November 1, 2011

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,

October 31, 2011

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,




October 21, 2011

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,

October 11, 2011

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,

October 7, 2011

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,


October 2, 2011

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,

September 13, 2011

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,

September 9, 2011

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,

September 2, 2011

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

August 23, 2011

Normal

Ethan had his blood counts checked again today at the Clinic at Children’s Hospital and they are all completely normal!  In light of all the good counts, Ethan’s bone marrow aspiration/biopsy will be repeated in the next week or so to confirm the original diagnosis (MDS/Monosomy 7).

We also received news from Vanderbilt today that several additional matches have been found for Ethan.  Three of these are 10/10 matches.  The youngest donor, a 22 year old male, will most likely be the doctor’s choice.  A few dates are being discussed, but it looks like September 15th could be our start date.

We’re trusting the Lord knows what lies ahead for our family and are thankful to have you all journeying with us!

Very thankful to have enjoyed some "normal" over the past couple of weeks...


This girl loves her jewelry

We welcomed baby cousin Jackson

And E & A love him, well we all do really:)!

"Educational" games on the iPad:)


Pool days are worth the bad hair

A little boating

Best buds

And giggle boxes

Journeying On,

August 15, 2011

Boy with the Balloon

I was walking out of a store last week when something caught my eye.  I'm not usually a knick-knack collector, but this time was different.  The minute I touched it, the tears came.  It was a gift from the Father, a tangible reminder of His sovereignty and love for me, His child. 




Although this figure is faceless, he seems to have an expression of joy to me.  Just like my little boy is so joyful in his innocence.  With arms lifted in worship, he is holding on to hope.  And so as I hold on to hope, I am challenged to hold on with joy and worship in my heart and on my face.  After all, I have much to be joyful about, much to worship the Father for, and an eternity to hope for!

For in this hope we were saved. But hope that is seen is no hope at all. Who hopes for what they already have? But if we hope for what we do not yet have, we wait for it patiently. In the same way, the Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us through wordless groans. -Romans 8:24-26

PS-We're still waiting on some medical records, a swallow study and any "better" matches to come up.  Once these things are taken care of we'll repeat his bone marrow biopsy and get a date for transplant.  Last week ALL of his levels were "unexplainably" normal (although, we can explain it through the power of our Almighty)! 

Journeying On,

August 7, 2011

10 out of 10

This weekend we received word from Vanderbilt that the National Bone Marrow Registry has found Ethan's first match!!  The possible donor is a 28 year old girl and is considered a 10 out of 10 match on the scale they use.  She has not been contacted yet, but we have been praying for her availability and willingness to donate.  They will continue to look for additional matches so they can pick the best one for our little guy.  In the meantime, they will monitor his blood levels and we'll keep waiting.  Just wanted to let you know about our exciting weekend:) 

Journeying On,





P.S.-LOVING all the cards and signs we've been receiving!  Thank you so very much!  I'm excited to get them up!

August 3, 2011

Life Sustainer

We've been visiting our hematologist/oncologist on a regular basis to keep an eye on Ethan's levels.  At every check up we've been praying that his levels would be high enough not to need a transfusion and so far they've been barely acceptable....until yesterday.

Tuesday, Ethan's lab work was fantastic! Almost all of his numbers were in the normal range and it looks like his bone marrow is actually producing normal, healthy cells.  I asked our doctor if he knew what would cause his body to suddenly start functioning normaly and as he scratched his head he said, "I guess all of those prayers must be working." 

Yes!  The Lord hears and is moved with compassion when he hears the cries of His children.  There are no doctors to praise or medicine to credit; just the healing, life sustaining power of our Heavenly Father. 





**Thanks so much for the prayers! Just to clarify (I've had a few questions)... Ethan's diagnosis and need for a transplant has not changed, but we are celebrating surprisingly good health and stability in the meantime. Thanks again for rejoicing and praying with us!**

Journeying On,