The Straw that Broke Me...

In the past month or two we've been told that all four children might have mitochondrial disease.  That Pip might have cerebral palsy.  Abel may well be on the autism spectrum.

Big things.  Hard things.  And through it all, there have been some tears, but no break downs.  We've been told we look good.  I honestly haven't known why, apart from the grace of God.

Then the straw came.  The one that broke me.  Yesterday I remembered to check the mail, since I'd forgotten the day before.  In it was the letter from the charter school Mercy attends.  The one that was supposed to say that Gilead was accepted for kindergarten for the 2015-2016 school year.  Only it didn't.  Instead it said he was on the waiting list.

I knew it was a lottery.  However, siblings get drawn before anyone else, and though there are no guarantees, it's pretty much an implied guarantee.  I lost it.  You see, giving up homeschooling was hard for me.  So hard.  It wasn't easy for me to trust God with letting go of Mercy during school hours.  And now, Gilead doesn't have a place in the school that has been such a blessing to us in a really difficult season.  

I took a long nap.  Then I cried.  And once the dam broke, I couldn't plug it back up again.  The river flowed until I fell asleep.  I woke up to tend to a sick Pip at 12:30am, then cried myself to sleep again.

God's grace isn't any less there than it was when I was "standing strong."  But it's different on days like today.  Today I feel the uncertainty of the future.  The pain.  The heartache.  Not knowing where Gilead will go to school.  When Pip will walk.  If Abel is "on the spectrum."  What any of our futures hold.

And I'm so thankful that God doesn't turn away from the tears, but wipes them for me. That we now attend a church in which the pastor wants the congregation to be okay with Abel's meltdowns.  That we are surrounded by gracious people.

Because today, I'm broken, and I can't guarantee when I'll be back together again.

*As an addendum, I was able to get in touch with the school the following day.  After spending the day working on it, they discovered that we were the victims of the one lottery mistake of the year.  One child with the same last name, and a first name just one letter off from Mercy's also entered the lottery, and her letter and Gilead's were inadvertently switched.  He was, indeed, drawn for enrollment this upcoming year.



  

Hope Blooms

We just celebrated Resurrection Sunday.  Easter Sunday.  The hope we have in our risen Savior.  This year I've found particular significance in the holiday.  Nothing about the significance of Christ's work for us has changed, but our lives have.

We've had a lot thrown at us.  A lot of labels.  A lot of potential diagnoses.  A lot of maybes and what ifs regarding our children.

And yet, the reality is this.  These are the same beautiful children we've always had.  The ones that God gave us.  Created in his image. Cherished by him.  Christ died and rose for Mercy, Gilead, Abel, and Pip.  Not for mitochondrial depletion, autism spectrum disorder, sensory processing disorder, FPIES, or mild cerebral palsy.  Those things, or the possibility of those things, are not who they are.

I still cry a lot.  I'm exhausted and confused.  I don't know how to be the best mom to them.  This is hard!  But hope blooms.  It blooms when the child who struggles with empathy pats his baby brother and says "it's okay, we're almost home" when he's crying in the car.  It blooms when Pip takes a whole three ounces from the bottle.  It blooms when Gilead works up the nerve and strength to go down a tunnel slide.

 We have been so loved by the body of Christ.  Our children know that Jesus loves them.  They have no concept that he might not.  

So we keep living each day in hope.  I administer meds.  We go to therapy.  Teach bodies to move properly, go to appointments, and teach little people that Jesus loves them.  That they are created in the image of God--feeding tubes, motor delays, and all.  They are no less a reflection of Him.

Morning medication ritual.

And this year we celebrate our hope in the risen Christ.  We don't deny that life is hard.  It is hard.  But Christ is risen, and He is here.  He is here.  He's alive.  And there's so much hope.

Running on Empty

Pip swinging and feeding with his pump conveniently hanging from a biner clip.  Those clips and command hooks are my new best friends.

Once again time has run away from me.  So much life happening, and so little time for blogging.  Here's a brief rundown...

We took Pip to Salt Lake City at the end of January to see a craniofacial surgeon who specializes in craniosynostosis. His sutures were so tight that he needed a CT to be certain, but we had much rejoicing to do upon learning that Pip does not have cranio! 

Our trip was not without glitches.  It was our first time traveling since Pip's G tube was placed, and I was meticulous about packing everything.   Or so I thought.  It wasn't until we attempted putting Pip to bed after we arrived at the Ronald McDonald House that I realized the one crucial thing that I had forgotten--the charger to Pip's feeding pump.  Panic ensued (5.5 hours is too far to drive back and get it).  It was 10pm, and we've never had to test the length of the charge.  I put out a cry for help via an online support group for parents of G tube babies, and we were amazed by the way friends and total strangers alike pulled together to make sure we had a charger and could feed Pip.

We also got Mercy's EEG results back and she saw a pediatric neurologist.  Another praise.  Mercy does not have epilepsy.  What she has is a motor tick, likely tied to excess dopamine levels in the brain.  There's a 33% chance it will dissipate, 33% it will remain as it is, and 33% it will worsen.  We'll cross that bridge when and if it comes.  Because motor ticks are involuntary, she can't stop it from happening.  We're praying it will simply resolve itself before kids are old enough to give her a hard time about it.

Gilead also turned 5!  Just thought I'd throw that in there, because it's worth celebrating.  I was worried he would feel lost in the midst of Daddy's crazy work schedule and Pip's needs and the like, but he loved everything about his birthday.  He says that being five is "great!  greater than ever!"

Gilead with his "dinosaur land" volcano cake.  The kids were duly impressed by the dry ice.

Pip wore his "party duds" for Gilead's birthday.

This past month the preschool the boys attend talked with me about the possibility that Abel in particular, but likely both of the boys, may have sensory processing disorder.  They've both had thorough evaluations by an occupational therapist, and, as it turns out, many of things we've struggled with with them are sensory related and can be helped.  Such as, why are my children terrified of stairs?  And playground equipment?  Why does Abel freak out every time there's a drop of water on him?  

They might not be climbers, but they love the swings!

In fact, Abel is so far behind in so many areas that he's being referred to a developmental pediatrician for further evaluation.  Because all of our children have had global gross motor delays and some other quirky little things that do not resolve well with time (despite everyone saying they will), genetic testing is also being discussed.  I'm trying not to think about all of that right now.  I'm having to trust God one day, one appointment at a time.

Because the boys were found to have so many developmental delays, they're each in occupational therapy three days a week now, and speech therapy two days a week.  Pip has therapy three days a week.  This is my job now.  I take children to therapy.

Pip is also still struggling with retching and vomiting.  He was started on a new medication, called periactin, a couple of weeks ago.  It's technically an antihistimine, but also acts as an appetite stimulant.  The hope was that if he felt hungrier, his body would handle feedings better.  Once on it, the first thing we noticed was that he was fussy.  So incredibly fussy.  But his oral intake nearly doubled (to 8-12 ounces a day!) and the retching was better.  Therefore we were told to stick it out.  We hit the "sweet spot" for about two days.  The side effects were manageable and his retching was better.  I was so happy!  But then the retching came back.  So the dose is now increased, but his oral intake is still back to the 0-6 ounces per 24 hours it was at before, and he's still retching.  Last night it was all out projectile vomiting.

If the periactin fails, we're out of options, and we'll have to go to a GJ tube.  I keep being told it could be a wonderful thing for him.  My biggest hesitation is the fact that he's already so far behind with his motor development, and wearing that backpack nearly every waking hour isn't going to help.

In the end, I just keep praying that he'll start to take more in orally, and that we'll be able to achieve a baseline, which might require the GJ.  Once we can do that, we can begin down the exciting, yet terrifying road of seeing if there are any foods his little body can tolerate.

We have a minimum of 11 appointments a week now, and Ryan's working long, long days. On my own strength, I'm running on empty.  Thankfully I'm not on my own.  I have no idea what God's weaving through us in these moments, but I know that he is at work.  There isn't a way to figure out why we ended up with three children with special needs.  Three beautiful, smart, exhausting children who have brains and bodies that work a little differently than most.

But I know that He is at work, and in that there is much comfort.  And of course, fuel for the next day.  Or hour, or minute, as the case may be.*

*And please don't read into that that I don't melt down.  Because I do.  A LOT. Like when I cried on the floor of the bathroom at the Ronald McDonald House...

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.

Drowning

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.

Failing to Thrive

It's hard to believe it's been a month since Pip had his G tube placed.  I wish I could say all's been smooth sailing since then.  Pip had a harder time recovering than most, which kept in the hospital an extra day while we got a handle on his pain and nausea.

Once home, we were supposed to be able to give him gravity feeds, in which you put the formula into a 60mL syringe and let it flow into him with the help of gravity, which occurs relatively quickly.  As has been the case, we always offer the bottle first.  He was doing quite a bit of vomiting on the NG tube, but the hope was that that was simply because the NG tube holds the "flaps" that normally close to prevent that sort of thing open.  However, even in the hospital, Pip wasn't handling feeds any faster than 2oz. over 30 minutes via pump delivery system, so we were sent home on 2oz. over 30 minutes every 2 hours.  We were gradually able to increase that to about 3oz. at a rate of 20 minutes.  He still didn't handle a gravity feed.

Pip "eating" his dinner with the family.

However, the vomiting still hasn't stopped.  In fact, last week was really terrible in that department.  We were at the GI again yesterday, where we learned that, once again, he isn't growing.  He's now officially "failure to thrive." We've made some changes to the caloric density of his formula and the delivery rate of his feeds. If we can't get him growing and thriving in the next two weeks, we're looking at a hospital admission.

Getting all cleaned up after vomiting makes everyone feel better.

I realize in this picture he looks fine.  He's a bit thinner than this now, and because he hasn't gained in a long time, his body got smart and stopped gaining length, too, so he still looks pretty good.

If you know me, you know that I struggle with borrowing trouble, and right now I'm having a hard time with that.  If we can't get weight on him, he'll be in the hospital.  I knew something needed to change, but I didn't realize we were to that point.  I'm working so hard, praying so hard, doing everything I can do, and yet we're here.  I have to leave it at the feet of God.  He knows.  He sees. He loves Pip and the rest of us.

The kids have seen me cry a lot.  And pray a lot.  And I'm seeing the fruit of that.  Now, if they see me melting down because the pump is having a problem, or Pip is having a problem, or I'm just utterly exhausted, I often get a hand on the arm from Mercy or Gilead and hear "Mommy, we should pray about that."  From the mouths of babes...

And Pip isn't failing to thrive in every way.  He is making gains in his gross motor skills.  A month ago, this would have been impossible for him.

He's still a long way from "typical" 10.5 month skills like scooting, crawling, or cruising, but for him this is huge, and cause for rejoicing.

So, FPIES continues to be hard.  Really hard.  But God continues to be good.

Be the Voice: Global FPIES Day and No Clear Words.

This month the International FPIES Association and The FPIES Foundation have been counting down to today, October 14th, the first Global FPIES Awareness Day.  Those of us who live with FPIES have been encouraged to "be the voice" of FPIES.

The problem is, I don't feel like I can talk about it coherently enough to be a voice for anything.  I'm tired.  So tired.  When Pip was diagnosed with FPIES at the end of July, I remember thinking "okay, it isn't good, but we'll find an elemental formula that works for him, and we'll be alright."  After all, FPIES is a rare condition as it is, and those who end up needing feeding tubes or other more serious medical intervention are even rarer.

We're there.  On Thursday morning we'll wake up early, check into the hospital, and Pip will have surgery to have a G tube placed.  At this point, we have to walk by faith.  The doctors and other feeding tube parents assure us that once we're past the recovery and the learning curve, the G tube will be much easier than the NG tube has been.  But it's so hard to get past the fact that there will be a hole in my baby's tummy.  He's having surgery.  Not to fix something, but because what he has can't be fixed, and this will allow him to get the nutrition he needs to grow until he can nourish himself.  Until he has safe foods.  Until his feeding aversions have died down enough that he'll allow himself to try foods once it's okay to do so.

I'm worn.  I heard "Worn" by Tenth Avenue North for the first time a couple of months ago.  I heard it again last week and I cried.

Pip smiles a lot.  He charms everyone he comes into contact with.  

But he's also frequently in pain.  He cries.  He doesn't nap.  I don't know what to do to help him.  I've encountered an attitude of "it's just food allergies" from a couple of people at this point.  Pip's "just food allergies" have necessitated surgery and a feeding tube.  He doesn't just have a few food allergies, he has no safe foods.  He's allergic to food.  Food can send him into shock, it causes him to bleed intestinally.  When you have a child with special medical needs, you rapidly gain a new vocabulary.  One of our first new terms was "vomit to shock."  I pray none of you have to experience that with your children.  

We're asked what we need.  How people can help.  The truth is, we feel like we're wading through a fog.  One foot in front of the other.  Walking by faith, not by sight.  We don't have the energy to think about what to say we need.  We need help, and support.  But we don't know how to respond.  Just show up.  Really.  I might cry at you.  Because I'm not brave enough or strong enough for this.  I know that we're still standing and experiencing joy because of Christ and his body.

We've also been asked how to pray.  That's something I've been thinking about.  We've prayed a lot of prayers that are more groanings and mutterings than anything lately.  However, when I think about it, I have come up with a few specific ways you could pray:

Please pray for wisdom for Pip's doctors and medical team.  FPIES is still relatively uncharted territory medically, and there's no standard of care as of yet.  Pray that God would direct them in their care for Pip.

Pray for peace for Ryan and I.  We're having to walk in faith, and I don't know that there's a harder place to do that than with your child.

Pray that we'll be able to invest in Mercy, Gilead and Abel.  This is stressful for all of us, and they're feeling it.  They need us, too, and I find myself feeling like I don't have the capacity to be there for all of them.  I know that I don't.  It's only by God's grace that I can care for them all.

It is also our prayer that others would see Christ in us throughout this process.  Even though we're exhausted and feel at the end of ourselves.  I pray that it is at that end of ourselves that others will see that it is Christ who is sustaining us.