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Wednesday, March 27, 2013

1 out of 454 ain't bad

{I can't believe I just used the word "ain't". Or that I referenced a song by someone called Meatloaf. }

 So yesterday we showed up to Raya's neuro appointment thinking we were 10 minutes early and found out we were actually 20 minutes late. Bummer. I've NEVER been that late to an appointment!! Even the time that they rescheduled a swallow study and moved it up by half an hour without telling me, I was only 15 minutes late. If it had been the pediatrician's office (or any other office, really) we probably could have still been seen but this is one office that actually makes a really good effort to stay on schedule so they couldn't fit us in. I was SOOO mad that I had screwed up and missed the appointment. Then I went home and counted how many appointments she's had since January 2010 when all the craziness started and suddenly I felt better. Out of approximately 454 medical appointments of one kind or another, I have missed ONE. I'd say that's pretty friggin' good. Fortunately they were able to schedule us for this afternoon at 3:30 and it was once again a very productive appointment.

I hadn't heard anything about the MRI that she had in January, so I assumed that meant it was normal or she would have called me. I was right, it was normal. I was actually disappointed. I know that probably sounds awful and I certainly don't wish a brain abnormality on my child, but having something funky pop up on the MRI would have given us something to back up her diagnosis of cerebral palsy. Oh well, I guess we'll be sticking with a strictly clinical diagnosis. That was the disappointing part. (but yes, I'm glad there's nothing wrong with her brain)

Moving on. She asked me how the medication is working out that she prescribed to help Raya with her sleep difficulties. Oh my goodness, that med is the BEST thing that has happened to us in a long time. Our last appointment (the day she prescribed it) was my birthday and I told her it was the best birthday present ever. I have had many moments of guilt over the fact that we are using a medication to help her sleep and have hesitated to even mention it, but she has gotten so much more sleep since we started using it, and it helps her to be more calm and focused during the day. As difficult a time as she's had with sleeping in the last month since she's been sick, I can't even imagine how awful it would have been if we didn't have this medication to help her go to sleep. Lack of sleep carries over into so many other things, and sleep is so important, especially to someone who is sick & needs that time for the body to heal. She was very happy to hear that it's helping and reminded me how important it is for Raya to be getting enough sleep.

I started getting reminder phone calls (and text messages and emails...) 10 days ago for this appointment (seriously, 10 days?? I can't even remember what I ate for breakfast this morning. I want the 2 day reminders back). When I remembered that we had the appointment coming up, I was really glad. She's had some quirky little things going on lately. Most of them involve sweating but she kind of freaked me out a couple times in the past week or two with some breath holding (related to reflux) and being completely pale & cold and clammy to the touch while she was asleep. We talked about all of it and other related things we've seen in the past and decided to look into autonomic dysfunction (aka dysautonomia). There are several different types of dysautonomia and it can come in varying degrees, and I'll explain more about it if we decide that's what's causing her quirks. :) While we were talking about the sweating issues, she looked back through Raya's 3+ years of lab work and realized that although thyroid function labs had been ordered 3 years ago this month, the labs had never actually been done. We have NEVER DONE THYROID LABS. Both of us just sat there in shock for a little bit. I'm not sure that thyroid labs will show us anything new, but it's hard to believe that something so routine has been overlooked for 3 years. She ordered the TSH & thyroid panel (FYI, TSH is thyroid stimulating hormone, and it stimulates the thyroid to produce thyroid hormone & calcitonin. In case you were wondering.) She also ordered a funky lab to try and look into the dysautonomia. When she was telling me about that lab, she said something to the effect of, "They're going to see this and wonder why I'm ordering this crazy lab c/o Mayo Clinic. It's because I think outside the box!" I told her that's one of the reasons why we love her. :) There are several, but one of them is the fact that she will tell me about something, give me websites to look at, tell me to read up on whatever the thing is, and then next time we see her, she asks me what I think about it. She listens to me and actually WANTS to hear what I think. She is fabulous.

We'll have to wait a week or so for the thyroid labs but the others will take about a month. Good thing I'm used to waiting. Honestly I'll be surprised if it shows anything. I've become very good at expecting normal test results and not getting my hopes up that a test is going to give us helpful information. Cynical, perhaps, but also a necessary survival skill when you're the parent of an undiagnosed kid. Her doctor is going to be out for a month so we'll see her again in July but probably will talk to her before then about the results of the dysautonomia lab.

This evening, I threw some quick dinner at the kids (figuratively speaking) and then left for the evening to go have a little girls' night with two of my dear friends. They were some of the first "tubie mommas" that I met in person and our girls are fairly close in age. We had planned on doing another photo session with them like we did a year ago while Alicia's family is in town for spring break but sweet Miss Lily is in the hospital again so we couldn't make it happen and opted for a girls' night out instead. They are so much fun to talk to and have saved my sanity since I met them. I wish we could see each other more often. I've met so many amazing moms and I wish it wasn't so difficult to get together with everybody!

And of course I jinxed myself and while I was typing the part about how much better Raya's sleeping with the medicine, she woke up screaming. Now she's nodding off on my lap. It's been a long day but a good one.

PS I mentioned that our friend Lily is in the hospital again. Her parents found out this evening (right before our GNO) that she will be having a surprise surgery tomorrow to place a new central line. With her mitochondrial disease, anesthesia is always scary. If you are the praying type, please add a little prayer for Lily and her parents. ♥


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