Two years

Dec. 15th.  For most people, this date simply means they have 10 more days to shop.  For me, it is a day I will never forget.  Two years ago, on December 15th, I spent 4 hours at Children's Hospital with Julia (and my Dad - Thank you Dad!) and found out that my perfect 8 week old little girl was blind due to a cataract, needed surgery and would wear a contact and patch.  In some ways, it was a glorious day.  I had spent the night worrying that she had cancer or something equally as terrible, so to hear that it was "just" a cataract was a relief.  But it was emotional, and scary, and I will always remember.

This is the day of the appointment.

 

Now that two years have passed and we have adjusted to this EYE world, I can realize that I have so much to be thankful for.  I know that I probably should have done a Thanksgiving post, but I never got around to it.  This two year journey has been wonderful and horrible at the same time.  But I couldn't have done it with the support of so many different people.  So in honor of the two year anniversary of her diagnosis, I wanted to express my thanks.

 

 

My family - Thank you for all your support and prayers.  For keeping Jed overnight so that we could get to early morning surgeries.  I can't count how many times my mom has driven me to appointments with Julia and been my rock when I got bad news.  Thank you for loving Julia so well.  I know I can always count on my family, and for that, I am extremely grateful.

 

 

 

Imoms - I couldn't have done this without you.  That night, I got on the internet, and the reality of what we were facing became real.  I read about patching and contacts and knew that this wasn't going to be easy.  But I connected with you all, and saw my story in your blogs.  Then it was emails and instagram and knowing that I was never alone in this crazy EYE world.  From the depths of my soul, thank you.  I love knowing that out there, somewhere, is another mom that has experienced these emotions.  I remember that and don't feel so alone.

 

 

 

Technology - yes, this is a weird thank you, but I am so grateful for technology.  For the tiny instruments that allowed a surgeon to remove a cataract from an infant.  For the contacts and research that helps the doctors know what to do.  I know that even 25 years ago, her outcome could have been much different.

 

 

 

First Steps - I am so thankful for the OT, speech and vision specialist that have helped Julia meet her milestones.  And for the glasses!  First Steps has provided Julia with glasses that would have been very expensive for us to pay for.

 

 



Prayers - I am so thankful for the prayers from my friends, family and church.  My church family has been so accepting of Julia and her patch.  They pray for her and love her and accept her.

 



I know this is a cheesy blog post, but my heart really does swell when I think of how much we have been through in the last two years.

- 4 surgeries (with one more scheduled)
- 4 pairs of glasses (with more than 8 prescription changes)
- countless boxes of patches
- 20+ appointments with the Eye Clinic
- Thousands of tears
- Millions of smiles, laughs and hugs



Obviously, Julia is no worse for the wear.  She has come through everything like a champ, and I am sure she will continue to tackle any obstacle that comes her way. 

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!