Tuesday, January 20, 2015

Mildly Complex

This past week has been full.  Yes, busy full.  But more full in the "I can't process all of these emotions without exploding or completely shutting down" kind of full.  However, that isn't an option when you have so many little people depending on you, so by God's grace, we keep going.

To rewind a little, at 9 months, Pip's physical therapist was concerned that his soft spots were closing too soon.  However, his pediatrician wasn't concerned, and after doing some asking around, his therapist felt better, too, so the subject was dropped.  I never thought about it again.  Then, all of a sudden, not quite two weeks ago, it seems that everyone became concerned about his head shape all at the same time.

Pip may, in addition to FPIES, have a condition called craniosynostosis, in which the plates that make the skull fuse prematurely.  This causes abnormal head shape, and can also cause intracranial pressure, which could explain the vomiting and retching we can't get under control as well as his gross motor delays.  The fix for craniosynostosis is major craniofacial surgery.  We're talking 8 hour, ear to ear scar, kind of head surgery.  It makes my mommy heart panic to think about it.  I swing back and forth between convincing myself that it's so rare that surely he doesn't have it, and nearly panicking because he must surely have it.

That "bubble" at his forhead is called frontal bossing, and can be a sign of craniosynostosis.

Ridging at what might possibly be fused sutures at the back of his head.

Pip's GI wants us to change pediatrician's to an office that used to dealing with more kids with complex needs.  And yet, in the realm of complex kids, he's mild.  Which leaves me feeling really conflicted.  I have typical children, so I can tell you that he's a lot more physical work and emotionally exhausting that most children, but I also know that there are parents who deal with much, much more on a daily basis.  So I feel by turns overwhelmed and inadequate and then guilty about it.

We're waiting to further address Pip's continued retching and vomiting until cranial/neurological problems have been ruled out as the cause.  So for now, we're waiting on those results.

Pip did have a great weekend before the vomiting and retching started back up again on Sunday night, and we enjoyed that so, so much.  Then, last night he was up almost every hour.  Sleep is scarce here these days.

In the meantime, our Mercy girl began having some odd eye behavior that continued to worsen.  I meant to contact her teacher to ask her to keep an eye open for it, but her teacher beat me to it by contacting me to let me know she was concerned.  I was able to film Mercy's eyes as they repeatedly rolled up and back into her head and show it to the doctor.  The hope is that it's a tick that will go away in a few weeks.  However, it may be seizures, so she has an EEG scheduled on Friday.  We have to keep her up two hours past her bedtime and wake her up two hours early before the morning of the test.  She's going to be one tired girl.  The following Friday she has an appointment with the neurologist.

The physical exhaustion is a lot to deal with, but the emotional exhaustion is much, much worse.  Not knowing is hard.  I want to talk about it, and I don't want to talk about.  Pip might have craniosynostosis.  He might need major craniofacial surgery.  He might need to move to a GJ tube.  Mercy might be having seizures.  Epilepsy is a scary word.  We don't know yet.  Waiting, and resting in the Lord is hard.

If you ask us what we need, expect us to say "I don't know."  Because I don't know.  I can't really think beyond the next thing. The next appointment, school pick ups, the next meal.  You might catch us in a smooth day, and wonder what the deal is.  I think about that a lot, too.  

If nothing else, please remember to pray for us.  People say they don't know how we do it, and I believe the prayers of God's people are big part of what keeps us going.

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.