Monday, August 31, 2009

Virginia Beach Camping

Over the weekend we went on a short camping trip with some friends. I was looking forward to it so much because we'd been trying to make it to the beach all summer, and for various reasons it never worked out! We were going to go in July when my mother was here, and she was going to stay at home and look after Brogan (who had just been completely weaned especially!!) so that we could just take Avery and have a special time with her, but then she got sick again and we had to take her back up to UVa and cancel our camping reservations. So we were really looking forward to this trip! Especially me!!
We got up there on Friday afternoon and got home early Sunday evening, so it was just s short trip, but was fun nonetheless! I kept on forgetting to take the camera with us, and our camera has got to the point where it's just eating up batteries and half the time it won't even turn on, which is very sad, but here are some of the pictures we did manage to get.

We discovered that Brogan is a big fan of apples! He is so unlike his sister in so many ways....! Avery still doesn't like eating raw apples.

Our camp site. It was actually quite nice, and the bathroom facilities weren't all that bad in comparison with other camp sites we've stayed at. Ours is that big green and gray tent. It was too hot during the day for Brogan to nap inside the tent, which is why the pack and play is outside...although he didn't nap there either! He napped in the air-conditioned minivan :) After having lived with central air for 3 months, we are officially spoilt and wouldn't want to go back!! Before we had AC, it used to be refreshing to camp in the summer because it was so much cooler to sleep outside, but now it's just sticky and humid and warm! So spoilt....

The tarp and the supply tent. Yet more evidence of the differences between our two children: the tarp was for them to play on so that they didn't have to get all dirty on the ground. Avery happily sat and played, and if she wanted to get up, she would wait for her shoes and braces and walker, or would request to be picked up, but Brogan...

...the tarp was obviously too tiny for his needs, and upon being placed there, immediately had to plot his escape. Pine cones and dirt and prickly vines and fire pits are much better toys than any we provided and had to be explored....
...which is why his hands and feet looked like this during the entire trip...
...even within five minutes of being washed and/or showered.
What a boy!

Our last day there we finally remembered to take our camera to the beach! Well, not really, I made Gabe go back to the van and get it after we already got down there...! But how could we miss the chance to catch this on camera?
Two days and nights of camping had taken its toll on this little boy! In the 3 minute drive from the camp site to the beach he fell asleep, and even when Gabe picked him up and jostled him about a bit, he still was too exhausted to care, so when we got down to the beach Gabe put him down on this towel and there he stayed, fast asleep, for almost an hour!

Meanwhile, we kept a careful eye on him while we played in the ocean. We went to two different beaches while we were there, and this one was very calm (although it had a lovely view of big tankers and barges coming into Chesapeake bay and a big bridge halfway across the horizon), so Avery and Brogan really enjoyed being in the water with us. The other beach was a lot of fun too, because it was a bit rougher which made body boarding a lot more fun, but the little ones didn't really want to go in, and preferred playing on the sand by the water's edge, "popping bubbles" and digging holes.
Gabe's attempt to get himself in the picture with us :)

And Brogan slept on while Avery played with her Daddy...

After Brogan woke up, he had a great time being buried alive by Gabe...!

Avery thought it was pretty funny, but certainly didn't want to be buried herself!!

All in all, it was a very fun little trip, although I do look forward to taking trips like that when our children are a little older. The second night there was a family camping on the site next to ours - their youngest was probably about Avery's age, and while I was trying to get Brogan down to sleep, I was listening to them all sitting around the camp fire playing some sort of silly questions game, and it was just really cute, and made me look forward to being able to do the same thing. Of course, Avery is old enough now that it really isn't a problem if she goes to bed late every now and then, and she doesn't nap anymore, so that was fun, but of course Brogan is still young enough that he doesn't cope well if he doesn't get to bed by 7 or 8pm, and he can't go without his naps either. So the first night we were there Gabe and Avery went off with everyone else while I tried to get Brogan to sleep in the too-hot tent, and the second night, Gabe went down to the beach and did some night swimming while I helped Avery go to sleep and dealt with Brogan who had woken up and didn't want to go back to sleep. And then both nights I sat around by myself in the dark for a couple of hours reading a book with a flashlight, which is pleasant enough, but isn't exactly swimming in the ocean by moonlight. Ah well, one day we will all be able to enjoy that together as a family.

Tuesday, August 25, 2009

Busy week

I think that I've been avoiding my blog because I'm intimidated by how much catching up I have to do, so I'm just going to skip the catch up for now and just start blogging again. We have had a pretty crazy busy summer, the time has gone by so quickly, and here we are about to send Avery back to preschool for her second year! I've been thinking that I really should try to space Avery's doctor's appointments out a little better, because it seems like every 3 months they all come at once, which is just silly. We're in the middle of that right now - on Friday we saw her physiatrist in the morning and neurodevelopmentalist in the afternoon, and then on Monday we went to her regular PT session in the morning and then to a speech evaluation in the afternoon, and then today we went to see her ophthalmologist this morning and this afternoon Brogan has his 1 year check up! And of course, I managed to schedule all of these appointments for when Gabe is in the middle of his 16 hour work shifts, which makes it super fun. Yep. Although Friday was actually quite a nice day in a lot of ways, because Gabe took the day off since the morning appointment was an hour away and Brogan is still too young to go an entire day without a single nap. So Avery and I got to spend a whole day together all by ourselves, which hasn't happened for a while, so it was fun! In between her appointments we went to the pharmacy to pick up her valium prescription (which we're trying to do again - hopefully this time we might have some success...! 4th time's a charm right...?)and then we went to Ukrops just for fun because we haven't been there since we moved and for some reason Avery adores that place!! So she had an absolute blast running around, and then we got lunch from the salad bar and ate it upstairs by the window, and Avery was a happy girl! Then we went to the mall to walk around, but by that point she was getting quite exhausted, so I ended up having to carry her and her walker around, so then I got quite exhausted too! So after the second appointment in the afternoon (which actually wasn't appointment - I apparently put 21st instead of the 31st into my calendar - but the doctor was super nice and came out to the waiting room to see us for a couple of minutes anyway, and arranged the speech evaluation and stuff, so it was still a productive visit!) we were both very happy to get home!! And Gabe got to spend a whole day at home with Brogan, which was good.
So now the reason that Avery had a speech evaluation yesterday afternoon is actually because when I was talking to the neurodevelopmentalist (Dr Kerkering) on Friday afternoon, she was watching Avery while she was playing with the toys in the waiting room, and asked about her arm flapping. I'm not sure whether I've written about Avery's arm flapping before. Actually...I'm thinking that I should write a separate post about this because otherwise this will be a monster post. So more about the arm flapping next week...
This morning we saw Dr Facciani, who we like but who seems to be the only pediatric ophthalmologist in the entire Roanoke Valley, and as a result is entirely over-booked and the waiting times are beyond ridiculous. The past two appointments we've had I've had to give up on and reschedule after almost two hours of waiting to be seen. Perhaps surprisingly, I actually sometimes have things I need to do with my time other than sit in a waiting room for hours on end. I don't think it's unreasonable to expect that we can have an eye appointment in the morning and still be able to make another appointment in the afternoon. Anyway, I think this morning that they realised that I've had to reschedule the last two appointments because they've been so slow, so they got us through to the exam room in record time - about 20 minutes! Our appointment was at 8:45, and we were out of there by 10:30!! Amazing! :P But we got a prescription for glasses today, and I'm not convinced that it's the best thing. We are also going to start patching again - aiming for 4 hours a day. Poor Avery. I would go crazy having to wear that eye patch all the time.
Goodness, this post really should be divided up into 3 or 4 separate posts since it's about 4 different specialist appointments. So I will just write about the ophthalmology thing right now and write more posts later for physiatry, neurodevelopment, the speech evaluation and Brogan's 1 year check up!
Avery's eyes.

Avery has what is thought to be 6th nerve palsy, which makes her left eye turn in, especially when she's tired. As a result of this, it is probable that she will have very little or no depth perception. From the time she was about...I don't know...10 months old or so, until April of this year, we did pretty intensive patching of her right eye to strengthen her left eye. She was wearing the patch for an average of about 4 hours a day 5 days a week. (It changed after every ophthalmologist appointment - sometimes he wanted us to do as little as about 3 hours a day 4 days a week, and sometimes as much as 6 hours a day, 7 days a week) In April it was decided that she should stop patching because she was keeping her left eye straight much more and appeared to be using both eyes quite well, and he didn't want to over-do the patching and actually create a preference for her left eye over her right! So we haven't patched since then. Now he wants us to start patching again for 4 hours a day, 7 days a week. Hopefully it won't be hard for her to start again now that she's not used to wearing it anymore. Surgery has always been a likely future event, but he hasn't wanted to do it until it has plateaued. Back when she was first being seen for this problem, he thought it was Duane's syndrome, and she was scheduled to have surgery but my gut just kept telling me something was wrong, so we got a second opinion and avoided that surgery since it would not have helped and it was not Duane's syndrome. She also seems to be a little bit farsighted, although he's always said that it's so mild that she doesn't need glasses for it. The other thing is that her optic nerve is apparently a bit pale, which can also cause some vision problems.
Of course, with all of this it's always been quite possible that Avery could need to wear glasses at some point, which is fine. But here's the thing. At Avery's appointment today Dr Facciani tested her vision (obviously!) and says that her overall vision seems to be at about 20/60, although of course it is better in her right eye than her left. He said that at that level it's mild, and that sometimes he does and sometimes he doesn't prescribe glasses for that degree of vision impairment. He also said that the glasses wouldn't have a huge beneficial impact, but when I asked him how often he wanted her to be wearing them, he said that he would like for her to build up to wearing them pretty much all the time. I questioned that since he had just told me that she was really only on the border of needing them, and that they wouldn't make a huge difference, and if that's the case it really doesn't make sense to me that she should be wearing glasses all the time. I asked whether that could cause dependency on glasses, and he told me that he wouldn't worry about that, but it seems to me that I've heard that once you start wearing glasses your eyes get used to them and and then you need them even if you didn't really need them before. If Avery needs to wear glasses then of course we will get her glasses and she will wear them, but I don't understand why he wants her to wear them all the time when shedoesn't need to wear them all the time. If we patch her right eye to help her left eye work harder and get used to being used properly, isn't that the same principle, and doesn't that then conversely mean that if we give her glasses when they're not an absolute necessity that her eyes will get used to them and then will have a harder time seeing properly if she stops wearing them?
I mean, I know I haven't spent years studying to be an ophthalmologist or anything, but that is just what makes sense to my brain, and I don't understand the logic behind this theory that she should start wearing glasses full time.

Sunday, August 02, 2009

A warning... :)

So, maybe you've noticed that I haven't exactly been an active blogger this is just a warning that I am going to be in catch up mode for a little while! It is now August, but I've got June and July to catch up on, so I will be working on that!