EP: Earlier in this conversation you said that as a side effect of the controversy many hospitals and doctors had decided not to offer the Ashley Treatment for other severely disabled children. Time will tell if it remains stable and she will be able to avoid a scoliosis surgery, which is possibly another significant benefit of the Ashley treatment and one we did not anticipate at the beginning, but are very hopeful about.
However, the issue of the impact of size on encouraging "mobility" would generally be true whether the care is provided by family members or by other care givers. Nevertheless, we do need to address the separate issue of the society's inadequate support for caring for those with severe disabilities.
She is completely loved, and a source of joy and a delight to our family. I find it difficult to argue that this child and similar patients benefit merely from reaching their genetic growth potential. Many supportive emails indicated a reversal of position upon visiting the blog and seeing Ashley's photos.
The kind of developments that we've observed with her along the years include: being able to hold her head up, stick her thumb in her mouth, and touch her hair behind her ear.
But it doesn't always go that way. As the hospital didn't provide me with a wheelchair, I lay in bed or on the floor for most of the next 14 years. Although she sleeps and awakens, and breathes on her own, she is unable to raise her head, sit up, hold an object, walk, or talk, and must be tube-fed.
It would help to know the incremental risk of cancer associated with the estrogen therapy. All children who can't talk should be given access to communication therapy before any judgments are made about their intelligence.