A Trip to the Fire Station

Today was an exciting day for our little man. We were able to take him out of The Shrine, and on a field trip to a local fire station! He, of course, was super excited. We loaded Levi up in his chair into one of the transport vehicles, and headed out of the hospital for the first time (for Levi) in several weeks. It was a beautiful day for it as well, because the high here in SLC today was 61 degrees. (November, where art thou?) 

Ready to roll! 

Learning about a fireman's uniform

Mommy being tortured

Squirting water out of the fire hose! 

All in all, it was a great morning, and we topped off our outing with lunch. Levi definitely had a good nap once we returned. :) 

A Psalm for Tuesday

"Be strong and let your heart take courage, all you who wait for the LORD!" 

Psalm 31:24

A friend posted this scripture on Facebook this morning, and it really struck a chord with me. So, naturally, I deemed it worthy for the blog. In all seriousness, we could not handle this adventure without the Grace provided to us during this time, and we are surrounded by it. As one person so aptly put it, it's like being cushioned by a Grace that you only receive in times like these, when you absolutely need it. And it's absolutely true. We are comforted by it, strengthened and encouraged...and cushioned. 

So if you are in a place where you need a little bit of cushion...take courage. And wait for the Lord. 

Hospital Holidays...and fake turkey...

As is his customary practice, Levi decided to go on a hunger strike for Thanksgiving. (As he seems to do for every holiday...that or find a way to injure himself.) Not much was lost for him in the way of a turkey dinner, however. The...ehem..."turkey" was a little disconcerting. I prefer to call it as I see it. In this case, "spam turkey" seems appropriate. But I digress. 

All in all, Thanksgiving passed in a mild way. We were very thankful indeed to have Daddy, and both Papas join us at The Shrine. The day moved in and out of football, naps...snacking, and a very appropriate Christmas movie. (Shout-out to How the Grinch Stole Christmas!) We definitely missed homemade gravy and the company of family at home, but no one was overtaken by severe depression, and so we sailed through... 

Black Friday descended upon us with a looming trip to Ikea... for my mom and me. The men stayed behind to partake in more football therapy, and some tether ball, where Levi could fit it in. We exhausted ourselves at Ikea, and only for a few measly items...lame. It was good to be out of the hospital for an extended time, AND the inevitable Holiday tunes have begun on the radio, so our car was full of cheer. Cheer and Starbucks to be exact. 

Levi continues to do well with the Traction- his surgeon even commented that his body has responded so well, he is in fact, ahead of schedule. (Now only if we could arrange the surgeons' schedules to match.) He is probably 2 inches taller, which tends to happen when one gains a neck. He is at max weight now (12lbs) and is cruising all over as fast as he can manage. (Which happens to be pretty fast.) So now, at this point, we begin the wait for surgery, and Levi continues to defy gravity with his "weightlessness". Heh. 

Here are some pics from our four-day weekend with all of the men folk: 

Levi had a visit from a policeman! (They shot guns...that's ma boy!) 

Levi got his very own badge.

Thanksgiving lounging...the sport of champions.

Mom trying to understand why we would inflict Cooties on our children.

Dad frowns upon Cooties.

Charlotte observes Thanksgiving from her Boppy.

Daddy and Charlotte 

Papa Emery, Daddy, and Charlotte enjoying Feast Numero Dos. 

Papa Clark and Macca

Levi and a new "friend" playing hockey

How Charlotte prefers to travel.

The Weekend and Other Stories...

I apologize for not having posted in a few days, but when the weekend rolls around, we get visitors! Daddy comes on Fridays, and this weekend, our friends/pastors, Andy and Lisaann and their daughter Grace, joined us for hamburgers, Bingo, and some competitive tetherball. (Is there any other kind?) Thanks to our kind friends for sending care packages to Levi...and holy cow! The gifts just keep rolling in for this kid. Let me just say, it is a good thing that we drove a minivan... Meanwhile, I should apologize to Santa for his current competition.

Levi had a few X-rays taken on Thursday afternoon, and the improvement in the short amount of time that we've been here is remarkable! One of his doctors commented that the X-rays looked "wonderful". (For a spine surgeon to use such bright vocabulary suggests great things!) :) So what'dya know...the traction is working beautifully! (For those of you who require technical details, I can add that, in the beginning, the side view of his neck looked as though it were broken, and leaning at a 90 degree angle... and now his neck is standing straight. Needless to say, he has gained a couple of inches in height...) He is now at the max weight of 12lbs. Levi continues to attend the regular evening activities, and seems to be taking an interest in painting. (We now have several Picassos adorning our walls.) My walks also remain on our daily to-do's, but sadly, the before mentioned Mr. Snowman has since lost his head. The nearly 2 feet of snow that we incurred in one weekend has now almost all melted away. The now headless Mr. Snowman still presides on the hill as I pass by...

 Sunday afternoon has settled in, our company has gone home *sniffle*, and we return to our regularly scheduled program. We are looking forward to this next week, and the beginning of the Holiday season. We have much to be thankful for indeed! 

Gobble.

 Levi painting a mask

Straight Neck! 

Levi and Daddy playing with the racetrack! (What else are Saturdays for?)

We have now been in SLC for a week... and it has flown by and dragged by all at the same time. Our routine has somewhat fallen into place, and that helps to pass the time. I am reminded every day that, if not for my mother's presence here, I would not eat. Simple as that. Well, maybe I would. But it would be cold, pasty oatmeal...how very appetizing. 

Levi is now up to ten pounds on his weights. For those of you who see us regularly, this next part will make you excited... he no longer walks with a limp! Too cool. Sleeping has been the biggest challenge, because it involves lots of tweaking. There is a fine balance of making sure that he has at least some level of comfort, tilting the bed so that the weights hang properly down the back of the bed, while also tilting the bed enough so that he isn't pulled up to the top of the bed. (Thanks to the weights.) It's complicated. Since one pound of weight is added every day, we 'tweak' constantly. It's a constant process, but we seem to figure it out daily. Levi does really well, and since we've *sort of* figured out the bed, he doesn't complain as much when it's time to go to sleep. 

Mom and I are taking turns doing the all important Starbucks runs, and, again thanks to my mother, I am able to get in a daily dose of cardio. Charlotte and I have begun to tackle what we affectionately refer to as, "The Hill." The hospital sits on a hill, and the road leading down into the surrounding neighborhoods and also the downtown area is called Virginia. (I am convinced that there is at least a 7% grade on this beast.) Every day before lunch, I load Charlotte into our trusty Moby wrap, and off we go! It's downhill for the first half...so that's fun. (Haha) In all seriousness, it is a great way for me to get some fresh air, throw on some tunes, and clear my head. 

Levi has made friends with all of the staff members here. (Big surprise.) Not to toot our own horn here, but all of the doctors, nurses, and staff are constantly telling us how very smart he is. (Again, we are not surprised...hahaha.) He is fearless at making new friends with the other kiddos that come through here during the week, and he is currently working on mastering the game of Ping Pong. If any of you would like to drive down here and volunteer as the ping pong ball 'chaser' we would not turn you away. 

There are volunteers that show up almost every night of the week to do fun activities with the patients, and since we are almost the only ones pulling an extended stay, Levi usually gets the activities all to himself. So far, he has bowled, played pool, ping pong, and had a few foot races. Rumor has it that Bingo is Friday nights, but we shall see. 

Tomorrow is a Holiday Bazaar here at The Shrine, so hopefully that will be fun. I am sure Levi will find several items that he, "needs." We are looking forward to our weekend visit from Daddy, and this week, also from some dear pastors/friends. In the meantime, enjoy some more of our awesome photos... : ) 

Painting a wooden race car with his friend, Andrea. (Child Life coordinator)

Bowling 

Charlotte enjoying Activities Time 

This is Mr. Snowman. We walk by him every day. 

The greatest boy's 'doll house' ever. The Firehouse. 

Monumental moment today: Levi's bed was put on 'the block'. He has enough weight now that he is pulled up to the top of the bed otherwise. We are making progress! 

Outside playing in the snow! This was his first outing since we arrived. The pins can ache if they get too cold, so we have to be careful of the temperature. 

Let It...Snow?

Our weekend began with some early Christmas cheer... SO.MUCH.SNOW. Our room has a fabulous picture window that overlooks *basically* the greater Salt Lake area, and we take full advantage. Heh. 

Snow! 

Thanks to the Great Salt Lake, the city takes full advantage of what is known as 'Lake Effect' snow storms. Basically, we had our own personal snow globe for a few days. 

Daddy was able to join us on Friday for the weekend, and Levi put him to work playing basketball right away. As you can tell from the photo, he is getting around in his walker just fine... 

On Saturday night, David and I were able to get away for a couple of hours to grab some dinner outside of The Shrine. (Thank you Mom!) Luckily *insert sarcasm here* we chose to go out at the same time that the Utah Jazz were playing downtown. Yaaay traffic. We did have a yummy meal at The Macaroni Grill, and enjoyed the snowy view of downtown, complete with a few twinkle lights. 

At this particular Macaroni Grill, there is a budding tradition where patrons will sign empty wine bottles that the restaurant will then display...sometimes for several years. (Apparently thanks to Utah being...well, Utah, they aren't allowed to have full wine bottles out on display...as dutiful patrons, we were happy to oblige them...) 

So we signed a bottle! 

*Note to readers: we did NOT consume an entire bottle of wine for the sake of this photo opp. Put your minds at ease.* 

Meanwhile, back at the ranch...

All in all, the first few days here have been a happy, frustrating, busy series of adjustments. Here are a few extra photos from the weekend...

Charlotte enjoying the snow

Charlotte saying hello to Big Brother after napping

David's rental car post snow storm

And finally, here is a short video of the rockin' snowflakes that we enjoyed... 

Day 1: Halo Application... and all the odds and ends

Day 1: Halo Application... and all the odds and ends

Levi and his posse, (ie my mom, Baby Charlotte and myself), arrived in Salt Lake the night before Levi was to have the Halo applied. I will generously spare you from the ridiculous details of finding our hotel in the middle of rush hour, pulling over to feed a baby, almost missing an exit and nearly taking out another innocent (but grouchy) driver... never mind. The important thing is that we arrived safely, and managed to get a few hours of sleep before our ridiculously early check-in time. *Irritated Facial Expression*

6:00 am Thursday, November 9th, Levi went into a minor surgery to have the Halo Application. The surgeons kindly refer to the halo 'hardware' as 'pins'... LIES. Frankenstein would be proud. Fortunately, the kids seem to hold up just fine, and although I had to brace myself before seeing him in recovery, he passed with flying colors. The nurse that kept an eye on him during the application was floored at how amazing he was... yes we know. Levi is the man. 

We spent a couple of hours in recovery with Levi while they checked to make sure that he was eating and drinking properly, and then it was off to Shriner's Hospital...or as the kind personnel at Primary Children's refer to it... The Shrine. (HAHA) 

Levi in recovery directly after surgery

In recovery, feeling better after a snack and some juice

Transport (Levi got to ride in an ambulance...the coolness factor rises) 

Once we finally arrived at The Shrine, they checked us in to what will be our home for the next four weeks, and took us on the Grand Tour...complete with awesome, off-road wagon. 

Once our tour was complete, it was time to put Levi in Traction. (Woo hoo!) There are three sets of Traction, because he is to be in Traction 24 hours a day for the duration of our stay. This allows for optimum treatment before surgery. So, there is a pulley system attached to his bed, a small (and awesome!) wheelchair, and a walker. These devices allow him to be just about anywhere, and still be in Traction. 

First nap

The traction is a system of pulleys and weights that slowly pull his neck into a straightened position. They started him out at 5 lbs of weight, and will add 1 lb per day until he reaches 40-50% of his body weight. That way, he will be at the max amount of weight for the most time possible. We relate it to having braces, and he is on some pain management because, as you can imagine, he gets a little sore. 

Here at The Shrine, there are lots of nurses, a team of physical therapists, and doctors that round once/day. We cannot say enough about the kindness of these people- they have really worked hard to make us feel as 'at home' as we can! 

My trusty sidekick (and all around professional of all things mom)

The end of our first day. Grabbing some grub in the cafeteria...and we found a super hero movie...WINNING.

The Adventure Has Begun! 

For those of you just tuning in, I will give you a brief background as to how we ended up on this little journey: Levi was born with congenital defects in his spinal column known as kyphosis (scoliosis in the neck), as well as scoliosis in his shoulder/back. In the three years since he was born, we have learned a lot about his 'condition', and just recently, ways to overcome it. 

If left untreated, the kyphosis/scoliosis would present a high risk of damage to his spinal cord, as well as pulmonary issues, back and neck deformities...the list goes on. Since the kyphosis (90 degree curve in his neck which includes a roller coaster-like twist) is already at such a high level of severity, the sooner they treat him, the safer (relatively) it will be to do so. 

Already having a great team of specialists in Boise, we were referred to Primary Children's Medical Center in Salt Lake City, Utah, to see Dr. John Smith, an orthopedist specializing in Scoliosis. He suggested placing Levi in 'Traction' to stretch his neck as much as possible for four weeks, in order to create room for spinal surgery and fusion. The surgery is high risk, but (insert answered prayer here) we have been blessed with some of the most experienced, sought-after surgeons in the world. As a quick example, Dr. Smith just returned from Japan, where he was the guest speaker at a conference on Scoliosis. He is now currently in Ireland for the same thing... Also, his doctor here at Shriners Hospital is the dude that invented the treatment known as Traction...yep. Levi is hanging with some smart folks this month. 

Now that you're caught up on the why, we will tune in to the how...