Initial Biopsy Results

Tuesday afternoon Ethan and I headed to Vanderbilt children's hospital to see his doctor there and have a bone marrow biopsy.  This kid was chill the whole way there:)

He wasn't a huge fan of the IV, but so thankful they got it on the first stick as he can be a tough one to get sometimes.  Then we saw the doctor who gave me the standard talk I've come to hear.  "Ethan's a ticking time bomb" and words like "these low counts are usually indicators of something more going on in the marrow" and "we'll know 1-2 days after the biopsy if he's developed leukemia yet".  For the first few minutes after these conversations, I'm a bit down as the gravity of Ethan's condition sinks in again.  But then I remember that we haven't seen this doctor is over a year and a half because Ethan has been stabilized by the great Physician in an inexpiable and miraculous way.  He should already have had cancer; already have had to go through a bone marrow transplant, but he hasn't.  And each of those days since July 2011, since his diagnosis, has been miraculous.

Got a good nap in with the help of the sedation team

The routine goes that they call a day or two after the biopsy to give the general results.  The detailed report of how many of his cells are being affected by the Monosomy 7 comes about a week later.  Today they called to say, "still no leukemia!" (and I'll note the nurse had amazement in her voice:)

Our family is rejoicing in the graciousness of our God.  Some on this side of the world, and a few on the other side.  And we're counting down the days until we're back together.  Thank you for praying and rejoicing with us in this continued miracle.

Journeying On,
Sara

Our Hearts Overflow

Although its been pretty quite on here while we're sharing over at Our South African Journey, I wanted to take a minute to convey how absolutely overwhelmed our hearts have been today.  July 23rd will be a day of celebration in our books. (well, it's already a huge day of celebration because its my nephew's birthday-happy birthday, sweet Jackson! We would be there to celebrate with you, but we're busy getting you a life long playmate) :)

It's Gotcha Day! So today we became parents for the third time (I feel really old when I say that) to Elijah Sandile Raby.  So we celebrated....thanking God for His sovereign and protective grace that has led us to today.  Adoption is a miracle.

Another miracle of today is that Ethan has a virus!! For a couple of weeks Ethan's blood counts have been pretty low and today his virus finally caused something detectable-an ear infection. Even more of a miracle is that his CBC showed a significant increase in his platelets, which is fantastic! While I know it hasn't been fun for my mom to spend so many hours at the doctor this week, we are so thankful and at complete peace with the care our kiddos have been getting from their grandparents. And let me just say that FaceTime is a wonderful thing!!!

Because his numbers dipped low and because it's been a while since we've seen his doctor at Vanderbilt, Ethan has been scheduled for another biopsy there on August 6th. He will also be having weekly CBC tests until then.  His next blood work is on Friday (26th), and we would love to see some super high numbers.  We are incredibly humbled and thankful for the many praying for our E-man, and we want to give you reason to praise while you keep praying for him.

Journeying On,
Sara

Wheels Up and a Bit of Turbulence

Well, it's taken miracle after miracle, but we've finally made out of town and in route to South Africa. These miracles started Friday afternoon when our final piece of paper from immigration made its way to our mailbox. After it arrived we learned it had to be notarized, authenticated by the Knox county clerks office and then state sealed at the secretary of state's office in Nashville. Nothing like cutting it close. We're so thankful it came and that we had some amazing volunteers to drive it to Nashville on Monday to get ready to go. So, here's how the Lord has been at work in orchestrating these events. The adoption agency wanted us to leave on 14th, but tickets were so much cheaper to leave on the 16th that they made an exception to let us come later. If we hadn't requested a later departure date, we wouldn't have our immigration paperwork. Praise Jesus!

Are delayed departure was also in the Lord's plan because last wednesday Ethan had his monthly blood work, and for the first time in several months it had dropped down. With the delayed departure, we were able to take him back in Monday afternoon to repeat his labs. Unfortunately, they were still low. We have reason to believe it could be a small virus that he is having trouble fighting off, but because his condition is unchartered territory, it is always a bit unnerving when the numbers drop. After the doctor and I discussed rechecking him on Friday and left the room, Ethan reached up for me to hold him. As I looked at his sweet face, I became teary at the thought of all my sweet boy has been through and how sick he could become. Just before I started sobbing on the poor boy he grabbed my face and said with the biggest grin on his face, "Mommy, why are you not smiling?" So I smiled at him as he began to sing, "a joyful heart is good medicine, good medicine, a joyful heart." Out of the mouth of babes...

So on Monday afternoon, we set aside our massive to do list and plans for packing, and we cried out to the Lord. The unknowns are always so great with Ethan's little body and the thought of leaving the country with a sick boy at home was just overwhelming to us. We had to come to the point that we laid it all on the table. Ethan, travel to South Africa, adoption of Baby South Africa, our family, etc...all of it had to make its way to the alter at the feet of Jesus. It was a hard and emotional afternoon as we sought so much wisdom, direction and peace from the Lord. And it shouldn't have been a surprise to us that we began to be totally overcome by peace. Peace that Ethan has always been and will always be in the arms of Jesus. Peace that our journey to adoption is happening exactly when it should be. Peace that the Lord has not brought us to this place to leave us, but to show himself as absolute Provider, Healer, Protector and perfect Planner.

So with inexplainable peace, we said goodbye to Ethan and Addison, letting them have tons of fun with grandparents over the next few weeks, and we boarded a plane on Tuesday morning to start our journey to South Africa. We depart praising the Lord for the amazing details he has worked out and great excitement for meeting Baby South Africa. But we also take with us heavy hearts for Ethan's health and prayers of pleading for sustained health and complete healing over his little body.

Journeying On,
Sara

Super Eaters

Before my kids had feeding tubes placed, I was totally ignorant and arrogant about eating.  My thought was simply to do whatever it took to get my kids home and out of the hospital.  I thought that after they were home, my momma instincts would kick in and I would be able to get them to eat.  Well, that just hasn't been the case.  It has been more complex, required more learning, more patience and more faith than I ever thought possible.  But let me tell you, His grace has been more than sufficient for all of these! I haven't always endured (yes, I mean we've often only 'survived') mealtimes, offering little grace to my frustrated eaters, but the Lord has been redeeming mealtime in our house and his works are spectacular!

  

He finished half of a waffle

Ate almost every sprinkle off his donut

(after wiping his fingers and every sprinkle clean)

1/4 cup of cheese and 1/4 of a banana

Bacon:)

peanut butter crackers

scrambled eggs and loads of potato sticks

and has been drinking milk!!

This is huge!! Until now he has only wanted water, which doesn't help much with his calorie intake

and so importantly...he is enjoying it!

A huge blessings and encouragement.

We have been able to cut his tube feedings a little bit, but because he isn't on the growth chart, he has little to spare if he looses weight during a tube wean.  We really need him to have a growth spurt before we can start a serious wean on him.  He is definitely getting there though.

Addison's eating has been....well....let's just say miraculously jump started by the stomach bug  a few weeks ago.  While she was sick, she couldn't tolerate any of her tube feedings, so we just did fluids.  When she got over the bug she started eating...like a lot!  And saying she was hungry (a first!!).  On March 28th she went her first whole day with no calories through her tube.  Since then, she's only had a few bolus feeds here and there to fill in for meals she hasn't done well on. And she's not had a tube feedings since Thursday (April 4th)!  She still doesn't drink nearly enough so we're using the tube to keep her hydrated, but she has needed no calories during this tube wean and has only lost about 6 ounces of weight.  When we can go about three months without using the tube for calories or hydration, we can talk about taking it out for good:)

PS-I'm also very aware that we will win the contest for "most pictures of kids eating" :)

But it was your own eyes that saw all of these great things the Lord has done...
-Duet 11:7

Journeying On,

Biopsy Results

About a week ago, Ethan had some minor outpatient surgery and another bone marrow biopsy to see how things are looking.  The surgery and biopsy went great and this little man was a trooper! He was even asking for more 'happy juice' while in recovery:)

The purpose of the biopsy was to see if there were any leukemia cells in the bone marrow and to see what percentage of the cells in his bone marrow are currently being affected by the MDS/Monosomy 7.  By far, the most significant praise is that there is no leukemia!!

I won't pretend to understand all of the medical jargon associated with the tests they run on the bone marrow to come up with these percentages, so it's rather possible that I won't make much sense:) But basically the labs found his bone marrow to have fewer cells than normal bone marrow should have.  They also confirmed that he does still have the Monsomy 7.   Our doctor believes that, although the percentage of cells with Monsomy 7 may have increased from his last biopsy, that we are still about the same place we were because his monthly blood tests are looking acceptable now after a drop in January-about the time our prayer warriors kicked it up a notch:)

The bottom line is that we can check and recheck numbers, labs and percentages all we want, but it doesn't change the fact that we are still experiencing an incredible and gracious miracle from our Father.  A season of healing that is a medical mystery, but no mystery at all to our Sovereign God.  And so, "I will tell of the kindnesses of the Lord, the deeds for which he is to be praised, according to all the Lord has done for us-yes, the many good things he has done according to his compassion and many kindnesses." (Isaiah 63:7)

With much gratitude...

Journeying On,

Blood Work

Background:
Two weeks ago we took Ethan in for his routine blood work and his counts were on the low side.  The doctor said he could still be recovering from the flu/pneumonia he had in early January, but also said it could be his mds/monosomy 7 coming back.  He wanted to do labs again in a couple of weeks to give his body a chance to get rid of any virus.  Our hearts were very heavy that day and the few to follow.  It seemed like this looming diagnosis was finally coming back and the fight against fear seemed more like an all out war than a battle.  But our God is faithful to bring so much peace in times of war, and not surprisingly he filled our hearts with great peace and confidence in His perfect plan for Ethan.  After all, we didn't know for sure that it was his mds/monosomy 7, we were praying it was viral and trusting God to reveal His plan in His timing. 

The following Saturday Ethan was running a high fever, with no other symptoms so we took him to our primary care's walk-in clinic. They did some blood work and his numbers actually looked very viral and even better counts than just a few days before.  Our viral suspicions were confirmed when I had a fever the next day....I've never been so thankful to have a virus:)  

Yesterday we returned to the hematology/oncology clinic to repeat the labs.  His numbers were about the same as they were at our primary, which we took as encouraging.  They are still below normal, but not dropping which is fantastic!  Ethan could still be fighting a virus, but our doctor (and we) would like to know how his bone marrow is looking.  It's been almost a year since his last bone marrow biopsy, so it's time to repeat it anyway.  

Ethan also needs to have orchiopexy surgery sometime this month, so our doctors were able to work their schedules together so we only have to put him to sleep once.  He's scheduled to have the biopsy and surgery on the 15th.  Then we'll wait several days for the biopsy results to come back.  

Rejoicing over the immense amount of healing the Lord has brought to bodies and souls these last few weeks.  We're so thankful for all of you who were praying for a virus with us:) 

Journeying On,

Thankful Thursday/ Pray With Us

for the many normal blood counts I've posted over the last year

for a place to share

Ethan has been having routine blood work for the past 18 months to keep an eye on his MDS/Monosomy 7 (you can read Ethan's Story and read 'newer posts' to see how things have been going).  Basically since March of 2012 he's had almost completely normal blood counts, baffling the doctors.  About two weeks ago Ethan was sick, so I took him to our primary care where they did some labs and found his platelet count to be below normal, but this can sometimes happen when you're body is fighting a virus (which he was) and his other counts were pretty normal.  

Yesterday we had our monthly appointment with his hematologist/oncologist and the labs that came back weren't great.  His platelets have dropped more and his red counts have also dropped.  Our doctor said there is a slight chance that his body is still recovering from the flu/pneumonia he was fighting earlier in the month.  It is possible that because of his bone marrow condition it will take his body longer to recover from a virus.  However, our doctor was quick to say that this could also be his MDS/Monosomy 7 rearing back up.   

We'll recheck his levels in a couple of weeks and also consult with his doctor at Vanderbilt to make sure he doesn't want any additional testing done right now.  

And so with great humility we're asking that you pray with us. Pray with us for continued healing and strength in Ethan's body.  Pray that fear and discouragement will not be found in our home as we trust in the sovereignty of our God.

Yet this I call to mind

and therefore I have hope:

Because of the Lord's great love we are not consumed,

for his compassions never fail.

They are new every morning;

great is your faithfulness.

I say to myself, "the Lord is my portion;

therefor I will wait for him."

The Lord is good to those whose hope is in him.

Lamentations 3:21-25

Journeying On,

Feeding Course

Last weekend I had the incredible opportunity to attend a pediatric feeding course...before I dive into how highly educational and encouraging it was, I first have to tell you how I ended up there.

For last year or so I've been reading and researching different approaches to pediatric feeding disorders and have found the Lord's protection and provision to be absolutely amazing! Without going into great detail, I've learned that the inpatient program we were pushing for does not use the best method for children with sensory/texture issues (which is Ethan). Although it felt like defeat at the time, it was God unfolding his goodness and best for our family...and he even used an insurance company:)

I then ran across a course on-line and felt drawn to it, however its intended audience is professionals. So just to be sure, I called to see if it was okay for a parent to attend.  I was initially told no, but two days later the course coordinator called me back and said I could come (miracle 1).  Once I told a few people I was going, some frequent flyer miles were donated that completely covered my travel costs (miracle 2).  Then after a few more people found out, I was told I had a distant relative that lived in the area.  After checking her address and the course location I decided it was too far away for me to stay with her.  Then one week before the course I received an email stating the course had been moved to the opposite side of the city.  The new location was five blocks from my relative, who provided great hospitality (miracle 3).  Then after some checking we found out that the course could be paid for with flexible spending account funds (miracle 4).  I think God wanted me to attend, and for what he plans he always provides.

To say I was a little overwhelmed would be a drastic understatement.....I was way out of my league!  Sitting in a room of Phd recipients and terminology that was far beyond my normal toddler communications, I started doubting the decision to attend. But at the first break I had a reality check with some Truths and prayed for understanding and application. It came, and I left the two days feeling it was incredibly worth it.  I feel I gained understanding on how and why feeding disorders develop, how they are frequently misunderstood and misdiagnosed and an enormous list of resources and practical ideas. I'm excited to spend the next few weeks rehashing and processing all I've learned and working with our medical team on how some of these strategies should be applied.

I left feeling very encouraged that it is possible and very probable our kids will grow out of their need for feeding tubes.  The Lord uses those he chooses, and I'm thankful He chose to fill a feeding specialist with knowledge that could be passed on to me.  He is good...and I am thankful!

Journeying On,

Spaghetti Soup

Before you see this miracle meal, you really need to go back and watch the progression from a post last October.

Did you see it?  Did you see the miracle of this boy slowly desiring to put food in his mouth? Over the last several months he has been great at putting a variety of foods in his mouth; it just usually gets spit back out instead of swallowed.  Well last week this boy proved he will one day go to college because he downed some serious ramen noodles (I know...so nutritious).  An appropriate serving size for an almost three-year-old would be about three tablespoons, which I would say he put in and swallowed.

The fact that he even touched these noodles and willingly put them in his mouth is huge progress for his sensory system.  A year ago it would have made him start gagging to touch them with his fingers and today they're hanging off his sweet lips.  The miracle is growing...

We know that the Lord has placed some amazing therapists in our lives over the last 2 1/2 years and we've been incredibly blessed to learn from their expertise, especially with feeding and sensory.  Ethan and Addison are looking forward to continuing to work with them, just not as frequently as they have in the past.  This is in part because we've recently learned that our insurance will not be covering out patient therapy for speech/feeding.  We're appealing it, but  have been told by our doctor that it is unlikely the appeal will change anything.  We were recently told that our appeal to the feeding clinic in Baltimore was also denied, which is not surprising.  We've been expecting these denials and have been researching some other avenues to help our kids continue to progress in their feeding skills.

One option that we are going to pursue is for me to attend an workshop on feeding.  I'll be taking the first weekend in November to attend this training.  Please pray that this will be a helpful tool for our family as we move forward with this growing miracle. Also pray that I will be able to absorb and apply the theories and techniques that will be presented.

And I can't leave out a little update about Addison:)  She is practically a natural these days when it comes to eating. She is doing very well and we are hopeful to continue weaning her from her tube over the next several months.  She continues to struggle to drink enough, so it is possible she'll still need her tube for a while to keep her from dehydration.  Thankfully this girl enjoys her food and is slowly increasing her volume to a healthy level.

 
Celebrating changes taking place in our little people....
for spaghetti soup...
chances at new learning....
growing babies...
miracles.

Journeying On,

When Hope Seems Broken

Early afternoon this symbolic reminder toppled to the floor...it seemed way too fitting for the events that had unfolded throughout the morning.

I logged on to our health insurance account yesterday morning to see if any files had been uploaded about our pending preauthorization for the inpatient feeding program.  And this is what I saw....

Hope was stirred...

But I didn't see one for Ethan....so I called.  After three hours on the phone with the insurance company and the feeding clinic I learned that the doctor to doctor consult had taken place on Wednesday; and that the insurance company was upholding their decision to deny coverage for the inpatient feeding program at Kennedy Krieger Institute.  

After that, more than just our small sign of 'hope' seemed broken...

We will now start the appeal process and perhaps look into the outpatient day program that they have, but it seems like a long road and hard fight; always with more questions than answers.  

When my 'hope' sign came flying off the shelf shortly after, I almost laughed at the irony...

Perhaps I have placed to much hope in a feeding clinic as the miracle answer for my kids, when there is only one place to put hope.  While medical professionals can be a great resource and tool, they are not worthy of affections intended only for our God.  Of course, I'm sad and frustrated that we aren't headed to Baltimore right now, but today my hope is in our Sovereign God who intends only good towards His children.

Thanks to the powerful ministry of the Spirit (and a little superglue), hope is restored as we press on in this journey towards Eternity.  

I am counting on the Lord; 

yes,  I am counting on him.

I have put my hope in his word.

Psalm 130:5

Journeying On,

Feeding Clinic

It's been exactly a year since we packed the kids in the car and drove 10+hrs to Baltimore for a feeding evaluation.  You can read all about it here.  Kennedy Krieger Institute recommended Ethan and Addison for their inpatient program.  It is a 6-8 week feeding program that has them in therapy three times a day, while they are closely monitored by a nutritionist and nurse practitioner and tube feedings are weaned.  We were excited, hopeful that our tube feeding days could come to an end.  But just a few days after being home from our evaluation Ethan became very sick and was diagnosed with MDS/Monosomy 7 (you can read about that  here). Since Ethan has had an amazingly good season of health over the last nine months, we were given the clear by his hematologist to move forward with the feeding clinic.  Then we had to wait for RSV season to end, openings in the clinic and for our insurance to approve it.

First we were told late April, then the end of May, then early July and now late July to early August before they would have two openings.  We were moving forward with early August until last week when they called to say our insurance would not approve the inpatient stay.  It was a total shock; they have been great so far at approving home health visits, tons of evaluations, procedures and therapists, even our evaluation last year at the clinic.

So this week we're feeling a bit discouraged and frustrated by this news.  However, I'm primarily feeling convicted about how little I've taken this to the Lord.  I took for granted that insurance was a done deal since they had covered the evaluation.  I'm ashamed to say I've spent more time being frustrated about our delayed start date messing up summer plans than I've spent time on my knees seeking the Lord's direction and patience for my hurried heart.  My flesh is still wrestling with the timing of this, but my heart fully knows He always has perfect timing.  Praying this heart will trust the Spirit's Truth, especially over the next few weeks.

We are going to do what we can to appeal to our insurance.  Thankfully, the clinic has a team that is used to making appeals and will do this at no expense to us.  The down side of the appeal process is that it could take several months, which could lead us back into RSV season and potentially postpone our inpatient stay until next year....we just don't know yet.

But before we start the appeal process we have one last little window of hope.  A doctor from Kennedy Krieger will call the doctor that made the denial decision to further discuss if the inpatient stay is 'medically necessary' for our kiddos.  After that conversation the insurance doctor who denied our request can change his mind, which would set things back in motion immediately without the long appeal process.  We've been told it will be at least a week before this conversation takes place.  Believe me, we're already praying for some divine intervention to take place:)

I've been doing some reading in Hosea the past few weeks; God does a lot of redeeming in Hosea's story.  Trusting the Lord to redeem my lack of faith and these seemingly troubling circumstances.

Hosea 2:15b I will "transform the valley of trouble into a gateway of hope"


Journeying On,

Sensory

Our little man has been working hard in OT (occupational therapy) for the last two years and has made some serious progress.  His goals have been centered around some fine motor coordination and sensory issues.  He used to be so adverse to certain textures that it would make him gag and choke when he would touch them.  This is a huge factor in his food aversion since purees and anything sticky would make him gag.  We've been working for a long time on touching pureed foods and we had a huge break through this week.  Although it's not with food, the fact that he didn't gag or even freak out when finger paint was all over his hands was huge!!  He actually liked it:)  A big thank you to our awesome therapists who keep pushing him (and me) to meet his goals (these pictures are for you, K).

Filled with gratitude that the Lord continues to develop my kiddos

Amazed at the miracle of finger paint

Journeying On,

Results

I talked to Ethan's doctor late yesterday about the results from the bone marrow biopsy he had almost two weeks ago.  The test was about the same as it was in December.  It showed no leukemia, which is always a huge praise!! He still had cells showing Monosomy 7, which continues to be concerning.  It is hard to tell if it is increasing or decreasing because the sample they evaluate is so small compared to the total amount of bone marrow.  We will continue with monthly blood work unless our doctor in Nashville thinks differently after reading the biopsy report.  Our doctor here in Knoxville reminded me that the fact his blood work was almost normal is a great encouragement because his body is still able to sustain itself. In reality we know that it is our Great Physician that is sustaining him.  We are thankful for this report and will press on into this unknown journey; confident that our Lord knows each step.

O, Lord my God, you have performed many wonders for us.  Your plans for us are too numerous to list.  You have no equal.  If I tried to recite all your wonderful deeds, I would never come to the end of them -Psalm 40:5

Journeying On,

Biopsy Complete

Very thankful for and humbled by the prayers of many today.
Everything went great; they even got an IV on the first stick!
They got a good sample and no problems with the sedation.
In addition to his bone marrow biopsy, they also did his routine lab work.
We're excited to say that his lab work was almost back to normal!
Now we wait; about a week and a half.

But while we wait, we celebrate!
We celebrate a faithful God...

He knows exactly how bone marrow works... He made it
He knows exactly where Ethan's journey will go... He planned it
He knows exactly what is good for us... He gives it

Journeying On,

Another Biopsy

For months now we have been celebrating a very miraculous season of healing for Ethan.

I never want to stop celebrating this time, even if his health changes.

In the last month Ethan's blood work has been a little abnormal.  We've bumped up his lab work to every 2 weeks instead of monthly.  And now it's time for another biopsy.  We had planned in December to have it repeated around March or April, so with the questionable lab work we're moving forward.  This time he'll have his bone marrow biopsy in the outpatient clinic at Children's in Knoxville instead of driving to Vanderbilt (a blessing).

His biopsy is scheduled for the morning of March 16th and then we'll wait.  Something I've learned is inevitable in the medical field, yet I'm still no better at it.  They'll send the sample to Vanderbilt for testing and it could be up to ten days before we have any results back.

I am completely sure that God will provide. He'll continue to provide miraculous healing in Ethan's body or He'll provide enough grace and strength to sustain us in what is to come.  It is no surprise to Him, because it's God's plan A.

Journeying On,

Mended Heart

Addison had her heart surgery early Tuesday morning and it went great!

She enjoyed some pre-surgery silly's....

They inserted a coil in the hole that looks something like this....

And a little bit later she was back to normal....

A little too much back to herself actually.  Right before her surgery we were told that following the surgery she would need to keep her right leg completely straight and very still for six hours following surgery....seriously?!  Keep a two year old, in a new place, completely still and her leg totally straight for six hours?  We did our best, which wasn't that great.  Thankfully everything went smoothly and we were home by 10:30 the next morning.

Thank you so much for your prayers!  And praise to the Lord for hearing and answering them!

Journeying On,