I can’t even begin to tell you how I feel right now. Amy’s Dad is all but dead set against Florida. On top of being at odds with him, I’m freaked out about financials with 4 other kids to care for, and me still not working. I’m sure that he is feeling the pressure for caring for all 7 of us…
On top of all that, we need to make a decision about Paley in Florida TOMORROW. Why? Tomorrow the window for open enrollment closes. Hell or high water the decision has to be made. I can’t even begin to tell you the enormity of the pressure I feel right now. I know that going to Florida is the right thing to do for my baby… but if that is the right thing to do, tell me why I feel so horrible about it? I talked to my parents, and I feel like I have a solid plan in place to pay for everything… but I feel so… twitchy (?) about it? It’s hard to put in words.
I sent a note to our nurse John, and he forwarded it on to Dr. Hoffinger. Both are just broken-hearted for Amy. John reminded us that we have the Exogen device, and suggested that we resume treatments to try and heal her fracture to help with pain. It worked before, why not now?
Can we just talk for a second about how INSANE it is that we have to go all the way to Florida? I mean, WHY doesn’t anyone do this out here? I see other people mention that they are going to X doctor and having Paley’s method done… but they are located on the East Coast, or up in the CHOP area, why not here? It’s too bad we don’t have the benefit of time. Maybe we could bring this procedure here, just like we brought the Bypass.
Of course… it will take time to use the Exogen, and time to find the right doctor. Maybe if we can get Amy comfortable, we could even wait until Dr. Hoffinger came back?
Have you ever had a moment of clarity that just burst upon you? It feels like weight just shifting off. I feel like Paley is the right decision… but I also feel like it’s the wrong decision. The idea of just being able to take our time and think… that feels right. I just feel like if we have to make a decision TOMORROW, that we might regret that choice.
I need to talk to Amy’s Dad- but I think the right thing to do is to try to heal this by ultrasound, and try to stave off the big surgery for a few months or years. (If possible) In whatever time I have, I am going to be a BIG ASS NOISY advocate to bring this surgery here.
Tomorrow, we’re meeting with a chief of pediatric surgery at Stanford. Amy’s NF doc said that he’s open to new ideas and techniques, and is very interested in NF1 research-wise. I’m hoping I can broach the idea of a trial of the Paley X-Union here. I know of another girl (plus Amy!) who wants it done-but isn’t really enamored of Paley. If nothing else, it would make for a good case study. If the girls show it to be a success, maybe we can bring this as an effective treatment to the West Coast???