Belinda’s next procedure is set for December 17 in DC. I really wanted Belinda to go in September so we could be at the Pediatric Achalasia Awareness Night, but Belinda was adamant that she did not want to miss a single second of her first semester at Northwestern. The couldn’t do fall break or Thanksgiving break, so we set it for Christmas break.
Since Belinda is on Soonercare, she has to get special authorization to travel out of state for her procedure. On paper the procedure is something that can be here in Oklahoma – but we and the doctors believe she needs to have it with the specialists who have been treating her. The other thing is that these specialists are the only pediatric surgeons doing POEM, but she will be 18 in December, and although she’ll still be on Soonercare, I don’t know if they will take the pediatric part into consideration since she’ll be an adult. I wish we could just do the procedure in August before her birthday and get it over with! Anyway, a lady at the hospital will be working with Soonercare and Belinda’s doctor to get it approved. That’s another thing – Belinda will no longer be with the pediatrician that’s treated her since birth by the time the procedure comes around. But she will be with my doctor, and she is wonderful so I believe it will all be fine.
Anyway, even if it doesn’t happen, I still believe God is in control. And maybe Ben will have a job with benefits then and it will all be different anyway. There’s no point in worrying, even if my mind does think about these things.
I do need to focus on what I can work on, like figuring out if we can get assistance again from NORD for lodging and travel in DC. We may have to work on something new since her grant is for pediatric gi rare diseases, and she won’t be pediatric anymore. Hopefully it will just count through the rest of the year. We also need to contact Mercy Medical Angels. Again, since she will be an adult now, they might not be able to help with both of our flights. But we’ll cross that bridge when we get there.
In other news, the durable medical equipment company called we discussed Belinda’s adjustable bed. They asked if they could bring it Thursday, but I reminded them it was for her dorm room. Next week the college will start assigning rooms, and when we know the room, we will see when we can meet in Alva and get the bed set up. They said the mattress wasn’t very comfortable, but I think we’ll just have to see what it is like and then get something different if we need to. Probably we could try to get a better mattress or topper through Soonercare because of the Ehlers-Danlos…but if we can swing it on our own, I’m just going to do it that way. Less stress for Belinda.
Financially we had a bit of a setback because our propane tank had a leak and we lost about 500 dollars worth of propane over the course of two weeks. We didn’t realize until we ran out. Right now we don’t have hot water but it’s not the end of the world. Ben is planning to fix the pipe. But we also owe around 800 to the propane company and it has to be paid before we can get more. So I called the propane company to ask if we could do some sort of payment plan and get a small amount of propane in the meantime, after the pipe is fixed, and they said that would be fine. I was very thankful. We have done business with them for almost 30 years and it is so wonderful when you have that kind of relationship. We got off the phone and I was thinking about that, and then they called back and said they’d discussed it and they were going to pay for half of what was lost – taking about $250 from our bill! I didn’t even know what to say – I was so tongue tied as I was thanking them! What a kindness!
God is with us, every day. I am thankful.
Also, here’s a weird picture Belinda let me take at the Ripley’s Believe it or Not Museum in Gatlinburg, Tennessee, when we were there for her dance nationals two weeks ago. I actually meant to post an album on facebook, I guess I should get on that soon. If you want to see a bit of what Belinda’s other rare disease, Ehlers-Danlos Syndrome, looks like…this is part of it. At least she can’t make her eye pop out like the museum pic guy.
