The life of Jax

This boy really keeps me on my toes.  I tell him multiple times a day that it's a good thing he's cute......

 Jackson's first ever lollipop.  First ever real sugar too.  Immediate success.

And of course you can't give one boy a sucker without giving both boys a sucker.  Or two, or three.....

 This is what happens when you take said sucker away from Jax.  It was the saddest, saddest cry I have ever seen/heard.  Unfortunately when you only have 10% of your small intestine sugar is BRUTAL on your body.  Suckers are a rare, rare treat.  Sometimes I wonder if it's even worth giving him one occasionally because he always ends up in tears.  Life really isn't fair.  A dum dum only has 20 calories and his poor body can't really even tolerate 20 calories worth of sugar.  My heart breaks a little each time he has a melt down over the millions of food he CAN'T eat.  Getting away from the negative...

At 14 months old (July)Jax finally learned how to crawl on all 4.    We were convinced that he would never crawl and would just go straight to walking.  He was super motivated to walk and then he finally decided to crawl. And he has been on the go for the last 2 months.  14 months is behind the average baby but is quite normal for a baby who spent a million days in the hospital.  Plus once you subtract his 4 weeks of prematurity and his 4.75 months in the hospital from his actual age that put him at about an 10 month age when he started crawling.  So quite normal.  And I actually don't even worry about it because Carter was "normal" and healthy and he didn't crawl on all 4's til he was 13 months and didn't walk til he was 18 months.  I guess we just breed slow movers.

 I was actually a bit ok with him not crawling.  Ever since he started crawling my house hasn't looked the same......some of his favorite things are to pull all the medical supplies from his closet.

                                      
Destroy my living room in less than 3 minutes and his all time favorite...........

                                         

Carter's room!  He pulls all the books off the shelf and cars out of the closet.  Carter really doesn't appreciate this (not that he cares about a clean room...) but I kind of like it.  Jax will play by himself in Carter's room for almost an hour sometimes.  And that let's me get some other things done.  

He also loves the stairs.  He figured out quickly how to get to the top of the stairs but hasn't figured out going down them yet.  He has no desire to learn to turn around.  Which has resulted in one tumble down the stairs. I wish I could say this cured his curiosity but it didn't.

 He loves to be at the gate by the stairs and gets mad when Carter goes downstairs without him.  He will stand at the gate and shake it til someone takes him down.

 Unless you don't take him downstairs and then he finally gives up and just lays down!

Playing under the table is also a fun game.  He will even clean up the food he dropped.  Way better than having a dog!

Jackson has a developmental therapist come to observe and help him once a month.  Once again this comes from all the time in the hospital.  They want to make sure he doesn't get behind or stay behind in everything.  It's just like a big play time for him and so he loves it.  One thing his therapist wanted him to start doing was pointing at things and pointing at body parts.  The picture above shows him mastering the skill of pointing to his nose!  He's a quick learner.

This boy is obsessed with books.  His language is a tiny bit delayed so I use books as a motivator/incentive.  He learned to sign AND say book after I withheld it only one time from him.  His language has improved about 100% over the last month.  He is really learning that speaking and signing can get him things.  He will do anything for Kix cereal including signing and saying MORE at the same time.  Right now he says the words: dada, momma, more, all done, book, out, and up.  Plus a few more when he wants to.  He also learned animal sounds which was really pushed by his therapist.  He can name the sounds for a cow, duck, dog and pig.  The best part is a book he has that tells all the animal sounds and when you get to the part about the pigs it says "3 singing pigs say La La La."  So when asked what a pig says he replies "la la la."  And I don't correct him.  It's too darling.

 Remember how I said it was a good thing Jackson was cute...........

Along with learning to crawl came learning to pull himself to his feet.  I went through this phase with Carter and it is my least favorite trick that they learn.  Instead of napping and sleeping at night he would pull himself up and then either play or cry.  He knew how to sit himself down but he wouldn't.  He would go all day some days without a nap even after I'd go in and lay him down 50 times.

And when you'd walk in the room his little face would light up and he'd stretch his hands out and say "Out."  At this point whenever he'd say a word we would honor it to give him the motivation to keep using words.  So this night I let him out to keep playing.  Luckily this phase only lasted a few weeks but they were a LONG, Hard few weeks!

Crawling brought some fun times at the little pool at Liberty park in SLC.

Now that's he started crawling and getting everywhere he needs he has lost a bit of the desire to walk.  He can walk across the room if he wants but he prefers to crawl.  Much like his older brother.  We are doing the same thing with Jax as we did with Carter.  We take him to the grocery store and let him push the little carts all around the store.  He'll walk when he's ready and not a minute before.  I've had good practice with being patience.
   

All in all Jax is doing really well.  People always ask me how he's doing and I say good.  And then people take that as he is "Cured."  He's not.  He never will be.  He IS doing well for having a chronic condition but he does in fact have a chronic condition.  It is never going away and we deal with the side effects daily.  We are very grateful for how well he is doing and how happy he is.  He is truly a blessing in our home and one sassy little redhead.

What do you do in the Summertime......

I am going to have to do the world's longest post to catch up.  I do not have the energy to break them down in to the separate posts they deserve.  These pictures show what a fun and busy July we have had.  

We started out with 2 weeks in Burley with my parents and sister and her kids.

 Mitchell and Carter both started riding "big boy" bikes at the end of last summer and this summer they got to enjoy them together.  They were good at sharing the bike that was too small for both of them but lived for the moment they got the big bike.

Carter tried his hand, or foot(?) at Mitchell's scooter and realized he did not like the vibrations of the gravel road.  Once was enough for him.

We spent an afternoon at the park.  For such a small town, this park is really impressive.  It gives any park in  Logan a run for it's money.

This is Grandma with about 2/3 of her grandkids.  She put up with all of us for 2 weeks and was so great to cook and clean for all of us.

We spent an afternoon at Harris Pond where there was swimming and canoe rides.  Carter kept asking me if there were sharks in this river.  I guess letting him watch "Shark Week" with me on the Discovery Channel was not a smart move.

Jax was spoiled rotten these 2 weeks.  He desperately wants to walk, but is afraid of walking without holding someone's hands.  I know he could walk if he really wanted to but chooses not too.  Everyone was so great in taking their turn at keeping him happy.  My back had just about had it!

 Great Grandma D is the best grandma a kid could ask for.  I know this from first hand experience.  Even at 92 years young she is involved with each child and loves to entertain and play with them.  Jax was smitten with her and had her wrapped around his little finger.

The 3 little boys, all 4 years old, played pretty well together.  The only problem is that we only had 2 Ipads.  But they learned to share them.

Grandma D taking her turn at walking Jax.

 Mitchell was very interested in Jackson.  As the only boy in his family he was drawn to the thought of having a brother.  I joked that I would willing send Jax home with him.  He started to believe me and then I had to break it to him that we would probably keep Jax.  He then came up with a sweet plan to babysit Jax if we wanted to go on vacation.  Be careful what you offer.......I may take you up on it Mitch!

                                                  

There was even a hot dog roast in 95 degree weather.  2 things I really dislike....hot dogs and hot weather.

We hit a parade and while I am not a big parade fan, I realized that we may have to frequent them more often for the boys.  They were so well behaved and loved watching things go by.

The 3 of us enjoying the parade.  Carter and I stayed cool in the shade while Jax soaked up the sun.  This is actually Dr.'s orders.  Jax is a little low on his Vit D and so in addition to an oral supplement he is required to get 20-30 min a day of sun.  No sunscreen for those 30 min.  Hopefully this helps.  No sunburns yet!

There was lots of time spent outdoors in the pool, on the trampoline, the slip n slides, etc.

Jax enjoyed visiting the neighbors horses but would get a little freaked out when they got too close.

The 2 little boys played so well together.  Unless they were fighting.  There was only 1 bloody nose in 2 weeks so we consider this a success.

Coming home meant we had to find ways to entertain ourselves.  Carter takes his job of watering the garden and flowerbeds very seriously.  He lets nothing get in the way of it, including his clothes.  I guess his Vit D levels will always be healthy.  

After getting use to sleeping in a room with multiple cousins, Carter's private room at home has become torture.  He cries every night for someone to "just lay by him."  Breaks my heart.  And he now needs the door to be wide open with the hall light on.  He would even be happy with Jackson sharing a bed with him.  Hopefully this phase goes quickly.

We hit up the local splash pad and poor Carter(in blue Hawaiian swimsuit) couldn't keep his trunks up.  He was sporting a nice plumber's crack most of the day.

Carter and Neil established a fun little game they call "Soda" time.  We rarely have pop at our house but when we did they would set aside plenty of time to sit on the front porch and drink cold Root Beer.  Cheers!

We have spent a lot of time biking this summer and if it weren't for the awful heat I would be tempted to do it all day, every day.  The boys both love it and are so happy during our rides.  Except for when I put them in the trailer together.  The whole 45 minute ride I heard "Mom, Jax is touching me....."

Carter loves to ride his bike and call his new, bigger bike his Mountain Bike.

Towards the end of July we went to Park City with Neil's family.  We started off the weekend by spending an entire day at the Alpine Slide and Coaster.  Someone please tell me why a day pass there is as much as Disneyland????

Aunt Linsey made us all Matching "E" shirts.  I thought we all looked stunning in the them!  Me and Jax in line at the ticket booth.

He was very happy to be there!

Neil, Carter and Aunt Linsey in line for the Alpine Slide.

                                     
Carter loved this ride and squealed each and every time down.  Often yelling "let's go faster!"

Poor Jax wasn't old enough to go on any rides but he was the BEST baby in the world that day.  He patiently laid in his stroller or was content to crawl around the picnic area.  We did learn that Jax will only nap about 20 minutes in his stroller.  But we also learned that he can go all day with out a nap and be quite pleasant.

The next day we hit up the Olympic Park to get our Olympic Fever started.

Jax and Grandma

Our last adventure was the Bike Park.  Carter got a new Camelback for his birthday and he was sure excited to wear it during his "mountain Bike ride."  He had to stop every 30 seconds for a swig of cold water!

Riding the bumpies!  I can't believe he can ride a pedal bike already.  I was probably 8 before I could ride one myself!

After the bike park we went to the skate park when Me and Aunt Linsey took turns playing on the jumps with Carter.

The down ramps were perfect slides.

The last weekend in July brought our first(and hopefully not last) camping trip of the year.

Jax loved crawling in the dirt and playing with rocks.  He would take an occasional lick of the rocks to see how each one tasted.

Here he is one night during dinner.  I had his tray loaded with food and the next time I looked down he had scooped up tons of dirt and rocks onto his tray.  Whatever keeps em happy!

Carter loved helping Neil make fires and would gather all kinds and sizes of sticks he thought would make the best flame.

We spent one day at Tony Grove Lake and it was so much fun.

Jax's first time in the backpack and my last time carrying him.  I must have really weak back muscles because I only lasted about 20 minutes.

My little Canoe-Boy.  This was his second experience in a canoe and he was a lot less jumpy than the first time.  He got a little more accustomed to how tippy canoes can feel.
 

Going on a quick ride with Neil and Dave.

Poor Jax loves the water and wants nothing more than to swim around in it.  We've taken him swimming in public, chlorinated pools before.  It's a pain to try and waterproof his central line but we do it occasionally.  Sadly for him, swimming in dirty, yucky lakes is not an option.  Who knows what germs and gross things live there.  Luckily we could satisfy his need for water with a few walks in the shallow area.  What I wouldn't give for my baby to have no central line and be able to be "normal."  :(

2 rounds of swimming lessons has really helped Carter and he practiced a lot of his swimming moves out in the middle with Neil.


The best part of the trip for Carter was the fact that we borrowed a friend's tent trailer.  He would have been happy to spend the 2 days completely in the trailer.  The first evening he kept telling us he was "very tired and just needed to go lay down for a bit."  So he'd hop in the trailer for about 5 minutes and then pop right back out.

Amazingly both boys slept wonderfully both nights.  This means we can attempt another camping trip with them.

The last night camping we were joined for a bit by Neil's brothers family.  The 3 oldest kids had a great time roasting marshmallows over the first.  Carter's goal was to eat as many marshmallows as humanly possible while Kayla and Tyler's goal was to see how many marshmallows could catch on fire!

We had a great July and hope for an even better August.  Who wants to go camping with us?!