The search for a contact

So you may think that Julia has lost a contact and we are searching for it.  (Knock on some wood) That is not what has happened.  Rather, we had to really search to find a contact that fit.  In hindsight - we actually were pretty blessed that it only took about 3 weeks.  Other moms try contact and contact with no luck.

Two weeks after surgery we went and saw the great Dr. H who is the pediatric optomotrist at St. Louis Children's Eye Center.  He is wonderful!  He had gotten Julia's chart the week before and ordered some contacts to try even before he had seen her for the first time.  That first appointment was good and I was impressed by Dr. H's honesty.  He answered my questions with truthfullness and compassion. 
"Will my daughter be able to see?" -  We just don't know.  We are going to treat her as if she is going to gain 20/20 vision.  Only time will tell.

"Is her eye going to grow?  Is it always going to be small?"  -  Again, we just don't know.  Some kiddos the eye grows and you can barely tell it is smaller.  In others, it doesn't.  Only time will tell.

He had contacts to try, but unfortunately Julia's insurance had not come through yet and in order to try them we would have to pay $400 for the contact and the fitting.  He suggested we give the eye another week to heal and another week for the insurance.  It was stressful and I was worried about her not having a contact, but we waited.

The next week, I called before the appointment to see if the insurance had come through.  She had been denied.  I was crushed.  I didn't know how we would keep paying for contact after contact.  I immediately called our benefits person at our employer and the doctor promised he would call the insurance as well.

So at that appointment we paid for the contact and tried to get one to fit.  Dr. H had ordered 3 different silsoft by Bausch and Lomb.  These are the common contacts used in aphakic infants.  We tried the first one and knew there was no way it would work.  You could see the edges lifted all around her eye.  Because of the phpv, Julia's eye is very, very steep so standard contacts won't sit securely on her eye.

He had also ordered a few custom made ones and we found one that seemed to fit, even though it wasn't quite the right prescription.  So we left with that contact but instructions to not patch since the prescription wasn't quite right.  That afternoon was a huge mixture of emotions.  We found out the insurance had approved the contact so we would be reimbursed, but the contact fell out multiple times.  The last time it fell out we found it on the floor next to the end table.  I burst into tears.  I didn't know how I was going to get through the next few years always worrying about the contact falling out.  How would she go to daycare if the contact won't stay on for more than an hour!  I lost it and sobbed in James' arms.

I emailed Dr. H and told him the contact wouldn't stay in and could he order a different one.  He did and in the meantime we kept her contact out.

The new one arrived a week later and it was the steepest curve the company could make.  A normal eye has a base curve of about 40 - Julia's was measured at 60.  Her contact is literally custom made to specifics just for her.  This one was also a little bigger, so it stayed in better.  We went home and started the patching journey.

 Amazingly, the contact has never fallen out (knock on some more wood and say a few prayers).  Other than some sickness that lead to an eye infection (more on that later), Julia has been wearing her contact for about a month.  We patch for an hour a day and see the fabulous Dr. H in a few more weeks.  Patching isn't easy - she gets pretty grumpy and clingy when patched.  But we keep on going knowing it is our only chance!