We Pray for Miracles

I've recently met a new friend 

with a very tiny, very sick little boy

his name is Brody

he was born at 26 weeks

he weighed 1 pound 2 ounces (same as Addison)

the needs are great

a long journey ahead

his sweet momma, daddy and sister are hurting for him

his lungs weak

his body small and vulnerable

a mighty miracle needed

join me before the throne on behalf of Brody and his family

Journeying On,

Hundered Acre Wood

Welcome to Hundered Acre Wood

Tiger and Piglet enjoyed staying home and passing out candy with family

They invited their favorite super hero over to help

Then enjoyed some treats of their own

Ethan played his role as Tiger very well

While Addison was rather sad she didn't have a tail of her own

Hope you enjoyed some time being silly with friends and family!

Journeying On,

Silly Faces

Can you say personality?

This girl is full of it...

and not camera shy:)

Cherishing these silly faces

and the energetic heart behind them:)

Journeying On,





Perspective

For the last few weeks I have been attempting to organize and back up all of our pictures and videos, which has been a long process.  Part of me is sad that it is done from behind a computer.  I think I would enjoy sorting piles of memories, while sitting on my living room floor.  But the digital world does seem a little more efficient:)  As I was sorting, I ran across a couple of videos that deeply encouraged my heart. 

You see, we're still fighting the battle of eating in our home.  We try daily, and fail often.  My heart is frequently discouraged over this, wishing for a secret method that work at every meal...

But God desires my heart to learn patience...and I have a long way to go.  Of course, I wish he didn't need to use my children to teach me this, but it's not the first, nor will it be the last lesson He teaches me through them.

This was taken almost one year ago...

Not a big fan of food in his mouth

This was taken last week...

So today I'm choosing to look at the big picture...

to see how God is working over time...

as strength and healing are brought to their little mouths, throats and brains...

hoping my heart remembers, and holds on to these miracle moments...

Journeying On,

Tests

For the past two months Ethan has been having his blood work checked every two weeks.  In all honesty, doctors were expecting his counts to have fallen by now, causing the need for several transfusions.  I think we were expecting it too... 

Two weeks ago we took Ethan to Vanderbilt for some preliminary testing that would need to be done before they started a transplant (should that day come).  They did a lengthy developmental test (almost three hours), a swallow study (video x-ray of him swallowing barium) and labs.  He did great on all three!!  He scored right between his chronological age and adjusted age developmentally.  He had several good swallows showing that he is able to protect his airway when eating/drinking. And his labs were completely normal.  We left the day very encouraged and rather proud parents:)

Over the past two months I have found myself anxiously waiting in the doctor's office of our hematologist/oncologist.  The time between his little finger prick and when the doctor walks through the door with that piece of paper has seemed to take forever.  But this morning was different.  For the first time, I was expecting the doctor to say that all of his counts are still normal...and he did:)  So normal that we have decided to just check him every four weeks instead of every two.

We are so thankful for the health the Lord has given Ethan!  As we continue to watch the Lord work in our family, we are hopeful that His name will be praised and honored....no matter what may come. 

Just wanted to give you a chance to praise with us!

Journeying On,

Oh Fall

Ethan loved the horse

Boys and their tractors

This girl loves her daddy

Giant slide was pretty fun

Ethan is a little thrill seeker

Love this smile; glad he was standing still long enough to catch it

Sweet girls

(kids group picture turned into a girl picture

when both the boys jumped up and ran away) :)

Slight melt down...it didn't last too long

Seriously....this girl loves her daddy

Thank you, Jess for picking up my camera:) 

Picking the perfect pumpkin

Welcome Fall!

Hope you're enjoying these warm fall days as much as we are!

Journeying On,



Best Buds

.....well most of the time:)  It really is fun watching Ethan and Addison become best friends.  They really love each other if they don't have to share toys.

Sadly my camera was on the wrong setting, but I still love that we captured this precious exchange:)

Journeying On,

Are You Still Adopting?

Over the past few months, I've gotten this question several times.  It's a logical one since there has been no news and very little progress with the process.  So here's where we are....still waiting:)  Usually it only takes a month to two to have your homestudy completed after the paperwork is submited, and we submitted our's May 4th.  Although my heart was becoming very inpatient, it is clear to see now why things have been delayed and our case is moving slowly.  I can't imagine having a homestudy and taking the next steps in the adoption process during July and August.  Very thankful the Lord's timing is perfect!  If only I could learn to rest in that...

We are still waiting for our homestudy, but not feeling rushed or anxious about it.  In the meantime, we're still praying, learning and saving.  We are reading books on adoption and are planning to attend a conference to become more informed on various aspects of adoption.  We're saving our pennies and taking advantage of fund raisers when they arise.  In the Spring we partnered with Duck-Duck-Goose consignment sale and they graciously donated a 10% of the sales from anyone who handed them our flyer when checking out.  They are doing it again for the fall sale, which is NEXT FRIDAY, the 23rd.  If you're in Knoxville and are thinking going to the sale, we would be so greatful if you would print off the flyer and take it with you.

Journeying On,

LOVE IT!

So I just wanted to let you know that your wall decor is being put to use.  Although we thought they would be filling up the walls of a hospital room, I am so grateful they are filling up the walls of our home!  I love them all and have been so encouraged by every word!

PS-Ethan had another week of completely normal levels!  Praise God!

Journeying On,

Biopsy Results

In July, Ethan was diagnosed with a rare bone marrow condition, a Myelodysplatic Syndrome (MDS).  At the same time, we learned that he also had Monosomy 7, a chromosome syndrome that eventually leads to Leukemia.  The only treatment and hope of a cure for Monosomy 7 is a bone marrow transplant.  And so for the last month or so, ‘Be The Match’ has been searching for a bone marrow donor that would be well-suited for Ethan.  The best match is a 22 year old male (that’s as much as we know) who will be available in October.

In addition to searching for a donor, doctors have watched Ethan’s blood counts closely.  These numbers (which had almost completely ‘bottomed-out’ in early July) improved quickly and eventually returned to normal levels.  This improvement has been quite a surprise to our doctors.  In fact, because Ethan’s counts have been so inexplicably good, his doctors ordered another bone marrow biopsy to get another look and hopefully a better idea about what is happening in Ethan’s body.  This test was done Tuesday (8/30) at Children’s Hospital in Nashville.

This afternoon the hematologist/oncologist from Vanderbilt called with the results of the biopsy.  He began by saying he had ‘very good news’ for us.  Although the test had not been entirely completed at the time of our conversation, initial results show that only 9% of Ethan’s bone marrow cells contain the chromosomal disorder, Monosomy 7.  In July, this number was 100%!  Once again, doctors are somewhat baffled by these test results.  It is certainly not what they expected to find.  As our doctor explained today, he’s never seen this ‘pattern’ in a Monosomy 7 patient. 

In light of these good results, the doctor is suggesting that we hold-off on the bone marrow transplant.  Although he predicts that Ethan will still need a transplant in the near future, he explained that it is difficult to justify a transplant considering these latest numbers.  In the meantime, Ethan’s counts will be monitored bi-weekly and another biopsy will be repeated in 3 months.  There is no way of knowing if this changes Ethan’s chances of developing  AML or just how long his marrow might produce these good cells.  The doctor believes his counts will drop again.  If they do, another bone marrow biopsy will be needed.

And so we are both encouraged and puzzled.  If the most well-respected hematologists/oncologists don’t know what to make of Ethan’s situation, then we certainly don’t stand a chance at explaining or projecting it.  But more than ever we are convinced of this…

God is our refuge and strength, a very present help in trouble. Therefore we will not fear though the earth gives way, though the mountains be moved into the heart of the sea, though its waters roar and foam, though the mountains tremble at its swelling.  Psalm 46:1-3

Journeying On,

Jared and Sara