use.
Here’s the game plan for helping you out, Bearflag.
Step 1: I’ve sent up the bat signal to the CouchSurfers. We don’t have a lot of money (collectively) but we’re the most generous club on teh intarwebz. I pitched the idea at our meeting tonight, and we’re throwing a charity event in your name. I’m going to try to get a bunch of different bars to help donate the proceeds to you.
Step 2: The CouchSurfers will act as our town criers. We’re going to put the news out over the network. Everyone that wants to participate will put up some signs or a donation method in their corner of the world.
Step 3: I’m trying to come up with a good idea for gifts to sell at exorbitant prices. My aunt can get me T-shirts printed through her company. With your permission, I’d like to put your daughter’s picture on it. We’ll sell the T-shirts for, like, $20 a piece. They’ll say “I helped baby ____'s family”.
That’s the plan for now. Any ideas will help. When I get this thing up and running (pending the official diagnosis), I’d like to have as much planned as possible.
ETA: We’re also going to do Gourmet Hugs. It’s like Free Hugs, but it costs a dollar, and they’re really good hugs.
:eek:
Holy crap. Holy crap.
We are stunned. Your generosity is amazing.
We are all for whatever you need. I seriously need to digest all this.
Stunned.
Wow.
I came in to post that I plan on going with caringbridge.
Wow.
Thank you. You don’t even know…
{{{Chessic Sense}}}
I think this is awesome. Put that little cutie pie’s picture on the shirts and they’re going to sell like hotcakes!
Aw, dammit, there goes my leaky eyes again…
that is a great page, bearflag70.
wonderful game plan chessic sense. the tee shirt idea is brilliant!