A Literal Miracle!!!!!

I am so in awe....

today was the start of a long week of hospital appointments for the kids.

A week that I thought would be grueling has me hardly able to take a breath and feeling like I am floating on air!

Some of you may remember that last year we walked through a nightmare....

thinking our son was going to lose his vision,

then finding out he had Albinism and low vision.

The things we were told:

* He had at best 20/50 vision (with glasses)

* It was anatomically impossible for it to ever improve (he was literally born without a fovea in either eye so his eyes would NEVER be able to focus better)

* He may never be able to drive

* He would need special dark pencils, classroom aid equipment etc. because he REALLY struggled with low contrast stuff

* He could not do any sports where a ball or object was coming at him

* It may not be safe for him to ride a bike much longer

We were SO excited that he would still have some vision and amazed at God's grace in that.

We started appointments with the Low Vision Clinic,

added a second pair of 'desk' glasses for up close work,

added a 'powerdome' to help him read,

added an Android tablet to help him make letters bigger....

all of these things were helping alot but we knew down the road he would probably need more help in the classroom.

So today we had our scheduled Low Vision Clinic meeting to run tests and see where we were at....

The doctor started testing....

and he kept saying, "are you seeing what I'm seeing?"

I kept nodding my head as I wiped away tears....

That anatomically impossible deal?

* He is now seeing 20/25 (with glasses)!!!

* He is seeing completely 'normal' in low contrast stuff....

* The doctor said, "I cannot even call him 'low vision' anymore....because he isn't!"

* His vision is completely in the NORMAL range in all categories!!!!!

* The doctor said that he has "no explanation" for the progress...

* We have been discharged from the Low Vision Clinic and never have to go there again!!!!!!!

I am stunned and the tears just keep coming....

For some reason God has chosen to return sight to my little guy...He has heard our cries.

I will never, EVER forget watching Parker leap down the Doernbecher hallways singing, "I'm a miracle!" to everyone who passed him by.

Praising God with all my heart!!!!!

Linking this up to Memorial Box Monday...you just have to go and Read Miss Ruby's miracle too!

http://aplacecalledsimplicity.blogspot.com/2013/05/rubys-miracle-continues-memorial-box.html

Sweet Parker Boy...

Oh how I love my son's heart...

 

he has a new friend that has entered his life,

 

a little guy about his age that has Autism.

 

He can speak little and sometimes play a bit too rough...

 

at first after playing together Parker told me he didn't want to play with him again....

 

which spurred on discussions,

 

about Autism...

 

about Albinism...

 

about heart defects....

 

and why our bodies to not be perfect...

 

and what Heaven will be like...

 

Tonight, out of nowhere,

 

Parker cuddled up with me and said,

 

" I wish I could speak the language of Autism so that I could tell my friend how much I like him."

 

I am blessed beyond measure.

 



A Whole Lot Of Catching Up To Do....

Phew...life has been busy and oh so fun around here! In an attempt to catch up here are a ton of pictures:)

 

So here is a little glimpse into our summer...in between the 6 hospital visits with 4 different specialists!

 

glow in the dark "super power goo" thanks to Pinterest!

Peek a Boo at Stonehenge (in Washington)

Love this girl!

Roasting sticks in life jackets...you know safety never takes a vacation...

Cathching wild frogs in her shoes...literally!

beauty...

Who is this kis???

I sense a theme here...

 

Caving with this handsome guy!

My favorite part of camping...snuggles

We became a family of 7 for a week while our friends were in Ethiopia processing their adoption!

Parker's new powerdome to help him see the letters

Isn't that cool???

Loving her dinosaur

All tuckered out...

Handling a 104 temp and an ER visit like a champ!

(even came home with the IV in!)

Growing into a beautiful young woman so fast!

 

There are more to come but for now even looking back over these I am in awe of how much God has blessed me so much with this crazy crew!!!!

Parker's Thoughts....

This has been such a great week. It feels like the first time we are able to just soak up the summer!

We have played on the beach, picked raspberries, had yummy ice cream, sleepovers and stayed up way to late watching movies in the park!

At the end of each day I have this deep thankfullness for a simple summer day, for the laughter of my kids and how good life is.

That is just one of the gifts we are discovering on this side of things.

What are the others?

Well...I want to share one today that really deserves to stand on it's own.

I sat down with Parker the day after we found out about his diagnosis and explained to him the whole story...

How the doctors thought he might have had something that could make him go blind...

How thousands of people were praying for him...

About Albinism and what that will mean to him.

He looked up at me with those giagantic green eyes and said,

"You mean I could have gone blind?"

I nodded.

"Now I'm not going to?"

Again I nodded.

"And tons of people were praying for me?"

He then jumped up grinned and said,

"So I'm kind of like a walking miracle huh?"

later that day he snuggled up with me and said, "Mama, I'm so glad that all those people prayed."

Yesterday I overheard him telling his friends, "God has given me really special eyes and He has a plan for me with them."

Oh my heart.

I am so challenged that sometimes our struggles become the thing God can use the most. I so want to protect my children, to give them only joy, to shelter them from anything hard....

...and yet the Lord keeps reminding me that He is the one who has good plans for them, He is the one who created them and His plans come far before mine and are far more beautiful than I could ever imagine....

I can only begin to imagine how knowing people prayed and God came so close will affect Parker's whole life...oh me of little faith.

God is SO good.

I get the sense that through Parker's special eyes God is inviting us into something incredible....

My prayer is that our whole family will be forever changed.

For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.

Jeremiah 29:11

Re-Emerging

  This is one of those times where I feel like there is so much on my heart, that the words are so close...but somehow they fail. Oh there is so much I want to say....
     During the last month when we thought that there was a very real possibility that Parker could lose his vision (and possibly more), I felt like we were living in an alternate reality. I would look around at families going about their days seemingly so simply, their kids so healthy and I felt like it was something that I could not grasp anymore. That reality had finally slipped through my fingers and along with it our whole reality was changing. I kept getting the image of being submerged in a pool. Did you ever do that when you were a kid? I used to love to go down under the water and look back up at the world. It felt so surreal to know what was up there but to have every sight and sound changed. That is exactly how I have felt for the last few weeks. We had been plunged into the deep end and there was no way to come back to the surface. I just could not make sense of, grapple with or fingure out how to be strong enough to walk the road that was unfolding before me.

The day before our appointment to find out Parker's diagnosis was a Sunday so we headed to church. In some ways I was really dreading it because I just could not stop the tears. At Parker's last round of testing, I was able to see his chart laying on the counter. It had a diagnosis on it that would have been progressing to blindness, deafness and battling diabetes. I was terrified.

As the music began, so did my tears and something in my heart finally broke flooding my emotions out...pouring out my fear and grief to God. I cried and cried and then cried some more stuck in a place of wanting to be strong enough and yet feeling like this was just too much, God had finally given us far too much.

Then, it came...a song that has spoken to my heart so many times. A song that made me love Fridays because the Elementary kids would have chapel and they would sing this song. I loved nothing more than to sneak into chapel and watch as my children sang about how God is stronger. If you are not familiar with it, the song is by Hillsong and some of the lyrics go like this:

There is love that came for us

Humbled to a sinner's cross

You broke my shame and sinfulness

You rose again victorious

Faithfulness none can deny

Through the storm and through the fire

There is truth that sets me free

Jesus Christ who lives in me

You are stronger, You are stronger

Sin is broken, You have saved me

It is written, Christ is risen

Jesus You are Lord of all

   As the words began to sink in to my heart, I looked over at Parker. He was in a different aisle because part way through the service he wanted to go and be front and center. There he was, looking so small, his blond hair shining...with his hands lifted in the air singing with all his might....and I heard the Lord whisper, "I have placed you on this road because you will care for Parker's passion. I will not leave you or forsake you. I will never let go."
   Slowly I began to see the road again, but this time I did not feel so alone. Yes, I still could not tell where it would lead but I knew who held my feet firm, and that those hands would never, ever let go." So, ever so slowly, I began to surrender. "Lord, I give you this journey...Lord, I give you the appointment tomorrow...Lord I give you my son." You know what happened? Once again, ever so slowly, peace began to seep into my soul. The fact that we had a scary appointment the next day did not change, where this road led was still un determined but I could look and see and stand again on the promises of the One who never lets go.
   So as we slowly re-emerge from the deep end, I feel like it is my vision that has been changed. Yes, we do have things to walk through which are different than we thought. There are things to rejoice in and some things that may bring grief. We now still have three children with significant special needs. Amazingly, the thing I feel the deepest is that sense of my feet being placed on solid ground. They are safe, I am safe come what may because I am held by One who never lets go.

I waited patiently for the Lord;

he turned to me and heard my cry.

 He lifted me out of the slimy pit,

out of the mud and mire;

he set my feet on a rock

and gave me a firm place to stand.

 He put a new song in my mouth,

a hymn of praise to our God.

Many will see and fear the Lord

and put their trust in him.

Psalm 40:1-3

So not what we thought...in a good way!

OH my goodness,

I am exhausted but want to write to thank each of you that prayed for us today!

Today was beyond miraculous.

Parker went through about an hour of tests,

and right before they normally do dialating drops the tech said that the doctor wanted to look at Parker's eyes first.

The doctor looked a Parker's eyes for about a minute, turned to us and said, "Yep, I'm sure I've got a diagnosis."

We both just stared at him for a minute...stunned.

Then he said, "He has Albinism and it is not progressive."

Then he left the room so the tech could get the dialating started...

Doug and I stared at each other in disbelief,

then held each other and wept for joy.

I think I am still stunned.

Our little guy has a mild form of Albinism.

The vision loss he has is permanent but it should not progress any farther!

He will have some genetic testing soon to figure out what kind of albinism he has and we will start meeting with a dermatologist periodically....

we will have to be very good about sunscreen, dark glasses and hats...

but the retinal specialist?

Wants to see him back in two years!

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 3:20-21

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