4 of Us

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.

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.

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!

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.

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

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!