LEGO TO GO

While at Vanderbilt, Jacob was not able to get out of the bed for 4 days.  Each floor has a playroom for the patients go to for entertainment but, with his confinement, he wasn't able to go.  He was able to get the mobile Wii rolled into his room on two of the days and one lady came by to do a science experiment with him and another to show him her dog.  Each activity really lifted his spirits and it showed us how important these moments were in his recovery.  He went the first 3 days without hardly talking (VERY uncommon for Jacob...I know some of you probably cannot even believe it).  As soon as the Wii was rolled in on the evening of the third day, he became animated for the first time and more interactive with us than he had been the whole time. 

It's completely understandable how children who are unable to leave their rooms cannot enjoy all the therapeutic entertainment offerings that the hospital has.  We were blessed with what he did receive but those resources are limited.  There are only 2 portable Wiis for the entire children's hospital and the in-room activities are based solely on volunteers coming in.  So, all this got us thinking about what we can do to brighten up the hospital stay for these children who are itching to get out of their beds but cannot.  Prior to his surgery, Jacob and I had already been brainstorming ideas of how we could help other kids in need this Christmas.  So, these two opportunities to give just fell hand in hand. 

I had kept thinking how much Jacob would've enjoyed having his Legos to play with. They would've been very helpful in getting his little brain stimulated after so much sedation.  This past summer, I had created these travel size containers that I had picked up on clearance at Michael's that I dubbed Lego to Go tins.  With all the doctor's appointments that were on our calendar, I thought this would be a great way to beat the waiting room crazies...child going crazy then mommy going crazy.  This little creation of mine only cost a few dollars but has saved me over a dozen moments of insanity while we wait.  The doctors were used to having little Lego pieces spread out everywhere and I'm sure they appreciated it, too, because it allowed us time to talk uninterupted.  That little 2"x4" tin has the power to keep my busy, busy Eli completely still for 45 solid minutes.  There's just something about those pint size little containers with their names on them that they love.  And, I love them, too.  

I also love to take something useful that I've created and recreate it for others.  The desire we have to help the confined patients and the joy over our little Lego tins have merged and on our follow-up visit right before Christmas, we want to take an armful up to the 7th, 8th and 9th floors at Vanderbilt Children's Hospital and hand out to these children. 

Here's where you come in....if you'd like one for your children, we will be happy to personalize one for you.  For every ONE that you purchase, we will donate ONE to Vanderbilt.  Jacob and I are working together....he already assigned himself the job of writing down orders, writing notes inside each one and distributing them to the children.  Since he's still confined to a bed until Christmas, that's about all he can do.  But, his heart is so into this. 

Please send me an email through facebook if you'd like one (or more).  By having only one method for ordering, that will help me keep track of them more accurately.  If you tell me in person or text me, I can guarantee you that I'll probably forget.  All the other details are outlined in the pictures that follow.  Any questions can be emailed to me as well.

So, doing a little shopping for your child, your neighbor, your nephew, (yourself, lol), and know that with each gift you buy, you will be bringing a little beam of joy into the hearts of the patients who receive them and into the heart of the little patient who will be giving them.

I can do custom orders for $3 extra per design:

 60 minute wait before his bloodwork:

90 minute wait before his biopsy:

OPERATION

When I dropped Eli off at school the other day, his teacher told me that they were making Christmas Wish Lists by cutting pictures of the toys that the kids want for Christmas out of toy catalogs.  I laughed and thought to myself how Eli's page was sure to be a mosaic of every toy imaginable.

When he got home, I was very surprised to open up the supersized piece of construction paper to find not 25 different items like I'd imagined but, instead, only 3 little images gluesticked to the paper.  Each one was a surprise to me at first, since he's never mentioned any of the three.  But, after a second glance, they all made perfect sense.

Eli's Christmas Wish List

1.  Angry Birds - not because he really understands a thing about those birds but because his bubba is crazy over them.  That alone makes them tops in Eli's book.

2.  Monopoly - this is what we call the "grown up game".  He's gotten it out of the game closet many times and asked, "Mommy, peas play a game with me?"  I always say, "Eli, that's a grown up game.  Let's pick another one."  I'm not sure if this wish list selection signifies his desire to be a big boy, his desire to play a game with mommy or a little of both.

3.  Operation - {melt my heart} he knows his bubba broke his legs, was in the hospital and now has to stay in the bed.  Knowing the hero status that he places on his bubba, I think this is his little way of showing his concern.


After showing Jason the list and laughing over it, I went to the game closet and pulled out, not Monopoly, but Operation instead.  A benefit of being a little brother means that big brother already has most of the toys you'll ever want.  Not knowing we already had this game, Eli gets wide-eyed, lets out a little giggle and whispers, "Operation!"

We take turns trying to fish those little pieces out and Eli erupts into giggles every time I get startled after touching the side.  When it's his turn, he says that it 'cares him and says, "Mommy, you do it for me?" 

Never wanting to miss a good photo op, I pull out my camera and snap away as he finally works up the courage to operate.  With the nose lit up, the game vibrating and the little pieces rattling the entire time, he starts to fish out parts all by himself.  And, you can see from the pictures that he wasn't 'cared a bit!

This is what I'd hoped recovery would look like.  It's not always this quaint but it is allowing us moments of togetherness just like this one that we normally don't make enough time for.  Such a blessing.

We just happened to have this Operation shirt. Eli had picked it out for his daddy

to wear to his circus birthday party because he says, "It have a clown nose." 

Jacob declared that the winner got to wear it.  Of course, it was after he'd already won :)

The Voices of Many

I'm not quite sure where to begin....

Should I start with how amazingly well Jacob is doing since his surgery one week ago?  Or, should I start with how well the surgery and the 5 day hospital stay went?  Or, maybe I should start with proclaiming:

OUR GOD IS AWESOME!

Yes, I think I'll start with that one. 

Here are the facts: 
1. My son had both his legs broken and he now has 12 metal screws and 2 metal plates holding them together. The visualization of my child being broken in two was so.much.more than I could bear at times.

2. The surgeon admittedly said that he would not perform this surgery on his own child because the pain would be too intense.

3. None of the nurses caring for Jacob had ever cared for a patient with this type of procedure because it is that rare. One nurse told us that she had to google it and another nurse said that she bragged to all her nurse friends that she had a patient who had a femoral anteversion bilateral osteotomy and they all exclaimed, "Whooaa". 

Now, here's the truth: 
Jesus Christ, having overcome all pain at Calvary, is BIGGER than any pain and any fear that threatens to overtake us.  And, we are front row witnesses to His awesome POWER to take it away.  And, let me tell you...it is a pretty amazing thing to see.

We have finally quit waiting for the moment where fear or pain would take hold of Jacob.  Leading up to the surgery, we thought maybe he was putting on a brave face.  We thought, surely, at some point, he would succumb to the fear.  It never happened.  After surgery, I asked him if he was ever scared and he said, "No, because you told me that God was going to heal my feet."  Plain and simple.  My child was living out his faith in God's promised healing with such simplicity that will forever cause me to consider him one of the most courageous people I know...and he's 8.

Throughout his stay in the hospital, we kept thinking, "The pain is going to set in at any time."  We waited and waited and anticipated and anticipated and....nothing.  There were 3 moments of intense pain but we believe it was more in his head mentally than in his body.  Those three times showed Jason and I how incredibly helpless we were to help ease the pain.  Those glimpses of what our present reality could've looked like, and what we were told would look like, was enough to tell us that we were in no way prepared for it. 

While pain has not been a major factor like we'd anticipated, Jacob is still confined to the bed at least until Christmas.  His legs are difficult to move and he is under strict doctor's orders not to bear any weight whatsoever on them.  We have to pick him up very carefully because that's when the pain surfaces.  After 6 to 8 weeks, he will start with baby steps with the assistance of a walker until he can regain his lower body strength.  The biggest challenge now is keeping that smart little brain of his stimulated.  He does not object to all day tv watching so it's up to mommy to turn it off and turn on his imagination.  And, we are happy to have visitors!  He was smiling from cheek to cheek when his friend, Emma, came over the other night and played the Wii with him.  Our door is open, so come on over!

Another HUGE praise is that Eli's celiac results came back NEGATIVE!!  Praise the Lord!!  I think I was finally able to exhale when the doctor told us that.  He was diagnosed with Esophagitis because she saw excessive inflammation and irritation in his esophagus.  A biopsy confirmed this diagnosis, which means he's basically had heartburn his entire life.  The constant hoarseness of his voice is a result of this.  He's now on medication and we hope that it will bring him some relief.

All in all, I truly feel like God has moved mountains for us.  These two separate medical journeys have defined our lives the past few months.  Over and over, we have pushed anxiety back as we prepared for the worst case scenarios in both situations.  Had these two journeys occured at different times instead of simultaneously, I don't think we would've been so desperate for the Lord to intervene in such a miraculous way.  So very clearly, the day I received the unfavorable test results of Jacob's celiac labs, the Lord laid this verse on my heart:

"And we know that in all things God works for the good of those who love him,

who have been called according to his purpose."

Romans 8:28

I was amazed at the translation of this verse in The Message.  It perfectly summarizes our life during this journey:

"Meanwhile, the moment we get tired in the waiting, God's Spirit is right alongside helping us along.  If we don't know how or what to pray, it doesn't matter. He does our praying in and for us, making prayer out of our wordless sighs, our aching groans. He knows us far better than we know ourselves, knows our pregnant condition, and keeps us present before God. That's why we can be so sure that every detail in our lives of love for God is worked into something good."  Romans 8:28

God has taken these two events and woven them together so intricately because He's up to something. I can feel it and I can see it; not in it's entirety but in what He's chosen to illuminate thus far.  The depths and the heights that it has taken me, taken us, to is all for the purpose of drawing us closer to the One whose path we so desperately seek to follow.  It has changed my heart and my purpose. 

I believe that we have seen the power of the Lord manifest itself in such a mighty way because of the words spoken by so many of you.  I have received so many heartfelt messages telling me of your prayers for Jacob.  Some have even written out their prayers and I have spilled tears while reading them.  While my sighs and groans prevented me many times from uttering a single word, you have acted as an intercessor and spoken on my behalf.  You have pleaded and proclaimed divine healing and I am here to tell you, our God listens.  From the bottom of my heart, thank you.  We will forever walk in awareness that Jacob's path was straightened by the hands of one and by the voices of many.

Unfinished Words

After a long day of surgery, I had sat down to blog about the day's events and to update everyone.  However, due to very little sleep the night before, the 4 1/2 hour surgery, the visitors, the curled-up-in-a-ball-on-the-bathroom-floor, sobbing, barely breathing mess that I was the moment I knew my child was being cut in half, and the surge of emotion when my child awoke and said, "Mommy, hug me", I was simply too tired to finish and I stopped mid blog.  Seeing that I hadn't finished, I was just about to delete this post but decided to re-read it first.  These reflections, so raw, cannot be recreated however unfinished my words were.  Never do I want to forget what the Lord has done.  So, here it is...

One thing God has spoken,

two things have I heard:

that you, O God, are STRONG,

and that you, O Lord, are LOVING.

Psalm 62:11-12

For someone who usually has so much to say, for once, I am simply speechless.  There are simply no audible words that can translate the sentiments deep within my spirit, tucked deep within the very core of me.  We have felt the consuming fire of the Lord.  We have been shaken to the point that what cannot be shaken is all that remains.  We have been kept safe in the cleft of the rock; have soared on wings like eagles.  We have fallen prostate before Him; have begged Him to take this cup from us. 


But, that was not His will. 

The Word of God has spoken and we will never be the same.  Never.  We are now on the other side, exhausted and exhilarated all at once.  Our first born will now find the healing that can only come through brokeness. 

And, he will never be the same.

When Jacob awoke from his sleep, he thought,

"Surely the Lord is in this place, and I was not aware of it."

(Genesis 28:16)

No Better Medicine

Well, the planning and preparing have come to an end and the big day will begin in 5 short hours.  All week, tears have brimmed the surface and spilled out at the most unexpected times.  I've waved people off who tried to talk about "it".  With one look at my scrunched up, I'm-about-to-cry face, they have kindly understood.  With every step that brought us closer to here...dropping Micah off, saying goodbye to classmates, leaving our house, hugging Eli one last time...the knot in my stomach tightened.  I can testify that walking by faith is not always easy, especially when your children are involved.  But, my hope remains set on knowing the pain has a purpose. 

With all the heaviness that this looming day has had upon us, I'm so thankful that tonight there has been such a lightness that could only come from God above.  We have laughed until we cried, acted silly and watched our boy in wide-eyed fascination like we hadn't in years.

In all His infinite wisdom, the Lord knew that there was no better medicine than to have Jacob spend the night with his best friend, John, the night before his surgery.  Best friends since 3 months old, this boy loves my boy more than anything else.  They have been wrapped up in their own little world and shared a night full of Chuck E. Cheese and swimming.  We've watched his little feet dance, run in a hamster wheel, pedal, flip, kick and run with such painful realization that, come tomorrow, they will be painfully still.

I had thought I'd be spending the night holding him tight while he slept and I silently cried.  Instead, he's with John, and his mom (my best friend) just texted me this message:

Jacob and John have not stopped creating or talking!  They haven't even turned on the tv.  John just said, "Jacob, you're like my brother, not in birth, but like in love." Jacob said, "So are you saying you love me?"

No better medicine. 

John had big plans to crawl up into the hospital bed with Jacob after surgery and has a bag of games that he packed, ready for them to play.  I'm not so sure that will be happening but the love that the bag represents is priceless to me.

Everything about this day has been perfect.  I couldn't ask for anything more.  My child feels so loved by so many.  He knows you are praying.  He knows that Jesus is with him.  He is ready for that next step, as broken as it may be.  His brokeness will lead to complete healing.  His crooked path will lead to a straight path.  The pain has a purpose.  Oh, God, please be near him.

Update

I just wanted to write a quick post to update everyone on the events of today. Let me first say that I have been BLOWN away by all the personal emails and comments that I have gotten over the course of the past few weeks.  Friends that I haven't seen in over 10 years reaching out just to let me know they're praying...simply blows me away. 

So, back to today...  It was as completely un-newsworthy as we'd hoped it would be.  Going into today, we knew it would go one of two different ways.  Dr. Gillis would either see scarred and damaged intestines which are obvious signs of celiac or she would see perfectly pink ones.  She saw the pink ones :)  This does not mean that there is no celiac disease, just that if there is, the damage is still microscopic and will have to be assessed under a microscope.  In her experience, she said it is very uncommon for her to see any evidence of celiac in a patient as young as Eli.

We will have to wait a week before the labs come back, which is nothing compared to the time since the word "celiac" first walked through our door back in the spring.  One thing I hadn't mentioned yet is that she had requested that we bring Jacob with us.  Celiac disease has a STRONG genetic component.  It is inherited from a parent, and, siblings have around a 30% chance of being celiacs as well.  While Jacob's bloodwork was not as alarming as Eli's, it is still questionable.  So, that, plus his short stature (20th percentile) along with Eli's blood results/symptoms raised some red flags.  After lunch, she met us in her office for 45 minutes as she examined Jacob and asked lots of questions.  She has worked it into her schedule to tag team with his pediatric orthopedic doctor next week during his surgery and will go in and do both an upper GI scope and a lower GI scope before his hip surgery.  Bless his heart!  The poor boy will be put through the ringer.  Also, she will deliver the results of Eli's labs to us at that time.  I think I'm safe in assuming that this hour will prove to be the one in which our little roller coaster car will have reached the peak and, in a blur and with a big WHOOOSH, it will come back down.

11-11-11

Does Eli have celiac?  To the naked eye, no.  To the lens of a high, powered microscope, possibly.  Our eyes are not designed to see the invisible but it doesn't mean it's not there.  I'm not going to pretend like I know what the plans that the Lord has for us are.  I often remind myself of something my mom said to me years ago during another time of uncertainty in my life, "Becky, the Lord has never failed to order every single one of your steps." 

I wish I could squint really hard and try to catch a glimpse at the darken path that lies ahead so that I can "be ready" for it.  But, there comes a time when I have to realize that my eyes, like Dr. Gillis' eyes, are not created with the ability to see the unseen, no matter how hard we try.  Only when the Lord chooses to illuminate what cannot be seen by our power alone, can we see the next step that He has marked for us.

We walk by faith, not by sight.

There is no room for fear.

I am getting tested today.  The results should  be back next Friday, 11-11-11...big day BUT an even bigger God.

Click, Click, Click...

Picture this:  You're at an amusement park and there in front of you lies the mammoth, fear-provoking wooden roller coaster.  The sight of it alone produces great anxiety within you.  After assessing the risk vs the reward, you decide to go for it.  Once you've made that decision, the fear somewhat dissipates as you wait in line.  The fear bubbles up again once you realize that there's only 2 or 3 people ahead of you and your turn is almost up.  Once you get into your seat, you tighten the seatbelt so tight that you can hardly breathe.  Then, you pull the harness down, exhaling in hope that it might go down another half inch.  Last, and all that you are really able to do at this point, you look over nervously to your partner, put on a fake smile and say, "Are you ready for this?"  The look on his face says it all.  There is no more room left in that tiny car for bravado so he doesn't even pretend to have it all together, and neither do you.

You start down the tracks with a white face and a death grip.  But, a strange sensation always seems to happen.  The fears that threatened to suffocate just seconds ago give way to the burst of light that comes once you're outside the loading station.  The elevated view, the breeze and the warm sunshine make you think, "Hmmm, this isn't so bad after all."  So, you loosen your grip and relax a bit. 


BUT, then it happens... 


What seemed like a fun, mildly thrilling ride all ends when you hear the click, click, click, indicating that you are now making the ascension to meet Goliath.  This sloooow climb takes you higher and higher. 

Click, click, click. 

You are reaching a point that is making you a bit too uncomfortable. 

Click, click, click. 

Your climb is slow enough that you can look over and see stairs running alongside the tracks.  Stairs??  Why in the world would there be stairs?  You're only a million feet up in the air.  Who in there right mind would climb those? 

Click, click, click. 

Your stomach is in knots.  You realize that there is no way out.  It is inevitable.  This thrill ride is not so thrilling anymore.  Up ahead is a 20 story drop and 2 loop the loops.  All you can do, since you can barely even breathe, is pray.

Tonight, I laid down next to Eli until he feel asleep.  He was curled up next to me, holding my hand and I started to think about what's to come in less than two days.  With each thought, I felt my stomach going, "Click, click, click."  The long climb that we have been on is nearing the tiptop.  Jason and I have waited and waited, buckled up, uneasily looked at one another with fake smiles on our faces, and found courage in knowing we're in this together.  I can't speak for him, but I know there have been many moments when I have wanted off this ride.  I've begged the Lord so.many.times to let me out of the car  and allow me to take the stairs.  But, ever the Good Shepherd that He is, His answer is always a big N-O.  The climb has been so looooong.  But, here we now sit, white-knuckled, less than two clicks away. 

No turning back. 

We will find out soon whether or not he has celiac disease.  I have so many emotions tied up in this child and this possible diagnosis that I can't even begin to type them all out in an eloquent way so I won't.  Like all the hairs on my head, the Lord knows them all and that's all that matters.  All I will say is that my sole desire for this sweet boy, who is so full of life, is to be able to enjoy it to the fullest for once.

After Eli was asleep, Jacob sweetly asked me to snuggle with him.  Oh my...my heart breaks within me to know that I only have 9 more days to do that.  How could I ever refuse?  So, we lie there and my stomach is going, "Click, click, click".  The anxiety almost seems like too much to bear.  We talk about his surgery and I ask if he's scared.  He tells me no but that he's worried about what will happen if he sleepwalks?  I want to both laugh and cry.  Laugh because he is so innocent and cry because he is so innocent.  He is so trusting in us and the decision that we made for him.  Once again, those doubts creep up.  Anxiety is great within me and I would love nothing more than to be on that set of stairs and leave this all behind.  However, the stairs do not bring any more security than where we are currently sitting.  In fact, there is much greater risk in taking the stairs.

I hear him breathing heavy so I know he's asleep.  When I get up, I take another look at him and the sight of him says it all, "Do not take the stairs.  Breathe."  In his relaxed unconsciousness, his legs have flopped over in such a way that would make the average person scream in pain.  As terrifying as it may be, I KNOW we are to stay strapped in and remain on this ride.

Make straight paths. 

Click, click, click...

I long to be pulling safely back into the loading station, coming to a complete stop, climbing out of the car and taking a full breath.  I long to be able to look at Jason and know that we have gotten through it and everybody came out okay.  But, we're not there yet.  The clicking of the car making the climb signals that the ride is still in motion and there is nothing left to do but pray.  Because we can barely breathe, sometimes even praying is difficult.  That is why I find so much comfort in knowing that it is not just Jason and I on the ride but, rather, there is car after car of friends and family, praying for protection on our behalf.  You have NO IDEA how much this means to us.  We don't need homemade meals or free baby-sitting (although we'd never refuse those either, lol).  We simply need your prayers.

As the clock clicks down for Eli's biopsy to

November 3 at 8am

and for Jacob's surgery and biopsy to

November 11 (11-11-11) at 6am

please remember us as you petition the Lord.  There is no greater gift you could give to us than your time spent on your knees.

May the fruit of your prayers result in this: 

Notice that everyone is holding on but my two boys.  Complete and utter fullness of life.