Well, I'm having a hard time getting this blog started today. It's been a good and bad kind of day. I feel like I have nothing to say and also want to just type and type and type, let it all loose. Guess none of this makes any sense, so let's just start with the facts.
So far it has been a very good week. It has been our favorite word, UNEVENTFUL! All that craziness with Colby's high heart rate and the choking/plugging episodes seem to be long behind us, for now anyways. He went to school Monday and Tuesday with no problems. Yesterday we had his IEP meeting and get this, even Colby's dad went! Yep, you read my words. I asked him if he wanted to go and he said yeah. Then I thought oh crap, do I really even want him to go?! Never know what's going to fly out of his mouth. But it was fine. I guess I just wanted him to get a better feel of the things that have to be done for Colby besides taking care of his day-to-day medical stuff. The main goal for Colby's IEP is to use his eye gaze more while at school. I'm hoping the more he uses it, the more importance he will put in it, therefore using it more as his "voice". Colby's speech therapist, Amber, deserves a big, fat THANK YOU VERY MUCH. First for seeing that Colby is smart enough to use an eye gaze communication system, and second for her learning to work it and program what Colby needs on it. She has pretty darn high expectations for Colby and expects him to work hard while in school. Sometimes I don't think he really knows how to take that, but I love it.
Dad and I took Colby to his eye dr appointment today. Luckily Cincy Children's has some offices in northern Kentucky, too. That cuts about 16 to 18 miles off our trip, one way, which is super duper. His vision prescription has changed a little. The ophthalmologist had a very interesting suggestion, putting Colby in contacts. When he first said it, I thought he was nuttier than a fruitcake, but in reality it makes good sense. As you know if you wear glasses, you can only see through what's inside the frames. Contacts would help open up Colby's field of vision. I'm just milling the idea around right now, but leaning toward at least trying it. What could it hurt? I think we would know fairly quickly if Colby would tolerate the contacts. And hey, I already have 62 steps in getting Colby up for the day. Might as well make it 63, right?
Trying to schedule surgeries for Colby also. He's going to for sure have the oral surgery to remove the 7 stubborn baby teeth that are still hanging around, literally. Wonder if we could just relocate one of those teeth up to where he lost the one during his last hospital stay? Okay, I don't think it exactly works that way, but it would be nice to have that tooth back in his head. If it's possible to coordinate, he will also have the surgery to correct his ascended testicles. I'm sure Colby is just thrilled I'm sharing his testicles with the whole worldwide web, but hey kid, it is what it is. Your jewels needs to be relocated. However, I don't consider the 2nd surgery a "have to do" kind of thing. So he'll have it only if it can be coordinated with the oral surgery. Trying to get this scheduled for Colby's spring break, which is just a couple weeks away.
I guess I'm feeling a little defeated today. I suppose that's the word I'm looking for. Please don't take this as a pity party, but I'm reminded all too often at just how badly SMA sucks. I shouldn't be complaining, Colby is doing great right now. It's just that with SMA, it's always something. If he's doing okay with respiratory, then something else needs to be addressed. If he's okay physically, then new equipment or supplies need to be ordered, etc. SMA is all encompassing, this affects that, that affects this. I mean really, I should be planning us a fun family vacation for spring break, not surgery for Colby. It's bullshit. Okay, wow, this is starting to sound like a pity party so I'll just stop. I think you get the gist of what I'm trying to say.
The bottom line is, I hate SMA more than you can imagine, but I love my sweet Colby boy so very much. I don't worry about the things he can't do. Instead, I focus on all he has accomplished over the years. He's so freakin' cute and has such a sense of humor. Every day with him is a blessing. And please know I never lose sight of that. Time to get him fed, give him his meds, and then off to bed. School day tomorrow!
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