My baby girl has Spinal Muscular Atrophy (SMA)

Cuteness alert! A real life owl hat.

I thought you were going to post a link to the latest pic of your Owlet in her owl outfit. Cuteness overload there too.

Halloween

Bearflag70

First of all, my heart goes out to you. While I was reading this thread, my daughter came over an crawled in my lap. She doesn’t do that very often.

Secondly, the two states I’ve lived in since my daughter was born both had programs for children 0-3 years old. In Florida, it was called Baby Steps, in Georgia, Babies Can’t Wait. Essentially it is a state funded program that exists to intervene in matters of infant health/well being. My daughter was diagnosed with a significant speech delay. I had full coverage insurance. The insurance only covered 6 therapy sessions and there was a 4 month wait for an evaluation. When I found Baby Steps, they were mandated to provide care within 30 days. It is not based on income. They don’t give a crap if you have insurance, their job is to help the kids.

I have no doubt that your daughter would fall under their criteria. I’ve searched the California Public Health site and couldn’t find the program. However, I have the number of the woman who helped start the Babies Can’t Wait program in Georgia and will find out if she can put me in touch with someone in California, or at least get the name of the program.

To put it in perspective, while my full coverage insurance would cover 6 therapy sessions, Baby Steps provided weekly therapy sessions at my home, full evaluations and transitioned my daughter into the school system when she turned 3.

I know they deal with much more serious issues than we had. I’ll report back when I have more information.

Found it.

http://www.dds.ca.gov/EarlyStart/ResourceMaterials.cfm

Thanks for the link!

Here’s the email exchange between Cookies and GSF.

I would not bother with restraint. I would nom, nom, and nom some more. :wink:

Have you seen this article? It’s about a local (to us) boy with SMA I who actually can spend time with an in Kindergarten a few hours a week. He’s sick, no doubt, but learning and living.

http://www.wtnh.com/dpp/news/health/boy-with-rare-genetic-disorder-living-learning-beating-the-odds

Here’s the Getty Crafty craft fair fundraiser segment on Good Day Sacramento!

Maggots n’ Poo!

Very cool! Glad it went well!

Is there any place where they list all the crafters who were there? The reporter said you could order stuff online, and I really like that gray knitted hat with the steampunk looking goggles that was displayed by the first exhibitor they talked to (the one who also had the football hat). They mentioned there was a list somewhere on the site, but I couldn’t find it.

Loved the maggots and poo!

GEtty Crafty vendors list with links.

I couldn’t find the links either at the Good Day Sac site.

Vendor links from Good Day Sacramento

Thanks much. I found the vendor, but sadly the hat is a baby hat, so I doubt it would fit me. :slight_smile:

I’ll ask if she can do an adult hat and get a quote for you.

Check your PM.

Hope the craft fair is a success tomorrow.

We made the local news tonight.

Kate, you, your friends: you’ve done amazing work getting all sorts of projects under way-- and even getting your message out in the news! WTG

Cool seeing all 3 of you live. I hope there’s a huge turnout tomorrow.

They moved the video link. Here it is.

There was her little Bert laugh again!

That was a lovely segment, Got something in my eye… Hope GETty Crafty is a smashing success today!