Monday, January 5, 2015


There have been so many things I've wanted to write about, but I literally haven't had the time.  Now I've hit a point at which it almost feels like there's no point in trying, I'm so far behind.

As Christians, we know that we're blessed.  That God has bestowed so much grace upon us.  However, at least I have always felt pressure to not allow myself to express myself as anything other than thankful.  Anything less is lack of spirituality.  I am thankful for all of the help and kindness that have been bestowed upon us.  So thankful.  But then there's this:

I'm still drowning.

We can't get Pip's retching and vomiting under control.  Then, on Christmas, the kids came down with a terrible respiratory bug.  Mercy's turned into pneumonia, Abel's into double ear infections, and Pip's into croup so nasty that he required two rounds of steroids and epinephrine.  We made two trips to the emergency room, two to the pediatrician, and still have 13 appointments on the calendar for the remainder of the month--and that's just for maintaining Pip.

And maintaining him is a lot of time and energy.  He looks great, but it takes a lot to keep him that way.  Last week I came home with the kids from yet another doctor's appointment and it was naptime.  Pip had fallen asleep in the car, so I put him straight to bed.  But it was also time for his feeding.  After getting the others down I sneaked into his room to administer meds and hook him up for a slow feeding while he slept.  It was a moment that struck me hard.  This isn't normal.

With the kids all having been so sick, and Pip fighting croup and his usual battles, we've been getting about 4 hours of sleep a night.  It's almost like living in a dream.

My house has never been so consistently messy, our meals have never been so haphazard.  I have moments in which I feel like I'm going to burst with panicky feelings, and I can't really even identify them.  There's the physical work and exhaustion, but there's also the weariness that comes from feeling so utterly helpless.  Having a child who is uncomfortable or in pain, and being unable to help him.  Dreading feeding him, because he inevitably gets nauseated and at least retches, if not vomits.  And despite doing my best, everything I can, he's still miserable.  

He cries "mama" between retches, and all I can do is hold him.  And then, a couple of hours later, we repeat the process.  It hurts.  And yes, it brings on feelings of hopelessness and despair.

We're also about to have to start discussing changes in formula and food trials, which strikes fear into my heart.  If he's this sick exclusively on elemental formula, do we dare risk making it worse?

Living in the Northwest is hard when you have a child with FPIES.  Nearly all of the specialists are on the east coast.  We're hours from the nearest one.  I don't know how we would manage a trip to see one of them, but I'm seriously starting to toy with the idea.  Our doctors are great, but everyone seems to be running out of ideas.

Please pray for health for Pip.  For sleep for all of us.  And for hope.  When he was diagnosed with FPIES we knew it wouldn't be easy, but we had no way of knowing how incredibly hard this road would be.

Our four amazing children at Christmas.  Pip's older siblings love him dearly, and are learning so much empathy and compassion.

No comments:

Post a Comment