February

Highlights of February:

Valentine's Day started with pink, heart shaped pancakes and pink milk. The pink milk caused a little freak out by Carter but once he figured it was the same stuff he asked for a refill.

Dinner consisted of stuffed RED peppers, Red Sugar-free Kool-aid, and red cornbread muffins.

Don't worry, Neil was close by for Jax. He's never left alone like that. Especially since he can now throw himself out of the bumbo when he chooses to. He's now been graduated to a real high chair.

Side note: Carter is very observant. Since we have to measure and make sure Jax gets X amount of calories per day, we talk about calories and ounces every day. Seeing the big pitcher of Kool-Aid on the counter Carter asked "How many calories are in that?" "How many calories are we going to drink tonight?" He also knows how many kilograms Jax weighs and frequently tells people that "my brother weighs 8.4 kilograms."

Having a child in the hospital frequently has really helped me to brush up on my metric system. We don't use pounds and ounces here, we do kilograms and grams. We don't use inches, we use centimeters. We don't use ounces very often, we use Cc's and mL. The metric system is really, kind of easier. I'm still no pro but definitely getting better. I can even do the conversions in my head.....not exactly but a close estimate.

But in case you're wondering, this boy is weighing in at about 18 1/2 pounds.

His doctors are very, very happy with his weight gain these days. So happy that they've decreased his TPN to 9 hours a night, only 6 days a week. And instead of going to 5 days a week this week, they are cranking down his Lipids calories to try and give his poor liver a rest. He's making great progress and we are all hoping it continues. The optimistic hope is to have him TPN/lipid free by summer time.

My happy boy. Not even knowing or caring that his plaid shirt is so "in" right now.

Big brother can hardly stand not getting the attention so he agreed to pose for a quick picture. Rare.

Now onto comparisons using this plaid shirt. Here is Jackson in the shirt at 9 months old, weighing 18 1/2 pounds.

Here is carter in the same shirt at 6 months old breaking the scale at 23 pounds. Barely squeezing into this shirt if I remember correctly. At 9 months, Carter was 25 1/2 pounds. I don't think they look much alike in these pictures.

Mornings at our house are pretty slow. The boys always have to watch their favorite show Mickey Mouse Clubhouse. Jackson is really loving life since learning to sit up on his own.

Mickey Mouse is their drug of choice. Not even noticing I was snapping away.

Jackson has learned to clap in the last few weeks and it is one of my favorite things about him. He knows he's cute when he does it and loves when people cheer for him.
I found Carter's old baseball hat and had to take another picture for a comparison. Jackson has a "larger than average head" but this hat is still too big for his head.
Here is Carter wearing the same hat at 7 months old.

We spent last Saturday enjoying the pool at the gym and letting Carter practice his new swimming skills. It's amazing what 2 sets of lessons can do for a kid. He's now comfortable in the water to not be in Neil's arm the entire time.

Jax and I enjoyed watching from the sidelines. Can't wait til Jax gets his PICC line out so he can join us in the pool.

Sunday brought sunny weather and so we enjoyed playing outside together.
Carter has a mean swing with a wiffle bat.
Jax sat on the blanket and was thrilled when Kevin decided to join him.

Then we all played in the sandbox. Jackson really enjoyed standing up like a big boy and digging in the sand. He almost gave Carter a heart attack by "messing up" his sand castle.

He loved the feel of the sand on his hands. I am obsessed with these fat baby hands. I squeeze them all day long.
Here is a game Carter made up called "Finish Line." He made the name up himself and it makes no sense. You grab these styrafoam blocks and hit them until they break. A true boy game.
This boy loves his daddy and they spend lots of time playing boy games. I use to be Carter's favorite but for now I will have to be satisfied with being Jax's favorite. He thinks I am great and I feel the same way about him!

American Idol Tryouts

Want to see something funny? Watch this......but don't judge. He has no idea what he's singing. He just knows it's my favorite song....and now his. How can you not like this song? It's got a great beat.

Brothers

"Sometimes being a brother is even better than being a superhero." Marc Brown

My 2 boys. My first baby and my second baby. This might be my favorite picture of them together. Carter was so excited to get a digger shirt from Grandma. So happy that he forgot he hates pictures and posed for several.
Kisses. Jackson gets his fair share of kisses from his older brother. I have to set a limit sometimes and have banned kisses on Jackson's eyes. They love each other. They adore each other. And they feed off each other. If Carter is laughing, Jackson will laugh. If Jackson is laughing Carter will laugh. Jackson will track Carter around the room and he saves his best smiles and "talking" for his brother.

They even have their squabbles already. Here Carter is complaining to me because Jackson is smacking his face. Or trying to.

Carter is a great brother to Jackson and takes his role as older brother very seriously. We have had many discussions about Carter's little toys and how we have to keep them away from Brother because brother could choke on them. I told him once that if the object was smaller than his elbow than Jackson could choke on it. He has certain toys that are not allowed out of his room because they are a choking hazard and he has done great at remembering that. He will sometimes even pick up a toy and measure it again his elbow and ask "Is this small than my elbow mom?" And no, that's not a typo.

If Jax is crying or fussing Carter will come to him and get in his face and tell him "it's ok brother, I'm here. Shh. Mom is getting your bottle." Or "It's ok Buddy, I'm here."

He was Jackson's formula advocate. When we were trying to get him to drink the nasty formula Carter would tell me each and every time "Mom, Jax doesn't like that formula." And even now, each time I prepare a bottle he makes sure I have prepared the good stuff vs. the bad stuff.

I came over to Jackson one morning and found him with this brown stuff smeared all over his head. My first reaction was "How in the world did he get poop all over his head?" He's known for his blow-outs but this was a new low. Come to find out it was just chocolate(thank heavens). Carter had just finished eating his chocolate chip pancakes and decided Jackson needed some kisses.........

And some how chocolate ended up all over Jackson's head and shoulder.

Both boys love to read. And read to themselves. Jackson loves to read while I get him dressed and ready each morning. And during diaper changes.

Both of my boys are addicted to technology. We already know of their love for TV but now it has spread. They both love the ipad and grandma's Iphone.

I love this picture and watching Jax with this phone. It was as if he'd been using an iphone for years. He used perfect form with his little thumbs and was moving stuff around on the screen.

Words with Friends anyone??

And now for the bad news...............Brothers share toys, brothers share ipads and unfortunately in our house: Brothers share allergies.

We knew Jackson had an increased risk of having allergies since Carter had them but I hoped his food issues would stop with his condition. So such luck.

Allergist's Office. Carter getting nervous for his skin test. We brought the ipad and oreos for Carter to use during his test but he just wanted to snuggle with daddy.

My 2 topless boys. Ready for their back scratches.
Jackson went first. And bless his heart he did not cry at all! This must have been a piece of cake compared to all his other trauma. They had done a blood test weeks before and the results of that guided the panel they tested him to.
I had an important job this day. Holding my 8 month old so his back didn't touch anything, he didn't lay down or scratch his back.

Carter's back. Bless his little heart as well because he didn't cry at all. He was so brave and tough. He knew exactly what was going to happen and that it would hurt a little bit but he was so great.

If you can see all the red, raised hives on their backs you can see that our news was not great.

Jackson is severely allergic to milk and eggs. And honestly I had made peace with that. We have been dealing with that for the last 2 years and I've become a pro at cooking without them. The bad news came in the form of wheat and oats. Jackson slightly reacted to these 2 things as well. They were borderline but for now we are avoiding those in his diet as well. The allergist is hoping that they aren't true allergies and that his body was just overwhelmed with the other allergies so it was attacking random things. Jackson has actually had several things with wheat and oats in them in his short life and has never reacted. We will have him tested again in 3 months to see if the wheat and oat are gone. Cross your fingers. This boy already has such a limited menu that I pray he won't have more.

Carter had some weird results as well. He tested negative to peanuts his very first test and has many peanut butter sandwiches in his life. This test showed that now he is very mildly allergic to peanuts. What?!?! It was so borderline that the Dr. said if he's been eating peanuts for so long without problems than it was probably safe to continue on peanuts.

In July he had an anaphylactic reaction to cashews. Tree nuts have the same proteins so most likely if you are allergic to one kind, you will be allergic to them all. Peanuts are not a tree nut. They are a legume. Who knew? We finally did a tree nut panel and it revealed that he is highly allergic to cashews and almonds. And coconuts. I never thought about coconuts being a tree nut but they are. Another funny thing is that carter use to drink almond milk a lot. Whenever almond milk was on sale I'd buy that instead of soy milk. But apparently you can develop allergies the more your body is exposed to them. The bad thing about coconuts is that we use to give him coconut ice cream. It's delicious. In fact, he had some 2 days before we went. So that is another iffy one. But for now we will avoid it as well.

With all this bad news we did get some semi-good news. Carter's egg allergy is almost gone! He goes back in 6 months and we are hoping at that time he will be ready for an oral challenge. An oral challenge where he will eat something with egg in it, under close supervision of the dr. and see how he reacts. Or doesn't react. And his milk allergy is slowly fading as well. Not ready for an oral challenge on it but it is decreasing.

80% of children out grown milk and egg allergies. Only 10% outgrow tree nut allergies. I told the allergist that we don't seem to be lucky people. She told us the Chinese thought that "You're only lucky if you think you are." So we are adopting that motto and moving forward. I thought that visit might reduce me to tears and a small pity party but it really didn't. Not a pity party for me, but for my babies. I guess when you've been dealt the card of short gut then allergies seem like a piece of cake. I'm very anxious to see the results of their next tests.

But for now we are checking food labels, rechecking food labels, and trying to explain to a 3 yr old why he can't have the coconut ice cream grandma bought for him, that he just had last week. Wish us luck!

The Bald and the Beautiful

We started January out with a bang. New Years Day was spent at none other than Primary Children's Hospital. Our home away from home! Jackson's picc line got a crack in it and that means nothing can be infused. The radiologists were nice enough to squeeze us in on a holiday/Sunday. We knew we would meet our deductible quickly, but never imagined this quickly!

He has to be heavily sedated for the procedure and he use to wake up very mad and feisty. But now he wakes up pretty mellow and in la la land. He was so content to play with his blood pressure cuff and other hospital toys. We were only there for about 5 hours. It's so much nicer to be an outpatient at PCMC rather than an inpatient.

The radiologists(ones who place the picc lines) know us by name, as we see them so often. The one guy was joking that they should have a punch card where you buy 10 piccs get a free trip to disneyland. If only....Jackson has been through about 7 or 8 piccs but luckily we have not been admitted to the hospital since Halloween. That is a record for us. It feels so good to say that his days out of the hospital are greater than his days in!

This is what 2011 looked like in regards to medical bills and/or insurance statements. I naively got this little file folder thinking we could keep everything filed nicely inside.
We know 2012's stack of forms will be even bigger but we are so grateful to have such wonderful insurance. Once we meet our out of pocket maximum everything is covered 100%. And while the out of pocket max can seem steep, we know it could be much higher. We estimate Jax's bills to be about $700,000 by now. Lots of people say they would never trade their kids for a million bucks. And I really wouldn't....I'd be losing money!!

January brought a change of diet for Jax. For the past 8 (almost 9 months) I have been pumping 5-8 times a day to give Jackson "the best of the best." For awhile he wasn't tolerating any formulas or additives they tried to mix with the breastmilk. I feared I would be stuck pumping for the rest of my life. Luckily we decided to try the formula above. This was our last option(or so we thought). Neocate has NO allergens in it (milk, soy etc...), is hypoallergenic and has all the proteins already broken down. Your body doesn't have to break anything down, it's done for you. We started the Neocate by mixing it with breastmilk with the plan to increase formula and decrease breastmilk. This formula has the worst taste/smell in the world. All formula smells bad but this was far beyond that. Jackson hated the stuff. You've heard the line "A baby will never let themselves starve to death....." I'm here to tell you that is a lie. If they are forced to drink Neocate, they would rather starve than drink it.

I battled Jackson with this formula for 2 weeks. It consisted on him drinking about half the ounces he is suppose to. I would give him an 8 ounce bottle and it would take him about 3 hours to drink 5 of the ounces. By that time it was almost time for another bottle. The dietitian suggested mixing a tiny pinch of sugarless Kool-aid into the milk. That did not appeal to him either.

Long story short we found out that he can tolerate AND likes regular soy formula! So we've switched him to that full time and he loves it. And insurance is probably glad we've switched as well. The Neocate formula costs about $900/month!! You would think with something that expensive they could make it taste a little better.

Jackson is so close to sitting up on his own. This dragon ball popper is going to be his main motivation to mastering it. He giggles and squeals when its on.

Here is an action shot of Jackson in pure excitement mode. When he gets excited about something his whole body tenses up and he shakes. It is the cutest thing.

Jax is now rolling stomach to back and back to stomach. He's slowly figuring out that he can get to different places and things by rolling around. Carter is a little wary of his new tricks because it means his things are no longer "safe."

Jax and his binky.... The love of his binkie may be the death of me. Jackson doesn't suck on a binkie. Jackson plays with a binkie in his mouth. He can't keep it in by himself. He won't suck hard enough on it to keep it in by himself but yet he almost can't function without it. This "problem" has resulted in me being very creative with the placement of his blankets to try and keep a little pressure on the binkie. Luckily he has become able to hold his own binkie and so it's no longer a problem. I go in a see him just like this every sleep. Holding his own binkie. FINALLY

Mr. Jax really loves to eat. You really can't eat in front of the boy without offering him something. I think his absolute favorite foods are avocados and meatballs. I really haven't fed him anything that he hasn't liked(which may not be saying much since he has a somewhat limited diet.)

At 8 1/2 months Jackson is weighing in at 17 1/2 pounds. In another pound he will have tripled his birth weight. He even moved up from the 3rd% to the 10%.

He is doing so well. We continue to decrease his TPN and he continues to gain weight which makes the end of TPN a closer goal. He is such a sweet, happy baby. He has a cute little personality that makes us forget all the work we've been through!

At 8 months:

This is all the hair that Jackson has. He has not lost any since birth but it has hardly grown. His hair is very light. It will most likely have some red in it but it's hard to tell with such little amounts.

He still has 0 teeth. And none that are in sight of popping through. Bald and toothless and darling. Carter had teeth by 5 months so Jackson is not following suite.

Now onto a totally random part of this post:

I get asked a lot if Jackson having no hair and no teeth are part of his condition. Part of me wants to say "Is this really the first bald and toothless baby you've ever seen!?" So the answer is NO. Totally unrelated. And to answer another question I've been asked several times (mostly by the same person) "No, Jackson will not be 'slow' because of his condition." Do your intestines play a part in your reading or math skills? Didn't think so.

And please, just because your dad's brother is a doctor of any kind and you tell him you've met a short gut patient, please don't come and tell me how awful and horrible it is to be a short gut patient. And what a poor quality of life he will have. Believe you me, we know exactly what we're dealing with and we know this is no walk in the park. And most likely, your dad's brother doesn't really know a single thing about short gut. All he knows is what he's read about in a textbook his first year of Medical school. Short gut is not a good thing to have. But I promise there are worse diseases/conditions out there. And medical advances have come a long way and Jackson is expected to live a long and healthy life.

Feels good to have that off my chest. And don't worry, all of the random people who have asked/told me these bizarre things don't read this blog so I don't have to worry about offending anyone.

Cautious Carter

January has brought a lot of firsts for my Cautious little boy. He is not a fan of taking risks(he gets that from his mother) and so he's very hesitant to try new things. Since we missed summer swim lessons I decided to sign him for winter lessons.

Carter LOVES swimming. Carter loves swimming on HIS terms. He doesn't like to get his face wet or water in his eyes or ears. He has no desire to swim alone.

Enter swimming lessons....

The first thing they moved was the back float. We have been unable to get Carter to float on his back or even lay down in the bathtub. The first day his poor little eyes were wide with terror and he was clinging to his teacher, hanging on for dear life. Now he can float on his back (although it still freaks him out a bit). He actually doesn't mind floating on his back until the day came where the teacher let go of him and wanted him to float alone. But he has made such great progress in that area.

He will now swim with his face underwater where before he kept his head above and tried to doggy paddle. He actually likes to do bobs in the water now.

He does reach his limit at swimming lessons though. I feel bad for him and part of me wants to scoop him up and never make him do something that scares him ever again. But then the rational part of me knows its good for him. Very good for him.

And no matter how "traumatized" he is after each lesson he keeps begging for more. So I know he's not too traumatized! He takes lessons on Tuesday and Thursdays and each day he will ask "When will it be swimming lesson day!" He just finished his 4 week session and we signed him up for the next session as well. Needless to say, he did not pass this level! But I'm so proud of him for facing some of his biggest fears and going back day after day to practice.

To make sure none of his skills are forgotten, Carter will proudly show me all of his moves in the bathtub now. The front float, with face fully submerged.

And the back float. He's actually fine floating on his back in the bathtub since he knows he can't sink!

The 2nd risk of the month:

Learning to ski. He has now been to Beaver Mtn. 3 weeks in a row.

The first day he got fitted for a new helmet, skis and boots. The man at the shop, who was very nice, was initially helping him. Carter got a little overwhelmed so we stepped in and took over the fittings.

Then out to the slopes where we learned that Carter is NOT a natural skier! But bless his heart, he did try.

He started getting the hang of it after a few trips down the mountain. He even started asking us to let go of him so he could go by himself. He hasn't quite figured out the whole balance thing yet but is making good progress.

Neil was so patient with him.

There were a few of the expected meltdowns but nothing major.

Carter's favorite part of the experience was the magic carpet. That was his motivation for skiing down the hill; to be able to ride back up again. He viewed it almost as an amusement park ride.

After a long morning of skiing we unwinded in the lodge with some snacks and a juice from the snack bar. Which is now a must have apparently.

I'm so proud of my little boy for being so brave and trying all these things that really stretch his comfort level. I keep reminding him that he was scared to death of walking for the longest time and scared of riding his bike and now he's a pro!

And now for some sweet pictures of my brave boy.

Tuckered out after a long day. Snuggling with Monkey. Monkey makes everything better really.

Carter is quite a copycat sometimes. One morning after laying down on ice packs for a bit to ice a sore back Carter decided that his back was quite sore and had to have him own time on the ice packs. This required Monkey and Mickey and his blanket!