Friday, November 2, 2012

Our Pirate Princess

When I blog so infrequently, I always seem to need to focus on the big stuff like transplants and milestones and plans etcetera and so the smaller details seem to go by the wayside! So since I'm devoted to writing more I thought I'd write a whole post on Addie's eye since most people know parts of the story...

About a year ago, we noticed Addie's right eye turning in. We started going through the process of seeing doctors about it but our search for solutions for her eye got interrupted when she started struggling to breathe after Thanksgiving and we discovered all the fluid in her lungs.  She came home in late December so in early January she finally saw an eye specialist.  Interestingly what they said in January actually contradicts what her current eye doctor in July said so it's made it a confusing process to work out what she needs.  In January, the doctor felt that glasses and then maybe surgery would be the best process to straighten her eye.  The doctor told us that her vision was not poor enough that we would treat with glasses if her eyes were straight so we were using the glasses to try and straighten, more than for vision.  SO... we got adorable pink glasses.  And she did look precious in them!

But Addie is as headstrong and stubborn as they come and after maybe 3 weeks of wearing them pretty well, Addie decided she hated the glasses and would not wear them.  She ripped them off her face with a vengeance.  She tried to chew them.  She tried to feed them to Lucy to chew them! And of course this coincided with a really stressful time in our lives.  Max was having a surgery that we were very worried about and then she had a simple g tube placement and ended up in the PICU with severe high blood pressure for a week.  She had to go on this awful medicine to get it under control that would make her exhausted for hours and then angry coming out of it. And she stayed on that medicine for close to a month until I finally just insisted we find a way around it.  So given all that, we didn't fight her with glasses because she was either half asleep or fussy a lot of the time and when she was feeling good, we wanted her to enjoy that time.  Sometimes doctors drive me crazy because they get annoyed we didn't deal with this last year but they just don't understand what all we have been dealing with and I know we made the right decisions for her at every point over the past year. 

And the next few months became a blur of blood pressure issues, catheter replacements, potassium scares and preparing for transplant. We did meet again with the eye doctor to discuss the surgery which we knew was likely even had she worn her glasses.  But given her myraid of health problems at that time and planned transplant, an optional surgery was definitely not what the doctors has in mind! After all, we had way bigger issues than her eye! So we focussed on the goal of getting Addie transplanted and safe and healthy and we succeded! We brought a happy, healthy little girl home and it was time to work on the non life or death issues like eyes and ears (hearing will have to be another post!)
So we took her to a new eye doctor that was associated with our hospital as we would want her to have surgery at our hospital due to her other medical issues and the risks of anaesthesia to her new kidney. The new doctor we met did a lot more testing of her version and really felt that the primary issue is that she was not using her right away and was slowly losing vision in it as result.  She felt it critical that we make her use that eye and that we needed to do that before surgery.  Surgery to straighten the eye is necessary but will be much more effective and long lasting if she has been in the habit of using the eye leading up to it. She felt that while glasses may help with seeing out of that right away since she has some small amount of vision loss, she did not think they were essential or as important of a battle to fight as the patch.

SO... according to research 3-4 hours of day of patching will sufficiently force her to use her right eye and strengthen it enough that she will start to use it even when the patch is off.  The doctor wanted her to be patched every day for 3-4 hours for 6 months before we then surgically straighten it.  We expressed our concern that Addie rips the patch off.  Her solution... put her in restraints 4 hours a day.  Like literal restraints.  Baby Straight Jacket.  And no, she wasn't kidding.  Um, ok... not going to happen.  So I decided I would just have to win the patch battle my way!

So for a week straight I was a one woman show for 4 hours a day.  I sang and danced and provided so much stimulation and activity and ridiculousness that Addie was so distracted by what a fool her mother was being that she kept forgetting about the patch.  Then she would remember and take it off or start to and I'd pop it back on and break into my own version of Elmo's song once again.  It was a crazy week.  BUT, after a week she stopped pulling off the patch.  She accepted it.  And now Al pops it on every morning and she never takes it off until he does for afternoon nap.  Occasionally she'll pull it off in the car (and if she does, she tattles on herself and gives it back to you to put on).  But mainly it is a battle I won!

There are a lot of battles I am losing at the moment with Miss Addie.  Hearing Aids, talking, eating, fish-hooking her brother, peeing in her little potty, trying to remove diapers from the Diaper Genie... my losses seem to outnumber my wins most days! So when I have a win like the patch, man does it feel good!!! And her eye really is so much better.  It still turns in some when the patch is off but not nearly as badly as before and a lot of the times her eyes even look straight.  We will hopefully be doing the surgery in January.  I look at her and neither the eye turning or patch bother me.  I hardly notice them and I think she is just so adorable and perfect just as she is.  But I know she will be insecure about it one day and she'll be happy to have pics with straight eyes and for all the things in our life that we cannot fix, this is thankfully one we can.  So we will do that for her and be able to phase out the patch.  Which will be awesome but I'll always look back at pictures of my adorable pirate princess and smile.  I realized I've never posted or shared a picture of her with her patch on so here is a mini montage of the Addie and her patch...

I can wear cute South American sweaters and break through baby gates in my patch!

 I can play basketball in my patch! (and also wearing my hearing aid because every now and then my mommy really is Supermom...!)

 Elmo and I can swing in my patch!

 I can look adorable and push toys into the trash can in my patch!

 I can eat batter (and by eat I of course mean smear on my face and never actually swallow) in my patch!

 I can go for car drives in my patch!

 I can perform doctor duties on Cookie Monster in my patch (his lungs sound great, btw)

I can go grocery shopping and stock up on Jello in my patch!

1 comment:

Michelle Thompson said...

She is adorable! My son did patching several years ago and I started off with patches from the drug store which were horrible and would not stay on. Ended up finding thru the blog. Never had problems with the coloring wearing off on glasses as some users complained (MYI told me they fixed the dye issue) and never had problems with irritation. These stick really really well and come in cute designs. I wanted the most bang for my buck over the summer (and was not dealing with other medical issues) so after checking it was okay with our eye dr. we patched for the entire day instead of for several hours. And it does work! Good luck!