be thou my vision, oh Lord of my heart / by Carey

After Nathan was born, I always had this nagging back of my mind feeling that something was wrong with him.  Health wise, bad wrong.  And I just kept waiting for that shoe to drop.  When he was two and we were having less than solid poop issues.... I thought we had entered that arena.  But we hadn't.  It was just toddler chronic non specific diarrhea, and easily, easily solved by ensuring he had mondo fat every time he ate.  It was a relief (and he did outgrow it by around 4).  But I still had that looming, nagging 'something's wrong' feeling back there in my mind.  I couldn't urge it away.

I chalked it up to my super hero powers.  You did know that I'm Anxiety Girl, didn't you?  I have my own tshirt, for goodness sakes!  They made a mistake on it though -- she is supposed to have blond hair.

Then Cora came along.  She seemed perfect.  I could never understand it, but I just didn't have those same anxious feelings about her health.  I had absolutely no reason to think anything was wrong with Nathan (other than Dr. L telling me there were 3 things 'wrong' with him during his first pediatrician visit, all of which resolved fairly quickly).  And I spend so much time worrying about stuff as it is, I just didn't put any energy into worrying about Cora's health.  She seemed just fine, and despite all of her efforts to NOT consume food, she still grew.  All was well, right?

I first noticed her eye before her 12 month visit.  Dr. L had us "watch" it.  When it was still occurring, and occurring more frequently, at her 2 year visit, he thought we should visit a pediatric Ophthalmologist.  I should have asked for a specific recommendation then.  I didn't.  I just googled one here in town, made the appointment and we went.

That was the doctor who used the phrase "fight like a wild cat" while referring to Cora.  Needless to say, that visit went reaaaaaaal well.  What we had observed was Cora's right eye wandering off to the right, wandering out.  She mainly did it when she was tired, or when she was looking off into the distance, zoning out, or watching tv.  They determined that her vision was just fine.  That it was a muscular imbalance - her outer eye muscles are stronger than her inner eye muscles, thus pulling the eye 'out' - and we could attempt vision therapy with her.  Take an object, get her to focus on the object, and slowly bring it toward her nose, ensuring she stays focused on it until her eye popped out.  For fifteen minutes a day.

Let's just say that went SUPER well with an impertinent, independent 25 month old.  I cried more than a  few times out of sheer exasperation.  We tried it with m&ms.  She'd do it a lot better for Shawn than for me.   And eventually we stopped.  She just flat out refused to do it.  The doctor didn't seem overly concerned at this point - it was just something to do with her if we could.   We could revisit the path forward during her next year at the year mark in July.

Here you can see her rubbing her right eye.  She does this alllllll the time.  And here you see her eye rolling out.  I searched for 45 minutes for a photo that showed her eye doing this - and this one, where she is picking her nose - is what I find.  Oh well.  And then, you see her squinting her eye, which she also does alllll the time.

Fast forward to April/May 2011.  We noticed her eye doing it a LOT more.  Very frequently.  Very often.  And not just during the times we could explain off before.  She was often squinting and closing her right eye altogether.  Plus, any time we were outside she had that eye closed.  Period.  At first I thought it was a growth spurt.  She'd done that once before since her visit, but it stopped after a week or so.  But this time, it didn't decrease.  It was so alarming to us that we didn't want to wait out the year to see the Ophthalmologist again.  We made an appointment for the first of June.

She did a lot better for this visit than the first one, but they still were unable to get a 'picture' of her eyes with the machine she has to put her chin into and "look" inside.  We tried for a long, long time.  Once the doctor examined Cora, she decided that since it was only getting worse, that we should put her into glasses.  That the eye's focus mechanism is related to the muscles.  If we purposely made her nearsighted, she'd have to turn her eye in to see, thus forcing her inner muscles to strengthen.   So we purchased two pairs of glasses.

She has always HATED having anything on her face.  And she fights with tenacity every single time we ask her to wear her sunglasses.  So I was, of course, super excited that I was going to get to fight this battle all day long every single day.  woohoo.  NOT.

Cora has done better than I would have ever expected, though.  She constantly asks to take them off  -- "pease take a break now??"  But we have only had one major temper tantrum episode with it.  There have been tears, but it has just gone so much better than I could have dreamed.

At first, we never noticed her eyes doing it with the glasses on.  But then I started seeing it.  So did Shawn.  Then I started noticing her LEFT eye doing it...

I've always loved how God works his puzzle piece magic.   A close friend's son, who is about Cora's age, was recently diagnosed with Amblyopia and is now wearing glasses to correct it.  Another friend has an older son who has had similar issues and did the glasses, patching, eye drops and surgeries.  How ironic that I'd have these two local resources at my mommy disposal.

But then, when Shawn got a new employee into his group at work.... I really started to feel that God was trying to get our attention.  I couldn't ignore it any more.  This new guy in his group has 3 children, one of which is just a baby.  His wife had the same condition Cora has growing up, and has had MANY surgeries to repair it.  Both of the two older children suffer with it, or something similar and they have done the glasses and patching.  They visit a super specialist in New Orleans to handle their care.  And this dude kept emphasizing the Shawn that correcting these things early was critical.  And that 3 is really on the upper end of being able to fix these things.

Which is what I read when I did my research into all of this.  In fact, I had purchased adhesive Krafty Patches before her first visit at the local Ophthalmologist.  Dr. Ley had already identified what he thought was wrong, so I knew what the treatment would be.  I was a little surprised when she told me at that first visit that patching wouldn't help her...  but I obeyed.  I deferred to the wise local Ophthalmologist.  Stupid Carey.  Stupid, foolish Carey.

I have never "liked" this local Ophthalmologist.  I can't really put my finger onto why.  I've tried to explain it.  I can't fully.  She has a horrible bed side manner.  She acts perturbed by your presence and seems incredibly rushed, though no one else has ever been in the office while we were there.  But I find it difficult to blow off a doctor, a supposed expert in her field, because I don't "like" her and wouldn't want to spend an afternoon at the pool with her.  I didn't want to blow her off because her treatment path wasn't what I had expected to encounter from my research.  Because she is the doctor.  I'm not.  I'm not trained, and the internet is not a substitute for formal opthamalogic education.

And yet.  I didn't like how she dismissed me when I questioned about the patching.  I didn't like how she genuinely seemed to think I should be able to perform these vision exercises with my 2 year old (um, hello, you yourself referred to her as a 'wild cat').  I didn't like how she seemed annoyed with us every time we've seen her.  And lastly, I didn't like how she seems largely unconcerned about the situation in general.  There is no hurry.  No urgency.   We got the glasses and she asked to see us back in 6 months.

After Shawn's new employee at work was added to the picture, it was like the perfect storm.  Cora's eye is worsening, and seemingly worsening quickly.  We don't have warm fuzzies about the local doc.  We are friends with these two families who have children with eye issues that are incredibly similar.   And then this family from Shawn's work going through it who go to mega specialists.  God was trying to tell us - don't leave it at that.  I don't believe in coincidences.

I asked my favorite Dr. L at her 3 year appointment at the end of July for a recommendation on a second opinion.  I admitted to him that I couldn't tell him why, other than my mommy instinct was telling me not to leave it alone.  I wasn't satisfied with the local doctor.  He seemed as concerned as I was, since her eyes were still doing it with the glasses and told me who to go see in Knoxville.  I called and got an appointment for last Friday.  I was thrilled to get in so quickly.  Wouldn't you know it?  My two friends I mentioned earlier?  This is who they go see.  Coincidence?  I think not.

The difference between the two practices was immense.  I was actually quite shocked, in a good way.  This is obviously an expert pediatric practice!  EVERYONE we encountered knew JUST how to interact with children to get the job done quickly with as little trauma as possible.  First off, they took us to that machine with the chin strap.  Cora sat down and 20 seconds later the nice lady was leading us off to another room.  Shawn and I stopped her, asking incredulously, "did you GET it?"  She just looked at us like we were crazy!!!  Of course she did.  She didn't know that we've spent two hours of our lives in front of that machine trying to get a picture of Cora's eyes.  And that lady did it in 20 seconds flat, both eyes, no fussing, no whimpering, no tears.  IMPRESSIVE.

Everyone who worked with Cora (the muscles specialist, the exam specialist, and then the Ophthalmologist himself) blew us away.  You know what?  Dr. G wasn't oozing cozy bedside manner either, though we both loved him.  I had really beaten myself up for not trusting our local doctor just because I didn't "like" her.  But I realize that wasn't really "it".  It was a back of my mind 'you don't have it right" that I SHOULD have listened to, a prompting from my Heavenly Father.

The diagnosis is mostly the same, though not completely.  The treatment path, however is NOT.

Cora has Exotropia.  (this word was NEVER uttered at the local doctor - she just told us Strabismus).  The page I linked describes Cora EXACTLY - down to the intermittent aspect.  She does NOT have "lazy eye".  Lazy eye means that there is vision loss, which she as yet does not have.

Dr. G volunteered that we probably saw her rub her eyes a lot (which we have!), squint a lot (which we have!), and do these especially when she was outside in the sun (most definitely!).  The local doctor blew all these off to us when we expressed concerns about them.  We didn't mention them to the specialist.  He beat us to it!  The local doctor said it was habit that she was rubbing her eye, and she squinted in the sun just because of the predisposition to close one eye easier than the other, that we all have.  This really angers me.

Dr. G took prisms and SHOWED both Shawn and me what Cora is seeing that is causing her eye to roll outward.  He explained EVERYTHING to us.  What was happening.  He forced each of our eyes to do the very same thing, with the prisms.  And man, I can't blame her poor little eye!!!  My head spins now just thinking about what I was seeing through those prisms!

He also determined that it is not only her right eye, but also her left, though not to the same degree.  Shawn insists that the local doctor said this too, but I never heard that.  This also angers me.

Since we are seeing her eyes do this while wearing the glasses, we need to take further action and NOW.  Her new treatment will be patching.  She will be wearing a patch for 2 hours a day, alternating eyes, and gets to take Sundays off.  We go back to see him in 2 months.  If significant improvement hasn't been made in that time, we will pursue surgery.  But it is incredibly likely that we should be able to solve this in just two months, with this therapy.  She will continue to wear her glasses as much as possible for the remaining hours of the day.  Wearing the patch makes her other eye HAVE to work, and build up the muscles of that eye.

It is incredibly important that we correct this NOW, because if we don't , her brain WILL turn off the vision to one of her eyes, to resolve the double vision she's seeing.

The Knoxville practice was just so incredibly efficient, thorough, and just darn good at what they do - working with CHILDREN.

Tomorrow it will have been 7 days.  I cannot believe the changes we are already seeing.  She's been wearing her glasses nearly all day of every day and is finally asking with less frequency to take them off.  But even more shocking is how well she's taken to the patch.  It fits over her glasses frames.  She has done SOOOO well with it.  She isn't begging to take it off.  It doesn't seem to disorient her in the least.  She runs around like crazy like she always has, which makes me wonder how much her brain was already turning off the stimulation from one eye already.  Personally, I think wearing the patch must be somewhat of a relief to her brain.  She isn't having to physically block out the confusing stimulation from the other eye.    I'm just really, really proud of her.  She's one tough cookie.

We walked out that office on Friday morning with such a feeling of peace.  I cannot express the difference.  Although we're facing potential serious news.... we see HOPE and a path forward.   I am so thankful that we live close enough to a specialist like this.  An hour and a half to drive is just nothing for expert care like this!  And I'm so thankful that God kept prodding our hearts.

I have wanted to write all of this out since we left the office last Friday.  But life has happened and I jsut haven't got it done.  Finally today I was going to do it, no matter what.  The old hymn "Be Thou My Vision" has come to me from so many directions this week.  I couldn't ignore it.  Although I'm typically not a lover of the old hymns, that is one I do adore.  And suddenly, when I was finally able and ready to write this blog post, I logged into blogger and Itunes continued.  And I heard loud of clear

be thou my vision, oh Lord of my heart

I feel a little silly for not realizing the connection before now.  God is just encouraging my spirit.  God loves Cora, even more than I do.  He holds her in His hands.  I must trust Him, His wisdom, His timing, His path for her and for me.  Waking or sleeping, thy presence my light.

We went outside Tuesday and I took some pictures to document how stinking cute she is in her patch.