Farewell to Reducing

M had almost 6 weeks of glorious patching reduction!  They were great.  She still had a patch on from 7:30 am until 3 pm, but not having to wear a patch from 3 pm to 5:30 pm did make a difficult portion of our day a lot easier.

6 or so weeks has passed with this reduction schedule, and she has had her appointment to see if the reduced hours made a difference in her vision.  After 6 weeks of 2 less patching hours a day, she has had a decrease in her vision.  She sees less images now then she did when she had the full time patching hours every day.

We kind of have two choices: keep patching at the reduced hours and be happy with the vision she maintains, or increase patching time and try to get her staying longer at the increased level of vision.  

I think we will make her increase her patching hours again, in hopes of regaining the few images she lost since her last appointment.  I was hoping the vision would have been the same, and we could have further reduced her patching hours.  Instead, I think we'll increase her hours, and keep on going with the original goal: to do everything we can to try and get the best possible vision outcome.   

She has done better than we could have imagined.  We are happy with what vision she has, but now that we know she can get a little more, it's hard to let those few images go.  

Reducing!

M's appointments lately have been testing her vision and getting between 20/25 and 20/30.

I had talked last appointment about beginning to consider reducing patching, in hopes that we could get the hours down before she starts school in September.  So this visit was the last before I hoped they would say it would be ok to reduce the patching hours.

M did so well with her pictures and got her highest number of pictures on the vision chart to date!  I think she did 4 out of the 5 pictures on the 20/25 line!  So they gave her the go ahead to start the slow weaning process.

Up to now she has been wearing a patch for all waking hours except about 2 hours.  Now she can be patch-free for about 4 hours a day!  So she'll put her patch on in the morning, and be able to take it off around 3 in the afternoon, stead of 5:30.  She is so excited for more time during her day without her patch.

At her next appointment, she will have to be able to read the same pictures at about the same level in order to continue at the reduced patching hours.  If she can still read the pictures we reduce the hours even more.  If she has difficulty reading the pictures, it means her vision is regressing without the intense patching, and the patching hours would have to increase.

She has been wearing a patch for most of her waking hours, almost everyday for just about 3.5 years. I can list most of the days she has been without a patch: her birthdays, Christmas Day, and any time she had an eye infection.  It has been an incredibly long journey.  I feel like this appointment was the first time that there is 'an end'.  It's a turning point, something different than the last 3.5 years, a point at which she has been working so hard and it's now that that is paying off.  Now is the time, that we get to change the long hours, and start a another journey that might continue to get a little easier as appointments come and go.  Hopefully!

Getting Close to Reducing...

M's appointments have continued to be every 5-6 weeks.  These images are very much a part of her life!  

Her last 2 appointments she has charted at about 20/25 and 20/30.  She seems to be kind of settling in between these two measurements.  Since she has had 2 or so visits at about the same measurement, she is going to patch for another 5 weeks and then start on a patching reduction schedule.

Currently she still patches all day everyday.  For her that is about 10-11 hours a day.  She's awake about 12 hours a day.  

I was asking about reducing her patching soon, because she is going to be starting school in September.  Ideally, I would love if she didn't have to do any patching at school.  So I'm interested in reducing patching hours, seeing if she can maintain the vision she has, and then get a patching schedule that is compatible with school.  

Realistically, almost everyone in our town knows her, or has at least seen her.  I don't know of anyone else in our area that is patching right now, or at least that we have seen.  Plus, she has fielded questions about her patching from at least 60% of our town by now.  I don't think school would be much of an issue if she did have to do some patching.  I would just rather her not have that be a part of her school day.

Patching seems to be getting more difficult (aka more whining, crying, and fighting), so I'm hoping a reduction will help a bit!  Just another few weeks, and maybe she won't be an everyday all day patcher!