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!

Then to Now!

3 years ago...

M had surgery to remove a cataract from her right eye...

She was 9 months old...

After surgery she was about 20/2200...

Which means she could see at 20 feet from her what we would be able to see at 2200 feet...

Now...

She's 20/25!

And still patching, in the hopes of getting to 20/20!

Three Years Ago...

Then....

About 2 weeks after surgery at age 10 months

Now....

3.5 years old at a regular appointment

What I've learned these last 3 years:

Patching a child is difficult.
Just because I don't want to put a patch on her doesn't mean I won't.
She is more resilient than I would have ever guessed or known.
Brown drugstore patches are the worst - decorative patches are the best!
Just because she wears a patch doesn't mean everyone should feel they have a right to comment about it.
Surgery and patching were right for her.  We know she is lucky to have had surgery with no complications, and contact wear and patching with no 'real' complications.  Even still, it doesn't seem easy!
She has had the best care givers who have been able to care for her and her patching/contact needs.
When the surgeon tells parents that surgery is scary and a lot to think about, but it's after surgery that all the work happens - the surgeon is right.
If M could just magically gain vision without patching in her eye that had the cataract and subsequent surgery, I would choose to not patch her.  Patching really sucks.
Patching just becomes a part of everyday life.

The last three years of relentless patching has resulted in a vision outcome for that eye that was way beyond what we had hoped, expected, and dreamed of.  Going into surgery the surgeon had optimistically suggested that the 'best case scenario' for vision for her in that eye would be 20/50.

After surgery she started at a vision of 20/2200.  What 'we' can see at 2200 feet she would be able to see at 20 feet.

Now she's at 20/40, almost 20/30.  What 'we' can see at 30 feet she would be able to see at 20 feet.

She's passed her 'best case scenario' and she is still patching full-time, everyday all day, in hopes of some more vision changes.  Next appointment is in a few weeks!

We are so proud of her and all her hard work!

Matching Patches

M

Practicing

M has been very involved with her contacts and patching lately.  She is very willing to pick out her patch in the mornings (we ordered a large amount of variety with our last order that she helped me pick out online), and is almost always agreeable to getting her patch put on.

She has been wearing monthly disposable contacts for the last several months (more than 6 now I think).  She is always able to have her old contact when we start using a new monthly contact.  She loves getting to play with the old one!  She gets a contact case, keeps it in water, carries it around, takes it in and out of liquid holding it, and just examines it.  The old contact usually only lasts for one day in M's care, but she enjoys getting to handle it the way she wants to.

The other day she was putting her old contact in her doll's eye.  Handling it just the way we do, and trying to insert it into her doll's eye.

Perhaps a few more months of getting older, and more practice on the doll, may result in her being able to put in her own contact!