Big Day...

When the appointments for Parker's eyes were scheduled it seemed like July 9th was so far away.

Well, here we are.

This afternoon we meet with the Retinal Specialist to talk about what he thinks we are dealing with in Parker's eyes.

In some ways I want to hurry up and be there and in others I am dreading sitting down to hear the news.

We could really use prayer.

Parker on the other hand just continues to amaze us.

The other day I found his journal from school tucked into his bed.

In reading through it I found this:

It says, "I will be joyful in hope as I wait for God to heal my sisters."

Yesterday, as we pulled up to church we saw a new little pagoda with some benches.

As soon as he saw it Parker shouted out, "Oh cool! A place to sit and talk about Jesus!"

He just amazes me.

I am learning to slowly surrender.

The Lord keeps whispering "I will never leave you or forsake you."

This may not be a road we have chosen,

or one we are strong enough to walk,

but God is strong enough.

He will be our strength.

Never will I leave you;
never will I forsake you.

Hebrews 13:5



He did it!!!!!

I have a new hero....

and it is my son.

Today he honestly did what I am not sure I could have...

it was scary for him,

but whenever he was scared he asked me to pray.

The ERG tech said she has done this test on thousands of children and he was the 2nd 6 year old who has ever successfully done this test un-sedated.

It was so long and had 2 extra hours of retinal photos that we did not know about.

He sat on his knees holding absolutely still, focusing on one point, not moving for 4 1/2 hours total today.

I am beyond words proud of him.

 Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us,  to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen

Ephesians 3:20-22



Today is Robot Eye Day!

We are up and getting ready to head out for Parker's Electroretinogram

this test is much more invasive than the last.

Could you specifically pray for:

* Eye drops: He has to have multiple rounds of eye drops, some of them that will sting. He has to be able to open his eyes so we can get them in. We have been practicing with saline but could you please pray that he remains calm and we can get those drops in?

* Once the drops are in we have to sit in the dark for 45 minutes while his eyes dialate. He is a little bit afriad of the dark, can you pray for peace?

* For the test they will place a contact lens that is surrounded by metal caging onto each of his eyes (at the same time). This has wires coming out of it and looks pretty intense. Could you again pray for peace? He has to be willing to open his eyes and let them put the "robot eyes" onto his, can you pray that he will be brave?

* Those stay on for hours making it so that he cannot blink while they flash a series of bright lights into his dialated eyes. Please, please pray for the room to be filled with peace during this!

* Then could you again pray that his joy and innocence be protected? That he will be free of fear? That I will be peaceful too :)

* Finally, prayers for clear results. They have said that it is possible to go through all of this and still not find a diagnoses.

Well....off to our next adventure and SO thankful that we are not alone.



I Stand Amazed

Thank you all SO much for praying!

Yesterday was long for sure,

but Parker was a total trooper.

He honestly amazes me.

He leapt, ran and giggled his way through the hallways like this was all the greatest adventure ever.

The test was hard for him.

It was with an adult machine so he had to sit up on his knees, holding perfectly still, keeping his eyes fixed on one point with his head in a machine for over an hour.

About halfway through he was ready to be done but he dug down deep and kept going.

At the end he gave the tech a big high five and leapt on his way!

He can hardly wait for tomorrow and his 'robot eyes'!

My favorite part of the day happened while we were waiting for our appointments.

He has been listening to Adventures In Oddessy and in one of the episodes there is a line where a man is trying to tell a not so scary ghost story and says, "there was a man without a head, no too scary, without a thumb...but nothing bad happened, he was just born that way, it was a genetic problem."

Interestingly, Parker has latched onto that line these last few days.

So yesterday he looked up at me and asked,

"Mom, what is a genetic problem?"

I told him that when we were formed in our Mama's tummy something in our genetic code made our bodies a little bit different.

He jumped up, eyes huge with excitement and said, "Like my blurry eyes?"

I nodded and said, "and the bones in my legs and feet that are turned different."

Then he asked, "What about Georgia's heart?"

"Yep."

"...and Ravenna's blood?"

"Probably."

He again stood up, pumped his arms in the air as if he had just scored a touchdown and said,

"Oh Mama...that's SO cool. What about Dad? If he has a genetic problem too we could change our name! Instead of the Miller family we could be the Genetic Problem family! That would be SOOOOO AWESOME!!!!"

Seriously.

I asked some of you to pray that God would preserve Parker's joy and innocence through this process....

and yesterday honestly seemed miraculous.

On the way home, it got me to thinking....

How often do I choose fear over joy? Why is it that I worry so much?

Parker walked through that whole appointment with complete trust, even celebrating his blurry eyes in the midst of it all, joyfully sitting still with numb feet even when he got tired.

I am humbled and amazed by my little son and find myself praying this morning that I can be more and more like him.

Therefore, whoever humbles himself like this child is the greatest in the kingdom of  heaven

Matthew 18:4

Parker Update!

Thank you SO much for praying and for your kind words...

Parker with his latest invention!

We are definitely on a journey with our little guy,

grieving a lot and learning anew how to surrender and trust

that God is GOOD in the midst of this.

We are praying hard for complete healing of his vision

and also seeking the best medical help we can find.

Already God has been so faithful in coming near and encouraging us, showing us that we are not alone.

Last Monday I talked with Dornbecker (a Children's hospital in Portland, OR),

the intake gal said,

"I hate to tell you this but the Retinal Specialist are now scheduling appointments for 2013"

2013.

How could that possibly be? Some of the conditions that fall under Retinal Dystrophy can progress to blindness in 6 months.

If Parker is losing his vision we want to know so that we can pack everyday full of sights that he will never forget!

So again we wept and cried and prayed.

Two days later, I got a call from another lady from Dornbecker...

saying she looked at the schedule again and if we would be willing to do the visit in 3 seperate chunks she could get the testing done by July 9th!

So...next week will be a big one.

July 3rd Parker will go in for a comprehensive visual field test.

July 5th he will have an ERG (electroretinogram)

July 9th we will meet with the Retinal Specialist and a Genetic Counselor!

It is a scary road but we are SO thankful to be on our way at least to initial answers so quickly!

Thanks again for praying!!! Please keep it up!!!!



Our Little Guys Eyes-Please Pray

Would you mind praying for us?

Our little Parker has been having some vision trouble...

his vision blurry even with his glasses on.

I took him in to the Optometrist and his prescription has changed a lot...

and his retinas look "suspicious"

So we are being referred to a Genetics Clinic with the thought that he has some form of Retinal Dystrophy.

Some Retinal Dystrophies are fairly mild and some progress to blindness.

We are trying hard not to fear and to keep our eyes on the Lord.

But honestly we could use a lot of prayer right now.

So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.

2 Corinthians 4:18