G's Eye

Haven't provided an update in a while.  I don't want to bore you with the "same old," but we still need prayer for the "same old."

The eye has some irritation (which could hurt the retina).  Eye drops help the irritation but cause heightened eye pressure (which can eventually lead to blindness)  Eye drops #2 are supposed to lower the eye pressure but haven't been doing enough.  Eye drops #3 have recently been added to the regimen, trying to get that pressure down into a safer zone.  The pressure has been getting a bit lower, but the irritation has been increasing. 

Would love to see healing for this eye.  Thanks for praying!

G's Medical Insurance

I like G’s medical insurance plan.

 

Too bad I can’t keep it. 

 

The good policy we have is being eliminated.  Looks like I can start paying more money for a plan that covers less.

 

Thanks for nothing, “Affordable” Care Act.

 

If You're Praying for G's Eye

We saw G’s retina doc again. 

 

There is a prayer request, but I don’t think it’s due to the punch-in-the-eye that G received.

 

We seem to be in a catch 22.  G had been having dangerous irritation in his eye, so he was put on pred forte eye drops.  Those successfully cleared the irritation  but they were causing his eye pressure to skyrocket.  Normal eye pressure is around 15 (I think).  G’s pressure was up over 40.  So the docs changed his eye drops.  That got the pressure down around 23, but the irritation is concerning the docs.

 

It’s all concerning to me.  Appreciate the prayers!

Celebration

I’m planning to do G’s full card-opening love-lavishing celebration this weekend. 

We were also going to recognize the actual “half-your-life” turning point during the week. 

 

Instead, the babysitter greeted me after work with news that G had been in a scuffle with another boy at the park.  The boy ripped off G’s goggles, grabbed & wrenched his eye (leaving scratches on his cheek) and then punched G in the eye.  His damaged eye. 

 

What are the odds?

 

Really.  Is that even possible?  Some kid assaults G… by zeroing in on his injured eye?

 

It was back to the ER for us.  As we neared it, G said “this is my favorite hospital.”  Should a kid have a preference between hospitals?

 

I whine about our hospital familiarity even while I know that we are very fortunate to have had access to multiple excellent hospitals.  And fortunate that an eye injury is our biggest problem.

 

So.  With that attitude adjustment, I am very grateful to report that G’s retina appears to still be attached.  We’ll go next week for a re-examination.  Your prayers are always appreciated!

 

And G’s “half-your-life” was celebrated in a fitting way – popsicles at his favorite hospital. 

 

Eye Update

We went to G's retina doctor yesterday morning.

THREE HOURS LATER...

He seems fine.

Some scarring in the eye will need to be watched.  Some inflammation means that he has to resume the steroid eye drops.  But, overall, the retina looks fine.

I wish we could have determined the "fine-ness" in less than 3 hours, but - it's good news.  I'll take it!

And G is thrilled because he can JUMP.  How many months now has he had to be still?  Since the surgery in October?  He jumped all down the hallway out of the doctor's office.  I don't think the boy cares if he goes blind or not; he just wants to MOVE.

So - jumping is allowed.  Running and playgrounds are back in the repertoire.  Once I buy him some prescription goggles, then riding a bike will be allowed!  We're still waiting for an ok to play with balls, and then you will surely hear G's shouts of joy.

Please continue to pray for the healing of G's eye & restoration of his vision.  But feel free to celebrate with us too.

We Made It

Wouldn't you know that G's cold cleared up just in time for this morning's procedure?

Another miracle.

It was quite the smooth experience.

His surgeon said that the retina looks good - yay!

Scar tissue has formed "in the middle" - boo!  I wish I would've asked more questions on this one.  We've learned that scar tissue can pull up the retina.  And we've learned that the middle of the eye is critical for vision.  But maybe she meant the middle of his lens.

Anyway.  She doesn't want to see G for another 2 months, which I took as a good sign.

It's enough for me to celebrate tonight.

More & more, G's eye is teaching me not to worry about tomorrow. 

And that's another reason to celebrate.

Plea and Praise

G woke up this morning and laughed: "Listen to my voice Mama!"

He's congested and thinks he sounds funny.

I'm not amused.

His procedure is coming up in just a couple of days.  He needs to be healthy if he'll be allowed under anesthesia.

PLEASE pray that he gets healthy in time.

We did get to see different doctors this week.  They said that his eye pressure is up to 11 (it had been way too scary-low)!  He has vision in the bad eye... 20/125... and it may still improve!  They kept saying that his progress looked "good."  I kept thinking it seemed "great." 

That's the update.  Please remember to keep praying.  Thanks!

A Cold

G started back to school last Monday.

Today it's definite - he's coming down with a cold.

We have 2 weeks to get him healthy so that he can have his next procedure (a "peek" under anesthesia).

I've got the sleep, water & vitamins flowing.

Are you up for some more praying?

G's Doctor Report

Last week we saw the cataract surgeon.  He said things looked fine, but we'd have to wait to see the retina surgeon.

Yesterday we saw the retina surgeon.  She said things looked fine, but we'd have to wait to see the other eye doctor (opthamologist?).

What I want to know is: When do I get to actually celebrate?

Cause I'm ready now.

The doctors' mild response confuses me.  G's retina seems to be attached.  There are no signs that debris fell through onto his retina.  His eye seems to be healing well.  This all sounds good to me.  Like: "jump up & down" good.

Do you wanna jump with me?

Alternately, you can wait until next week when we see the opthamologist.  And the week after when we see the cataract surgeon.  And later when G has another examination under anesthesia.

But at some point - we are going to jump.

Surgery? What Surgery?

This kid could wear out the Energizer Bunny.

(Soon after returning home.  I've got him set up to lie down & watch movies.  Instead, he's bouncing around.)

Surgery was yesterday morning.  By evening I was back to singing my interminable chorus of "calm & still; please walk!"  Sheesh.

But since that's all I have to complain about, I won't complain!

Everything seems to be a miracle.

G was healthy for the procedure. 

The cataract came right out. 

There was a hole in the bag, but it was small.  The surgeons don't think any debris fell through it onto G's retina. 

The hospital had the correct lens in stock and they were able to install it straightaway. 

The retina seems to still be attached.  

The retina's attachment will (hopefully) be confirmed next week.  I'm told that everything hinges on the retina at this point.

For now - He seems to have some sort of vision from that eye!!!

I know many of you were praying.

Thank you God.

Preparation

Pumping this boy full of lots of goodness... attention, water, sleep, and spinach/blueberry smoothies.

And hoping that lots of friends are praying for his healing.

Surgery Bound

Our long-awaited surgery will happen this week.

If you are up for praying, here's the request:

- Healing for G's eye and full restoration of his vision

If you're up for some more praying, here are some other requests:

- G would stay healthy this week.  I've tried to keep him sheltered from illness.  Not Easy with a crawling-under-tables, hands-in-the-mouth boy.  He must be healthy to proceed with surgery.

- There to be no negative impact from the hole in the back of G's lens.  That it would miraculously close before surgery.  Or that debris would not fall through it back on to his retina.  Or whatever.

- G's retina would hold firm.  He had a normal (very scary) fall this weekend where he banged his chin.  Between that and the surgery.... We just need for that retina to stay attached.

- The new lens would be in stock at the hospital.  If they have it, they will be able to attach it straightaway and avoid another surgery.

- Wisdom for the medical team.

- Calm and peace for G during the recovery.

- G's brain to still be trying to connect with that eye.  We need to pray that the brain hasn't given up on it!

I know that's a lot.  Feel free to stick with:

- Healing for G's eye and full restoration of his vision

Thank you,
Heidi

Sight

I’ve realized that I am in denial.

I ask people to pray because G’s sight is in jeopardy.

But –inside- I don’t really believe that it’s in jeopardy. I believe that we’re praying and God has given us good doctors and He’s going to heal G.

At the very core of my being, the only outcome I can imagine, is that G’s vision will be restored.

And yet…

Last week I found myself driving long distances. And I was thinking:

What does G need to see now? What do I need to show him so that – if he loses his sight – he has that memory?

Mountains
Waterfall
Redwoods
Ocean (again)
Whale
Baseball game
Wedding
Major train station

I realized that I was thinking like a girl and added: Football game.

But, I’m just thinking like me. How do I know what G would want to have seen?

What would you put on the list?

It’s hard to wonder. It threatens my denial. I want my denial.

But what would you put on the list?

"Guarded"

While behavior has been improving, the eye.... not so much.

A cataract has formed and is blocking G's vision in that eye.

Yesterday we met the cataract doctor.  Our retina doctor asked him to take G.  Multiple people have told me he's "the best."  He seemed kind & knowledgeble.  I liked him. 

I didn't like what he had to say.

We must be guarded about G's chances of recovering vision in that eye.  We are uncertain what kind of vision will result.  It has been a long time since G has been able to use that eye.  The brain begins to ignore vision from an unused eye.

Much will depend on the retina's health.  At this point, due to the cataract, we cannot see the retina.

The cataract is a clouding of the eye's lens.  It's like a cellophane bag, with protein inside.

G's cataract is not the usual situation.  His doctors suspect that there is a hole at the back of the "bag."  The problem is that when the surgeons enter from the front, then the lens material could fall to the back.. through to the retina.  Of course, G's retina does not need any more damage.

The lens material could be small & thin, and absorbed on its own.  Or it could get inside and cause an inflammation.

Once the lens is out it will need to be replaced with an artificial lens.  Lenses have different powers.  G's eyeball will need to be measured to determine the correct lens, which is not easy in a little boy.  9 times out of 10, the hospital will have the correct lens in stock.  Occasionally, they will have to order the lens and complete the surgery without it (requiring another surgery).

We need to set small goals.  Our first goal is to get that cataract out.  After that, we can reasses.

The cataract surgeon is booked through Christmas and is out of town the week after Christmas.  He had seen two other children yesterday, but will get G in for surgery before them.  We are probably looking at the first week of January.  I'll learn the date this Friday.

That is the total of all I know.

So many people are saying they are praying for G.  I hope they really are.

The Eye: Where We Are

To recap where we've been recently:
1. G's retina was detached
2. Surgery
3. Calm & still.  No being around other children
(including the babysitter's children).
4. Still detached
5. More surgery
6. More calm & still; no other children.  Plus
mandated staring at the floor all day every day.
7. Six miracle days of cooperation
8. Six days of... misery

We had been trying G on a medication to help him achieve "calm & still."  That, along with your prayers, brought about a miraculous post-surgery window. 

Unfortunately, that window closed.  I wrote about the struggles that we have been having.

On Sunday we discontinued G's medicine (and you all prayed some more), and he's now had 3 terrific days!  Terrific in spite of us having to wake early for doctor appointments.  Terrific in spite of us returning to "scrambling for babysitters."

We're back to "scrambling for babysitters" because
(1) I returned to work.  I'd rather be home with G but, you know, a paycheck is nice too.
(2) Our regular babysitter quit.  I understand why.  G hasn't been able to go to her house and I haven't been able to pay her and, you know, a paycheck is nice.  But (sob) I thought we were almost back to "normal!"

This week we have 5 different sitters lined up.
Good news: This covers the whole week.
Bad news: G usually does much better when life is consistent.
Miraculous news: One of the sitters is a prospect to replace the sitter who just quit!

I will die of thankfulness if God provides a new sitter for us just that easily.

Oh - and you wanted an update on the eye -

The retina seems to be ... attached!

Attached, y'all!

We'll see if that continues.  The gas bubble dissipated more quickly than hoped for, which means it wasn't able to press & hold the retina in place as long as we wanted it to.

Also, it's hard for the doctor to see into the eye really well because G's eye has developed a cataract.  I guess that is serious because it's blocking vision in that eye.

Did you know that at age 5, a child's brain is still learning how to receive & process vision from the eye?  Vision is still developing.  Aren't our bodies amazing?

We can't have G's "visual development" blocked - I think because it would risk his brain discontinuing trying to connect with that eye.  Don't trust me; ask your doctor.  Anyway, he will need to have a cataract surgery soon.

Yes, I'm still typing.  Mercy.

SO - we have been cleared to stop the "facedown" (staring at the floor) part of recovery!  Halleluiah!

We do need to continue the "calm & still" part.  This is proving to be a challenge because
(1) He's so happy to be feeling better
(2) He's a 5-year-old boy

The child doesn't sit and play cars.  He bounces & flops and plays cars.

Oh, how I want that retina to heal.

Won't it be amazing if G's eye is saved?!

Thanks - again - for praying.

Sacrifice & Love

I spoke (wrote) too soon.

That first six days of post-surgery peace were a miracle.

But no sooner had I written about it, than G's internal switch flipped to "fight."  He literally turned to me and said, "I gonna fight you," and we were back to dancing - trying to help him maintain his peace.

At one point, he was thrashing out with everything he had.  Normally, I would sit and hold him on my lap and help him ride it out.  Instead, I was trying to keep him facedown, for the sake of his eye. 

Picture me lying on my back, hugging him to my chest, while he's rampaging.  He has no comprehension that with every "fight" he is putting himself at greater & greater risk of losing his eye.  I, of course, have full comprehension, but I can.not.stop.him. 

I can try as hard as possible to communicate the risk to him.  I can stretch in every way to create an environment that sets him up for success.  As he succumbs to meltdown, I can hold him.  I can choose to hug him through every blow so that he recovers with the least damage possible.

I can try to do everything in my power to protect him.  But I cannot stop him from hurting himself.

I try not to post the ugly on our blog.  Everyone - all of us - have ugly that we choose & experience.  This ugly is not who G is.  It's just what he's having to get through now, as any of us have personal struggles to get through.

However, G is providing me with such a profound life lesson, that I feel I have to share it.  I want you to learn with me.

As I mother G through this time, I cannot escape thinking about Jesus.

When he lived on earth, Jesus considered a path that would cause him great pain, a path that may have appeared impossible.

He weighed it against his love for us.

He chose to step into it.

Without a single complaint.

He poured out a gift of love.

Living a patient life, teaching, providing example after example.

Sacrificing, even accepting death on a cross.

Because I didn't get it.  I don't get it.  Time & time again, I make wrong choices.  I do what I should not do.  I fight to do the very things that are condemning me.

And, in spite of all that, Jesus loves me fully & completely.  He sacrificed everything so that I could have life... a life I could not attain on my own.

As I would do anything for my son, as best I can, even as he fights against himself & against me... Jesus did everything for me.  Perfectly.  He saved me. 

He offers this free gift to everyone who is not at peace, to everyone who wants it.

I'm learning about sacrifice.  About love.

I'm grateful for that.

Surviving Eye Drops

Since I've already confessed that we're doing nonstop t.v. viewing....

Perhaps you recall the eye drop battles that we used to have?


No more.


Mr. Compliance is in the house.


What has brought about this change, you ask?


Sugar.

G gets one Mike & Ike for every successful eye drop.


Over a dozen candies each day.


Breakfast time, bedtime, all the time.


Sugar.


Whatever it takes, people.

He's Doing It!

So, about this "surgery recovery" thing.

You know, the "keep your maniac 5-year-old calm & staring at the floor" thing.

I would NEVER have believed that we could be doing it.

But - miraculously - it's happening.

I'm not a huge fan of t.v.  In the almost 2 years that G has been home, we've not watched a single t.v. show or movie at home.  For us, t.v. didn't seem like the best use of our time.

So, we've been to the library, and have looked down while reading 100s of books.  100s.

We have looked down while playing play-doh

...and while playing in a bin full of rice

 

... and while playing with baby shampoo goop

... and while creating fabulously disgusting concoctions

 

... and while watching as many movies as humanly possible.

Yes, movies have taken over our lives. 

We used Joseph's laptop while he was home. 

Now we're using Aunt Kirsti's DVD player. 

And we are using it all. day. long.

Hooray for movies.

Whatever it takes. 

We are looking down.

Please continue to pray for us.



Surgery Update

Surgery lasted more than 5 hours.

G's surgeon said G had a lot of scarring in the eye, which she "cleaned up."  She tightened the scleral buckle that was put in last month.  She re-attached his retina, and she put down more lasers (to help it stay down).

Now begins the hard part... "positioning."

It will be critical for G to remain facing the floor at all times for the next 10 days (he'll do the positioning for longer than 10 days, but that is his critical window).  I'm going to try him sleeping with me tonight so that the night-time positioning checks will be easier on me.  At least, that's the theory.  We'll see if I get any sleep with that kicking monster in my bed.

I'm off to try for sleep.  We just got home, and we need to leave for our check-up appointment at 6:30am.

Thanks for all the support!

Flux

Still waiting for a surgery date.

Still scrambling daily - hourly - for babysitters.

As G's life continues to be in flux, he continues to ... react.

His ... reaction ... caused me to miss more work yesterday.  I'm officially in the world of unpaid time off.

But how about a spot of sunshine from the weekend?

Yes, that's G.  Eating guacamole with a fork.  Proof that flux does include good times too.