No, no, no...

 NO GLAUCOMA!!!!!


No time to upload pics or anything, but I want to shout from the rooftops that Julia does NOT have glaucoma!  Pressures are normal, optic nerve is not cupping, and measurements are great.  Doc said that they are not sure why her eye grew so much in such a short time - but I know why.  Prayer.  We have been praying for her eye to look normal and be as healthy as can be.  And her eye grew and is healthy!  Her EUA went great!

Doc said that for having PHPV her eye looks as good as it can.  We caught the cataract early, we are patching, staying on top of everything - she looks great!

We discussed the problems with contacts and the surgeon feels we should see how this next contact fits and then possibly discuss doing the IOL sooner than later - possibly after she turns a year old.  It is something we will need to discuss more, but I am hopefull that he thinks she is a candidate for an IOL!

Ear tubes went in great - she had pus in her ears when they drained them so it is a good thing we did the tubes.  She was crabby when she came out of anesthesia but very happy to get her bottle!  She was a trouper all day - even when she was hungry.

I am so thankful for all my friends and family who pray for Julia and send us good thoughts.  We so appreciate it!  We know we still have a long road with lots of patching and contacts, but we are thankfull for the good news today.  We are going to celebrate this victory!

Enigma

Enigma: 

a puzzling or inexplicable occurrence or situation

Yep, that describes Julia.

So we saw the eye doc today.  Good ole' Dr. H.  He's been with us since the beginning and I really do trust him.  I showed him the prescription the "second opinion" doctor got and he was surprised that it was so low.  It has only been 6 weeks since her prescription has been checked.  I also got to ask a lot of questions:

When can she get an IOL? 

"Usually 20 months or older - unless she is having contact issues."

Can she swim in her contact? 

"She can, but it risks some pretty nasty infections, so I would take it out."

What about the eye cross? 

"Unfortunately that happens in 90% of these cases.  I keep note of it in her chart and eventually she'll need surgery to fix it."

How much do you think she can see? 

"Not sure.  Anywhere from 20/60 to 20/400 in her right eye."

So then he checked her prescription, and sure enough, the other doc had it right.  In 6 weeks her prescription has changed 10 diopters!  That is drastic and shocking.  And her left eye, the non-phpv eye, is getting a 4.5 prescription as well.  So she is farsighted in that eye. 

So now what.  Well, the drastic change is concerning.  It could be that she had an amazing growth spurt and her eye really, really grew.  OR, it can be a sign of glaucoma.  Because high pressures can cause the eye to swell, the eye would measure bigger and need a lower prescription.  We couldn't get good pressure readings in the office so now she is being scheduled for an EUA (exam under anesthesia).  Basically they are going to take a really, really good look at her eye, measure everything and see if anything is wrong.  And the ENT is going to bop in during the EUA and put tubes in her ears while she is already knocked out.  I'm not thrilled about my baby being under anesthesia for the third time, but I knew this would be needed at some point.

The doc said he was shocked at the change and that Julia isn't following any normal patterns.  She is a trailblazer - yes she is!  Normally the patched eye will become nearsighted from being patched, hers is now farsighted.  We are holding off on glasses for that eye to see if it starts to normalize on its own.  Apparently it is quite common for infants to be nearsighted or farsighted and it will change as they grow.  If hers doesn't start to correct itself, we will have to get new glasses.

We got another new contact (he had some spares in the office) and we are going to continue patching and wait for the office to call with her EUA schedule. 

So keep us in your prayers.  I am hoping and praying she doesn't have glaucoma.  The thought is too scary to entertain for more than a moment.  Glaucoma has a risk of losing vision because of  damage to the optic nerve.  We aren't sure of the next step until we know what is going on with her eye. 

Lost...

I am feeling lost.  Afloat.   Adrift.  The highs and lows are taking their toll and I am feeling defeated. 

Yesterday we saw the eye doc and got a new contact.  This custom made piece of silcone was carefully placed into Julia's eye.  The doc said it looked great.  I said it looked great.  Even the fellow working with the doc said it looked great.  This is the 4th try at getting a contact to fit her eye.  Last time the doc ordered a contact that is flatter.  It didn't stay in (in fact, we lost it at church last Sunday.  Imagine me, my mom, and my dad all crawling around on the floor of the sanctuary with flashlights trying to find a contact. Yep - that was us.)  So this time he ordered one that is bigger.  12.5 mm to be exact.  An adult usually wears a contact that is 14 mm.  Julia started at 11.3.  12.5 is usually the size contact an 18 month old would wear and Julia is only 7 months. 

I was on top of the world yesterday.  I was convinced this contact would stay in.  It was SO big and was difficult to get in.  So I reasoned that it would be difficult to fall out.  I was excited to start patching regularly again (even though patch time has been increased by one hour).  It didn't phase me that the doc wants to check her pressures in 2 weeks - I was just so happy to have a contact that would stay in!

So today we patched.  And boy was she crabby!  She is teething and drooling everywhere.  We actually went through two patches because of her drool!

I wanted to enjoy the day so we went to the park.  Julia sat on a blanket in the shade and then I carried her around the playground a bit.  She seemed to enjoy it.

Then we went to McDonald's so Jed could have a happy meal.  It was chaotic, but fun.

Last stop of the day was Costco (Jed needed diapers).  As I am pushing the cart into Costco, I figured I would check her contact.  I swore I checked at the park and it was there.  But when I looked down - it was gone.  I double checked - yep, gone.  And I lost it.  I cried.  I called my mom and sobbed.  People were walking past me by the doors to Costco and looking at the crazy lady losing it on the phone.

I felt like a failure.  Why didn't I check more often?  Why had I been so sure of myself?  I was such an idiot - just assuming this one would stay in. 

And it isn't even the money.  Don't get me wrong, it is nerve wracking to think that at some point insurance will probably not pay for these lost lenses and we will be paying 150 dollars apiece.  But I don't care about the money.  I care about my daughter's vision.  And right now she is not wearing a contact on a regular basis and she is not patching on a regular basis.  Which means her brain is not connecting with her eye on a regular basis.

Adrift...not sure what to do or where to go.  I've thought about a second opinion from another eye doc - but I love our PO.  He is wonderful.  And I don't know that it is him that is the problem.  I know that because of the PHPV, Julia's eye is not shaped normally.

I've thought of glasses - but she won't keep them on and I really don't think she can see out of them.  It is like looking through a little magnifying glass.  And honestly, they really are not best practice for her situation.  We are going to attempt to keep them on her to at least have patch time for the time being.

So I guess we try again.  So another contact has to be ordered, made and shipped.  Which means it is another 10 days or so before we get it.  And hope/pray that it stays in.

Her eye is watering and she is fussy.  I think she is teething, but I worry that it is more than that.  Doc is concerned about the eye watering and wants to check her pressures at her next appointment in 2 weeks.  (For those of you that are not familiar with cataracts - because of the surgery and condition that Julia has she is at high risk for glaucoma.  Checking her eye pressures will tell us if she is developing this as well).  I am thinking if the fussiness and eye watering continues I may call and try to get in earlier just to have peace of mind.

So I am feeling down, low, lost, afraid, nervous and scared.  I am scared.  I am scared for my little girl.  It is hard feeling so helpless.  I wish I had answers and could just fix everything.  I wish I could see the future and see that everything turns out okay.