Eye Surgery/Life Update

 We saw the eye Dr. at Shiley Eye Center today and discussed fixing her dislocated lenses.  There are arguments for waiting and for doing it now.  The waiting argument is that she now has healthy, functioning eyesight even if it is not the greatest.  There is always a risk with surgery; infection, etc.  So why risk the sight she has now.

The go ahead and do it argument is that she will have to have this surgery eventually so why wait.  Your brain helps in the process of getting the best vision possible and it's functionality decreases with age.  Does that make sense?  The older she is,  the less her brain will make the connections to help her eyesight.

Of course,  there is no guarantee that getting the surgery will help that much with her sight,  but it might help a lot.  Ugh.  It is difficult taking her into surgery when it's not an absolute must.  Nevertheless,  we have decided to go ahead and do the surgery.  I want her to have the best vision possible in the long run with her brain connections helping on that path.  She has to see a retina specialist before we can schedule the surgery to make sure everything looks good.  People with Marfans have a risk of retinal detachment.  And this is where my brain starts screaming and my thoughts turn decidedly un-PG for the reading audience.  Couple deep breaths, some chocolate, and a diet coke,  and I'm picking up where I left off.

The question is when?  It is done under general anaesthesia and there can be a several week to several month break in between surgeries.  She will have to wear an eye patch for 24 hours and then while she sleeps for a week or so after each eye surgery.  I am leaning toward end of summer or early fall.  A few months won't make that big of a difference at this point and I would like Kate to be able to walk really well before we go throwing another surgery on her.  Just my thought for today.  I may change my mind.

Kate is becoming an expert wheelchair pro.  She takes corners a little too fast for my liking and can wheel it up so the front wheels come off the ground just a little.  Scares me to death.  Trying to end that,  but Kate is one strong willed kiddo.  Her sides still hurt when I lift her and have her next to me,  but not enough that she really complains,  she just pulls her hip away from me so I know.  I think her legs are looking a little bigger and she is eating a little better.  She can move herself from the wheelchair to other chairs and the bed just using her arms. She is going to be one strong girl.  She likes going on walks on our street which really just means that I chase her while she tries to get the wheelchair to go as fast as she can.  Maybe I will lose some of my stress weight.  Yay, small victories.

She is having a tutor come almost every weekday and is doing alright.  It really depends on the day.  He is very patient, thank goodness.  I believe she is totally caught up with her classmates at this point.  We may even be ahead in reading The Trumpet of the Swan.  We have used bribery so often I'm beginning to wonder if I haven't ruined Kate all together.  I have started backing down on the bribes but it's not always easy with her.

The hospital bed is gone and my bedroom feels so empty.  Kate is now sleeping with me so I can monitor her attempts to walk.  It will be three weeks from yesterday before she can start with a walker.  We see the Dr. in two weeks, the 11th,  just because he is out of town the next week. Kate is hoping he will take an x-ray and give her the go ahead to walk. Here's hoping.

We get another cardiac echo in May to see if her aorta has become any more distended than it already is.  We also go in May and get an x-ray of her back,  the whole misaligned spinal column deal.  You know,  Kate cracks me up, makes me smile, and gives the best, sweet "I love you's."  It certainly helps get through all this.  People ask how Abby and Noah are doing and I never remember to address that.  Honestly,  they are doing really well.  I can see that they have grown up a little the last few months,  but I think it has helped put life in perspective for all of us.   They help out with less grumbling and understand when I'm tired because I've put in a late night with Kate.  They are awesome.  So blessed.