A Good Meeting

Today’s meeting with key people in the DDMR program went very well. I learned a lot about how the system works, but more importantly, how to work the system for Abbie’s benefit. It was providential timing because just this morning we had a vendor come to her PT session to size her and begin the paperwork for a stander. I was able to tell the DDMR folks about how critical this equipment is, so they will be expecting the paperwork and have vowed to work hard to move it quickly.

They explained that some very positive changes should be coming to the system soon that will allow families more control and input about how money is spent for each child. I am hopeful this will address one of the items I pleaded with them about — making the system more transparent and user-friendly. At the end of the day, it is still a bureaucracy with all the headaches and limitations to prove it, but I believe it can and will be improved.

Abbie had a pretty mellow day since we just did a lot of talking during therapy today. However, even in the midst of our stander pow-wow I looked down to see her doing new things. She was laying on a mat and was practically doing circles with her arms..way up over her head and then back down, while holding onto lumps of modeling clay (aka “the poor man’s orthotic”) in each hand. I happened to be wearing white pants that were a terrific canvas for strokes of orange, red and yellow clay. The sheet on the opposite side was colored blue from the clay in her left hand…it was as if she was making snow angels.

Chase and Kyle watched Abbie while I went to the meeting, and did a wonderful job. I am blessed to have such helpful sons, especially when I am without nursing

Tomorrow Matthew and RJ will be playing in the championship game of the Hawaii National World Series, which has been consuming our lives since last weekend. The most important part of a win is the humongous trophy the winners get…we are praying for success and a continuation of the great fun we all have been having.

I was just telling Ray, “Looking back this has been a tough summer for Abbie…Botox in June, having to start seizure meds, finding out a hip surgery is non-negotiable…but, I feel oddly hopeful. ” There is something stirring in me that is so opposite of what is going on in front of me, that I can’t help but feel that all is well and we are on the way to something very good.