Okay, thanks for answering so fast. Sorry if those things were brought up earlier in the thread and I missed them. I think of you all daily and I hope that you know that all of us are for you and your family and I hope that brings some small comfort your way. You really sound like a great person- the way your wife writes about you, you can tell that she is really in love with you and thinks the world of you.
That’s not a big obstacle, especially if you end up doing IVF. The real question is your wife’s age. If you think you’re likely to go this route and she is in her 30’s, you might want to look into doing a cycle soon and freezing the embryos until you are ready. It wouldn’t hurt to talk to a fertility doctor, at least.
I hope that in time, you’ll be ready to welcome another baby into your lives. Never a replacement for Getty, but another child to share your joys and sorrows with.
But there ARE cases? I was trying to find out last week & couldn’t locate anything.
The neurologist said knows a guy personally who is now 30 who was diagnosed SMA1 at age about 6 months. He’s in a wheelchair with no ventilator. He said he’s reluctant to tell that story because he doesn’t want to offer false hope.
My understanding is the vast majority of SMA1 cases that go beyond age 2 are on ventilators. Part of the reason the life expectancy for SMA1 kids is age 2 is because some parents opt for “no vent.” Some SMA1 babies get pneumonia and the parents let that run its course. These decisions affect the average life expectancy. I imagine if all SMA1 parents chose to vent and all SMA1 pneumonia cases were fully treated, then the average life expectancy would go up.
We know another family, but we haven’t met them yet. They have a 2 year old SMA1 child with no vent. I heard another story of a kid who is now in elementary school with no vent.
There is no “standard progression” where they can say something like swallowing difficulty should occur at age 8 months and you should need a vent by age 13 months… nothing like that. Each patient is on a case-by-case basis.
Sometimes strong SMA1 kids are loosely called “Strong 1 Weak 2” cases. Life expectancy for SMA2 is higher than SMA1. I’ve also heard it said in decimal fashion where a strong SMA1 kid might be called SMA1.8 or SMA1.9 to indicate higher strength.
I don’t really have anything much to add here, except that I have been following this thread and I think about your sweet little Getty every day, and I’m so glad to see you enjoying every day with your beautiful girl. I only wish that I were in the position to help financially, but unfortunately I have no extra resources, unless you are interested in lots of baby clothes? 
My best and most hopeful thoughts to your family during this difficult time.
Thanks to the help of a wonderful friend, we are moving off Caringbridge and over to gettyowl.com
This new site has more capability than Caringbridge.
[ul]It will allow people to see upcoming events, such as fundraisers being planned.
[li]It will allow uploading of more photos than Caringbridge allows. [/li]
[li]It will allow people to comment on each journal entry instead of in a separate general guestbook. [/li]
[li]The new site has a donation button to donate to the Little Owl Fund instead of a donation button where donations go to Caringbridge. [/li]
[li]You can subscribe to the new site just like Caringbridge. [/ul][/li]
All the Caringbridge entries have been copied over to the new site. There will be a transition, then we will stop Caringbridge completely in favor of the new site.
You are welcome to join us in our journey.
Thank you all again for your kind words and support!
Cool! Bookmarked!
That is a wonderful website Bearflag. Thanks for allowing us the privilege of sharing these moments with you.
Looks great!
Bookmarked.
Does any of the money from purchases of the owl gear go towards helping Getty? I’m sorry if this has already been answered, but I couldn’t find it in the thread.
Yes. Equipment, supplies, medical co-pays, etc. If there’s money left and she passes, then it goes to Familes of SMA. The Cafe Press stuff is a standard Cafe Press deal where we get a percentage. We set up a trust account for her, so all proceeds will go there.
Great job, Mark and Kate! Bookmarked it too. Going to get me some GettyGear now.
Edited to add: I can’t get at the Getty stuff now, I’ll try again tomorrow!
Send me a picture if you like!
Love the new site, and I’m so glad Getty’s test results were as good as you could hope for.
I have a friend I’ve known for going on 15 years with SMA Type III. I posted a link to Getty’s new page on my facebook page and he asked me to share this with you. . .
Standford University has re-opened one of their clinical trials for SMA patients.
I just ordered the Little Owl ( I heart Getty) messenger bag and a “Miss Getty is my hero” teddy bear for my granddaughter.
At first I had problems with the store site, but finally realized that my security levels were too high, so I lowered them for a few minutes and everything was fine.
I still check the CaringBridge site to look at the pics of the Owlet and her family, as only one photo is up at the new site.
Thanks!
Thank you, too, and we’re in the process of getting the site fully up.
BTW, Getty’s pic is among the ones that pop up at the top of the SMA website. Her smile is hard to beat and those blue eyes hard to miss!