We are off to a busy but productive start this week:
Yesterday marked the last day of the boys’ “max” dose of steroid. Today we started a 3 week process of weaning them off of it. We’ve seen progress as a whole, (fewer and shorter spasms). But we’ve also seen regression lately. After going several days without a spasm, Landon had 4 on Sunday alone. The word “discouraged” doesn’t do this justice. I don’t know what our next steps are yet. Except for remaining hopeful, prayerful, and being glad that despite these unwanted seizures and spasms continuing to visit, the boys remain peaceful, comfortable, happy, and loved loved loved.
The twins had physical and speech therapy this yesterday. We came away with some useful instructions and plans. I hope to design a daily routine that I can use in the evenings to make the most of their alert time. We also plan to have some training at the day care so that staff can hear the tips and pointers and get hands on demonstrations.
We met with the division of specialized care for children yesterday. If the boys qualify (aka, are “sick enough”) we could get some help getting a nurse in the home for the day time care.
I interviewed with a newspaper with regard to the hero challenge and the boys’ pending birthday. Perhaps the scariest question I’ve never been able to answer was posed. “What does the next year hold?” I gave the only honest answer I could muster…”I have no idea”.
In other news:
-My fantasty football team won. (Hello Matt)
-We tried out a local church, and plan to revisit it.
-I’m learning to sew by attempting to make super hero capes for the boys for their party.
-K and I have our goodie bags ready to deliver to the police, fire, and EMS departments for our next good deed in the “hero challenge“.
-Speaking of which…I hope you will join us in the celebration on or before September 17th. Submit your good deeds to me via the blog, the facebook page, my email, text, anyway you know how to get ahold of me is fine. I’ve loved reading about them so far.