What a Week!

So here is our final story (in faith):
The blood doc called to say that we needed to make an appointment for follow up draws because remember we had gotten the PICC line out. Well, I made that appointment and thought I would check up on insurance to see if our deductible (which is $7,000 for these specialty meds--this is in addition to our high deductible plan for doc visits-$10k).
I called our Infection Disease doc and left a message to ask how much Lovenox (the anti-coagulation drug) we would need to refil for as I knew there might be a chance we would be chosen for the 6 week duration. This, would be a randomized choice decided by the computer. It's a longer story to explain why but we are in this study as he has some rare things that have happened. I didn't want to pay for too much as each vile is about $1,000.
The night before we had stood in a circle and just given it to God (as the 6 week mark would be Tuesday...it's Monday now). We cried out and confirmed that we believed in Him.
O.k. so, I called Cigna insurance and the woman answered my questions. Indeed we start over, January 1st. We still had 1 small vile of Lovenox left, which would last us 2 days and then we would pay the $3,800 for the next 7 days of doses.
I sat on the couch physically feeling the weight of the financial strain. Ugh. I refused to succumb to the depression. I literally began to say outloud, "I give this to you Lord, you take this, you know our finances..." RING! RING!
"hello?!"
"Is this Mrs. Lisa Miller, the mother of Skye Miller?"
"yes"
"Mrs. Miller this is Jackie the research nurse and we wanted to call and let you know that the computer has randomized Skye for the treatment of Lovenox." (I thought this meant he needed to remain on it for 2 more months) "Mrs. Miller, I have some good news.....today will be your last 2 doses of Lovenox and then you will return to blah, blah, blah..."
"What did you say? Do I understand you correctly Jackie?"
THEN I CRIED AND CRIED and blubbered stuff about how God is so faithful and so good and we prayed and on and on...She listened and said I was cute.
"yes, you can finish tonight at 8:30 and we will call to set up the remaining follow up blood draws and check ups."
"THANK YOU JACKIE!"

So, we all gathered around (Alan in spirit as he was at work) and cried and danced (especially Chase Ray) and prayed and thanked God over and over.

Then we remembered we had purchased a gift card to Extraordinary Desserts and so immediately we decided to go and celebrate and EAT CAKE!

So, we are off all MEDICATION!! We just have 2x a week visits and some weeks once, for some scans and follow up blood draws. Can you believe it?!

Skye eating his apple cake!

Me drinking one of the best fresh chai teas I've had!

Chase chose Dulce de Leche ice cream

Because we no longer had the PICC in and didn't have any medicines, we went out in the rain and walked...you see, now we could get wet with no consequences!

Our Latin tutor helping us--maybe not a big deal to you, but to us it's pretty huge as it's been a struggle to just get normal life stuff accomplished!

and we took a walk up in the mountains!

 

 

Thank you God for changing seasons! We are ready for another chapter. Thank you for being interested and praying and supporting us. Mwuah!

Update on Skye

Hi everyone! This is a technical update on Skye, my oldest, that you have all been following so faithfully. 
Dr. Pong, our Infectious Disease doctor who is now one of two of our primary doctors in this process, called to say that the clots are the same size and there is complete blockage still of the left and right portal veins. 
The spleen is only mildly enlarged and the bladder, kidneys, gall bladder and liver all look good and are not swollen.
CRP levels are normal (a marker for infection) as are his CVC (white blood cell count)! His "anisi" (not sure what this stands for) is over 3,000 and his hemoglobin is 12.4. These are all good numbers.
There was a very low
bone marrow count the last 2 weeks but that has risen back to a normal range. That is a big concern as he is in the middle of puberty/growing and we don't want any early onset bone/growth issues.
She said, in addition, that his overall blood panel levels are very strong and whatever I'm feeding him is surprising that he has such great levels.
We will redo the ultrasound in 2 weeks. If the clots are still there, still the same size, we will take out the PICC and stop giving antibiotics. The auxiliary veins (the ones that were created by the body to move the blood in and out of the liver while it's lifeline veins were blocked) are working well and although the main portal veins are fairly blocked, the liver tissue looks good.

O.k. so maybe what I said was a lot of mumbo jumbo. Here is the good and the not so good:
1. Clots (complete thrombosis)are not good in any way/shape/form so we can continue to pray that those dissipate.
2. Same size clots that harden and heal are sticky spot on the sides of the vein where infection has a higher chance to attach itself.
3. There are so many levels in your blood that can be off. He has excellent levels and internal health (must be the ChickFilA) Seriously though, she said that usually this antibiotic wipes kids out.
4.The bone marrow count is a miracle. With this drug, usually the numbers don't go up!

So in 2 weeks, we'll get another ultrasound and tests and this will determine if we can have it out. Not exactly what we wanted to hear in terms of the PICC line staying in. Great news on the blood and tissue levels though! 

Pondering

"Hark, how the bells, sweet silver bells
All seem to say, throw cares away
Christmas is here, bringing good cheer
To young and old, meek and the bold."


Oh sweet loved ones near and far off
those who have been close and those who have been distant

We wish you a merry Christmas!

Because whether we are ready or not,
Whether it be June or September,
Whether we want to celebrate right now or we believe it to have happened nearer to summer

Whether you feel weak,
meek
old...

Whether you feel good, young and bold,

There is a time to acknowledge that He has come for us.
He died for our sins

He will rise with healing in his wings

And you will be released

Whether it's now

or later. Or now AND later.

This is good cheer. This is worth waking up each morning for and staying up through the wee hours of the night to bring medicine or warm milk or a listening ear or a tender breast to young and (sometimes) old.

This is good cheer because it means that this isn't our end. 

It means that those bells of freedom are going to ring whether you're ready or not. 

And it means that I am not in charge of when the bells ring. And in my moments of pushing on and wondering what I'm doing in this wandering space, the bells will ring! And it won't be because they rang too soon or too late.

"Till ringing, singing, on it's way

The world revolved from night to day...

God is not dead, nor doth he sleep;

The wrong shall fail, the right prevail,

With peace on earth, good will to men."

Merry, merry, merry day. When He shall come with trumpet sound, oh may I then in Him be found!

If we trust...

I know this refugee problem is bigger than me. I know that it might be more complicated than I'm aware but is it? 

This morning as I was fretting and sad, God reminded me that He is enough and that He can be trusted. Even if there is a terrorist sitting next door to me. He is my safety, not my border, not my neighborhood, not my church, not my husband. This is the scariest thing to me and yet the most reassuring. 
When we were in the hospital, a peace came over me and it was this: He is. He was and He is. He has been there during the crusades and He has been there at his own death on the cross when the whole world shunned him...o.k. maybe not his momma Mary, but yes, everyone. 

He understands the rhythms of history. He isn't surprised..I have to remind myself of this. At one point last week, I forgot this. 
My mind wanders often to the refugee situation. What would do? What should I do? I want a huge piece of property so I can have all of them....at least the children. I don't want anyone else to die. Enough already, right?
Then God came in to my aching heart and said something like, 

"I can take people away to a better place and although there is loss for those of you left, it's not surprising for me, and not for long. Here the sun is always shining and there's no tear in any eye. My presence is completely here and my promises are fulfilled. "

I think it's a trust issue...if we trust Him, we can be safe. If we trust Him, we are given peace. I though, get frustrated with what's not happening and think it's not going to work out well. I think I honestly don't see pain and suffering as normal, we see happiness and health as normal. I do.

Those little faces in pictures of kids sleeping in streets, whether it be now or 10 years ago, in Paris, Syria or the Philippines---I can't hack it. I feel guilty snuggling with my kids. I feel ashamed that I ever complained about, well, anything. I do honestly feel like if I could do something, then it would be better. And not outside of giving and praying and positioning myself to help and serve...but like if we could just quit our jobs and move there and hire a truck and get food and blankets...that I could hug them all and the bad guys would go away. 

A few years ago when we lived in the condominium in North Park, I found out that there were 4 sex offenders (1 on parol and 3 major) that lived IN MY COMPLEX. As in, 3 doors down, upstairs, down the hall. At first my heart raged...how could God let me buy in a neighborhood with those crazies? I have a baby! Then we moved to a different neighborhood by the beach...ahhh, away from the crazies...ahhh. Knock, knock. It's my neighbor to tell me that the guy a house down was just released. 

No bad guys can steal my Jesus. And if in the end, I die because of the bad guys, then I get to go be with the good guy. And my friends and family will be sad and sing great songs at my memorial service and I will wait for them where the mountains touch the sky, at the end of the rainbow, because I'm covered. I'm covered by His blood.

I want to trust Him.

Why Christmas?

http://www.ucg.org/the-good-news/the-top-10-reasons-why-i-dont-celebrate-christmas

My email is lisa.miller.a@gmail.com and I'd love to have a discussion about this with you. Do you agree/disagree?

I have a lot of friends who don't celebrate Christmas...friends who are near and dear. Sometimes I have a hard time articulating my thoughts on why I love Christmas. The past few years I've started doing different things for the holidays...things like resting more, reading to the kids more, ramble walking more, doing crafts intentionally and reading the bible to them. I realize it could be done as an act of worship around Easter. Somehow it seems more cozy at Christmas and more settled in my heart. When the temperature is 99 and I'm sweaty, it's almost like I don't feel like sitting and being and pondering. Another reason is that my very personality is all about party. I like being loud and fun and buying presents and being fun and loud and buying presents and being silly and joking loudly...how could I not do this in honor of Jesus...does he like it?

So, message me what you think. I really want my eyes to be more open.

Christmas booth, 2012

Outta here....

ALL I WANT TO TYPE IN CAPS OVER AND OVER IS THE FACT THAT WE'RE OUT OF THE HOSPITAL. WHAT A HARD WEEK. IT'S OVER. WE'RE GONNA GET BETTER NOW. I have the best, best friends in the whole world. or universe...I should include universe because they were extraterrestrial. Which, now that I'm a smart homeschool momma, I know that means, "out of" "earth". Yep. Me. Smart. Haa...

Please pray for my little one still. We have high white blood cell counts, inflamed abdomen still and low fever. So, no partying this week. But, we are OUT OF THE HOSPITAL. Oh, and did I mention..

WE


ARE

OUT

OF


THE


HOSPITALLLLLLLLLLL!!!!

By the way, please pray for my sweet friend Noel. She is needing miracles right now...she's still at the hospital.

Good Veterans Day Story

Mike Rowe

Say hi to Retired Staff Sargent Travis Mills, formerly of the 82nd Airborne, US Army.

As you can see, Travis has undergone a few structural modifications, most visibly in the leg department. Likewise, his left arm is more machine than flesh, and though his right arm appears to be around my waist, it really isn’t. Like the rest of his limbs, it’s been missing in action for some time.

I met Travis a few weeks ago in DC at The Science and Engineering Festival, and spent a half hour talking, mostly about Dirty Jobs. He wanted to tell me how much he and his buddies appreciated that show while on active duty. He wanted to know what it was like to work in so many “difficult and dangerous situations.”

Can you imagine? How exactly does one answer a question like that from a guy like this?

On the day we met, I was a little stressed out. I had just moderated a panel on the main stage, and I was rushing to the other end of the Convention Center to meet with a bunch of CEO’s to discuss mikeroweWORKS. I was late, and there were three-hundred and fifty thousand people between me and where I needed to go, all of whom wanted to say hello and take a photo. My security team was cutting a swath through the crowd, and I was trying very hard not to look like a complete douche. Then one of the event organizers ran over and grabbed my arm.

“Hey Mike, there’s a guy backstage who really wants to say hello.”

“That’s nice,” I said. “Tell him to get out here and do it.” I was walking fast, head down, determined to maintain forward momentum. If you stop in a situation like that, you never get started again.

“Well,” said the guy, “it would be easier if you came to him. It’ll just take a second.”

“Why? His legs broken?”

“Uhh...not exactly. But he’s just around the corner. I think he was in the war.”

I told the security guys to sit tight, and followed the guy down a long hallway, looking at my watch as we fast-walked into the backstage area. Then we ducked behind a blue curtain, and Travis Mills stood up to greet me. Actually, he kind of unfolded himself from a chair, and came toward me with a very wide smile. He then extended a prosthetic arm and offered a plastic hand, which I automatically shook.

“Mike Rowe! What an honor! I’m Travis Mills, and I’m very, very pleased to meet you.”

I’ve seen a lot of things over the years, and I’ve gotten good at pretending there’s nothing unusual when there clearly is. But I was completely unprepared for this.

“Ahh...shit,” I said. “What happened?”

“IED. Afghanistan.”

“Damn. I’m sorry.”

“No big deal. It’s been two years now. I’m good. Tell me something though - are you gonna do anymore Dirty Jobs?”

“Uhh...what?”

“Dirty Jobs, man! When are we gonna see some new ones?”

“Well Travis, that show was cancelled. I’m working on something new though that I think will be just as good. Maybe better.”

“Hey, that’s great! I got new legs and you got a new show! Tell me all about it!”

That’s how the conversation started. My show. My foundation. My book. Etc. But I eventually steered it back to him, and learned that Travis is one of only five quadruple amputees to survive that level of injury in the recent wars. He has a motto: Never Give Up - Never Quit. He has a Foundation. He’s featured in a new documentary. He also has a wife and a kid, and a deeply personal commitment to help other wounded Vets cope with their injuries. But when I asked why I hadn’t seen him in any of the typical commercials and PSA’s for wounded veterans, his answer was stunning. He said he didn’t consider himself to be wounded.

“I’m not a victim, Mike. And I refuse to be portrayed that way. Case closed.”

Fact is, Travis is missing more than a few original parts; he’s missing all traces of self-pity. And that’s presents a challenge for mortals like me. Because it’s a hell of a thing to feel put out because a crowd of fans are making me late for an important meeting, and then listen to a guy with no arms or legs tell me how lucky he is, and how much he appreciates all my hard work.

That’s called a gut-check, and I could use one from time to time. Especially on Memorial Day, when the biggest decisions I face are what to grill and which type of frosty beverage to enjoy. This year, as I resolve these and other important issues, I’ll think of Travis Mills. A guy who went out on a limb for me, in every way possible.

Thanks Travis.
And Happy Memorial Day to you all.

Mike

PS. His story is incredible. Check it out, if you have the time.
http://www.travismills.org/about/