And again...

Caleb is sick. But this time I'd be surprised if it was a bug. Here is how it all happened:

On Monday I talked to the GI doc and we decided that the prednisone wasn't helping, so he got his last dose on Tuesday and we started a new acid medicine (I'm not sure why we started the new med...it doesn't make sense that it would help...it frustrates me).

Tuesday and Wednesday Caleb ate like a pro! I've never seen him eat like that before!

On Thursday, he refused to eat any solid foods at all, but he was still drinking plenty of pediasure and acting like himself, so I wasn't too worried.

On Friday the solid-food-strike continued. He was still drinking enough (but really, does he ever drink enough? No.) so I wasn't too concerned, but I decided to call the pediatrician just to be safe. I talked to a nurse who said to wait it out and call the GI doc (who was out of the office for the rest of the weekend).

On Saturday he acted normally (aka, not eating) but in the evening he threw up a significant amount and then fell asleep in the living room a few hours before bed. Then he threw up again. And again. Then he said, "all done." And threw up again. Nate and I cried. And we put him to bed.

That brings us to today. I woke up early for church (it was Nate's turn to stay home with Caleb, since Cal hasn't been to church since he started on the prednisone, because it weakens the immune system and he could get very sick...little tangent)...I woke up early for church, and I heard Caleb heaving in his room. He had no energy to cry (makes me wonder if he heaved all night long without anyone to comfort him. Sad.). So I patted his back while he retched and retched and retched. Nate slept on a blanket on the floor so Caleb wouldn't be alone. They were still there when I got back from church four hours later. Every time Caleb would drink water, he would throw up. If he didn't drink water, he would dry heave. And he would lay listless in our arms. He threw up so much that the blood vessels in his face all came to the surface and he had red spider veins all over his little shallow cheeks. So we brought him to the ER.

At the ER, they gave him an IV and took blood for tests. I insisted on doing the RAST allergy blood test (which they had never heard of...wow...I never thought I would need to have such unique medical knowledge). He would need the RAST testing done eventually, so I thought, "you might as well only poke him once!" Thankfully they obliged, even though HE RAN OUT OF BLOOD!!! Seriously. The vein didn't collapse, they could still flush saline into it, but there was no more blood to come out of it. It was sad. They went to great, terrible lengths to get every drop of blood possible. Then they gave him 100 ML of fluids.

Then the blood tests came back saying that Caleb was quite low on electrolytes, so they tried to give him 50 ML more of fluids, but the IV went bad. So, they had us give him 2 oz of pedialyte, which he scarfed, and when he didn't throw it up they sent us home.

Then he slept for two hours on the living room floor, he drank a few more ounces of pedialyte and a bit of raspberry sherbet, and we gave him a bath and put him to bed early. And he fell right asleep.

The cause of his ailment is one of three things: 1) a bug, 2) abruptly stopping prednisone, or 3) his EE is just plainly out of control.

It's likely not a bug, because he doesn't have diarrhea. It's likely not from the prednisone, because he was on such a low dose that the GI doc said that it wouldn't hurt to stop it abruptly.

So, that leaves us with lovely door number 3!! And what have we won, Stan!? A whole, new path that no one ever wants to go down! But I'm ready!

It's cruel to let a child suffer like this. I can't handle it any more. Caleb is obviously in pain and we can't expect it to go away until we get rid of the allergens in his diet. So, tomorrow when I call the GI doc, I will demand that we start Caleb on an elemental formula, that we have access to NG tube accessories in case he doesn't drink enough of the nasty-tasting formula, an appointment SOON with an allergist (I made an appointment with one in OCTOBER), and knowledge on how to do the elimination diet. Yay (not).

It makes me want to cry thinking that Caleb may never be able to have ice cream. But it's worth it to make sure that he can live a pain-free life. People these days find too much joy and fulfillment in food. Caleb will just have to find it elsewhere. And that's the diamond in the rough. We just have a lot of years filled with a lot of rough.

It's hard to say that All Bad Things Must End when your child is diagnosed with a chronic condition. The condition won't end in this life, but the pain will. I look forward to that.

It's my turn...

I WIN again!

We went out to eat at Denny's tonight (we had a coupon and the lime growing inside of me wanted an omelet).

There were green peppers on my omelet. Caleb likes green, red, and yellow peppers. So I gave him one. He put it in his mouth, made a face, and spit it back out. Then the crazy kid picked it back up and put it in his mouth and chewed it once or twice. That's when his face turned red. He spit it out and started whining. Then started crying. Then Nate tasted a pepper.

It was a jalapeno.

I win the Worst Mom Ever prize this week.

I'd like to know when you all win the prize. Sometimes I feel like I'm the only one.

Oh, the things he does!

• At the end of every prayer he says "night-night," even if it's at the dinner table.
• After giving a kiss to something, he has to say "bye-bye."
• After saying "bye-bye" to something, he has to kiss it, including when I told him to put my medicine bottle back on my night stand. Yes, he kissed my medicine bottle and told it bye-bye.
• He will spend over half an hour picking up books and bringing them to me to "read" them to him, but then turns the pages too fast for me to actually read anything.
• Has memorized where every bear, ball, dog, horse, duck, Santa, and sock is in every book he owns and will point to it and say what it is when he turns the pages. Sometimes he doesn't even look at it. He's a fast page-turner.
• Will "read" books on his own--saying "bababababababa" with inflection for each page.
• Says "all done" when he's done eating something, done playing with something, or wants to be done with something that I'm doing to him, i.e. brushing his teeth, riding in his stroller, cleaning off his face, etc.
• When he is "all done" eating something, he knows that he's supposed to put it in the top corner of his high chair tray (instead of throwing it on the floor). Lately, he insists on us taking whatever he's all done with.
• Thinks that dryer sheets are for wiping noses. Yesterday he climbed up on the couch just so he could wipe my nose with a dryer sheet. So sweet.
• Thinks that out of every window there is a "horse." The back window in our living room (which he isn't tall enough to see out of on his own) always has a nice view of the horses. He wants to see them out of every window now.
• Uses every sort of device as a telephone to hold to his ear and say "hi" and "bye-bye" to. I'm talkin' remotes, baby monitor, shoes, everything.
• Will use a spoon on his own if I put something on it for him (like black beans). He only does it because of the novelty of having a new way to eat. I fully expect that he'll stop doing it before too long. How can you expect a kid to eat with a spoon if he just plain doesn't want to eat at all?
• Is back to not wanting to eat much. He's still drinking more than before he started the prednisone, but I don't know if that's because of the medicine or because we now lay him down with a bottle to drink in his crib. It's a concern that even if he feels better, he won't necessarily eat better because he's learned after all this time that eating is not fun, no matter what, and it's ingrained in his brain. But we've been doing everything we can to make eating fun, and to leave Caleb in control of what and how much he eats, so he doesn't feel any pressure. I'm fairly certain that once he does actually feel better, he will eat more. So at this point I'm thinking that even with the medicine, he still doesn't feel good. :(
• His diagnosis is actually eosinophilic enteritis (EE), not gastroenteritis (EG). The only difference is where the allergic reaction takes place in the digestive system. And it turns out that my mother-in-law's cousin has five kids who all have EG. So, even though my side of the family has hosts of various digestive problems, this one can be blamed on Nate's genes! YAY for not taking the blame! (But we both can be blamed for Caleb being tongue-tied. My dad was tongue-tied and Nate's aunt was tongue-tied. Bummer.)
• At his latest weight check, he gained a few ounces! He is now up to 17 lbs 11 oz. Only a few ounces behind his 7-month-old cousin. :)
• Caleb gained 3 pounds in the three months before his birthday. He has gained almost three pounds in the past seven months. Yes, growth slows down at this age, but it shouldn't slow down that much.
• I'm obsessed with my son's weight and it's driving me crazy.
• Last but not least, he tries so hard to form sentences with his words. His therapist said that would come when he knows about 50 words, and he's about there! Mostly he wants to say "bye-bye dada" or "bye-bye dog," but it comes out "bubba-d." SO CUTE! He doesn't get frustrated by not being able to say it yet, but I can tell he's thinking about it. He just doesn't know how to make his mouth work to do it right. Hopefully he'll figure it out before the tantrum stage so that we can avoid miscommunication frustration.

:)

Hello, Week 12!

taken 6/6/11 (11 weeks 5 days)

Today I am 12 weeks and the baby is the size of a lime. Holy smokes, that poppy seed grew fast!

The top of my uterus is finally above my pubic bone, meaning that before too long my flabby belly will become hard. (Right now my big belly is just internal organs being shoved upward and outward. Gross, I know. At times it looks and feels like a spare tire, but it can't be, because I haven't gained any weight. I guess that's just what happens when you're short?) The baby's brain and nerves are developing, and it now has reflexes! If I poke my belly, it will squirm away from the poke. Cool, huh?!

Thankfully, I'm not quite as sick as I was before. I still usually take 1/2 of a zofran pill every day. My headaches are getting waaay worse.

Water sounds repulsive to me. The only things that I want to drink are chocolate milk, gatorade, and sparkling cider. And snow cones. With my last pregnancy, in the first trimester I craved spinach leaves and carrot sticks dipped in spicy cilantro-lime ranch dressing. A box of chocolate cookies in the pantry sat untouched for months. I hated the thought of anything chocolate. THIS time...Little Debbie snacks are my best friends. And every single morning I eat a crunchy oats 'n' honey granola bar. Yummm. I just saw two commercials--one for twix and one for kit kat. I just about called Nate to ask if he'd get some from the vending machines at work and bring them home for me. I'm thinkin' my weight will increase much more easily this time around. Yikes. I hope the second trimester treats me well, so I can at least think about eating healthy things without getting sick. I want an easy recovery, like last time! And I want to take care of my little lime!

You guessed it...there's another one on the way!!

You know, I never thought that Caleb would ever have the word "big" describe him in any way, but in December (hopefully no sooner) he's going to be a BIG brother!

Here are the answers to some questions that you may have:

When am I due? December 21st. Hopefully I won't deliver any time before Thanksgiving (although it would be cool to have a baby on 11/11/11, and that would only be 6 weeks early).

Was this planned? Yes, of course. Do you think it's possible for my body to do this on its own? My doctor started me out on the same dose of Clomid that I got pregnant on with Caleb; 200mg. It only took two cycles, which was super nice compared to the five cycles of Clomid that it took for Caleb.

Am I having quadruplets? No, thank goodness, but I feel like it at times. I had an ultrasound a few weeks ago to confirm that there was indeed only one baby in there. And there is! One little baby with a good, strong heartbeat! But there's also a little pocket of fluid that will either reabsorb or bleed its way out. But nothing concerning.

How am I feeling? Miserable. But I'm the happiest miserable person in the world! I've had a few days now where I can get by not taking zofran, which is nice, because if you've ever taken that med you know that it has one rather miserable side effect. I spent most of the last four weeks needing zofran three times a day. Ugh. Still, I often wake up in the middle of the night needing zofran/tylenol/a snack, which are all on my nightstand. I've only thrown up once, but most days I have 1-3 episodes where I wonder if I will be able to make it to the bathroom or a garbage can in time to hurl. But, it always seems to pass.

When I was pregnant with Caleb, I had five major pregnancy side-effects: Extreme hunger, frequent visits to the rest room (especially in the night), terrible migraines, crazy bad heartburn, and major moodiness. This time? I'll put it in nice little bullet points for you. :)

• nausea/vomiting
• a love/hate relationship with the bathroom. Any more info would be too much info. ;)
• killer headaches
• waaaay tired
• I can hardly breathe out of my nose!! This is because of an increased blood volume; it's squeezing my nasal passages shut
• abdominal discomfort (feels like pulled muscles, especially when I roll over in bed)
• weird, vivid dreams (when I can actually sleep, that is)
• and I'm starting to get heartburn. Lovely.

So far I'm not moody, which I am extremely grateful for! I think my dear husband is grateful for that, too.

So, the moral of the story is: this pregnancy is so different from the last one that I would be surprised if it wasn't a girl.

What are my plans for staying pregnant? Good question. We don't know yet. I found a new doctor's office that I LOVE. The thing with this office is that you see a different doctor every time you go in, which is good and bad. Every doctor there, though, is equipped and experienced enough to handle a pregnancy like mine. The first guy we saw said that I will definitely get the weekly progesterone shots (starting at 17 or 18 weeks) to keep me from going into preterm labor. He said that there's no reason not to. I like that. He also said that unless he is 100 percent sure that a cerclage (stitching the cervix shut) is the only way to keep a woman pregnant, he doesn't like to do it. But, he said that the next doctor we see might feel differently, and that that would be a good thing. It would let us see both sides and make our decision based off of what we feel and think. But time is running out! The cerclage has to be done before 14 weeks (that's just 3 weeks away). And my next appointment is only 2.5 weeks away! So, we're going to try to have our decision made before the next appointment, and then if the doctor gives us any very convincing information to sway us, we may change our minds. So we'll just have to see. We have lots of praying to do.

Do my clothes still fit? Why, thank you for asking! NO! With Caleb, I couldn't button my pants by 12 weeks, even though I hadn't gained a single pound! So far, I haven't gained any weight and I've been wearing my maternity pants for almost a week now. And I'm not even 11 weeks! They say you show earlier with your second pregnancy, and I showed early last time, so I'm really in for it! But I don't mind. You can call me "huge" all you want. I love having a "huge" pregnant belly. Just don't ever call me fat. It's not fat. It's a baby.

5/29/11; 10 weeks 4 days pregnant

Am I crazy? Yes, probably. We thought two years was the perfect gap between our kids, but now with Caleb's diagnosis I wonder what will happen if I have to go on bed rest (which isn't necessarily unlikely, especially if I don't have a cerclage). Sorry to have to lay this on everybody, but I might need a lot of help. I didn't plan on being a burden, but sometimes things change. There are just so many things that are out of my control.

But whatever happens, we're more excited than scared! I'm gonna have another baby! Hooray for little blessings from God!

And if you have any other questions, just ask. :)

I've been working on a lot of things lately!

I've been busy making things. Maybe that's why blogging has been a little...absent...lately. Here are a few of my latest creations!

Square Foot Gardens!! Here we have peas, strawberries, and onions (the tomato and pepper plant died from the cold. I've been meaning to replace them):

Here we have zucchini and pumpkins:

I have a sewing machine! And better yet--I know how to use it! To start with, I made a pillowcase (not shown) and I made Caleb these two simple, imperfect, yet darling little stuffed toys that he actually really enjoys playing with!:

After doing those, I felt confident enough to make Caleb this adorable pair of pants! They fit him perfectly, and they cost less than $2 to make! I plan on making more out of some remnant suit fabric that I got from Joann's, and also some light khaki pants (also from remnants)!:

And, my crowning glory and most impressive creation yet...The Kid:

Stay tuned and tomorrow I'll tell you about another fun little project that I'm working on!

Eosinophilic Gastroenteritis...say that one time fast!

Caleb has a diagnosis! The biopsy from the scope came back positive for Eosinophilic Gastroenteritis (EGE). That's a mouthful. But it's a belly empty for Caleb!

The GI doctor actually told me that Caleb's diagnosis was "Allergic Enteritis," but after a tiny bit of research, I found that that's not actually a real diagnosis. The real name for it is Eosinophilic Gastroenteritis.

A few of the basics

EGE is a reaction to food in the digestive system. Caleb's happens to be in the small bowel. It's most commonly found in the esophagus.  The body produces eosinophils, a specific type of white blood cells, as a reaction to certain foods.  It's an autoimmune response.

It is extremely painful. The GI doc said to imagine if Caleb had eczema on his skin and every time we fed him we poured acid on it. Ouch. It's a miracle that Caleb hasn't been crying and crabby for every second of every day of his life!

Abdominal pain is the main symptom of EG, but other symptoms include nausea, vomiting, weight loss, and malnutrition (sometimes EG can make it hard for your body to absorb nutrients). Sound like someone you know? ;)

The reaction is similar to allergies. It appears that the most common EGE food reactions are gluten and dairy. Even though the enzymes in the biopsy showed that Caleb is able to digest gluten and dairy--i.e., he doesn't have Celiac Disease or lactose intolerance--he still could have reactions to those foods. It is possible that Caleb has different or more reactions. It's also possible that Caleb reacts to literally all foods. Yep.

The only way to diagnose EGE is by doing a biopsy of the effected area. The biopsy will show an eosinophil count above 20; Caleb's count was over 40.

It is very rare. No one would have ever guessed that Caleb had it if we hadn't tested for absolutely every possible problem with the biopsies. But now that we know that he has it, it makes perfect sense! When he was about 6 months old, he would get excited when he saw the bottle, and he would act very hungry. After taking a few sucks, he would refuse to drink any more. I knew that he had to be in pain, and that he'd rather feel hunger pains than digestive pains. And yet he never cried!

The first line of treatment for Caleb is to use prednisone (a steroid that weakens his immune system, since allergies are an overreaction of the immune system). He will be on that for 1-2 months, depending on how well it works. While he is on it, we will be keeping him home from Church and trying to keep from exposing him to germs anywhere else, too. I'm glad it's not sick season any more, but still. This child has a weak enough immune system as it is.

If he regresses after discontinuing the prednisone, we will have to consult with an allergist to figure out what allergies are causing the pain. The problem with allergy testing in a child under the age of 3 is that the results will show a lot of false positives and false negatives. So we'll probably have to do the "elimination diet," and start by giving him a hypoallergenic toddler formula, and slowly re-introduce one food at a time and see how he reacts. The problem with this is a) in a child who already doesn't eat enough, it is very hard to take away the foods that he is willing to eat; b) we'll have to be VERY particular about what he does and doesn't eat--no more snack time in nursery at Church, no more sharing our food with him, etc; and c) the only way to tell that he's in pain is when he doesn't eat! Most babies/toddlers will get cranky if something upsets their tummy, but not my little angel! So it'll be hard to tell what foods he is having a bad reaction to.

Having EGE has nothing whatsoever to do with being premature. It's hereditary, which is a little scary. I don't know if I could handle more than one kid with this problem! It's not a fun one to deal with!

------------------------------

Since starting the prednisone four days ago, Caleb:

• Is ridiculously happy--always laughing, bouncing around, and smiling.
• Is EATING FOOD WILLINGLY!! I was worried that his aversion to food had become a learned behavior after all this time, meaning that even if the pain goes away, his brain has a hard time not believing that food is a bad thing, because it's so ingrained in him. (That's where his bi-monthly feeding therapy comes into play.) But, apparently he still wants to eat, which is amazing!
• Is finally, for the first time in his life, hydrated enough to cry more than one tear at a time!
• Already has a runny nose. :/

We are SO happy that we FINALLY know what's going on inside our little guy! It's a huge relief. But it's also hugely scary. This diagnosis will almost certainly haunt him for his entire life, dictating what he eats and how he feels. The poor child has already experienced enough pain! It's hard for a mother to watch, especially when there's not a lot that I can do. However, we are very fortunate to have many caring and knowledgeable doctors and therapists on our side. And a lot of faith and hope on our sides, too. We've been through a lot with our little Cal. It's almost like we were prepared for this. We know it'll be ok. Until then, we have a lot of blessings to count!