Numbers

I love math.  It has always come very naturally to me (especially with my OCD personality).  Things that are logical and balance just seem to make sense.  So right now, when the numbers aren't adding up, my world seems off kilter.

36 - That is the number of weeks that Julia has been on this earth.  Take into account that she didn't have cataract surgery until 9 weeks of age and you are left with 27.  We have had 27 weeks to work on her vision.  Subtract another 5 weeks while we waited for her eye to heal and the contact to come in after surgery.  Take away another 2 weeks when she couldn't see because scar tissue had grown over her pupil.  Another 5 weeks to heal from the second surgery.  2 more weeks gone for this latest lost contact.  And probably at least another week from other lost lenses.  So do the math.  That leaves us with 12 weeks.  Julia has worn a lens and patched for only 12 weeks of her life.  And that is generous.  I really think it is closer to 8-9 weeks when you really factor in all of the lost contacts and take into account the two eye infections she has had.  So my baby has only been "seeing" out of her right eye 30-40% of the time. 

I'm starting to freak out a little.  20/20, 20/60, 20/200 - these are numbers too.  We don't have a number like this for Julia yet.  But I obsess over these numbers.  What will her number eventually be?  How can I get a better number if I don't have a contact and can't patch?

We are going on 2 weeks of no contact.  We lost the last one on vacation.  I called that day and had the doc order a new one.  Yesterday (Friday), I drove an hour to Children's hospital and paid 150 dollars for the new one.  Drove an hour home, looked at the pack and started to cry.  The lens was an 8.6 base curve.  Julia needs a 6.8.  More blasted numbers!  This is actually the SECOND time the company has made this exact same mistake.  The last contact we ordered came in as an 8.6 and I had driven all the way to Children's.  The doc had even put it in her eye when we realized it was wrong.  I know that very, very, very few people wear a 6.8 base curve.  It is extremely steep.  But seriously!  Twice they have made this same mistake.  And the doc specifically uses this company because they are one of the only ones that actually will make a 6.8.  The company is overnighting a new lens and it should be here Monday.  But I can't drive the hour on Monday and we will be in for an appointment on Wednesday so we will get it then.

I had really hoped we would have a few days of patching before this next appointment.  I wanted the doc to try and do some acuity tests with the lens in to gauge how much she is seeing.  I guess we will have to pop the lens in when we arrive, try to do the tests, then pop it out to dilate and do refraction.

I am worried that her eye is turning in and up.  I am worried that she cannot see.  I am just worried.  I don't want the IOL earlier than what is recommended, but I fear we are missing a critical window of vision development because we never seem to have a lens.  I have lost count of how many contacts we have lost - at least 6.  Longest one lasted a month, shortest one was less than 24 hours. 

No - he didn't hit her with the chainsaw!

So as you can see, lots of numbers keep floating through my brain.  I am anxious for Wednesday and her eye appointment (she also has an appointment with the ENT and a hearing test) but trying to enjoy the moment and live in the present.  I won't give up.  I can't give up.  But sometimes, in the smallest part of my brain, I lose it.  I cry and scream and fear that I am not doing everything I can for my daughter.  That I am failing.  I would move heaven and earth for her to see.  I worry that the one extra week of no contact is the difference between 20/20 and 20/50.  I just want what is best for my daughter and I feel like I am not doing that right now.