late night prayers

Some times I don't blog because I don't have anything specific to say.

But more often it is because I have too much to say.

And it all swirls around in my crazy head all day long.

I literally "write" in my head all through the day.

It's how I think.

But it takes TIME to stop and sit and gather all the thoughts like little chicks back to the nest and tie it all together so that it gets communicated for the hopeful use of others.

Anyway, that's the case these days.

I have so much I want to write about,

and so many half written blog posts that I can't seem to finish.

It's not just the time. I can find time.

It's also energy and focus that needs to come at the same moment as time is available.

This is more rare.

I last blogged about the Ronald McDonald House event we spoke at.

It went wonderfully and happened to be the day after my birthday, which made for a very special birthday date.

Tonight, I want to write,

but again I don't have what it takes.

I have the thoughts,

but not the energy.

My heart is heavy for

far too many dear friends weighed down by the heaviness this broken life so often brings.

Sometimes doesn't it just seem like victories are few and defeats are often?

So,instead of watching "Sister Wives,"

a worthwhile endeavor...

I prayed.

Don't be impressed.

I had already watched 2 episodes in a row with my sister today.

I wasn't sincerely depriving myself.

And sometimes the needs of those around us literally stop us dead in our tracks, don't they?

And we are faced with our literal paralyzation.

As true as any paralyzation,

we want to move,

we will ourselves, we imagine what it would feel like,

to free them,

free ourselves,

from the ravage of sins fire.

The fire that always eats up those in its path.

How I long to just do something.

Anything to stop the pain.

The confusion.

The sleepless nights.

So many hurting tonight.

But I can't.

I'm just a paraplegic.

Completely without the ability to bring about the action I so long to do,spiritually speaking.

When it really comes down to it, I can't change anything.

I am not God.

I can be available to him.

I can listen for his voice.

And obey when I hear it.

And that is powerful

But I am quite small in the scheme of things.

Things like the problem of evil and suffering.

My only real hope is that God is not small,

and He is still on His throne.

He is not paralyzed by the gravity of sin.

How it tears families and lives apart.

How it tears worlds apart.

He knew sin had the power to do all this damage, even if it still surprises me.

When my sharp,cutting, dagger words go flying-

and it's not until I see the blood seeping from the wound of the one I love that I shut up.

Then I am shocked at how ugly, how damaging sin is.

When addictions steal away the hope for life and life becomes only that thing,

and it was only meant to be a good time,

an escape from the harder things of life.

And now you have no life.

When wars are fought and children starve every day and it seems

there just isn't enough hope to go around.

It's then I am stopped in my tracks and I am forced...

to pray.

Because what else can I do?

He knew these days would come.

The moment Eve stopped believing his love was true and rich and enough.

Was the moment the Rescue plan was put into place.

And it continues....

today.

So I just pray.

For those who can't seem to sleep tonight for all the weight of things gone wrong.

From the book, "A Diary of Private prayer" by John Baillie

O Thou who art from everlasting to everlasting, I would turn my thoughts to Thee as the hours of darkness and of sleep begin. O Sun of my soul, I rejoice to know that all night I shall be under the unsleeping eye of One who dwells in eternal light.

To Thy care, O Father, I would now commend my body and my soul. All day Thou hast watched over me and Thy companionship has filled my hear with peace. Let me not go through any part of this night unaccompanied by Thee.

Give me sound and refreshing sleep:

Give me safety from all perils:

Give me in my sleep freedom from restless dreams:

Give me control of my thoughts, if I should lie awake:

Give me wisdom to remember that the night was made for sleeping, and not for harboring of anxious or fretful or shameful thoughts. Give me grace, if as I lie abed I think at all, to think upon Thee.

My soul shall be satisfied as with marrow and fatness; and my mouth shall praise thee with joyful lips; when I remember thee upon my bed, and meditate on thee in the the night watches.

To thy care also, O Father, I would commend my friends, beseeching Thee to keep them safe in soul and body, and to be present in their hearts to-night as a Spirit of power and of joy and of restfulness. I pray for.... through Jesus Christ our common Lord. Amen.

Sweet Dreams.

We're Hoooooome!

Thank you all so much for praying for Shepherd over the past few days.

We are now happily at home.

And so grateful for it.

They ran blood work on Shep and did an MRI and both showed up looking totally fine.The MRI did shoe built op fluid and what looked like infection deep,beyond the ear.

On top of that, by the second day in the hospital, after receiving antibiotics through IV, he was quickly regaining his balance.

With all of this being said, everyone, including us, feels confident that this had something to do with his ear infection or possibly a post viral symptom or perhaps both.

Either way, considering he has no history of anything neurologically or in his ears, everyone considers this a freak incident.

And we all feel great about sending him home.

It was crazy, though,folks.

Aint no lie.

When that little munchkin woke up on Thursday morning and we stood him up, he literally just tipped over.

Even in the ER, he couldn't sit up straight on his own,unsupported, much less ask him to turn his head and he'd go falling over.

SO unnerving.

But he is feeling SO much better and has almost all of his balance back.

Only we would notice that he's a little "out of alignment" when he goes careening down the hall.

THANK YOU for supporting us with your prayers.

There were many moments that I needed,WE needed, great faith that we don't have and it was provided.

In large,because of you, so thank you.

Thank you.

Now I am going to go back to snuggling with 3 little boys under a blanket and reading books,while Fall breezes whistle in through the windows.

Thank You, Lord, for your kindness and mercy.

Thank you, to his people for showing this to us.

The Race

We're waiting out in the hallway while Shep is in the OR. I thought it would be a good time to reflect on running my first 5K.

I have to say after running yesterday, that every Christian should run a difficult race at least once in their life- and yes, a 5K was difficult for me. Don't laugh.

"Why should every Christian run a difficult race?" you ask.

It has something to do with a little verse tucked away in the book of Hebrews, chapter 12.

^"1Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles, and let us run with perseverance the race marked out for us. ²Let us fix our eyes on Jesus, the author and perfecter of our faith, who for the joy set before him endured the cross, scorning its shame, and sat down at the right hand of the throne of God. ³Consider him who endured such opposition from sinful men, so that you will not grow weary and lose heart."

********

As I type this out, they have just come to take Noah back and that was way too fast.

That only means one thing.

He did not get his trach out. And I am disappointed. But I will continue to put on my glasses and try to see my world and my experience clearly. "Your word is a lamp to my feet and a light unto my path..." This means I may not see very far ahead but I can see clearly enough to put one foot in front of the other.

*****

Speaking of which, about that 5k.

It. Was. Hard.

I usually run 2-3 miles and it's no biggie. So either I have measured the mileage wrong in the past OR the 95 degree humidity was kicking my butt. To prove to you how difficult I thought it was, I thought I was coming up on the end and as I approached I saw it said

"1 MILE".....DONE!! Not to finish.

Here I was only 1/3 the way through and I began to think, "this may get tough." THEN we hit the VERY long stretch of shadeless, scorching, sun as we pounded the brand new black ashphalt. It was HOT! And I was TIRED!
And I wasn't done yet. Not even close.

This is so much like life. This is so much like today. And I am so glad God lead me to run that race on that day. The day before Sheph's bronch.

Because I was helped to remember this...

Life is a race. And God urges us to RUN it and not just to RUN it but to go with endurance. That's the hard part.

We get surprised when the run gets hard. What happened to the leisurely jaunt through the park? Where is the breeze?

I'll tell you I was surprised. I was thinking with each step. THIS. step. SUCKS. step. I. step. WANNA. step. QUIT. step.

A lot like life. But God is not surprised that life can be hard.

In fact in books like Peter it implies we should assume life will be difficult. Not all of it, hopefully. Though I must mention that for a LARGE portion of the world, life truly began as a mission of survival and will be that way till death. There are so many who face starvation, disease, war, trauma, and others things that are unthinkable.

So I'm not trying to be morbid, just realistic. Just because you may not think life can be hard doesn't mean it won't be someday or that it isn't for most others. Again, I am not trying to depress you, just to help you be equipped to face life truthfully.

If you do venture to take such a risk, watch out.

Becuase you'll need a pretty big God to face it with you and come out hopeful. And you'll find out real quick wether the God you serve is the limitless God of the bible or a puny idol you have created out of your imagination and experiences, then slapped a GOD sticker on.

SO I ran and ran and ran and most of the time I wanted to give up. Here is where you think, "man those marathons can be hard....oh wait, that's right it is just 5K."

But it took all of me. And as I ran in the scorching heat, feet pounding the pavement, feeling as though I may never actually see the finish line, much less run to it, I kept thinking about one thing.

I kept thinking about my life...and the finish line. My life....and the heat. My life...and the hard pavement. My life...and how the breeze would blow when least expected, giving me a refreshing boost to keep going. My life...and the shade tree that would seem to pop up just in time to give me a break. My life... and the gracious folks holding a drink for me to grab like a spring in the desert.

It was all so much like the Christian life. There were times I really enjoyed the run. There was some shade, there was water, but there was much of it that was pure pain. And I had to ENDURE to finish well.

In Hebrews 12, God asks this of us. He not only promises his son, Jesus, to make it possible if we set our eyes on Him, but he also reminds us that Jesus, God himself, ran the very same race-actually worse.

He ran the Marathon. And I struggle to run the 5K. And he promises He has been there and will run this one with me.

SO I am filled with hope. Because as I ran, every ounce of me longed for the finish line and the rest that awaited me beyond it.

As I put one foot in front of the other, all I could think about was what it would be like at the end of my life to cross the finish line and fall into the arms of Jesus.

And know it truly was finished. That all that I loved in life would be perfected. And all that was broken would be eternally fixed. And I would behold the face of Jesus forever.

What a finish line.

That will truly be worth the run.

So we face the disappointment of Shepherd's bronch by continuing to run. Cause it's not necessarily supposed to be easy. But it can still be good, when your running for the finish line.

The Doctors saw a number of things that caused them to choose not to decanulate Shepherd.

First off was new information, that his adenoids were abnormally large, which will possibly warrant surgery in the future.

Second was that his airway was still abnormally floppy, not blocking of his whole airway, but some.

Third was the scar tissue, which was still massive.

Fourth was also new information which will need more exploring. There was a portion of his trachea moving into his left lung that was narrowed. It appeared that the narrowing was from his heart pushing up against it. This is information they will give to the cardiologist. They will want to make sure that this has not happened because of his heart working harder than we have been able to see on echo, therefore enlarging, therefore leaning on his airway. This also explains why he has had such a hard time with colds this winter.

The good thing they saw was that his vocal chord seems to be coming back a little.

So we'll explore some of those things but mostly just wait for him to grow. Because there are so many things stacked on top of each other, they don't expect to try again till next Spring. SO we're looking at at least another year.

And we'll keep running, knowing it may be hot now, but shade comes if you keep going. In retrospect this is a rather short race, this thing called life. And we only get one chance to run it, and to keep going, and to finish well.

Thank you, Lord for the many ways you have blessed us and protected Shepherd. He is so happy, and beautiful, and smart and healthy in so many ways. We have so much to be grateful for. Thank you. May you be glorified in each step of the race. Wether I walk or run or cry or laugh, I just want to finish well. Keep me.

It's all about the glasses

It's been busy around our place. I know your shocked and feeling even just a little disoriented. Especially if your a mom. How can this be? Too busy? Well, just try your best to imagine with me...

I was so glad I caught a picture of this. The boys decided that b/c Haddon was wearing a belt he looked like a "daddy," which ended in Aslan getting my scarf so that he could be a girl and they could be getting married.

Beets

In all of this busyness, an important day is rushing towards us. And I am going to need all the time I can get to prepare my heart well.

On May 3rd, Shepherd is scheduled for his next bronchoscopy. This is the procedure where they take him into the OR and lower a scope through his nose and down his airway to take a looksee. If they think things look optimal for decanulation (taking out his trach), then they will proceed to surgically remove scar tissue in hopes of successful decanulation. They anticipate a 50/50 chance at his success. They tried this back when he was 4 months old and saw nothing to indicate change.

I'm going to be honest. Medically speaking, it's sweet of those very optimistic Doctors to always throw us the best case scenario, but I don't think his chances are nearly so high. Maybe it's the pessimist in me- only I'm really not a pessimist. Anyway. My guess would be a little more like a 20-30% chance of success. Realistically, his chances are probably not all that great for this go round. I'd expect him to be more like 2 or 3 years old before he gets his trach out.

With all that said- there is something very important I have not yet mentioned.

I'm a Christian.

That can mean a lot of different things in our culture.

But for me,among other things, it means this..

I don't simply see things medically or realistically or even through the eyes of chances or odds. Sure I am tempted to- often. It's only natural for any human being to cling to what can be cleanly explained with numbers and percentages and securities.

Since becoming a Christian, I look at the world and see all the same things everyone else sees. I see statistics and probabilities and facts and studies.

And I like them! Heck, I love them!

But I don't just see those. I see a whole lot more.

I like to think of it as putting on glasses.

I've worn glasses since I was about 9 (big, funky, plastic ones way before it was cool, I mean it was really uncool) . Once, when I was in college, I went running in the Mountains of California, where I was working. It was fairly early and for some crazy reason I wasn't wearing my contacts. Part way on the road I came over the hill to see a figure in the distance. Though it was Northern California, my first thought was, "it's a moose!"

Let me justify my insanity by pointing out that I grew up in Alaska. It was purely instinct.

Regardless- I was way off base.

It was a coworker. A human being.

I know it sounds ridiculous to think I could have mistaken my friend for a moose. But without 20/20 vision things can get allllllll out of wack.

Knowing Jesus, among other things, is like putting on your glasses after having walked around without them for a long time. The first time I put on glasses I had no idea all I had been missing. I just figured this was how the world looked to everybody. But now I can hardly do a thing without them because it is completely disorienting.

I have know Jesus personally for about 13 years. I still forget my glasses a lot. But there's no pretending I can see clearly for long without them.

Preparing my heart for Shepherd's procedure will be a lot of putting on of my glasses.

May 3rd, like any other day in any other town for any other person, is God's day. It's his to do with what He chooses.

I don't mean that in a distant, "whatsoever he shalt will shalt thou be " kinda way.

I just know Him.

And I feel like Peter when I say, " Where else could I possibly go?!" Where else would I go with my pain, disappointment, confusion, hopes,expectations, question, ignorance?

No one else holds the key.

To my heart.

To Hope.

To joy.

To clear vision.

To trust.

He's my Dad. I love Him.

But I can't touch how much He loves me. I don't even try.

He's my Dad.

And if there was ever one worthy of trust, ever one to dive into, to let hold me, my life, my child, my children, our whole, complete selves- it's Him.

So I'm praying that God would heal Shepherd on May 3rd. That there will miraculously not be the granulation tissue that is currently residing in his airway blocking off his breath.

But I haven't got a clue.

I just know the one who does.

And if He wants to work this another way- there is not. a. single. reason. why I shouldn't trust him completely.

Though I may cry on his shoulder a bit, I have a feeling He's not too surprised by that.

Please pray with us. You're all so precious to our family.

Well, Shep has acquired his first cold this week. We know this is what the winter holds and we have and will continue to do all we can to protect Shepherd from illness- that is all WE can I said. Sometimes that will be enough, sometimes not. But always is he protected in the loving care of his Heavenly Father. The boys came down with colds and were quickly whisked away to mimi's palace (to stay with my mom and enjoy bubble bath's, cable TV, and lots of being doted on) last week. We thought Shep got by without catching anything but as the week progressed he began to get a little cold. For his first cold, it wasn't looking bad. Some extra secretions then eventually some wheezing and o2 at night while he slept his deepest. Eventually, we decided to see the pediatrician (we all try to keep him out of there as much as possible because of all of the germs and remember we do have nurses at our house). Yesterday we went in and our doctor felt it would be safest for him to be watched closer throughout his illness. He had us transported by ambulance to UNC, we spent the day there having x-rays, etc run and they ultimately decided to send us home. They thought he could have been admitted but with the level of care he gets at home we might as well keep him out of the germy hospital, too. Our pediatrician had a mild hemorrhage at the news we were headed back home, which left me a tad nervous at the judgement call that had been made by the ER and pulmonary folks. But after talking to numerous people, I felt very confident that home was the best place for Shep. Since then, he has not gotten worse, respiratory wise, but continues to have lot's of bronchial spasms where he can't stop coughing and eventually throws up, he still has a wheeze (which we are treating with neb treatments and oral steroids) but his xray came back clear for his lungs. Today he began to act a lot sicker, though still no fever. He has slept all day, is lethargic, though still eating good, praise God. I could just tell he felt terrible and seeing as this is like day 7 of the virus, it didn't seem to make sense... till they called back with the results from the culture we had done earlier on in the week. They show that 3 different types of bacteria are growing at Shep's trach site. There's really no telling how long they have been there what they've been up to but were sending Mr. Antibiotics that way. So my guess is that all the respiratory stuff is viral and the overall feel bad, look sick is the infection.

Trach infections are pretty common for trach patients, but are still bad news. God made sure that one of my highly trained PICU nurses that we brought home from the hospital was here today and she helped us decide at a crucial point wether or not he should be hospitalized again today. We have decided to just watch him very closely tonight and take it as it comes. This may seem crazy to some. He is sick and sick kids belong in hospitals. BUT, if he were to go to the hospital right now, they wouldn't do much more than what we can do at home. AND if he goes to the hospital he will be put on the floor, where he will be cared for a by a nurse who doesn't know him and has 4 other patients to care for. And though I love me some Tori & Dean on cable, I am not that desperate. And God know all of this, so He made sure that the night nurse we have all weekend is also a nurse of 20+ years who trains EMS to treat children. I think she's pretty qualified to take care of Shep at home, in his crib, with one-on-one attention.

But, please continue to pray for him. The concern, though not likely (otherwise we wouldn't be here) is that we face an emergent situation here at home. So please pray for discernment for all involved in Shep's care and quick healing. Thank you guys soooo much.

I just wanted to take a minute to point out the new buttons I have added on the sidebar to the right. I can hardly keep up with regular blogging much less the organizational details, but finally, here are some reminders to pray for some beautiful babies. I can't describe what it was like to have some of these folks praying for us during Shepherd's stay in the hospital.

The little man has handled his first cold like a champ, by the grace of God. But this morning, I am having to suction him like every couple of minutes, his secretions are so much. So for right now I'm holding him (in my AMAZING K'TAN SLING, which I finally got a button for. If your interested in teething bling or a K'tan sling, please go there through my button. That way I get referral points) while he sleeps. With all this junk, I wouldn't feel comfortable putting him in his crib, and this way I can suction easily every few minutes. We are waiting to hear back from the cultures we sent out yesterday to make sure it's just a common cold, but know Haddon and I have picked up a new cough. Thanks for continuing prayers. God's hand and provision has been SO clear.

Well, I won't be getting much "done" today but it sure could be a lot worse! This beautiful baby snuggled in my arms? Yeah, I like my job.

PLEASE PRAY RIGHT NOW!

STELLAN, ANOTHER HEART BABY, WHOSE STORY YOU CAN READ @ www.mycharmingkids.net

IS FIGHTING HARD IN THE MIDST OF A VERY DANGEROUS SURGERY,AS WE SPEAK. PLEASE PRAY FOR A MIRACLE!!!!

Shep's story

Before the procedure

and WAY too early. We got up at 4:30 am to be there on time. Shep kept thinking that when the docs were talking us through procedures, he was talking to them, and he wouldn't stop smiling.

And this says it all.

This is how Shep feels about his trach. And, no he is not trying to yank it out, unfortunately. 

He is holding on for dear life

and at least 6-8 more months.

Thanks for praying. 

We are very disappointed.

But at the same time, we are truly glad that we are not writing the story of Shepherd's life.

But instead someone with infinite wisdom and infinite beauty dots every "i" and crosses every "t."

Thank You all so much for praying, your prayers were VERY evident in the strength God gave us to hope.

So, what have we been up to you ask? Or not.  Because you have your own life.

Well, just in case... Cause I know you REALLY care and you REALLY pray...

The most recent item of concern is that we are preparing for another trip up to UNC. Shepherd is scheduled for his bronchoschopy (where they will sedate him and take him into the OR, then put a scope with a camera up his nose and down through his airway) where they will evaluate if they think he can de-canulate (get his trach out). From what I understand they will basically take his trach out right there and see how he responds. If he seems to be holding his own then they will keep him at UNC, probably in the PICU for another few days to make sure he does ok respiratory wise before sending us home. As you can see below, Shepherd is praying (albeit with his feet) that everything goes smoothly. 

It's honestly been kind of nerve racking this week, knowing (or not knowing) what is ahead of us. But God continues to remind me that He is with us...in the OR... in the hospital....at RMH.....in the PICU. GOD. IS. WITH.US.  He beautifully reminded me again of the His nearness and his Sovereignty when I sat down with my journal from when Shepherd was born. The same verses continue to encourage me. If you remember from a while back I posted about how God gave me 2 verses the day that I was surprisingly induced with Shepherd. He knew what was ahead and made sure I had these to hold in to.

The first was Psalm 131

 O Lord, my heart is not lifted up;

my eyes are not raised too high;
I do not occupy myself with things
too great and too marvelous for me.
 But I have calmed and quieted my soul,
like a weaned child with its mother;
like a weaned child is my soul within me.

 O Israel, hope in the Lord

from this time forth and forevermore. 

The other was Isaiah 31:1,5

 Woe to those who go down to Egypt for help

and rely on horses,
who trust in chariots because they are many
and in horsemen because they are very strong,
but do not look to the Holy One of Israel
or consult the Lord!

 Like birds hovering, so the Lord of hosts
will protect Jerusalem;
he will protect and deliver it;
he will spare and rescue it.”

As we face the unknown of this week, we find great comfort in this reminder. So as scared as I am, may this day hold all that God intends, filling it with His glory and beauty. And thank you, Lord, for all that you have done thus far. So much more than we dared to imagine. Lord, help me not waste my energies with fear but to hope in you and expect great things from you, knowing you do ONLY great things. And I don't have to know all the details. I just have to know you. And because of your son Jesus, I do.

So, as we prepare for that, Shepherd continues to hang out with Daddy and the rest of the family. He's growing great and is up to 10 1/2 Lbs.  He's still not on the charts, but hey, we'll take it. 

He has become SO social. He just cracks us up. He's crazy happy and smiles like a goof ball all.. the.. time. He's a great joy and I'm so grateful to meet him anew each day. Our favorite is his laugh. He gets to giggling and you can't hear anything, you just see his chest and shoulders bouncing up and down and his face so bright. He is a gift. 

He loves to sleep with daddy. It seems were all a tad sleepy these days, but not too bad. We did get our nursing hours dropped down to 4 hours a day and 8 hours at night. It has actually turned out to be perfect. God has provided lot's of grace and he knows exactly what we need, apparently. If Shep decanulates this weekend ,we will lose all of our nursing within a couple of weeks. That will be interesting. I'm most concerned about the nights. He will still sleep with his pulse-ox on which has the delightful tendency of going off ALL. the. time. Between that and feeds, it may be slightly challenging to get a good nights sleep. 

So it sounds like an adventure in seeing God's provision. Should be fun!

He continues to make huge advancements each day, physically. His new one is playing with/eating his toes. It is crazy, I have to say, because seriously, my son is basically already a Yogi master, except were not Hindu. But, if we were, Shepherd would be a Yogi master. I have yet to capture a good picture but he literally uses his abs and pulls his feet up past his nose, folding himself completely in half. While he was still in utero, they would try to get cute 3D pics of his face for us every week, and they wouldn't be able to because his feet were covering his face. 

Crazy.

Maybe he'll give me some tips.

He's also getting so much better at holding his head up and having upper body strength. Here he is practicing with one of his favorite nurses.

And when he's not doing physical therapy or sleeping, or eating, he is playing with his bro's. I decided I didn't have room for the picture of  Haddon galloping the horse across Shepherd's head, but you know it happens.

Meanwhile, when the boys aren't riding horses across their youngest brothers head, they do things like this....

And finally, while Mimi was in town, I took the opportunity to try my hand at Once a Month cooking.

At this website, she does all of the menu planning, grocery list, instructions, EVERYTHING new every month, and it's completely free.

I'm usually not much for meal planning and all of that. It just seems to complicate my life. And there's nothing worse than a complicated life. But I must say, so far I have been loving this. You cook for one day, preferably with a friend, and you end up with 15 breakfasts, 10 lunches, and 15 dinners. Basically, you have something frozen for every other day, so you still get to cook some. But you clean a lot less throughout the week, too. With the month we had coming up I figured now was as good a time as any. Check it out and see if you like it.

I got to make great stuff like this  Garden Chowder

And Herb & potato pancakes. 

These were GREAT but next time I'm gonna make them with Sweet potatoes so they are healthier.

Lastly, my precious mommy, sent me and my sis to a spa to get a massage, pedicure, and manicure before we go back to the hospital. It was so refreshing/relaxing/rejuvinating and every other "r" word that means it was great. 

I mean, not to say I don't always go to the spa, like say every week or so. I mean of course I do. Doesn't everybody. Have I mentioned I also drive a mercedes benz? Well that's for a different post entirely.

That's a little from this side of the fence. We really appreciate your prayer throughout this weekend. I will be updating the blog on Thursday to let you know how it goes. May God be glorified.

First off, I want to let you guys know how our appointments up at UNC went this week.

Everything went GREAT!!

Besides the minor details like.... I put on all my eye makeup (and that can be a lot sometimes), then forgot mascara.  Yes, lots of eye makeup- NO mascara. This is a problem. And you'd better believe I put our nursing services to work by sending her down to the gift shop with my credit card to see what she could do. 

But, Alas, her talents with medicine could not help her to produce mascara out of thin air. And I went the whole day mascara-less.

THEN, there was something in my contact ALL day (probably all that eye shadow without the mascara- barrier holding it on the eyelid) so at the end of the day I felt like I had a scratched cornea!

Now, besides all THAT, I couldn't have asked for more.

He saw the airway folks first and they decided to bronch him in the next couple of weeks! I can't believe it!

Now, of course when they do the bronch there are any number of things they could see that would give them reason not to take his trach out but if they don't see anything to give them pause they'll go ahead and take it out. 

Then we'll stay in the hospital for a few days to make sure he can breath okay on his own.

I won't lie.

The whole idea of going back to stay in the hospital and going through a procedure with the potential for dissapointment is a little(lot) unnerving.

But I was reminded today that "When we fear God, we have nothing else to fear. But when we don't fear God we have everything to fear."

I've got to remember that whatever takes place on that day is going to be what God has fully intended for Shepherd and He alone is who writes this story... and HE CAN BE TRUSTED.

So hopefully, I'll hear from them on Monday to schedule the big day

! Please pray!

On another note, the urologist (looked at his kidneys) decided that it looks like we won't have to do anything surgically about his kidney. It appears to be functioning and as long as Shepherd doesn't get urinary tract infections while on antibiotics (which he has been on since birth and will continue to be on for the next couple of years) then he should be fine. IF he gets infections then they will have to remove one of his kidneys. But I think everyone feels good about how things look currently.

The nutritionist met with us and is still trying to figure out how to get him gaining, while nursing some,too. It's a little bumpy still at this point. He needs to be gaining about an oz. a day and at this point he is not consistently gaining at that rate. But only time and working out the kinks will tell. We have lot's of options, though. Speaking of Shepherd bulkin up, how hilarious is thhis picture of one of our friends little girl who is.... only 3... weeks... older than Shepherd. Don't you think they bring out the best in each other?

Well, that's the medical stuff.

As far as "regular" life goes, we've been busy with, oddly enough, weddings and funerals. Over the past month Noah has done two funerals and done two weddings, both of which I sang in (the weddings, not the funerals), so that has kept us both very busy.

He's out of town tonight for one of the funerals but by the merciful hand of God, I have a night nurse.

They've been having a hard time about once a week getting us a night nurse and all I have to say about that is calling it a "night" is quite deceiving. Don't people sleep at night? a little?

Between suctioning, false alarms going off, feedings , and diapers- I literally don't sleep. Please pray they find people to cover the future nights coming up. Ultimately, I don;t want to complain though. Most family's with home health are much worse off than us. And for us this is a season. For some families this is the rest of their lives. And then there are the many families who don't qualify for home health but have children MUCH sicker than Shepherd. They never get a nurse, or a break, or sleep, and may or may not have family and friends like we do.

So, no more complaining here. 

We are tired, though. And though on most levels I think we are loving life right now. There are so many subtle things that have big impacts that we haven't quite figured out yet.

I feel  like I'm in this odd place where I'm really enjoying life right now and yet my soul is not satisfied. I feel distracted and disoriented lots of the time and find it difficult to focus.  And there is only one person who requires my focus- and that's the person of Jesus Christ.

I just find it very easy to be self- relient in this season. I find myself trying to solve problems soley with the resources in front of me. I tend to think more about my weaknesses than my Father's strengths. I have very little time alone. It's very easy to be distracted. And the idea of being disciplined or getting up earlier to make sure I get to gain perspective before my day begins seems impossible...in my strength.

 You see. 

I don't want to structure the patterns of my life by what I can do, but by what God can do. 

And thought it seems impossible, I believe he can help me to do WHATEVER it takes to get time alone with Him. When it comes down to it, I just desperately miss deep intimacy with my Saviour. There is nothing else in all the world that can satisfy like His nearness. And in all the busyness and newness of life in the recent months, I've become so distracted.

Yes, I need physical rest but I need spiritual refreshment all the more. 

Of course this makes sense since we are not just physical beings but spiritual beings we need not only to be physically cared for and fed but spiritually even more.

So I'm off to bed so that I can be purposeful about my day tomorrow. So that I can do the most important things, without distraction and with purpose, I pray, with the help of my loving, mighty Father. 

I hope that all makes sense. Sometimes it doesn't even make sense to me. I'm just glad I serve the patient God that I do.

And.....

shots from the past week or 2

Haddon hangin out with a gal pal after church. 

Well, actually she stalked him, but wouldn't you with a handsome guy like that?

These are of the boys "camping like cowboys" on our back porch in the middle of summer, with flannel blankets, around a "campfire." But hey, cowboys do it.

And so do we.

Bdays and Weddings

Well, for our week in review... see below.

It began with a lingerie shower for my 62 year old mother-in-law. THAT there is no pictures of... if you know what I mean.

Kidding.

Kind of.

Then.... was my eldest's 4 year birthday. Not birthday party. We were too busy with wedding stuff for that. That's next weekend. But we had a great BIRTHday just spending time together. 

As indicated above, Aslan got to start his day off with a waffle with chocloate chips melted in top. This is rare enough in our house to elicit the face in the photo above. (Even if it was a whole wheat waffle and the chocolate chips were 60% cocao) Anyways.

We then got to go to the pool with my sisters and their kids, which  was SO great. It was the first time I ventured to the pool with all three kids (and our nurse, of course. How ambitious do you think I am?!) and it turned out feeling just like summer should feel. 

Hot, exhausting, refreshing, all at the same time.

We then skipped naps.. and moved right on to enjoying Aslan's gift from Mimi, which he picked out, a swip and swide- otherwise known as a sLip and sLide.

There aren't any pictures of these events because a)I'm not much for posting pics of myself in a swimsuit and b) the swip and swide is cheap so it only really works when the boys were butt naked and we doused it in dish soap c) I don't post pictures of ANYONE naked. 

Sooooooo.....

After our delightful day outside, just bein 4, Daddy took us to Red Robin and Aslan enjoyed way more Freckled Lemonade than any one child should consume in one evening/ year.

All in all, it was  a GREAT day. I am so grateful to call that 4 year old mine.

That 4 year old AND that 2 year old. Why? Just feast your eyes on this precious moment (speaking of which they should make a precious moments figurine of THIS moment. I'd buy it)

Haddon had woken up cranky after his nap and I told Aslan to go love on him to make him feel better. awwwwwwww.

AND

THEN......................

THE MOMENT WE'D ALL BEEN WAITING FOR..........

THE JOYNER WEDDING.. AGAIN!!!!!

but for the last time

I will definetely follow up with some more pics and hopefully the video from the wedding, but it was UNBELIEVABLE!

Shepherd thought so... enough to make sure I dressed him in the wedding colors.

It was a great week and now we are going to recover.. and sleep.. maybe.

***************

Please be praying for Shep's appointments this Thursday at UNC. He will see the pulmonary folks about his trach and we'll hopefully schedule a bronch for August. He'll also see the folks about his pelvic kidney.

I have also been meaning to share a very special prayer request with you all.

There's a family at UNC that we met while up there and I am asking any of you who know Jesus personally to be praying for a miracle on their behalf. We happen to know that they DO happen, don't we?

They are staying up at the RMH and have been there about 5 months now. Their 11 year old was perfectly healthy when he began slurring his speech, blanking out and having horribly violent seizures. He was brought in and has continued to deteriorate over the months. They have done every test they know to do and still have NO IDEA what is wrong with him but he is literally wasting away.  He is in the PICU, does not eat and won't last much longer if they don't find out what's wrong.

Please, PLEASE pray with me. Those doctors are only human and DO NOT have infinite knowledge, but if you know the one who DOES, please pray that he will reveal it to them so that this sweet boy may be healed to the Glory of God. 

Without God's help there is no chance, but our God is so merciful and so good.

Please pray with me.