(Note: there are photos of her eyes post-surgery farther down. It's not, like, THAT gruesome, but just to put it out there.)
Bug finished preschool. Which feels weird. Part of me feels like she should be in third grade already, and part of me feels like she... should be in third grade.
Mimi came to visit us.
Hmm, what else? We bought a VW Eurovan, and sold our Passat wagon (in that order, but somehow lucked out and sold the wagon on the same day that we brought home the van). I started a new blog for the van, and it can be found here: http://tutuvw.blogspot.com
Unbelievably frustrated with our last neuro appointment, I made an appointment with one of Bug's previous pediatricians to try and get another point of view. This guy is a pretty well-known developmental pediatrician and works with the most medically-fragile and complex kids in San Diego. He's amazing, kind, thoughtful, intelligent. We left the practice a few years ago because I was getting so frustrated with the wait times for regular ol' sick kid visits. We'd see a different doctor every time we went, and sometimes could not get same-day appointments. So while I also love our current pediatrician ... they're just not the same kind of thinkers as he is. Two different people for two different needs, I guess.
ANYway. While we were there, he had some thoughts about her fatigue and floated out some things to consider, mainly around a possible congenital myopathy. To translate (I guess) it would be that something is not right with her muscles. It's a really really general term, and encompasses a vast number of disorders, and can relate to either the engine (the muscles themselves) or the gas that goes into them (the mitochondria that supply the energy to the muscles). The results of our big genetic test came back negative, which is great... and while it does test for the majority of mitochondrial issues, does not cover ALL of them (there is no one comprehensive test, as some disorders can be recognized by genetic test, some by blood test, and some by muscle biopsy only).
I am not looking for a magic solution or cure or medication. What I am looking for is an ANSWER so that I can STOP LOOKING. I expend a lot of conscious and subconscious energy thinking and looking and worrying about what we're missing. It would be nice to be able to stop. ("Yeah, it would be, wouldn't it" -- the bajillion people who have kids with mystery diagnoses).
And since you may be wondering, what he was considering for her really has no cure. It's more of something that you just manage (like we have been) with lots of therapies. I think the worst part of the whole visit was our discussion about how she gets around. I mentioned that she cannot get through a trip to the grocery store without needing a ride or a rest. He asked what I did, and I said we usually just always have to find carts, or make it a super short visit, or take a stroller. I still take a stroller everywhere. He asked what I was going to do when she outgrew the stroller and I said I just hadn't really thought about it, and he brought up a few wheelchair company names. I mean, it's a possibility. It feels like a punch in the gut, but so far my wishing and hoping and denial about how she's going to grow out of all of this hasn't really made much of a difference... so if we are still having difficulties in another few years then yes, we may have to look into another way to help her get around. Up until now our concern about her getting around as a young adult and beyond was centered on questions about if she would be able to get a driver's license -- it never occurred to me that in addition to not having a driver's license she may also not be able to walk places. FUUUUUUUUUUCK.
Time. We have time. She's only 5. Think of the stupor I could drink myself into by the time she's 16! I kid, I kid.
So he sent a note to neuro, admitting that doctors can sometimes be a bit on the egotistical side (most of the time warranted, as most that we have encountered are very, very smart people), hoping that a note from him might get the gears going again.
Fast forward a few weeks and we went back to neuro for our last visit before the move. She was still a bit of a brick wall about it all, but was a bit friendlier ("friendlier") than during our last visits and conversations. She did not advise a muscle biopsy at this time (which I think I'm OK with for now, because those are really brutal, even on an adult) but agreed to order an EMG (electromyography test -- it measures how electrical impulses travel through your muscles) and some other blood work. We have appointments scheduled in Minneapolis in mid-August at Gillette and Minneapolis Children's with another neurologist and her geneticist again, and are also making appointments at John's Hopkins since we will be relatively ("relatively") close once we move, and they have an entire movement disorder center. So the saga continues!
Speaking of sagas, her eyes are continuing to heal. I still see redness on the sides that I do not remember seeing the first time around a month post-op, but it could be just the positioning of the incisions. We go back again in a few weeks for another visit.
Are you curious about what they look like? I'd be happy to show you. I've taken photos of her eyes every day since surgery, which will be four weeks ago tomorrow. They will be below these next two photos.
First, though, I'll remind you what they looked like before she had the surgery. I took these photos a week or so before.
Both eyes turned inward, but her right eye had more of a turn. Keep in mind her glasses had prisms ground in, and additional Fresnel prisms (the stickers) on top in an attempt to align her eyes. My point is that they would turn even with all of this correction, and for F's sake, we were not living with the stickers forever. You felt like you couldn't see her eyes clearly (because you couldn't) and the prism correction in the lenses themselves made her face look different (you can see below on the outside of her left eye, how you can see the outside of her face from within the lens).
She couldn't make eye contact with you with both eyes at the same time:
Below is a photo of her the day of her surgery, after we got home. By some sort of magic stroke of, well, magic, she agreed to open her eyes that same day.
A few hours after surgery.
Her right eye looks like it's gone the opposite direction on purpose. They tightened those muscles, and in time they will relax and it will be in a more optimal position. As the doctor said, you don't ever want everything to look perfect immediately afterward, because then you didn't do a good job.
The following day she got really swollen and wouldn't open anything. The left eye would squint open so she could see around, but she wasn't going to budge the right one.
Day two post-surgery we finally got her to open both eyes for a short time. We were amazed and so so SO thankful that she didn't hold out for five days like last time.
Day 2
Day 3
Day 4
Also from Day 4. You don't realize how much having your child make full eye contact with you matters until they can't, and then they can.
We sent her back to school on day 5. We convinced her to wear her sunglasses all day while at school so she wouldn't spook any of the other kids with her red eyes. For someone who loves to look at themselves in the mirror every hot second she gets, she actually didn't look at herself until around this time. We did not deter her from looking or make any sort of fuss about it, she just naturally avoided it. When she did, she just commented that her eyes were red, and we sort of downplayed it to make it a non-issue. I was just so nervous of how she would react if anyone acted scared of her. Luckily no one did.
Day 5. This is the day she went back to school.
Day 6
Day 6. This was the first day she felt comfortable looking side to side.
Day 6
Day 7
Day 8
Day 8
Day 8
Day 8
Day 9
Day 9
Day 9
Day 9. For a few weeks, her favorite part was getting to make faces at the camera after the "real pictures" were done.
Day 10
Day 10
Day 10
Day 10. I can't describe to you how different she looks to us. My mom doesn't really understand or think that she looks different, but to Matthew and myself, she's a different kid. Our third version ;)
Day 11
Day 11
Day 11
Now that I have bored you with 20 more pictures than you wanted to see, I will skip ahead to day 26, which was yesterday.
Day 26. You'd think after this many days she would be able to look straight at the lens. You'd think.
Day 26
Day 26
There's a little redness still on the sides, but in general the speed of healing is again just unbelievable.
Are you even still here? I wouldn't blame you if you got bored, or didn't have an hour to devote to this.
But if you are, here are a few more pictures from this weekend, because if I don't post them now, I will never do it.
We had a birthday party this weekend, and got to play with the same friends again last night. At the birthday, Bug had her first experience with "pin the tail on the donkey." I was concerned about how she was going to handle the blindfolding, but she went for it. We are getting much more brave about things that scare us initially.
The birthday party was for a little girl that Bug has been friends with since just after we moved here. Here they are at E's 3rd birthday party:
And then last night playing again. It's not that I can't believe how big they are now (both are now 5), it's that I can't believe they were that little then.
Then she fell in some dog poop and freaked out and we took a shower at our friend's house and I looked smart because I had clean clothes in the car when really the only reason I had clean clothes in the car was because I was too lazy to take out the bag I packed this weekend when we were maybe going to go swimming and never made it... the moral of this story is that you never really outgrow the need to have a clean change of clothes in the car.
And then when we got home from the party the dog had attacked the recycling (he has a thing for canned beans??) and peed all over some newspaper.
WHEW.
And THAT, ladies in gentlemen, is how you use a nap time.
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