EYE will not give up

I sometimes feel like throwing in the towel.  Patching is hard.  Watching your baby struggle is torture.  The constant eye doctor visits, the glasses, the patches, all of it.  I honestly sometimes want to throw in the towel and call it quits.  She has enough vision, right?  Is she really going to see more if we keep patching?  ACK!

We just saw the eye doctor yesterday, and it wasn't great news.  Another surgery is planned.  This time to correct the muscles (again).  Except now the eye is floating upward instead of inward.  They also will do an exam under anesthesia (EUA) while she is under anesthetic.  They want to get a good measure of her eye pressures.  Her prescription keeps changing so drastically that they want to make sure it is not glaucoma causing the growth.  This is surgery number 5 for my little champion.  It is so disheartening and it gets frustrating to feel like you are constantly getting bad news when you go to the eye doctor.  I am looking forward to the day when Dr. Hoekel says, "You can stop patching now!  Those years of frustration, the tears, the bribes have all paid off and your daughter can see!"  That is my prayer.  I want to hear that sentence one day.

Thankfully, our ophthalmologist and optometrist are great.  They are really supportive and encouraging.  But I admit, I was holding back the tears on the drive home.  It just gets so tiring, you know?  It just feels like it is one thing after another and my little girl can't seem to catch a break.

Don't get me wrong.  I count my blessings everyday.  I have two beautiful children that are healthy and happy.  I have supportive family and a wonderful husband.  But I still wish I didn't have this battle to fight.  I don't want to hand my baby off to a nurse (again) for a surgery.  I don't.

The good news is that Julia was able to finally read the Allen chart and identify the car, horse, cake, etc.  This is the first really good measurement we have had of her vision.  She has done the Cardiff test before, but that is a preferential test, so it isn't completely accurate.  She was able to read the 20/60 line with her left eye and 20/160 with her right.  Her prescription changed again, so we are getting new lenses for her glasses.  She was so brave and so good!  She sat calmly and let the doctors look in her eye, shine lights in her eye, everything!  6 months ago, we were holding her down and prying open her eyes for the exam.  She is growing up (sniff, sniff).

So I guess I won't give up.  We will keep patching, keep trudging on, keep trying to improve her vision.  In my head I know that it will be worth it in the end, my heart just doesn't feel it right now.

Thankfully surgery isn't scheduled until after Christmas.  So we are going to enjoy the holiday.  Good thing I ordered some Christmas themed patches!

More contact drama

Julia and I have really bad luck.  Well, at least when it comes to contacts.  If you read my last post, you saw that the contact company had screwed up AGAIN and sent an 8.6 when Julia needs a 6.8.   They assured the Eye Clinic that they were overnighting a new one and it would arrive on Monday.  No problem.  Doctor appointment is Wednesday.  We will pick it up while we are there, have it checked, voila - no problem. 

I get a call from the Eye Clinic this morning.  No contact.  They can't find it.  Can't get a tracking number because the company is in Colorado and an hour behind so they aren't open.  I started crying and told them I was coming to the appointment anyway because I had questions for the Doc.

It was an emotional appointment.  Dr. H was so very gentle and explained everything with grace and support.  I had my list of questions (again!) and he patiently answered them all, even when it was answers he knew I didn't want to hear.

So apparently an eye floating up is normal in aphakic kids.  The brain can't comprehend the dissonance between the images and to make it bearable the eye "floats."  Hopefully it will be corrected with the contact. We will look at surgery for the eye crossing and floating up if it is doing it more than 30% of the time with the contact in.  He explained that any kiddo with a prescription over +3 is going to have an eye cross when they don't have glasses or contacts.  So when you get into prescriptions like +19 (what Julia's is) there is going to be crossing!  Hopefully some extended time wearing her contact will help.

Julia's eye also "jumps" when she is patched and I thought it was her trying to focus.  Nope.  It is nystagmus - also common in aphakic kids.  He explained something about her eye not being "fixated" like yours or mine because she didn't have visual stimulation those first months.  I didn't quite understand - but did understand that this is just another part of the package. 

The head tilt is also part of the package.  She is trying to have things in her field of vision in her left eye so she can see them.

We went over the numbers from the EUA and everything looked good.  Her cornea is super, super steep (which I already knew) but he compared her number to a normal person and I was surprised.  Probably explains why a contact don't stay in (think of trying to keep a beanie hat on a pointy head versus a flat head).

He understood my concern with the difficulty we are having with contacts.  He agreed that her being in a lens 50% of the time is not acceptable.  He suggested we give this next contact a shot and if things aren't improving we will talk with the surgeon about implanting an IOL early.  There are risks of complications with IOL's, but the benefits of constant correction in her vision outweigh the risks at this point.  I am also going to invest in some backup contacts (a hefty investment) so that we can have several spares at home.  That way, if they keep falling out and getting lost, we have another one ready and don't have to wait weeks for a new one.  It isn't ideal, but it is what we need to do for now.

We also are increasing her patching time.  She will now patch half of her waking hours.  It is going to be a challenge, but it is so necessary for her to have good outcomes.

He carefully told me that he is not giving up - his job is to bring her vision into focus and keep it in focus and he was going to do that.  He also assured me that I was doing everything right - this was not anything I could control.  I really needed to hear that.  I was having a "mommy guilt" day and was feeling like I must be doing something wrong and I was failing my daughter.

We go back in 4 weeks.  The contact should arrive in the office tomorrow - so I am picking it up on Friday.  If it seems to stay in, I am going to call and order the spares.

In some good news - Julia had a hearing test and passed with flying colors.  I cracked up during the test because she was sitting on my lap and they would say her name through the speakers to get her to turn her head.  When she turned her head, these toys would light up and make noise.  She was exactly like Pavlov's dog and everytime she hear a sound, she whipped her head to the side to see the toys light up!  Hilarious!

No pics today - don't have the time or energy.  But definitely will put some up before I go back to work in a week and a half!  Ack!  The summer is almost gone...

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!

Happy Father's Day! (and some potty training too)

Happy Father's Day (belated) to all the Dads out there.  James is an amazing Father to Jed and Julia.  He is our protector, provider and brings fun to our lives on a daily basis.  Can't imagine life without him.

Dad sleeps while Jed plays.

Jed and Julia decided to make some "flowers" for Daddy for Father's Day.  (Really, I made them do it and they were not really thrilled with having paint on their hands and feet - but we got it done.)

This is about as creative as I get.

We had a quiet Father's Day at home - just spending time together.  On Monday we started the dreaded...Potty Training!  Yikes, it is tough.  We had tried a month ago and it was an epic fail.  Jed has been showing more signs of being ready so I figured I would give it another shot.

Potty training requires juice, towels and underwear!

I was a little worried about the carpet!

So it is going okay.  Having some accidents, but also going on the potty.  He is pretty excited about his Mickey Mouse underwear and getting a piece of candy when he goes.  I hope the excitement lasts long enough to get him fully trained!

This is what Julia was doing while we frantically ran to the potty every 15 minutes:



8 months is definitely not too old to nap in the swing!

So life is hectic but good.  Julia's contact is still popping out on a daily basis, but I am just trying to deal with it.  Her EUA is tentatively scheduled for Tuesday, June 26th.  She'll have tubes put in her ears during the procedure as well.  Other than that, we are just enjoying our summer!







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.