Pray for Ryan

Please keep my boy in your prayers. Some days with this disease are harder than others. Today is one of those days and it's not even 9:00 am yet! He woke up this morning around 7:00 and wanted his shower, as usual. Its been a few years since I was able to shower him as he's gotten so big. Steve is pretty strong and he has felt confident that we didn't need to modify our bathroom for Ryan as he could still shower him very easily. To shower Ryan, we lower him into the bathtub onto a chair that sits inside the tub and then he is able to spray himself with a detachable shower nozzle. It's not the best setup. But, it has worked since we moved here when Ryan was 5 years old. Maybe the time has finally come where we need to do something different. Today when Steve was lifting Ryan up out of the tub, he somehow hurt Ryan's back. Keep in mind, that sometimes just grazing a foot the wrong way can cause extreme pain for Ryan. Even the act of putting on his socks or shoes can cause him extreme pain. It has just become our "new normal". He experiences pain on a daily basis. Some days it's worse than others. It's never easy to see your child hurt and feel so incredibly helpless in easing his pain. Showering and getting dressed aren't things he can do without, obviously!! So, often times, causing him some pain is something we can't really avoid. The bigger he is getting, the more pain he seems to experience. I can't say it enough times at how much I'm looking forward to heaven. My boy will be whole and free of pain and disease.