December and Christmas

I wanted to start out the month by getting a visit to Santa in.  So to the trusty mall we went.  The Santa last year was plain gross but the Santa this year was great!  Carter started getting nervous about seeing Santa before we even arrived at the mall.  He kept telling me "I already sent Santa a letter at school.  He already knows what I want, I don't need to see him."  I told him that's fine but if he didn't get a picture with Santa for his mom, then she would write Santa back:)

 He was a little shy at first but did tell Santa that he wanted Legos and a remote control train or car.  I made Carter go first because I knew when we added Jackson to the mix, it would get ugly.

 And.....I was right.  As soon as I steered Jackson towards Santa he tried to run away and started crying.  But as traditions go, I quite like the screaming pictures with Santa.

Bless Santa's heart as he held Jackson with a death grip while I snapped a few pictures.  Neil kept whispering "Let's go, that's enough."  The boys will thank me later for these priceless gems.

December brought the re-introduction of a few foods back into Jackson's diet.  We tried giving him fish when he was much younger and it wrecked havoc on his poor system.  We decided to try it again and it was a beautiful outcome.  Not to mention Jackson loves it.  Our neighbors gave him fresh Halibut from Alaska.  He had a $30 dinner that night.

Something we've been working on since Jackson turned 1 (not kidding) is to have him ditch his bottles and drink his milk out of a sippy.  The problem is that he has to drink some horrible tasting formula and needs to drink A LOT of it.  And thanks to being denied food when he was a baby he has a bit of a mild oral aversion.  Although some days it feels more than mild:(  We have bribed, threatened, prayed, pleaded, cried, cheered, groaned, tricked, forced, you name to get him to drink milk from a sippy.  But come to find out, Jackson is stubborn.  The picture above shows him drinking a tiny sip or 2 to get a bite of his favorite sorbet.  But that only lasts for a minute.  We've even taken the bottle away cold turkey and no matter how hungry or thirsty he gets, he will not give in.  I've taken him to feeding therapists, Occupational Therapists and talked with Feeding Specialists at 2 different Children's hospital.  And paid a lot of money to have people tell me that we can't force him to do anything.  They are all stumped and out of ideas as well.  And since he desperately needs the calories from the formula, we can't take it away.  So someday I'm hoping he will give up the bottle.  If not, I'm thinking about starting to drink.  And heavily.   Don't judge:)

Jackson started a heavy dose of Steroids the first part of December to help the inflammation in his esophagus.  The side effects for him:  Roid Rage, poor sleeping habits, and chubby cheeks.  The first 2 side effects are not funny, nor pretty.  Trust me.  The chubby cheeks on the other hand are darling.  It's the first time in his entire life that he's had anything chubby on him.  As we have done a slow taper, the chubbiness is slowly fading too.  I think we will miss that double chin and cheeks when they are gone.

Christmas 2013
For Christmas Eve we decided to take the boys to the Jump Zone to get out some energy and to let them do something they love.

The boys are in heaven here and have the time of their lives.  It was a great hour.  The place wasn't crowded either.

 Jumping and balls, and foam pits are everything my boys need to stay entertained.

After jumping our hearts out we headed to Coldstone and then home to relax for a few hours.

After a yummy steak dinner we started our Christmas Eve "stuff."

 The boys each got to open a present from each other.  Carter got a wallet from Jackson and he was beyond thrilled.  I was worried that he would be disappointed that it wasn't something to play with, but he wasn't.  He immediately ran and got all his money from his treasure chest(that santa brought last year) and put it in his new wallet.  He kept yelling "Thanks Buddy.  I can't believe I have my very own wallet."

Brother Hug!  Jackson got a set of tiny cars from Carter and they both spent some time playing with them.

Next came family pictures in front of the Christmas Tree.  Poor Jackson is just realizing what a crazy family he has:)

 As I look back I realize this is the only family picture we got during the holidays.  And one of the only ones with me in it.  My boys may look back and wonder if they ever had a mom.

Carter had to then head out and sprinkle his reindeer food on the snowy lawn.  He was so excited for this.

He made sure to sprinkle it everywhere so all the reindeer could have a fair chance of getting some.  After that we watched "Home Alone" together, read the Christmas Story from the Bible and set out cookies and milk for Santa.  Then put the boys to bed.  Carter really wanted to sleep on our floor that night and we agreed.  I thought for sure that he would be up several times in the night and up super early for the morning.  But he wasn't.  This kid doesn't mess around with his sleeping.  That's why I love him so much.

Neil and I then wrapped presents and filled stockings before we went to bed.

 

To my surprise, Carter didn't wake up until almost 7 am.  And since Jax was still asleep I asked him if he wanted to watch a movie in our bed, while we waited.  He pleasantly agreed.  I couldn't believe it.  Finally at 7:30 I was much to antsy and I woke Jackson up.

We started with our stockings first.  Carter was thrilled to find some of his favorite chocolate treats in there as well as new sunglasses and a toothbrush.

Know the old saying "Never wake a sleeping baby?"  Well it proved itself true this morning.  Jackson was a bit grouchy and wanted nothing to do with his presents or stocking.  He grouchily sat himself on the couch and only wanted to play with the Iphone.

Finally we unwrapped his Santa present in hopes that that would get rid of his grumps.  It worked!  Santa brought him tiny cars!  These are actually Neil's old Micro Machines from when he was a kid.  The boys had seen some similar ones when they were at Aunt Linsey's house and fell in love with them.  After searching the internet for them and realizing they were no longer in production, Neil's mom allowed us to have Neil's old cars that she had kept safe all these years.
Both boys call them Tiny Cars and both boys LOVE LOVE LOVE them.

Carter found some chocolate gold coins in his stocking.  Last year when he couldn't have chocolate Santa brought him real $1 gold coins for his treasure chest.  This year Santa could bring the cheaper version:)  And wouldn't you know it, Carter preferred the edible ones.

Jackson's grumpies were gone at this point but he wanted nothing to do with anything but his tiny cars.  He was taking them out one by one and announcing their colors.  Grandpa was kind enough to humor him and closely examine each one.

One of Carter's Santa gifts was an old school, vintage Little People's Jeep and pop up tent trailer.  Similar to the one we have and camp with.

We finally persuaded Jackson to open another present and he was thrilled with a box of fruit snacks all for himself.

Then came the Legos!  He was very into presents at this point.

And what's better than Legos?  Legos that make a train.  He kept squealing "look at my Thomas!"  (All trains are called Thomas by him."

Carter also got a couple of sets of Legos from his Grandmas.  He was so excited.  He and Neil got right to work after present opening.  I'm not sure who was more excited for Legos, Neil or Carter.

One of the only shots I got of Neil opening his presents.  I'm such a bad picture taker.

More Legos.  He stayed and played with Legos for several hours until we went to Grandma's for Christmas Lunch.  

 Aunt Linsey gave Carter the biggest box of Mike and Ike's I've ever seen.  He was thrilled.  Who wouldn't be thrilled to get their favorite candy in super super size?

Jackson was an old pro at this point and loved opening all his presents there.

Aunt Linsey knew the way to his heart as well with Despicable Me pajamas and giant Monster Trucks.
Legos and Tiny Cars now litter my floor daily and I have tried to make peace with this.  Some days are better than others:)  But I am glad for their presence because I'm quite sure they make great booby traps for burglars, if any should attempt.  Maybe I should leave them scattered all the time.

A couple days after Christmas we went skiing.  Carter has a season pass and his own skis now.  I guess he's an official skier.

Somehow I got convinced to come along and ski.  I use to love skiing as a teenager.  Now that I'm old, I don't enjoy it as much but I do enjoy skiing with Carter and watching him learn.  Our ski day was a great way to spend New Years Eve and end our Christmas Season.

Omaha Nebraska

November was a busy month for us.  Mostly because we spent the first 2/3 of the month preparing for our big trip to Omaha, Nebraska.  Back in August I decided that it was time for a second opinion regarding Jackson.  And one of the best Intestinal Rehabilitation Programs in the United States happened to be in Omaha.  I called and got insurance transfers and logistics all arranged.  The thought was that Jackson would need to be in Omaha for 2-4 weeks.  We decided that we would all go out together and then Carter and Neil would fly back after 10 days for work and school.  

 Since I had no idea when I would be home in December, I decided to set up our Christmas tree before we left.  This is the earliest I've ever set up my tree but we got to enjoy the Christmas magic for an extended time.

 Simon our elf also made sure to visit before we left.  He usually doesn't visit until AFTER Thanksgiving but he caught wind of our plans and came a few days before we left with pjs for the boys and a new movie to watch on the road.

 Both boys were thrilled with their new gifts and the magic of "The Elf on the Shelf."

Early on the morning of Saturday, Nov. 23 we drug the boys out of their comfy beds at 5:45 am and hit the road shortly after 6 am.  

The trip from Logan to Omaha was about 16 hours and we decided to knock out 12 of those hours on the first day.  I must say that I have the best travelers I could ask for.  They watched movies, played the ipod, read books and never cried.  There were a few whines, but overall they were amazing.  Never once did anyone have to stop for a bathroom break or a diaper change.  They both kept their bathroom habits within our scheduled stops.  I could have used a restroom stop 1 hour after stopping that morning but I couldn't break my own rule or my biggest pet peeve so I had to hold it for a few more hours.  Torture!

 Because of the early morning both boys took a couple naps during the day.  Short naps, but better than nothing.

 We stopped every 4 hours or so for breakfast and lunch and to get our wiggles out.  Carter enjoyed an ice cream cone for lunch........

 While Jackson enjoyed a sausage patty to go.

We needed to get to North Platte, NE that night and about 2 hours before that was the country's first Cabellas.  We had made excellent time throughout the day so we figured why not.  We stopped for about 30 minutes and had a good time letting the boys explore the store.  We brought clothes to change the boys into during the day but never took the time.  They stayed in their jammies all day.  We did get a couple of weird looks in Cabellas but oh well:)

We made it to North Platte about 7 pm and went to dinner at the nearest restaurant and then came back to the motel and put the boys to bed.

 The boys were very excited to be staying at a motel and even more excited that it had a pool!  We all slept like logs that night and woke up to go swimming, a quick stop at wal-mart for forgotten items and then kept heading east.

I must say that this drive was one of the most boring, ugliest drives I've ever done.  We saw most of the state of Wyoming which was dull and brown and apparently uninhabited.  I thought for sure that once we hit the state of Nebraska we would see amazing things.  But sadly the western part of NE is just as ugly as  Wyoming.  There was nothing to see.

  The best part of the drive was seeing this gem 3/4 of the way through Nebraska.  2 deer "sleeping" in the back of this trailer.

We made it to Omaha in the late afternoon and went right to the Ronald McDonald house where we were staying.  I was very nervous about staying somewhere like this but it exceeded all of my expectations.  It had wonderful accomodations and they truly go out of their way to make you comfortable and at home.  We were humbled by all the meals we were fed and all the wonderful people we met and encountered.

Monday, Novemeber 25 was our first day of tests.  We started bright and early with an appt at 7 am.  6 am Utah time!  The hospital we were being seen at was University of Nebraska Medical Center.  They specialize in many things but important to us are their expertise in Intestinal Rehabilitation and Intestinal Transplants.  This huge hospital was kind of in the middle of the slummy part of Omaha and we were advised to not wander the neighborhoods alone or after dark.  On campus was nice and safe, but not the surrounding areas.

Jackson had quite a slew of tests and procedures done during the week.  Here is his abdominal ultrasound which he handled like a champ.  He laid there like he was on the beach with his arms behind his head, and leg crossed:)  We held the ipad for him and he was an angel!  He was usually only at the hospital for a few hours a day.  They spread out all his testing which allowed us some great time to relax and explore the city.

 The Ronald McDonald house was only a couple blocks away from the hospital so we got our exercise each day by walking to and from.  The only downside is that Omaha had some cold wind that week.  We knew the temperatures would be similar to Utah, but weren't expecting the wind.  The wind and extreme cold only lasted the first part of the week.  The latter part got into the high 40's, low 50s which felt great!

Ronald McDonald House in the background of this picture.  Starting the walk to the hospital one day.  Neil made up fun games for the boys to keep them entertained on the walks.  It made the walks longer, but with less whining!

Our first adventure was to visit the Children's Museum of Omaha.  We had been told great stories about this place and it did not disappoint.  The boys were in heaven and it was only about 10 minutes from the hospital.
                                                
"You mean I can play in the water as much as I want and make a mess Mom?!"  The boys would have been content to stay in the first area we came to at the museum, but we drug them to the next area, which they of course loved.

 Every boys dream.  To be a car mechanic.  Changing tires and oil with daddy.

Screwing the nuts on to the tires.

Driving the bus

 Unloading packages from the UPS truck.

 A cute paramedic taking care of a half-naked man.  We actually visited this museum twice in the 10 days we were there.

Another must visit was the Omaha Zoo.  And once again, it was amazing.  I was worried about going in the cold weather but a lot of the exhibits are heated or indoors.  We went here twice as well.

 Family picture on the gorillas.  I considered using this picture as our family Christmas Card but then remembered that I don't actually send Christmas Cards:)

They had so many exotic animals here that you don't always see at many zoos.  I think I appreciated it all more than the boys but they had a great time too.  The highlight of their zoo visit was seeing a monkey pooping right next to the window.  Jackson couldn't stop talking about it for weeks.  At least we made memories eh?!

 Wednesday was the biggest day of testing for little Jax.  He was so brave and calm the entire time we was in the hospital.  Luckily all his tests were outpatient and he could come home afterwards.  Wednesday he had a colonoscopy and a scope.

He wanted Carter, his best buddy to sit on the bed with him and watch a movie while we waited for the surgeon.  This surgery brought some good news and the only bad news of the trip.  Jackson was diagnosed with something called Eosinophilic Esophagitis after the upper scope.  We are still trying to figure this out.  It was a big bummer really as this condition really butts heads with his other condition.  

After the surgery we were again reminded of how mean Jackson is coming out of anesthesia.  There are silly, fun drunks, and then there are mean drunks.  Jackson is definitely in the latter category.  I could not calm him down the entire time he was in Post-Op.  The nurses finally let us go, probably just because he was screaming so loudly and they were sick of it.  We took him home where he proceeded to scream for the next 2 hours.  After a nap he was back to his normal self.

 Tired Jackson snuggling with Daddy after his long day at the hospital.

 Carter discovered a great tool to use during all our walks to and from the hospital.  He used the strings on Jackson's hat as a lease to keep his brother in control.

Thanks to seeing "Despicable Me 2" the week before our trip, the week was full of "Lipstick Tasers" to last a lifetime.  The picture above is of Jackson being walked by his brother and giving me a lipstick taser!

 One Saturday morning we decided to be crazy and go out to breakfast.  We came across and IHOP and stopped for a not that good breakfast.  But it was fun anyways.  The boys loved it.

Carter was obsessed the whole trip with being in charge of one of the keys to our RMH.  He wore that key around his neck at all times and took great care of it.  He loved scanning his key card to get him in places.

One of our last adventures were the slides in downtown Omaha.  We were only sorry we didn't discover them sooner.  Right in the middle of downtown, in between buildings was a random place with 2 huge metal slides.  Our boys loved these.  I think we were there for almost 2 hours one day.

 Jackson started at first by riding with either Neil or I.

He would giggle the entire way down.
He then was brave enough for us to just lay him down at the top and he would slide down by himself and have someone catch him at the bottom.  The slide when too fast for him to feel comfortable enough to sit up so he laid down and looked so funny gliding over the humps in the slide.

 Carter started out by himself and enjoyed the ride as well.  Then he noticed the more experienced riders were using cut up cardboard boxes and sliding down to add even more speed.

He got himself a box and started using that.  Someone would have to catch him at the bottom because of all the speed he caught.  It was such a fun, fun night.  We had to drag the boys away at dark, with hands that were showing signs of frostbite.  I think this was one of our best memories of Omaha.  That being said, if you ever find yourself in Omaha, the downtown slides are a must!

 This picture kind of sums up our nights.  Between hospital tests and visits we would come back at night exhausted.  Especially the boys who acclimated to Central Time immediately.  Jackson was amazing the entire trip and so was Carter.  It's not easy having a brother with a chronic condition.  Carter has been drug back and forth to so many appointments, surgeries, hospitals, etc in his short life and is so easy going about it.  He is just the brother Jackson needs by his side.

Overall, we ended up with great news from the Team at UNMC.  They think he can be line free in the very near future.  We were so glad we were able to make the trip out there and to meet with these professionals and receive their help.  Everything went so well that we were only out there for 10 days and we were able to stay together the entire time.  We just canceled Carter and Neil's flights and they drove home with us.

It was a bit hard sharing a small room for the 4 of us the entire time but it was nice having all day, every day to share together.  The drive home was not as fun as the drive there.  Weather was horrible and slowed us down a bit.  But we made it home and were so so glad to see our house and our comfy beds.