The Life of Carter

Carter had a busy month of August and September.  He experienced a lot of new things and a lot of scary things.  Carter is what we like to call "full of drama" and while it is trying sometimes, it also keeps us laughing.  

He is learning how to play with Jackson these days and they love to play chase.  He is still having a hard time wanting Jackson to touch his toys but it's coming.

This day he was being super sweet and wanting to snuggle with Jackson while he ate his bottle.  He's can be very sensitive and if he hurts Jackson's feelings or makes him cry he will give a big hug to him and try to stop the tears.

Carter had his first cavity and therefore, his first filling.  I felt like such a failure as a mother because teeth brushing is something I am a nazi about.  But what can you do?  I thought they would put the laughing gas on him but they said he didn't need it for this tiny little cavity.  I was very nervous because just the week prior Carter had to have blood drawn for allergy tests.  It did not go well.  It was terrifying for him and it took Neil and a nurse to hold him down.

Carter and Dr. Ferguson.  He was SO BRAVE.  He didn't cry and was very compliant to the dentist and his helper.  The only noise he made was to say "This is hurting just a little bit."  So they adjusted the gauze in his mouth and he was fine!  He got to pick out a "treat" from their drawer and he chose a paper fan?!?!?  I was very surprised his chose a fan over cars, stickers etc but he was pleased as punch to have a fan.  For the next several days no matter where we were, or what we were doing, he'd ask "Is it hot in here?"  And no matter your response he would bust out his fan and fan himself!  He loved the fan until the "Beast" destroyed it one day.  The Beast is a name Carter came up with for Jackson.  

The next Big event Carter had in August was a day I had been dreaming about.  Kids with allergies have an 80% chance of outgrowing their allergies.  We all know that "luck" isn't exactly on our side but I figured these statistics were pretty good.  Carter's blood test showed that his allergy levels had come down enough that it was time for him to take an oral challenge and try eating eggs.  They were right on the border but we decided to go ahead and give it a shot.  We really tried to talk this up to Carter and explain what would happen and how exciting and safe this whole procedure would be.

 Here he is on the morning of the big day.  He chose his own outfit, all his favorite pieces put together.  His Aggie Jersey, His ESPN shorts(he came up with that name on his own) and his new green shoes from Aunt Linsey.  I was calling them his lucky clothes in hopes....

The game plan was to have him start with 1 gram of scrambled eggs(which is the size of your thumbnail) and if he tolerated that we would double the amount each time.  For 5 times.
He was calm and happy............until the Nurse walked in with the tiny piece of egg on a plate.

 He immediately got scared and actually knocked the egg out of the nurses hand.  He got teary eyed and kept saying "I don't want to eat eggs.  I'm scared.  Let's just go home to Logan."  My heart was breaking as I watched him and I can't really blame him.  For 4 years we have told him over and over that he can't eat eggs and that eggs can make him really sick and that if he eats eggs he may have to get a shot.  And he still remembers the last 2 BRUTAL shots we had to give him after he ate cheese and cashews.

It took 30 minutes of consoling, bribing and more bribing before he finally ate that tiny piece of egg.  Come to find out, the ambulance with a moving ladder from Shopko was what finally changed his mind.

Once he decided to eat the egg he didn't hesitate at all.  He picked it with his hands and ate it up. After he ate the first piece he smiled and said "Mmmh.....that's pretty good."
We had to wait 20 minutes before the next bite and had to watch for hives and trouble breathing.
He passed the first test with flying colors!

The second bite was a piece of cake.  He ate it with no problems and went back to playing the Ipad.                                                
                                               
                                                 
The third bite was eaten like he had been eating cold scrambled eggs his whole life!  We were already planning all the things we could try that had eggs in them.

We were all so excited that we decided a family shot was in order.
After the 4th bite of eggs we noticed a TEENY TINY hive on Carter's neck.  The nurse called the Dr.  in and she said we would watch him for another few minutes and see what the hive did.  The hive cleared up within a minute and so she decided to carry on.  (Is the suspense killing you??!!)

 The 5th and final dose he had a good sized plate of eggs to eat.  So much in fact that they brought the eggs to him on a plate and brought a fork.  He loved them and chomped them all down.  (He's topless because they wanted to watch his back and chest to make sure no hives appeared there.)  He had to use the restroom so I took him.  As he was washing his hands he started sneezing.  I thought nothing of it-when Carter sneezes he usually sneezes 4 or 5 times in a row.  When he hit 10 sneezes in a row I started to worry.  Then his nose started runny and he became very congested.  So congested that he had trouble speaking.  We alerted the nurse who confirmed this to be an allergic reaction.  He was quickly given a dose of Benadryl to try and stop the symptoms.  But it just kept going......then he got a massive hive in the corner of his eye and on the side of his nose.  And they were big(I didn't take any pictures of them because I didn't want to worry him.  He had no idea what was happening and that the test wasn't going well.  He just thought he had a runny nose and was getting annoyed that it wouldn't stop dripping.)  Once the swelling on his face started the dr. ordered a shot of EPI just in case his breathing was threatened next.  I wanted to cry.  I thought for sure Carter would freak out at the thought of an EPI shot.  Luckily the nurse hid the needle and we told him that he just had to get a scratch on his arm(usually they give it in the thigh) and I turned his head away and she gave him the shot.  He barely cried and didn't even know he'd had a shot.  So...he didn't pass.  He is still allergic to eggs.  Our Dr. told us that she has never seen someone make it this far into the challenge before failing.  Usually if someone fails an oral challenge they fail after the first bite, not the 5th round.

He was fine after all the medicine but it sure did make him sleepy.  He came home and took an unforced 3 hour nap.  I was pretty sad about the whole thing but we are use to not using eggs in our house so nothing really changes.  We will do a blood or a skin test again in 6 months and depending on what those show, we can maybe try an oral challenge again.  Bad news is he still can't eat eggs but the good news is that it's definetly getting better and looks like, someday, he will be able to tolerate them.

The first week in September Carter started his first day of Preschool.  He was so excited.  So excited that he got himself dressed without me asking and even brushed his teeth without whining.  That is unheard of in our house!

 He had a paper sack full of 5 things about himself.  He was thrilled to be able to take some toys and things to show to his classmate.

Very excited to be wearing a backpack.  Some mornings he puts his backpack on an hour before he needs to leave.  Preschool is just what he needs as he is getting bored by being at home with his old mom.  He does however hate to write his name and I'm hoping his teacher can fix that.  Heavens knows I've tried......

Here he is on the first day walking out.  I have been dreading the first day of school for years now because of his allergies.  I worry about him eating something he can't have.  I worry about him feeling left out.  I worry about him feeling "different."  His teacher has been so great to him and so easy to work with.  She has bought a lot of treats that are safe for him and I have also sent a big bag of treats if he can't have what the others are having.  We've dealt with this his whole life but sometimes I feel so sorry for him.  (It rarely bothers him, it bothers me more.)  I hate that he can't eat what the other kids get.  The other day they were talking about Apples in class and the teacher served them Apple Crisp.  He couldn't have any and while he was happy with his Oreos instead, I could still tell that he felt a little sad.  His best friend, and neighbor is in his same class and he is in charge of treats this week.  His mom called me and asked what she could buy that was safe for Carter.  Her son was very insistent that he wanted his treats safe for Carter.  I may or may not have cried a little bit at that.......you'll never know.  It's really NOT hard to find things Carter can eat and it sure makes his mom feel good knowing people care about him and want to include him.

 He kills us with his imagination lately.  The other day he called us out to look at the campfire he had built  He used different things to construct a pit and then brought some wood over.  We roasted marshmallows over our fireless pit!

 Carter has been looking forward to the last demolition derby of the season since the first one!  This one hosted Trucks and Suburbans instead of just cars.  He has no problem sitting and watching the derby for the 3 hours it takes.  It's become a family tradition and we all love it now.

 He fell and scraped his nose last week and this picture also shows the big scabs on his nose.

He was very attentive and would clap and squeal at all the right times!

                                                 
This was Jax's first derby and he was quite enthralled as well.  He sat through 3 hours of the derby much better than he sits through 3 hours of church!

This Saturday is the monster truck rally and Carter can't miss that so we will be attending that as well.  We are headed to Disneyland Sunday but I think Carter would prefer the demolition derby.  If I had known that I could have saved a bunch of money on Tickets!

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.