Part 1 can be found here,
It was November 2013, and we had just been called into our doctor's office for some news. First of all, he said, new test results had shown that Tommy never had mono. (We still don't understand or know what happened there, but at this point it doesn't really matter.) The doctor then gave us his official diagnosis: Amplified Musculoskeletal Pain Syndrome.
At the time, we had never heard of it, and probably neither have you, but the doctor explained that it's very similar to fibromyalgia. It's actually not, but fibromyalgia is a disease people already know about and so it's kind of an easy way to almost explain it. I still don't know how to really explain it. I like to say to people that it's a horrible thing and that it's hard to understand and even harder to explain. Basically it just means that my kid is in terrible pain.
Back to the doctor visit; he told us that he had talked to the folks at Children's Mercy about a treatment regimen, and that they recommended that Tommy start physical therapy. He was to meet with PT for 3 hours a week and do workouts for an hour a day on his own. He also needed to do desensitization exercises, which are a way of retraining the brain on how pain is interpreted, and is, coincidentally, extremely painful and uncomfortable.
The doctor explained that we were to try the PT regimen for a while to see if there would be any improvement, but if he didn't get better, we would be put on a list to be evaluated for the RAPS program at Children's Mercy, which is an intensive treatment program, involving 8 hours a day of PT, OT, and pain management counseling, for 4-6 weeks in Kansas City. They only accept 3 kids at a time. We knew it was a long shot, so we held out hope that the at-home treatment regimen would work.
Right after Thanksgiving, we started attempting to keep up with this regimen, and it was absolute torture for everyone involved. Tommy just wanted to sleep. It hurt too much to move. He would beg and scream and cry to get out of PT because it just hurt. too. much. Once he got to PT, he would cooperate with everything she asked, just like an angel, but for Greg and me he just refused. It was so frustrating.
By the end of December, we all agreed that it was not working, and we requested an appointment at Children's Mercy. The first one available was March 13. So we waited. We kept pushing Tommy, and Tommy kept hurting. It was a devastating wait. It was such a difficult time. I watched my child plunge into a terrible place of sadness and pain. It affected all of us. We just had to wait and rely on God for strength every single day. I could write pages and pages about what God has done with my faith through this time. He has drawn near to me and orchestrated events in a way that I could have never foreseen. It has been so hard to watch my child suffer, but I am holding on to the promises of Scripture closer than I ever have. I pray all of the time that this experience will strengthen Tommy's faith. It's hard to see right now, but I hope he will look back on this and realize how God was at work.
March 13 finally arrived, and we spent an entire day with the wonderful rheumatology and pain management specialists at the hospital. The doctor took one look at Tommy and confirmed that his was a classic case of AMPS, and that they were going to admit him to the treatment program. Dr. Hoffart knelt down at Tommy's eye level, looked right at him and said, "You are going to come here for treatment, and you are going to get completely well." I ran out of Kleenexes shortly after that moment.
Tommy started the RAPS program on April 21. He is currently in his 3rd week, and has shown a lot of improvement. They are focusing on rebuilding his strength, increasing his stamina, and are doing about an hour a day of (still painful) desensitizations in order to help him have normal sensation again. The doctors have told us that his prognosis is very good, so we are very hopeful. He still has a long way to go, and will remain on a treatment regimen of exercise, desensitization, and pain management counseling (plus full-time school) even after he returns home.
We've been staying at the Ronald McDonald house (which has been WONDERFUL) and I was able to take off of work for the first two weeks to accompany him. Greg has gone up for the final two or three weeks that Tommy is up there.
Tommy's day consists of an hour of pool therapy, several hours of PT and OT, intense and extremely painful desensitization, art therapy, music therapy, group therapy, and one-on-one counseling. We pick him up at the end of the day and he is hurting and swollen and pretty miserable, but as the days have gone by, he is starting to realize he is strong and he is getting stronger. He called me yesterday to say that he and the physical therapist had gone on a two mile walk. TWO MILES. For a kid who has had trouble just standing up in the shower for the past six months, that's pretty awesome. His feet were swollen and I'm pretty sure he was in agony for the rest of the night, but for that moment, he was just so proud.
All of the parents whose kids are in the program have a meeting with the psychologist twice a week, which has been absolutely soul-refreshing, even though I have cried in every single meeting I've attended so far. It has been so encouraging to hear that we are not alone in this struggle, and that other families have had similar experiences, sometimes worse ones at that.
I hope that I will come back to this blog and report on how wonderfully normal everything is with Tommy soon. It's not, yet, but hopefully soon. Meanwhile, I am just still praying for my little guy as he perseveres through this awful awful time.
To be continued...very soon I hope.
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