Friday, September 6, 2013

The Answer We Didn't Want

So, I know that I still haven't posted about the couple days we spent with my brother's family, but I feel like I have to get this out of the way first, since it's occupying the vast majority of my thoughts and energy right now.  And honestly, I think I posted on this blog once upon a time that I didn't want this blog to ever have a "thing".  I didn't want it to have some overarching theme that pertains to some sort of hardship we're enduring.  So many of the blogs out there have something like that--where the blog is mostly focused on a kid's illness or a family overcoming some huge obstacle.  I never wanted this place to turn into that, because I just like my happy, random blog where I keep everyone up to date on our family and vent occasionally when something is bugging me.  But now I may not have a choice.  If Jacob's issues weren't enough, now my sweet, perfect baby boy has some pretty daunting issues of his own.  On Tuesday night, I finally figured out what was causing Carter's random bouts of projectile vomiting last week. 

It happened again on Tuesday night, and I realized then that it was an allergy to rice cereal.  He'd been fine all weekend without it, and a couple hours after having it again, his night bottle came right back up.  Pretty much all of it, as Craig was soaked.  Poor kid...and poor Daddy.  Rice allergies are pretty rare, hence why babies start with rice cereal, but it's not unheard of.  It even has a name--FPIES (Food Protein Induced Enterocolitis Syndrome).  The body simply rejects the food about two hours after it is ingested.  Carter's vomiting episodes were brief, thankfully--one round of it and he was done.  The first three times he was smiling and happy two seconds after it happened.  The last one he cried a lot, but I don't know if that was from discomfort or if Craig's total freakout (can't say I blame him--it was pretty bad) scared him.  Some kids, however, will vomit for hours on end, eventually getting dehydrated and needing an ER visit.  Some even go into shock.

The more I read about it, the more intimidated I become.  Some kids only have one or two triggers, but some have a lot.  There isn't real testing for it, so in the end it is all trial and error.  Each new food means you're at risk for making your kid projectile vomit.  And as with our experience, sometimes it takes a while for a reaction to occur.  We had a week without incident, and then the problems started.  All of the usual baby foods are known triggers.  Dairy and soy are the most popular, followed by rice and oats.  It's hard to say if dairy is a trigger for Carter, since his formula is still sort of milk based but the proteins are broken down.  Obviously he had a sensitivity to the milk protein in my breastmilk, but from what I'm reading, that is sort of a separate issue as kids don't normally react to trigger foods via breastmilk--only direct ingestion.  He seems to be at a good place with his formula--even the spitting up has subsided a bit, it seems.  But I have no idea if trying real milk down the road will make things worse.  We could try oatmeal instead of rice cereal, but given that it is a common trigger, I'm hesitant.  Many of the first fruits and vegetables also cause issues, but again, we won't know until we try them.  And right now, the thought of that is very daunting.

There are two spots of good news, though.  First, most kids outgrow it by about 3.  So...we have about 2-1/2 tough years ahead but hopefully beyond that he could be a normal kid.  Of course, there's always the possibility that he'll have food allergies, but I don't think this is directly related to that, so I suppose that risk is there either way.  The other good news is that this is not a food allergy as most people know it.  This is not a situation where he could have a serious anaphylactic reaction to a trigger food.  He's not going to get hives or have his airway close.  The danger lies in the severity of the vomiting--dehydration, possible shock, and I suppose the risk of him choking on it, as well.  I read one story where a couple saw their kid vomit over their video monitor and were able to get to him in time when he stopped breathing as a result.  Even still, I'd have to think the overall risk is considerably less than the risk of, say, what could happen with a peanut allergy.   

Still, I'm pretty down right now.  That's an understatement, actually.  Between Jacob's problems, Carter's problems, pending open heart surgery for Craig's dad (which will impact our trip to Disney one way or another), and just trying to manage the needs of my family, my house, and my job, I am feeling intense stress right now.  I realized the other day that we have five doctor's appointments between now and when we're supposed to leave for Disney in less than two weeks.  That is crazy.  Carter has a well visit and an appointment with the pulmonary specialist as a follow-up to his upper GI/chronic cough/reflux issue (which seems laughable at this point).  Jacob has another appointment with the therapist, and we have a separate one to talk to her alone.  I also have my OB/GYN appointment--just a routine six-month follow-up.  That is a lot.  I still haven't figured out how to make up all of the time at work. 

I've pretty much been on the verge of tears for the last two weeks straight, and my focus is crap.  I'm having a lot of trouble finding joy in my days, since everything with Jacob is a struggle, and now when I look at my usual bright light, Carter, I mostly see a little boy who's got a long road ahead of him.  He'll smile, and while I can't help but smile back, all I can think about is how sad it is that he's going go through so much in the next couple years.  Both kids' issues are so long term, and it's disheartening to know that we're not going to have much semblance of normal for a long time, both for them and for my experience as a parent.  I'm jealous of people who get to have "normal" kids...ones that don't need specialists and don't have any significant issues encroaching on their happy little life.  I love them both so much, but for everyone's sake I just wish we had a little more fun around us these days.  That sort of lighthearted joy has been missing for a while, though I don't think I really realized it until the past couple days when I've been really down.  The simplest of things is just hard right now.  We have two kids with a boatload of issues, and it just seems unfair all around.  I know life isn't fair, and I knew parenthood wouldn't be easy, but I never thought it would be like this.  I just never wanted the everyday joys in life to be shrouded by a dark cloud that it's hard to see past.  Life is too short for that, but right now I'm just not sure how to get past it.  It's been about three weeks where I just feel like I'm living in an alternate reality, but no...this is it.  This is our new reality.  And it's going to be hard. 

I know we can't give up or walk away, but I've had a lot of moments where I simply don't know what to do.  I don't feel like I have the energy or time to figure everything out or attend to everyone's needs.  I've spent more evenings than I'd like to admit over the past few weeks Googling symptoms and names of disorders.  I'm up way too late because I have things to get done and yet still want a little time for myself, and there just aren't enough hours in the day.  I get too little sleep, wake up exhausted, and have to do it all over again.  I feel like the balance in my life is all off, and I just don't have a choice right now.  And now we add all of this to it and it's hard to stay positive.  I've had a couple mornings this week where the right (wrong?) song comes on the radio at the right (wrong?) time and gets me all emotional in the middle of my commute.  The songs have been a good reminder that we have no choice but to get on our knees before God and pray our way through this.  My spiritual life has not been what it should be (see constant exhaustion above), but now we may not have a choice if we want to stay sane through all of this.  There has to be a purpose for all of this, right? 

We have a lot of challenges ahead of us.  I'm a little overwhelmed right now, so bear with me if I tend to vent a lot here for a while.  I don't want to focus on this stuff, really, but obviously this blog is about our lives and that's a big part of it.  But I definitely don't want to lose sight of the good moments we do have, so I'm going to do my best to keep some of that, too.  Keep us in your prayers.  We definitely need them...all of us.

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