I emailed my pediatrician yesterday because reults and questions and possiblilites were all getting so muddled in my mind. We were working at such a fervent pace for a while and I think I stop retaining information. The news is good. We have ruled out a malformation of the brain, metabolic disease, leukodystrophies, and vascular malformations. They know it is not cancer. She said that their theory is that the developmental delays stem from a previous injury, possibly in utero, that are not related to the BPTI. Unfortunately only time will tell for sure how delayed she will be and if she will be able to fully catch up. She said we don't know if the delays are going to be progressive, that we'll find that out on the follow up ultrasound if there are changes to the lesions. She told me that we are just going to have to wait and see if KayTar will ever catch up to her peers. But the hope that she might is wonderful. I thought we had lost that hope altogether. If she never catches up, we are okay with that, we've accepted that already. But if she does? And it can make her life easier for her? That will be wonderful.
So, we are now officially in a waiting game. Today I am taking her for what might be her last round of labs for a while, to rule out Rett Syndrome and lead poisoning. We are going to be getting her a walker, as well. So even though she is not walking, she will be "walkering" soon.