I can not believe the relief Tim gets from steroids. Within 24 hours of beginning or ending a 6-day course of solumedrol his condition changes dramatically. Tuesday was one of the worst days he’s had for the spasms that cause his body to stiffen straight or curl up suddenly, then weaken and cause him to fall in what resembles a faint (though he never loses consciousness). Wednesday, with the steroids begun, was one of the better recent days. Still some of these spasms, but dramatically fewer, and the other symptoms (especially tremoring) were less as well. Sadly, the dose decreases daily – which is for his protection from the side effects long term steroids at high doses can cause – and the symptoms will typically begin to increase again soon.
Tonight we have a consult appointment with his primary doctor, who has been a God-send in her diligent search for consults and information to help. We also get to meet Penny and Calley in person for the first time (Calley suffers scarily similar symptoms to Tim’s, is about the same age, but has “only” been sick since February of this year). They are also consulting with Dr. B tonight. We’re going to be talking about a plan of consults and treatments. I know that Tim’s will include a new local neurologist on 5/9 and a rheumatomogist on 5/10 at Connecticut Children’s Medical Center in Hartford. We’ve also been exploring the possibility of the Mayo Clinic, but aren’t yet sure what will happen with that.
In other logistics, Tim finally (weeks later!) has tutors for all his school subjects. The tutor he’s had, Ms. J, has been great but not confident in helping him with calculus and physics (she’s a social studies teacher). The school district finally simply hired his own calculus and physics teachers. The next hurdle is discerning when and whether he can/should return to the classroom setting.
And today’s the day Tom catches up to me chronologically (sort of), so we’ll be squeezing in some sort of dinner and cake between Tim’s math tutor and the doctor’s visit. The kids already have gifts for him, and I haven’t gotten shopping yet. Hopefully this weekend… we’ll see how it goes (that’s my new answer for everything).
Keep praying for a breakthrough for Tim, for our family. Pray also that we’ll keep remembering that God’s grace is always suffcient, that even though these days are incredibly difficult, we aren’t lacking anything. It’s where life and grace really intersect, isn’t it?