Tuesday 17 May 2016

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.  

Monday 16 May 2016

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!