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.

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