Links and more specific diagnosis

The support group that has been a tremendous help to us, amcsupport.org, is now a 501c3. Well, any contributions to them is now tax deductible. That means so many more opportunities for the group, its board of directors, and members. Since amcsupport.org is national, it takes money for families to travel to the conventions. A new set of casts or surgery can put a family back thousands of bucks.
Having an online group is one thing, but meeting leading experts in the nation for a one on one consultation, no charge, is an entirely different story.
We liked the care Phoebe received and felt confident in the fact that she was seen at a prestigious hospital. Once the convention began and families exchanged what they learned from those treating their children, in addition to what the pt and ot from Houston's Children's Hospital prescribed, we realized we needed a different approach to Phoebe's care, a team of professionals at one location. We're now regular visitors to the duPont hospital and are seeing much faster progress because there's simply more experience there dealing with Phoebe's condition. She was just diagnosed with a mild form of amyoplasia, which translates into a lack of muscle. She does have muscles, only weakened quads. Her hemangioma, or red spot on her forehead that's fading, her limbs are affected in a symmetrical pattern, elbows slightly stiff, both knees stuck in flexion in utero, the bilateral clubfeet, another indication of amyoplasia.
Her prognosis is good considering, and we're relieved that no other organs are involved. Her mind is sharp and her talent at getting Paul into trouble is scary.

Phoebe's stance on standing...

Phoebe has a stander that she's supposed to be strapped in for however long she tolerates it. The thing is , she screams as soon as we strap her in! Since she has 2 physical therapists with 2 different opinions, 1 for the stander and 1 for just plain standing, supported by a table and our hands, we've opted for just plain standing her up with her knee and ankle splints and shoes with foam inserts, supporting her bottom, and she'll do the rest.
The latest standing aid we received at duPont is the "magic pillowcase." The closed end has 2 holes for her legs. We put legs through, gather the fabric in our hands and lift one side at a time, and she's walking! As long as she's in a good mood to begin with, she'll tolerate her standing as long as 10 minutes at a time.