Now that I have decided to be brave and share this blog with others, I thought I would put Brian's medical updates on here rather than sending lengthy emails about how he's doing. That way if you want to know, you can check here to find out, and if you don't want to know all details, you don't have to!
On Tuesday Mom and I took Brian to The Brace Shop near Christ Hospital for his helmet fitting. This involved some pretty fancy 3-D imagining with lasers! I wished Shawn could have been there to see the technology. Anyway, it helped to go to the shop for lots of reasons. First, there were pictures all over of other kids in their helmets. I've seen kids in them before, but it helped to see a whole bunch in one place. This was also helpful because it gave me ideas in terms of what color to get, or which pattern. There were several patterns to choose from, but I noticed the cutest helmets (if you can call them cute) were the solid colored ones that the parents had decorated. So, we went with blue and we have plans to deck it out with stickers. This will be nice because we will be able to change it up whenever we want. Remind me I said this when I am complaining about having to change out the stickers because they got yucky in a month or two!
Going to the shop was also helpful because in seeing the 3-D imagining, it was made clear to me that his head is quite misshapen and we are doing the right thing. To quote Mom, "we don't see past his big blue eyes and million dollar smile." This couldn't be more true. When viewing the 3-D image it was quite obvious that his head is off by quite a bit and needs to be fixed. Just because I don't notice it on a daily basis, doesn't mean that the mean kids when he gets to junior high won't! Why give kids more reasons to make fun?
Finally, it was helpful to go to the shop because I got to actually hold one of the helmets and ask all of my questions of the nice man who measured Brian. The helmet is actually pretty light, he will have to wear it 23 hours a day, it does have to come off for 1 hour daily, some babies have a harder time sleeping with it on (GREAT JUST WHAT WE NEED) and yes, he may loose some hair, but hair grows back. The only permanent change will be that his head will be (and stay) rounder when this is all over with!
Onto the ENT appointment, which was REALLY early this morning. Side note: Brian and I enjoyed a 2 hour nap after the appointment :) Anyway, the ENT said things look good. His loss has not worsened, he's had no infections and the fluid that was in his ears at the last ABR test is no longer there. Basically, it looks good that his loss has stayed the same all these months. Generally it gets worse in most cases. So, we will continue along this same past. We have another hearing test at 9 months and another ENT appointment following this. They just want to monitor his hearing to see how things progress.
So all in all, good news. It's often overwhelming and hard for me to believe that we are having to do all of these interventions, but I know I should be thankful that the interventions exist and that Brian is generally happy and healthy. I keep saying to anyone who will listen; I honestly don't know how I would have worked and kept up with all of these appointments. Kudos to all of the working mom's I know and love!
In case you are wondering, the next appointment is MONDAY for PT. Again it's very early in the morning, but it's best to have early appointments at Children's because otherwise you wait forever. Tuesay is his 2nd flu shot (they get two at this age) and Wednesday we go to pick up the helmet. Always something :)
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1 comment:
Renie said she has some stickers for you!
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