I’ve never even heard of SMA until Getty’s unfortunate diagnosis. You and Kate are an inspiration getting the word out about this condition. Getty is as lovely as ever! I pray for great things for your family and a breakthrough and cure for SMA now!!
Please let us know how the craft fair went and update us sometime soon! I wish I could be there and buy some “Maggots and Poo!” 
The craft fair was great! We raised awareness and some money. I saw some friends and relatives I hadn’t seen in some time in addition to other friends and relatives who came out to support.
We had about 80 vendors, which is double what we originally estimated. The event planner wants to do Getty Crafty annually. She also has other fundraising events in the works for us. We are truly grateful. She also wants to get into event planning work but doesn’t know how.
One of the SMA families drove about an hour to come out and see us with their SMA1 child, who is now almost 3 years old.
Some of my wife’s family drove about 4 hours to see us, and other friend drove about 2 hours.
I was so busy talking to everyone for 4 hours, I didn’t even get a chance to really look at the vendor most of the booths.
All the vendors I did meet were very nice and everyone loved meeting Little Miss Getty.
In all, a great event!
Great news!
Here is a brand new song and video inspired by an SMA child named Sophia. She is the daughter of a wonderful SMA family in New York who have been a tremendous help to us.
I’d really appreciate if our SDMB Team Getty would watch it, Youtube comment on it, favorite it, and promote it to help raise awareness.
You might see a familiar face at the 4:02 mark. 
Thanks!
That was so beautiful.
Spectacular idea! It makes people feel good to help somehow and the economy does suck right now. This would be great with Xmas coming up. Anyone familiar enough with the selling end of Etsy to know if this could be promoted in some way on the site? I am only familiar with the purchasing end…
Just thought I’d pull this up so that we can keep rooting for baby Getty. New post on the blog dated November 5th, sharing the details of Getty’s latest setup.
Plus pics from her last week very happy in her LittleOwl costume! God, she’s precious!
Thanks!
i just read that the wee owl is going to hospital saturday.
i hope all goes well, she heals quickly, and the operation is successfull.
Thanks!
G-Tube and Nissen fundoplication being done early next week.
Scary stuff. Even though you know it’s the right thing, this is YOUR BABY they’re operating on.
Why does she need to be admitted beforehand?
We want her to be on a BiPAP machine immediately upon extubation from surgery to assist her breathing so she can use all of her energy to recover instead of wasting it on trying to breathe.
However, children put on BiPAP for the first time often struggle with the machine, cry, and waste a lot of energy. This process can take a few days for kids to get used to the BiPAP. Also, medical staff needs to determine the proper mask and settings.
We don’t want her wasting energy post-op on fighting the BiPAP machine. So, we are admitting her a few days early just to get her accustomed to the BiPAP to avoid a potential huge waste of her energy post-op.
her hair is really coming in now. she will be rocking the “top of the head” tails soon.
i hope today is a better day for y’all and things go much more smoothly.
Our first day in the hospital pre-op was an absolute joke! Total incompetence all the way around.
On top of that mess, Kaiser knows Getty takes Gentle Ease formula, but they have NONE. :smack:
I said ok to regular formula WITH MIRALAX for now, but they fed her all day on JUST formula. :smack::smack:
Today, still no Gentle Ease, just now got Miralax. I could have Gentle Ease and Miralax from the grocery store in 10 minutes!
Now, Getty is distended in part due to the improper diet and can’t test the breathing machine until we get the distention down.
MORONS! :mad:
You have my best wishes as much as that’s worth. Do the best you can every day and enjoy the best you find which can still be much more than you expect.
I read Kate’s blog post earlier. With all you preparations and precautions, they should have been ready with all the proper equipment and supplies. It is shocking beyond words, I’d be livid.
Last night as I was falling asleep, I thought of Getty and the fact that she’s still a smiling baby. She’s surrounded with love and care-- and she has no preconception of what a baby’s life should be like, so she’s happy. I find that incredibly touching and a source of hope.
i’m sorry to hear things are not getting better. your frustation level must be 500 feet above the roof!
know we are thinking about y’all, and hoping all goes well for the wee owlet.
I hear you. Frankly, I never heard of anyone who had to stay overnight in a hospital who had a good experience. A patient always needs an advocate on the outside you can get the staff to do their jobs right.