Sunday, August 18, 2013

Breaking my rules - an MSPI/FPIES rant and insight into our world

What rules (you're probably wondering)? The rules that I have for posting are as follows: 1) Never post when emotional or tired and 2) don't use my blog or facebook to rant or complain. Tonight, I'm doing both.

It has been at least two weeks of L crying most of every day - and it's just gotten worse. Over the weekend, he was screaming (blood-curdling screams, mind you) about 1/2 the day, and about 1/4 of the day he was just fussy and clingy (that makes him fussy 3/4 of the time we are at home for those who are terrible at math). My husband and I are losing our minds. Keep in mind, L was extremely colicky for the first year of his life - we've been through all of that. We are approaching the two year mark and are still dealing with this.

Do you know how they break Navy SEALS (according to Parents magazine anyways)? They play a baby crying at a certain decibel. Inconsolable screaming (obviously, it's a recording, there's nothing the SEAL can do) until the SEAL breaks. Listening to a screaming baby/child and being powerless to help them as the screaming continues on and on will mess with a person. Hubby and I are experts at this. And we have reached our breaking point several times just to push through and keep going.

Now normal parents think, okay, Amanda, run through your list! Is he A) sick? B) hungry? C) have an ear infection? D) too hot/cold? E) wet diaper, so on and so forth. Not us - and not the parents of babies with tummy allergies. No, we are thinking @#$*^#@ did he get a crumb off the floor in nursery today? Did he dig up something under our couch I missed with the vacuum cleaner? Did I accidentally give him almond milk instead of coconut milk? Did I give him anything (ANYTHING) different at all?!

Right now, L is constipated, he is crying nonstop, he is exhausted (as are we), he is acting extremely naughty and pushing his limits when he's not crying (I believe this is to bring attention to his pain); and we are at our wit's end. I have run through his safe food list about a million times today. I have no idea what is causing this reaction - other than he got something I missed off the floor or something else is building up in his system that he shouldn't have.

When he is distracted or outside, he is generally a different kid - it distracts him from the pain and makes him ok for awhile. But when we're inside (let's face it, I can't distract him all day every day, I still have stuff to do) he's miserable - he wants to be held, he wants to be put down, he wants to just scream and throw things and throw himself on the floor.

The worst part out of all of this? He won't eat. You've seen my blog posts about the different recipes I make for him - I try it all! Every day I cook and cook and create and cook and experiment - and all he wants is goats milk (which is his main source of protein, so that's ok mostly) and crackers - and sometimes no crackers! It has gotten to the point where if I even start to do dishes he freaks out because it means I'm back in the kitchen and I'm there all the time - he hates it.

I prayed for a healthy and strong baby. L is definitely strong (I think everyone who knows him knows this) and his health could definitely be worse. I am so thankful every day that the Lord entrusted L to us. I remember how empty I felt before he came along and praying/praying/praying for a baby. I remind myself of this every time L is in pain, is crying and/or screaming, is lashing out to get attention because of his tummy; every time my heart stops when I see him double over and start to get hiccups which is an indicator he's about to have a reaction. Every time it's 2 am and he starts screaming and I get that sick feeling in the pit of my stomach.

We are blessed and I know it. We are trying to treasure this time we do have with him at this age - but it is hard. It is HARD. I can't help but look forward to the day where he can tell me what's wrong, where I can bring him places and not worry about him picking up some other kid's leftover goldfish cracker. When we can go to a restaurant and order for him, or treat  him by flagging down a passing ice cream truck (that's a foreign thought!).

But until then, we will keep trucking along. Smiling politely and thanking other parents for their advice on how to deal with a picky eater. And we will keep praying that God will somehow use this - maybe to help another family with food allergies!

-Amanda <3

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