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.


Anonymous said...

Thanks for the update, sure was a busy week!

I look forward to your post about Avery's arm flapping as Violet does the same but only 1 arm (her non CP side)

Hans said...

Thanks for the update. I've heard two theories on the eye glasses. One is that if the eye is bad enough, the stress and strain of looking and not seeing makes the eye worse. The other is that which you said. Wearing glasses makes the eye cease to try and focus and your hurt, not help the natural correction the eye tries to do. Give everyone a hug for us.

Pam said...

It all sounds pretty exhausting! I can only comment on the patching of Avery's eyes as two of mine had to have patching.
Philippe and Jenni had lazy left eye and had to have patches and the times varied etc , just like with Avery. They both wore glasses. Sometimes the patch was over the eye and sometimes over the glasses. Jenni had two operations to correct the eye and wore glasses into her teens but not since then. Although I think she is now, at 46 years of age , wearing them for close work.Philippe never had an operation as apparently his eye sight was very , very , long distance and an operation wouldn't help. He has always worn glasses. I've sent your blog to him asking for his comment. Don't hold your breath as he rarely keeps in touch. I last heard from him over a year ago!! But he should be able to shed some light on it as he would have taken a particular interest given he suffered the same as a child.
I seemed to be for ever going to the hospital with Philippe and Jenni over their eye sight,and other ailments with the other three from time to time., so I have an inkling to your frustrations of time spent forever in waiting rooms.I've spent literally hours waiting in hospitals for appointments, trying to keep everyone happy! It may well be worth spreading them out as Avery needs to see so many different people and it is exhausting for both of you.
Well done for all the hard work this is entailing.You are doing an amazing job. Avery and Brogan seem to be happy children and this is down to you.
Love Granny

Alex said...

There are two patient girls in your house! I'm glad that you and Avery got to have a fun day amidst so many appointments. Ukrop's, mmmm, I've been thinking about heading there too.

overseas grandma said...

I'm in a horrid rush but have one or two thoughts - I definitely think that wearing glasses makes the eye muscles lazy, they adjust to the adjustment the glasses make and therefore the vision becomes permanently impaired - I am certain this happened to me. I'm also wondering if you need a second opinion although I know this means yet more travelling out of the valley.
I was so impressed that you were able to have the speech evaluation test so quickly and will look forward to hearing about the results of that.
I'm sure with your sooper-dooper palm pilot you will find a way to mark in Gabe's working times with Avery's appointments. You are so good and so patient and so optimistic in spite of these extra activities with Avery and her health - mothers of healthy/normal/ordinary children have a hard enough time keeping up with it all, you are SUPERwoman.
I love you more than you know - except, now you're a mother you have more idea.