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!

Random

So, I woke up at 3:30 am because I am sooooo excited about leaving for vacation today!  My kids get to ride in an airplane (and I get to try to keep them from irritating the whole plane)!  Jed is thrilled and can't wait to ride in the airplane and get on the boat (we are going on a cruise).  I really don't think he understands what "vacation" is, but he has asked multiple times a day for the last week, "are we going on vacation now?"  And then threw a tantrum when I said no.  So today is finally the day!  We are packed and ready to head out - which resulted in me being awake at 3:30 in anticipation. 

So I figured I would post some random pics from the last month to catch everyone up on our summer adventures.  Just to let you know, if you are the praying type, please pray for us.  Julia is MAJORLY fighting patching.  We have gone through 80 patches in 2 1/2 weeks.  It is so hard.  Thankfully the glasses aren't a struggle - she wears those willingly, and even uses the bifocal.  But patching, phew...this has to be one of the hardest (if not THE hardest thing I have done).

Fourth of July

They really enjoyed the parade.  Jed will still "play" parade and wave his little flag and tell me to throw candy at him.

Watching daddy shoot off fireworks in our driveway.

My beautiful girl without her glasses.  I love her little specs, I really do.  But sometimes I like to look at her face without any accessories.

We spend lots of mornings at the park (that is his favorite Duck Dynasty t-shirt).

Waiting for eyes to dilate at the eye doc.

Julia had "school" four times this summer through early intervention.  She loved it!

 

 

Fishing trip

This is what Julia did while Daddy and Jed fished.

I caught one!

More snacks.

Sigh...my boys.

Fun on the 4-wheeler.

A big shout out to "Uncle Matt" for letting us visit for the day and fish in his lake.  The kids had a blast and Jed still talks about the 4 fish he caught (and how he threw them back). 

We made cloud dough.  Messy but fun.

Cloud dough before it got crazy.

 

Zoo

Jellyfish.  So pretty.

Digging in the children's zoo.

Brushing the goats.

Feeding a stingray.

Harassing a chimp.

Riding a train.

Another shout out to my mom who went to the zoo with us.  She was a huge help!  I couldn't have managed both kids without her.

 

Just hanging inside.  This is a lot of our summer too.  Just trying to beat the heat and have fun indoors.

 

So there you have it.  The highlights of the last few weeks all jammed into one post.  It is hard to believe that when we return from vacation, I have one day off and then I go back to work.  Jed is starting two day a week preschool (big tears from mom) and Julia will start two days a week in her "school" when she turns two.  Summer always goes too fast.  I am thankful for my job that allows me to spend two months of the year with my kids, but also grateful to go back and be with my students.  Win-win situation for everyone.





 

Eye update

I was going to put some fun pics in this post, but my computer is being wacky and won't read the photos off my phone or camera.  So it is pic-free, but still exciting!

Julia had her quarterly eye appointment with Dr. Hoekel on Tuesday.  I get so nervous leading up to these appointments.  I'm always afraid we are going to be dealing with another surgery or another setback.  After the last appointment went so well, I was sure I would be getting some bad news this time. 

Julia was awesome.  She sat in my lap and let Dr. Hoekel look closely at her eyes with the microscope and with the prisms.  Her right eye does float up sometimes, but it is only occasionally.

She got the dilating drops and we waited in the waiting room.  We finally went back and it was time to check her prescription.  She was still great and let the doc look at her eyes with the light and the lenses.  Her right eye has dropped another diopter, bringing it to +7.00 with a +2.75 bifocal.  Her left eye stayed at +5.25.  Dr. Hoekel is stumped.  He is not sure why her eye continues to grow.  I am shocked because when we started this journey, I figured she would be in a super high-power contact for years.  Now she is down into glasses and it is looking like an IOL won't even be needed!  He said a "normal" farsighted eye in a child changes .1 diopter a year.  So an entire diopter change would take a decade.  Julia's eye has changed almost 10 diopters in less than a year.  Crazy!  This means her little eye is growing and growing.  Dr. Hoekel assured us that while it is unusual, it is not a bad thing.

She is using her right eye some, but definitely not equally with the left.  We couldn't get a real acuity test because she hasn't quite grasped the concept of the picture charts (I tried the flashcards, she didn't get it).  He estimated the right eye is probably somewhere around 20/200.

We also talked about vision therapy.  He wasn't against it and actually said it can be really helpful but he is only familiar with exercises that can be done with a verbal child.  The author of "Fixing my gaze," Susan Barry, has actually met with Julia's surgeon a half dozen times.  Dr. Tychson, the surgeon, believes that Susan actually had nystagmus (trembling eyes) and was able to achieve stereovision because she was able to calm her nystagmus with vision therapy.  Dr. Tychson has recently published several articles on nystagmus and actually has a full time monkey lab where he does research.  (the monkey info was a little freaky, but I am glad Julia has such a smart doc!).  Dr. Hoekel said that Julia's nystagmus should get better over time, but will probably never completely go away.

So Julia is getting a new lens for the right side of her glasses.  Since it is a doctor change, and is within 90 days of purchase, it is free!  Hurray!

We also discussed patching and how difficult it is.  Dr. Hoekel said that if it gets to the point where she will not cooperate, he can have a plano lens put in the left side of her glasses and we can use dilating drops in her left eye.  I don't want to do this because it essentially leaves her with fuzzy, fuzzy vision in the left eye 24/7.  Research shows that it works as well as patching, but requires drops daily instead of just 2-3 hours of patching.  So we are going to persist with the patch.

So that was a long update, but overall, a fantastic appointment.  I may look into some vision therapy after our next appointment, especially if we can get a more accurate acuity reading.

Nerves

I feel like I've been a slacker with posting this summer, but we have been so busy!  The only "down" time I get is if I hit the jackpot and both kiddos nap at the same time.  And then I am usually trying to grab a shower or look at facebook (or fold laundry).  So to catch you up, I figure a nice photo montage would be good!

So I tried a pinterest idea for Father's day.  This is the best shot I got.

But this one cracks me up.

This is their personalities to a "t."

We grew water beads.  They started out looking like this.

And they ended up like this.  We had a blast using measuring cups and "scooping" the water beads.

We also made "summer snow."  It was frozen shaving cream.  Jed didn't like it much because he isn't a fan of cold things on his hands.  But it was worth a try.

We spent a Saturday at Mark Twain Lake.  We brought up my parents' jet skis and our boat and just parked on a grassy bank.  The kids loved swimming.  I didn't take many pics though - so this is about all I have.

We went to Lowe's Build and Grow.  Jed got to make a Monsters University wooden chest.  It was a lot of fun.  The best part was they were giving away all their old kits from previous workshops, so I have a ton of rainy day construction kits to do with the kids.

Play doh usually will buy me about 15 minutes of patch time.  I'll take it.

This was supposed to be baking soda ice cubes that you can spray with vinegar.  They didn't fizz much, so Jed wasn't really interested. 

One morning I let Jed take pictures with my camera.  So now I have lots of pictures of our tv, his toys, etc.  But he captured a few good ones.

Sneaky, sneaky.

 

We have actually done this twice, and it was a lot of fun.  Ice ball bowling.  You freeze a water balloon and then "bowl" outside. 

 

Julia also has had classes at United Services (through First Steps Early Intervention) on Fridays and we do swim lessons on Tuesday and Thursdays.  I try to go to the gym daily (thank goodness for babysitting at the gym).  I have to admit that it gives me an hour of "me" time.  I wish they had a coffee shop in the gym so I could sip a cup while the kids play in the babysitting area!

We also do lots of bike rides, four wheeler rides and wagon rides around the neighborhood.  We try to hit a playground after the gym if the weather is nice.  I find that I need many activities scheduled to keep the kids busy.

And while these pics are awesome, I must also admit there have been days of tears.  Not only from the kids, but from me.  It is overwhelming and exhausting taking care of a preschooler and a toddler.  Add a patch into the mix, and some days it is just too much.  Jed has an extraordinary amount of energy and doesn't like to listen.  Which makes it a bit difficult to go places with both of them.  But we try.  And Julia rips off her patch every two minutes.  I have to chase her down and she screams while I put another one on.  It is heartbreaking.  I love my summers with my kids, but I honestly think it is easier going to work!

We have ordered an ipad!  It will be here tomorrow.  I am hoping that will help with patch time on some days.

And my nerves have kicked in.  We are one week from Julia's EYE appointment.  I am praying for another good appointment.

We are also three weeks from embarking on an 8 day cruise.  I've been trying to prepare for that as well.

So say a prayer for Julia for her appointment, and one for me that I don't lose my sanity this summer!



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.

More snow

Seriously, I am sooooo ready for spring.  Next weekend is Easter and we are hovering around 35 degrees here.  And to top it off, we got over 12 inches of snow on Sunday!  So, we ended up with a snow day on Monday. 

This is not even the full amount!  It was still snowing at this point.

 

Don't get me wrong, I love being able to stay home with my kids, but I would prefer to stay home in May when the weather is better. You see, every snow day we have adds an extra day to the end of our school year. So now we are at May 23rd as our last day. Boo.

 

So the day it snowed, we decided to go ahead and dye our Easter Eggs.  Nothing fancy, but we sure had fun.

 

 

Julia is definitely becoming more aware.  She understands that she needs to wear glasses and is definitely becoming a pro at all things related to the EYE.

 

 

 And with having to stay inside comes the multiplication of germs. Both Jed and Julia have been through two rounds of antibiotics for ear infections. Julia and James both had the stomach bug. Julia's was really bad and she ended up in the emergency room. So glad that spring is around the corner. Maybe I can teach the kids to clean up their germs?

Nerves have set in. Julia is seeing the Pediatric Opthamologist on Tuesday and I am nervous. I seem to be more nervous when I think things are going well. It is like I am waiting for the shoe to drop. I am praying that this appointment goes well and there are no surprises. I am kind of hoping for a new prescription so that we can get new glasses. I would like Julia to have transition lenses for the summer, and since First Steps is paying for a pair, I figure this is as good of a time as any! Not sure if she will graduate to a bifocal yet or not. We will have to wait and see what good ole' Dr. H says!  The bad thing is Julia is fighting the patch again.  And boy can she fight!  We've been using the arm braces again because otherwise she will rip the patch off every 2 minutes.

Cheese from the cheese ball!

Patch off.

Here mom - I don't need the arm braces.

Here, you can have the patch too.

 

So wish us luck.  We will head to Children's on Tuesday (thankfully we are on Spring Break) and see what the docs have to say.  We also will be having therapy with the Occupational Therapist and vision specialist this weekend.  Hopefully spring is coming soon and we can put all the snow behind us!