Words escape me to describe how this week has been. The usual choices of "insanely busy" and "exhausting" and whatever else I would normally say just don't do it justice. I won't even try to explain it all but there are some important highlights.
1. We saw our former neurologist, who left the hospital-affiliated practice a couple years ago. I decided it was time to follow her, because I like the way she thinks, and I like the approach she takes with kids like Raya. The results of that appointment are that we are finally having the sleep study done that the hospital neuro clinic was supposed to have done a year ago and never called me back to schedule, even after I left multiple messages. We are also having a huge list of labs done to check things we haven't looked at in a couple years, and several things we've never looked at at all. We also have a referral to a naturopath in the area who may be able to help us look at things in a different way. We will be following up with neuro in 2 months, and hopefully by then I will have actually found time to take Raya to the lab to do the blood draw.
2. The most recent genetic test results came in. Not because the genetics office is on top of things, but because I knew the results should have been ready by now so I started calling them until they acquired a copy from the lab. (These tests were some that were ordered when Raya was a baby, and I only found out in February of this year that they were never actually done back then when they were originally ordered.) The genetics counselor called me back Tuesday to tell me that they had gotten a copy of the results and that it looks like there are some things there that may explain some of Raya's symptoms. Then of course, he followed that with, "But I can't give you any specifics until the doctor is able to review the results. We'll call you back when he has gone over them." And now it's Saturday, and I didn't hear anything back. But don't worry, Mr. Genetic Counselor and Geneticist, it's not like I get butterflies in my stomach when I think about the possibility that after 5 1/2 years, we might actually have a name for whatever underlying diagnosis has eluded us thus far. So yeah, just leave me hanging for however long it tickles your fancy. I don't mind.
3. We had a consultation with the orthotic specialist this week. It probably should have happened a couple years ago but it was one of those things that took a back burner to the digestive stuff and unless you know what you're looking for, most people wouldn't recognize the problems with her gait. The orthotist confirmed that I'm not imagining things that aren't there and that she does need orthotics and physical therapy for her gait. Pending insurance approval, we'll be able to pick up her orthotics and then she can start learning to walk in them. She has made incredible progress in regards to her cerebral palsy, but there are still things that we need to work on correcting in order to prevent long term dysfunction. Orthotics and PT will help.
There were more mundane things like our garage freezer thawing out overnight, forcing me to clean it and bake 6 dozen rolls yesterday so I didn't have to throw away the thawed out dough. And Donny's car getting backed into by one of his friends. And the child who woke me up puking her guts out in the bathroom at 4 this morning. And holy hanna has it been hot this week! When I was picking Raya up from school on Wednesday at 9:40 in the morning, it was already 109 degrees. When I picked Ashtyn up from school at 4:00, it was 116. Oh, and we were asked to speak in church tomorrow and I've been so busy all week that I haven't written my talk yet, and I'm so tired now that I can't stay awake, let alone form enough coherent sentences to write something worthy of sharing over the pulpit. I hope a lot of people are out of town or sleep past their alarms. I had a dream a couple nights ago that I was sitting in church and realized I had forgotten to write my talk so I had to wing it. It was an unpleasant dream.
Aaaaanywhoo, we have had a difficult, exhausting, trying, emotionally charged, busy busy busy week but I have felt over and over again that God is making me equal to my tasks and we will survive. We have had the pleasure of a couple nice thunderstorms this week, which I always feel are a gift from God in the form of a break from the REALLY hot weather.
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