It's National Eosinophil Awareness Week!

Not a lot of people are aware of what eosinophilic disorders are and what they entail.  Here is a short fact sheet with some basic information about each type of eosinophilic disorder (remember, Caleb's sub-type would be under eosinophilic gastroenteritis).  Here is a short video with some information about eosinophilic disorders.  Watch it all.  Those kids will make you cry.  For more information, go to apfed.org.

I wanted to do this post to make you all aware of what Caleb goes through.  Yes, he looks "fine" to those who might pass us in the grocery store.  In many ways, he is "fine."  But for him to eat foods that he is allergic to feels like drinking bleach.  It's like pouring acid on a rash.  That's why he throws up and that's why he would rather starve to death than eat a single bite.  I remember putting breast milk down his NG feeding tube when he was a baby and had just come home from the NICU.  He would squirm, like he was uncomfortable, but he wouldn't cry.  I was causing him intense pain just by feeding him.  I remember when he was just over one year old and he would refuse to eat or drink for days, and then give in to the hunger and eat three jars of baby food, or a whole cup of yogurt.  Immediately afterwards, he would projectile vomit everything back up.

Here is what Caleb is able to eat today, his "safe" foods:

• Apples
• applesauce
• dehydrated apples
• freeze dried apples
• apple juice
• Grapes
• raisins
• grape juice
• Peaches
• pureed peaches
• Pears
• pureed pears
• pear juice
• Chicken
• canned chicken
• fresh chicken
• ground chicken
• Tuna
• Sweet potatoes
• pureed sweet potatoes
• sweet potato fries
• sweet potato chips
• White potatoes
• potato chips
• Rice
• rice pasta
• rice milk
• canola oil/safflower oil/sunflower oil
• lots of added calories to his other foods!

He has been having an "off" week.  He won't take more than a few bites of any food at any meal.  He has been sleeping more than normal (goes to bed at 9/9:30 and wakes up at 10:30/10:45).  It's possible that he is reacting to one of the foods that we thought was "safe."  So we're stuck again.  We don't know what's going on or what to do next.

I just learned that another symptom of eosinophilic disorders is leg and joint pain.  I think Caleb is experiencing this.  He will stand at the top of the stairs and cry until I carry him down.  He will run from the driveway half of the way to the front door and then stop and ask to be carried.  He wouldn't take more than about ten steps at Disney World before asking to be carried.

I wish we knew why.  I wish we knew how to take the pain away (in his legs and his digestive system).  I wish we could tell if he was reacting to a food without having to put him under anesthesia and take a biopsy of his small bowel.

I wish he could have fruit snacks at nursery in Church.  Nate and I have decided that we can no longer let him stay in nursery during snack time, because he keeps asking for the foods that the other kids are eating.  Even if he was allowed to eat those foods, he probably wouldn't take more than a bite or two because he doesn't like eating, because eating is associated with pain.  But he still wants to be included.  He is able to identify many, many foods that he isn't allowed to eat (pizza, crackers, cookies, fruit snacks...).  As his parents, it is painful to watch.

I wish we could put him on steroids and allow him to eat anything and everything, but long-term use of steroids is dangerous.  When the time would come for us to take him off of steroids and do more food trials, he would have a hard time giving up the foods that were once allowed.  A month ago he "failed" a trial of green beans, and he still asks for them.  It makes me not want to trial any more foods, because it will just result in heartbreak when he "fails" and is no longer allowed to eat them.  But really, I just want him to be able to eat!  I feel trapped.  Like this will never get better.

I know you all love and care about Caleb and our family.  I can feel it in the support that we get and the kind words that you give.  Thank you so, so much.  It really makes a difference.

Now, I want to let you know a few ways that you can support Caleb and be more aware of what life is like for him and other people with eosinophilic disorders.  Here are a few simple things that you can do every day:

• Don't eat in front of him unless he is in his high chair and has his own food to eat.  It will just make him curious and jealous if you do.  It's like smoking in front of someone who is trying to quit.  To put it simply, it's cruel and torturous.
• Don't offer any kids any food without first asking a parent.
• Pick up after yourself.  If Caleb finds food on the floor at church, he might put it in his mouth.  Not only would it void any food trials we may be doing at the time, but it might make him very sick with stomach pain and vomiting.
• Teach your kids to be respectful, and be respectful yourself.  If you're curious about Caleb's feeding tube, just ask.  I really don't mind talking about it!  I'll even show you!  Teach your kids to be inclusive, and not to tease people just because they're different.  Caleb may never eat food at school.  He may have to give himself a tube feeding during lunch.  He may eat nothing but an apple and some chips.  There is no excuse for his peers to tease him.  This disease is painful and alienating enough.

Here are a few challenges that I want you to try:

• Have a party or get together or something where food isn't involved.  Try it just once.  See how it goes.  Our society is so centered on food, but there are ways to have fun without food.  If you think this is too hard, think about how hard it is for Caleb and people like him to have to be around food at every party they ever go to and be expected to have fun without eating any of it.  Think about how hard it will be for Caleb to date some day.  There is only so much bowling and mini golf that a young adult can do.  Having this disease does not condemn him to a life without fun; you CAN have fun without food!  You just don't know it until you are forced to do it.  Take this as a reason.  I dare you.  ;)
• Try to eat like Caleb.  Yes, that's right.  Limit yourself for at least a day to only the ten foods that Caleb is allowed to eat.  See how hard it is.  See how awful it is to watch everyone around you eating tempting things.  See how hard it can be to run errands without being able to depend on picking up some quick fast food.  We are going to the museum tomorrow and I can't count on stopping at McDonald's for a Happy Meal on our way home.  I have to pack his food, a lot of it on ice, and bring it with me.  It's doable.  We have been doing it for 11 months now!  You can do it for two days.  I believe in you!
• Let me know how it goes!  I want to hear about how much fun your food-free party was, and how creative you had to get with Caleb's food restrictions.  Just FYI, you can use salt.  :)  And you can use chicken breasts cooked in canola oil, rice, apple slices, and applesauce to make stir fry.  It's actually quite good!  And rice milk, frozen peaches, and grapes make a delicious smoothies.  And you can use rice flour, salt, canola oil, rice milk, and applesauce to make pancakes.  :)

As an inspiration, think of those little kids on the video.  One little girl just wants a piece of birthday cake.  One little boy, not much older than Caleb, would give anything for a piece of pizza.  If thousands of people can do it every day, you can do it for a day or two!

Good luck!

Remember When...

Remember when I got to change Caleb's diaper for the first time?  He was two days old.  It was poopy!

(Beware: this is not edited.  You will see a baby's bum.  No biggie, right?)

Isn't his cry the most heartbreaking thing you've ever heard?

The nurse said not to lift his legs too high, because in a baby that small it could make the blood rush to his head and cause brain damage.  Scary, huh?!

Can you believe that I actually liked changing his diaper back then?  Two and a half years and hundreds of poopy diapers later I'm a little burned out from the diaper-changing thing.  There should be a quota for the maximum number of poopy diapers a mom can change in one day.  Five...six...that's just too many.

Disney World Vacation!: Day 5

Due to a major lack of sleep the night before, I felt like a zombie all day.  Seriously tired.  And we had to get up early to get to the Magic Kingdom.  It was rough.

But once we were there, it was wonderful!  Russell wasn't even cranky!  Caleb must be a bit of an adrenalin junkie, because he loved every single ride!  After each one he would almost cry, saying, "I wanna do it again!"  But after we told him that we were going to go do another ride, he was ok.  I've never had so much fun spoiling my child!  I wish every day could be as magical.

In line for It's a Small World.  

While we were waiting in line (for like 20 minutes) Russell had what I like to call a diaper incident.  Let's just say I'm lucky he was the only one who needed a change of clothes.  He spent the rest of the day in a sleeper. 

The magical look on Caleb's face as he saw the real-life Mickey Mouse and Minnie for the very first time!  I still tear up when I think about it.  This was most certainly my favorite part of the whole trip!

Caleb was a little hesitant to give them "tight squeezes" at first (that's what he calls hugs), but he gave Mickey a high five.  Then he gave them both tight squeezes.  And you do you know what Minnie did?  She gave him a KISS!  Caleb still talks about it to this day.  I think he's in love.

I don't think it was Russell's favorite part, however...who can appreciate Mickey Mouse when they're hungry?

The highlight of Caleb's life.

It's unreal.

Of course we had to buy him a Mickey Mouse stuffed animal to memorialize the experience.  He's pretty attached to that thing.  And his mouse ears.

He later tried to help his Mickey suck his thumb.  Too cute.

We had to get a picture with the Disney Castle.  Caleb gets so excited every time he sees the Disney Castle at the beginning of movies.  He talked about it all of the time before going there.

Then he conked.

They both did.  Caleb with his Mickey Mouse and his ears on, of course.  They both had a nice 2-hour nap.  It made the rest of the day go sooo smoothly!

Afterwards, he was happy to ride in the teacups.

And the carousel.

And the flying elephants.

And look cute.

Right after this picture was taken, Nate took Caleb to a 3D movie where "Donald Duck fall down!"  Again, Caleb still talks about it.  When they came out of the movie, Caleb no longer had his Mickey Mouse ears!  :(    They went back looking for them, but couldn't find them.  We were all heartbroken.

Then we went to the Tiki Room, where they have fake birds singing.  Russell was getting a bit cranky, so I let him gnaw on my finger.  Lo and behold...I made a great discovery!  A TOOTH!  No wonder the most sleep I got the night before happened while B. Russ was eating.

I will always remember that Russell's first tooth was discovered in the Tiki Room at Disney World.

Just before we said goodbye to the place where all of Caleb's dreams came true, we made a stop at the Lost and Found to see if someone had turned in some mouse ears.  They hadn't, but the wonderful "cast member" (yeah, it's cool but still kinda weird that they call their staff that) was sooo kind and wrote us a ticket to redeem some new mouse ears for free!  So we went to get some more before leaving, and Caleb about had a meltdown because I didn't let him get the Minnie Mouse ears instead!  That boy has a serious crush on that pretty little girly mouse!

All in all, it was a magical day.

Remember When...

Remember when I got to feed Caleb for the first time?

He was one or two days old.  I was pumping breast milk for him, and I was only getting a few drops every two hours.  (That's not unusual.)  But guess what?  Caleb only needed a few drops every three hours!

The nurse had a little syringe with three ml of warm breast milk, which is just about half a teaspoon!

She put the end of the syring into his feeding tube (it went through his mouth, down his throat and into his stomach) and said to me, "Would you like to do the honors?"  I said, "Really?!"

She handed me the syringe and I pushed the breast milk down into his tummy.

And that was the first time I fed my baby.

It felt really good to be able to do that.

Disney World Vacation!: Day 4

Wedding day!  Caleb looked so dashing in his tux.  He and his cousin, Danny, were a little bit confused in their roles as ring bearers...they kind of thought they were flower boys.

Those petals are so irresistible for 2-year-old boys!  Thankfully the 6-year-old angel of a flower girl was patient and helpful in keeping them in line.

They made it all of the way down the aisle and climbed the stairs to the top, just like everyone else.  Only, everyone else doesn't have to climb with their arms.  Give the kid a break.  He's short.

And then he came back like a good little boy to sit with us so as not to be a distraction during the ceremony.  This was a relief.  I was worried that I'd have to go chase him down in my heals in front of all of the guests.  But something about wearing a tux made him behave like a little gentleman.

The ceremony was beautiful.  The vows were the most beautiful that I have ever heard.  They made me cry! And I'm a heartless, emotionless, stone of a person, so that's saying something!

My brother looked like Prince Charming and my new sister-in-law looked like a princess!  Perfect for a Disney Wedding.  I can now say that all of the most beautiful women in the world are my sisters!

The reception was amazing in so many ways.  Although there was the delicious food and the fancy venue, I'd have to say that my favorite part was the performing!  My brother and his new wife are both ballet dancers, so their first dance looked like this:

Yep, ballet.  So impressive and fun and unique and entertaining!  

They even took a bow after cutting and eating their cake, which looked like this:

Caleb certainly approved.  He loves WALL-E and EVE.  And thankfully the cake topper didn't break when the table with the cake on it collapsed.  It was all Disney's fault, so they replaced the cake (very quickly, I might add) and gave it to them for free.  How nice!  And how memorable!

They also had choreographed dances for the mother/son dance and the father/daughter dance.  It was quite the production!  So fun!

My sister-in-law changed into her Kimono for the reception.  She grew up in Japan!  They're gonna have some attractive kids, that's for sure!

Russel, the little beau, got to dance with the bride.

Caleb got his dance on, too.

He's come a long way compared to before our trip, when "dancing" was bending at the waist.

 Nate declared that the reception was his most favorite part of the whole trip.  He loved following Caleb around, watching him act like a 2-year-old little man, exploring and having fun.  

Yes, even 2T is too big on my little 2.5-year-old.

At one point he was dancing and he turned around to see the beautiful bridesmaids sitting together at the table.  He stopped dancing, raised his hand next to his face, and waved at them while smiling the most flirtatious smile.

He discovered something new and wonderful: ice.  And the server was kind enough to bring him some grapes, since that was the only thing they had that Caleb could eat and by that point we were running out of food that we had brought for him.

After the typical reception at The Boardwalk, the guests were bused to Epcot where we watched the amazing fireworks from a private patio.  By that point we had two sleeping boys in our arms so we didn't get any pictures.  We tried and tried to wake Caleb up to see the fireworks, but he didn't wake up until they were over half-way through.  He enjoyed the half that he saw, though!  Then we were brought to a private area for a "dessert reception."  It was delish!  Then we were bused back to The Boardwalk where our cars were.    Caleb entertained everyone within earshot on the bus by first pointing out all of the cars he saw ("I see a white car!  I see a red car!  I see another white car!) and second by telling all of his aunts and uncles how smart they are.  "Uncle Wade fart.  Auntie Becca fart."  How can I not be proud of my little boy?  So classy.  So fart.  I mean smart.

We didn't get to bed until 1AM that night.  It was a long, fun, tiring day.  And that night....

...I have one word for you...

TEETHING!

Remember When...

Remember when Caleb opened his eyes for the first time at seven days old?

When Caleb was born, his eyes were still fused shut, like a brand new kitten's.  The doctors told us that 99 percent of 27-weekers are born with their eyes open, so maybe Caleb was actually earlier than 27 weeks.  But I had had an ultrasound at 8 weeks 4 days that determined my exact due date, so I knew he was exactly 27 weeks and 1 day when he was born.  He was also a good size for a 27-weeker.  I grow 'em big.  ;)  I guess he was just in the 1% that have their eyes closed.  Just like Caleb!  Defying the [bad] odds!

From the beginning, Caleb would try and try to open his eyes.  The nurses would put saline drops on his eyelids to keep them moist and hope that it would help them come apart.

He tried!

And tried!

And tried!

I would hover over him for hours (when I knew that he was awake), just hoping that he would open those eyes!

When Caleb was exactly one week old, the neonatologist was by his bedside doing his daily rounds.  He looked down at him and said to the nurse, "Are his eyes still closed?!"  The nurse said, "Yes, he's been trying and trying to open them, but just can't!"  As the nurse looked away for a moment, the doctor bent down close to Caleb.  When the nurse looked back, the doctor said, "LOOK!  They're open!"

[The very first picture of his open eyes, just moments after they opened!]

Sometimes Caleb just needs a little bit of [unofficial] help.

I made it to the NICU about ten minutes after he opened his eyes.  I had really been hoping that I could be there the moment they opened.  How wonderful would it have been if I had been the first thing he saw?

 It took a long time to be able to figure out this open-eyes thing.

 He wasn't coordinated, but that's ok!  He had plenty of time to practice.

Of course he figured it out and now I get to look into his big, beautiful eyes every day!

We've Still Got It!

 We showed.  We won.  Not bad for an old couple!  (Hank is 23 and I feel old having just had a baby 4 months ago!)  It's been about five years (maybe more) since showing.  I was disappointed in Hank's performance in a few of the events (ummm...hello...it's totally basic to be able to trot without dropping down into a walk.  Lazy horse) but there were a few events where he was PERFECT!  I couldn't have asked for more.

 [Baby pudge.  Ugh.  At least my old show clothes all still fit!]

[Hank was a good sport, putting up with our silly shenanigans.]

[High point!]

It was good practice.  The competition wasn't too fantastic, so next time I expect to do better.  I'm excited to be showing again (and I'm not talkin' about a prego belly)!