We sleep in a little late because our bodies have not adjusted to East coast time yet. So we have been getting up between 9 and 10. Genevieve’s appointment was at 11:30 and it’s about a 45 minute drive from the Ronald McDonald House.
Again, the treatment was about the same as the day before. Dr D moves her leads around and adjusts the intensity until her foot is mostly pain free. She has an area or two that are stubborn. Perhaps scar tissue is in the way or she is feeling pain from her bones having low density (she has some osteopenia, I think it’s called). Anyhow, once she is hooked up and dialed in she walks around in tiny circles and is mostly pain free. Then she gets on the bed and lets the machine do it’s thing for 50 minutes. She has been experiencing a lot of itching where some of the leads are placed. Like really intense itching! The doctor says there are certain nerve fibers that conduct the itch sensation, and that it’s not a bad fiber to conduct through, it’s also not very comfortable. So he gave her a prescription to help with the itching. He also gave her a prescription to help with inflammation so she can stop taking 600 mg of ibuprofen 3x/day. She will start these tomorrow.
We got to have lunch with Kristi & Megan today. They are both super sweet. Megan is finishing her booster treatment tomorrow and they are flying home to Ohio.
After lunch we went to the Physical Therapy appointment which was just an exam and evaluation. G answered a bunch of background questions, and the PT did a lot of measuring and testing to see where she was at. We got a good feeling from her and look forward to starting tomorrow. They have a therapy pool and G will get to do some pool time with the therapist which will be great.
Unfortunately Genevieve’s pain progressively got worse throughout the evening. We again ran a couple errands and each time she would get out of the car her pain was worse than before. I don’t know if it’s the treatments or the lack of PT she has been doing. Before we left CA she was using a warm therapy pool almost every day.
I just met another mom through Facebook. Her 11 year old was diagnosed last week. I can hear the agony in her words, something I’m all too familiar with. It’s weird how you can have such an instant connection with a stranger. Oddly enough her daughter also had a tarsal coalition surgery (although that is not how she got her CRPS- it was vía a sprained ankle). We have gone down similar research paths and exchanged information on treatments. She had some info on hypnotherapy which I haven’t explored too much yet but I definitely will.
Praying for a breakthrough tomorrow. I don’t care how long this takes as long as I know it’s working.
We are praying continually and are grateful that so many of you are also.
***PS- I’ve decided I’m going to go live with this blog. Part of the reason I have been hesitant is that I want to be able to honestly record the process here, but I also don’t want Genevieve reading it right now. I don’t fully understand neuropathy, but there is a brain component and I think her head knowledge can hinder her healing. I answer her questions, but I only offer certain information on a need-to-know basis. She doesn’t need to be processing all the other stuff. So I’m ok with friends and family reading and sharing this, but please don’t mention “the blog” to Genevieve, and please don’t ask her things about her foot, pain, treatment, and especially CRPS.
HOWEVER, please feel free to reach out to her. Not many of her friends have communicated with her much since we’ve been here and I know that bums her out. This is really hard. She learns a little bit more about this horrific condition everyday, whether from the doctor or someone else. It’s a lot to take in for a 17 year old. She needs to feel loved more than ever.
