We arrived in KC, Sunday, March 5th, this week we are at the RMH-Bernstein House. We got settled in and walked through our day for Monday we drove to the places we were going to and time the drive. Drop-off is about 3 minutes drive and pickup is about 5 minutes. all in walking distance. We are not in the best neighborhood and have been told that we should not be out after dark in the area. We have been staying close to home this week. Monday we checked in at 645 am mt met with dr she checked JoAnna over again and went over the paperwork. Jo put in her lunch order and then she and I went our separate ways. She had evaluations the rest of the day and an individual plan put together for just her. 8 hour days of intense therapy. She met a girl that has been here for 3 weeks that is in the program and also on Tuesday another girl started the program. Some kids are there for 4 weeks others for 10 weeks +. They don't send kids home until they are good to go. Each child is different and has there own plan and goals.
They have kids who come from literally all over and the success rate is high. I had a parent session that day and met another mom, the stories and backgrounds are a lot like ours and many of the girls share some of the same dx. It's nice to have others that truly understand how crazy this has made your life and the issues that come with it. I am working on myself while I am here. Physically spiritually and emotionally. JoAnna is also doing the same. I have already been challenged starting out with being sick from covid and the last two days I think I had food poisoning or something. Still having respiratory issues from covid. I have had to face the crazy anxiety that has come with all of this and feel that I t is getting better. JoAnna is doing well she has not once complained or negative things out of her mouth, I can tell each day is harder for her they say week 3 is the breaking point for most kids. Each day her goal is to beat yesterday's time goals. We try to stay busy till bedtime she is to keep moving all day long. I did order ice packs today. She said was going to need them tonight. I have heard no complaining out of her not sure what they are doing during the day but this is so odd and will be a good change. I do not ask her how she is feeling we want to re-program how the brain and body work together. So we watch what and how we say things. It makes sense maybe not the idle thing This is a tough program some say if you make it through something like this then boot camp is a breeze. She is blessed to be a part of this program and her outlook is very positive. She wants what teenage life she has left to be a teenager. Do things with other kids play sports her SR. year she has some really good goals and wants. She wants to be normal. She will find her new normal and she will be very successful. The WANT and WHY are REAL.
When Jo graduates from the program she will have a better idea of how to manage her pain. We know this is not a fix-all to her problems but we know that her nervous system is haywire.
We think this l, starting a year ago having covid, and then a month later the blood infections started and were one after another just the icing on the cake that spiraled out of control. We have gotten answers along with new diagnoses along the way and are still in the works on another test to rule things out. Regardless of the outcome, we are doing all the things we would be doing with a new dx. We are hopeful we can help the chronic hip pain and stomach issues. Problems will be addressed as they come as a plus to having someone see her for a long period of time.
If anyone would like an address to send encouragement please message me.
https://www.childrensmercy.org/departments-and-clinics/rehabilitation-for-amplified-pain-syndromes
Definitely sore and it's hard, I just finished week 1. Swimming is the hardest. We went to the crown center this morning and learned about Hallmark, its history, and how it was built now. We're definitely in for a ride when it comes to figuring out where to go but we're slowly familiarizing ourselves with the city.
