Finally...a good appointment

Julia had a great appointment with her pediatric opthamologist!  Finally!  No surprises, no bad news, no scheduling surgery or anesthesia.  I was so happy and relieved.  Here is the rundown...

Her eye pressures are 14 and 17.  Normal is 16 +/- 4.  So these are great!

Her right eye has grown a millimeter and a half!  This is a front to back measurement, not side to side.  Basically this means her prescription has changed two diopters in that eye.  The left eye only grew a half a millimeter, so the prescription really didn't change.  This is very strange...but good!  It means the prescription in each eye is getting closer and closer which is a good thing.  It also means the right eye is catching up to the left eye in size. 

Her cornea is still SUPER steep (hers is a 56, a normal adult is a 43). 

Doc says it seems like her visual system is trying to find an equilibrium.  He is stumped, but pleased.  It seems Julia's eyes are not behaving like he would expect.  We are just going to keep checking in every 3 months to see how it goes.  At this rate, it is quite possible that she won't need the implant because the script in each eye will be so close together.

So her new prescription is a +10.75 in the right, and +5.25 in the left.  But this is just for near vision.  She is getting a bifocal in her right eye, so it will actually be a +8 in the right and a +5.25 in the left with a +2.75 bifocal in the right.  We are getting her new glasses and had them made as transitions so she isn't so affected by the sun.  (And the best part is First Steps is paying for them!)  Here is a pic:

Obviously the color is a bit off in the pic.  It is going to be a burgundy pearl color.  I hope it looks good on her skin.  We also got a sheet of pics to start working on with Julia.  We are hoping to get her to be able to point to or name a pic when she sees it so we can get a better estimate of her acuity.  They look like this:

 

 

We are still patching.  We had a nice discussion on patching with the doc.  It has been pretty rough lately.  Hopefully with the new glasses things will go a bit smoother.  Her current prescription has her clearest point only 3 inches from her face!  No wonder she rips the patch off!  We are going to try for 3 hours.  I asked if we needed to do more and he said that obviously patching 6 hours a day will get more results, but we are in this for the long haul.  He said we need to balance quality of life and also not damaging her sound eye.  So we are going for a solid 3 hours a day.

 

So there you are!  A great appointment!  Thank you for all the prayers.  I know they helped.  I'll post a pic as soon as her glasses are in.

Surgery, Slides, and Sickness

Nope, those things have no specific relationship other than they have been my last few weeks.  So lets tackle them one at a time.

SURGERY

New "lovey" for the hospital (thanks Grandma Joan).

It is over!  The doc had a cancellation so they bumped up Julia's surgery. It really was a blessing.  Less time to fret and be anxious.  They called on Tuesday and said there was an opening on Thursday.  So we made arrangements and phone calls and got ourselves ready.

Eyes before the surgery.

Had to be at the Hospital at 6:15 am.  Julia was great until they tried to put the hospital bracelet on.  She wailed.  She did not want to be touched at all.  I knew then that it was going to be a long day.  She got into the gown, we talked to a ton of different people (and answered the same questions over and over) and then the time came for her to go back for surgery.

Chillin with Daddy and waiting to get started.

They had given her some versed (not sure if that is spelled right) so she was a little loopy, but not loopy enough to just go to a stranger.  So I walked her to the OR doors and handed her over.  Then as I walked away I could hear her crying as they walked in.  So of course I teared up and then when I got back to the room, James was teary as well.

Waiting to go back for surgery.

Surgery was about an hour and the surgeon came in and said everything went fine.  He also took measurements for an IOL and said we could move forward with that in a few months.  I'm waiting for the Dr. H to talk with the Surgeon to develop a more definite plan.  We have an appointment scheduled in 8 weeks to see Dr. H and figure things out.

We finally got to go back to recovery and get my baby!  She was inconsolable.  She does not come out of anesthesia well and we have dealt with this every time.  This time she was strong enough to try to rip out her IV and heart monitor leads.  She needed some meds to calm down and then we were finally able to go back to our room.  After an hour of cuddles, we got the IV out, got dressed and came home. 

 Tired

 Thirsty.

Sleepy. 

Snuggly.

 

 She slept all afternoon and then was back to her usual self!  She ate a big dinner and ran around with her brother.  It was seriously the easiest of all our surgery recoveries.  And her eyes are so straight.  She looks amazing!

Eyes after surgery!  So straight!

SLIDES

This weekend (yes, just a few days after surgery) was the birthday party for my niece and nephew.  It was at this place called Jump4Fun.  We actually had Jed's 2nd birthday party there.  Doc had said that Julia had no restrictions, so we just let her have fun!  Jed had a blast and probably would have played there all day if we could have.  Julia was hesitant, but then enjoyed climbing up the slides.  She didn't enjoy going down them as much as she did climbing up.

 

 

 

 

 

 

 

 Yes, every pose from Jed is a different time down the slide.

SICKNESS

And a bug has hit our house.  Julia has an ear infection, so we saw the doc yesterday for some antibiotics.  We had been treating it for 6 days with antibiotic drops, but it hadn't cleared, so she needed something stronger.  Thank God for ear tubes.  I can't imagine how much pain she would have been in without the tubes.  If the gunk flowing out of her ears was any indication, she would have been miserable.

Waiting for the doc.

Still waiting.

Literally, I got home from being at the doc with Julia, and James told me that Jed had been throwing up.  He puked several times last evening and once in the middle of the night.  So I kept him home from daycare and we have been cuddling today.  He hasn't been sick today, just tired, so hopefully it was a short-lived virus. (I'll save you from a pic of a puking kid.)

And the reason I was able to write this post is because I am sitting at home with a sleeping boy!  So there are positives to everything.

So now we are waiting to discuss the implant, have another dilation/refraction and hopefully Cardiff test to see where her acuity is.  In the meantime, we are just plugging along (we need to start planning for Jed's birthday (how can my boy be turning 3!), looking toward summer, and of course saving up for OeyeO!

 Eye is straight - even when patched!

Pumpkins and Patches

So Halloween has come and gone, and we had a great time.  We went to the pumpkin patch last weekend and picked our pumpkins.  They were carved and put on the porch.  And for Halloween, we went trick or treating and enjoyed a lot of chocolate!

At the pumpkin patch!

Jed rode the pony!

Picking a pumpkin.

Jed with the pumpkins.

Scooping out the guts.

Carving pumpkins.

Jed was Tigger.

Julia was a pumpkin (for about 5 minutes)

Finished product!

 

 

 

And now that the festivities are over, it is time to head back to reality.  We've been having a bit of a rough time with Julia and her glasses.  I was convinced that she could see better with them on, but I just couldn't convince her of that fact!  We were having trouble keeping them on her face.

 

I love my glasses right now!

 

Eventually, she took them off and broke them.  If you notice in the pumpkin patch pics, she isn't wearing glasses because they were broken.

 

Definitely broken.

 

When she broke them the first time, we went ahead and ordered her some miraflex glasses.  Good thing we did because a couple weeks later she really broke her glasses!  The miraflex actually arrived the next day so we went and picked them up.

 



My new specs!

 

We still have trouble keeping them on, but she wears them more than she would wear the wire frames.

 

They are on...

And they are off!

 

 

Julia saw her eye doctor on Nov. 1st.  First we did the Cardiff test to check her acuity.  She didn't enjoy being patched for the test, but she seemed to respond to the cards.

 

Then we visited with Dr. Hoekel.  He said that her acuity was better - one line better in each eye, which brings her to 20/80 in the left and 20/300 in the right.  He also noticed that her eye is MUCH straighter with her new glasses.  He checked out the glasses and then looked at her eyes.  He was impressed with how she is using her eyes and wanted to dilate her eyes just to double check that nothing had changed.  So before he put in the dilating drops, he tried to measure her pressures but she was crying way to hard. 

 

After her eyes were dilated he double checked her prescription and it hasn't changed at all.  She is steady at +6.00 in her left and +13.00 in her right.  We talked a lot about our options and he thinks that we should continue with the glasses for now.  Even though there is still a substantial difference between both eyes, it seems like she is trying to use them together and she is definitely seeing better in the glasses.  I asked if it would be better to go back to a contact in the right and keep the glasses on the left.  He said that he had thought of that too, but since her eye is staying so straight with the glasses, he wants to continue using those.  It seems that her visual system is trying to reach a state of "balance" with her left eye becoming a bit more farsighted as her right eye is decreasing.  He did predict that her left eye will always need correction - but I knew she would need glasses anyway, so that wasn't a big shocker.  He is going to run her information by the surgeon, just to get an opinion and see if he would do anything differently.

 

We also talked about the future.  He said that we will just take it one appointment at a time.  He said we will probably introduce bifocals around age 2 when she gets bigger glasses.  Right now he sets her focal point in her right eye at about 35 cm.  So anything farther than that is not in focus.  Bifocals will allow her to see both near and far since the lack of natural lens prohibits her from doing that adjustment on her own.  He also said that we may do the IOL at age 2, but that if her eyes continue the way they have been, she may not need the IOL!  If her prescription in both eyes ends up pretty close in numbers, the IOL will actually cause more problems by correcting the right eye while the left is still needing lenses.  I told him that would be great - that I wanted to wait as long as possible anyway for the IOL.

 

The only bummer is that we are starting patching again.  I expected this, but I am nervous about her wearing glasses and a patch.  We are patching 2 hours a day.

 

So overall, this has been the best appointment!  I always am so anxious and wound up going these appointments and have learned to anticipate bad news.  So it was great to get some good news and feel positive about the future!

 

 

 

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...

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.

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!