Periventricular Leukomalacia

Since our last update Pip had an MRI of his brain.  We were told that, if it was normal, we wouldn't hear anything, and we'd go back to see the neurologist in July.  If there was anything to report, the neurologist would call.

She called the next day.

It was a very confusing call.  According to the radiologist, Pip has something called periventricular leukomalacia (PVL), which is damage to the white matter of the brain.  It's typically seen in premature infants or infants who sustained brain injury during delivery.  Neither is true of Pip.  Therefore, the neurologist is holding out hope that his brain might be slow to myelinate.  But the question is, why?

I felt like I had to pull information out of her.  If it is, indeed PVL, then he has cerebral palsy.  If not, it's still unkown.  We were sent to the physiatrist, who said Pip's outside his range of specialty, and referred us to genetics.

In the meantime, we have an appointment set up to go to Seattle Children's to see a neurologist who specializes in mitochondrial myopathy in August.

Pip feeding while swimming on a summer day.

Thanks to having therapy three days a week, Pip's motor skills are improving.  It's looking he's going to beat the predictions for when he'll walk, which is amazing.  He's now pulling up to stand and cruising the furniture.  He'll be 18 months on July 1st.  Of course, this didn't happen in a vacuum, it's been work--lots and lots of hard work.  But it does muddy the water for those who haven't seen the work.  We're learning it's going to make getting coverage for his needs more difficult since he's now teetering on the edge of being developmentally delayed enough and medically fragile enough for Katie Beckett medicaid.  It's a very expensive and very uncertain place to be.  We have a feeding tube, abnormalities on a brain MRI, multiple therapies a week.  We're finally making progress, and that progress makes a diagnosis and insurance coverage that much harder.  If we get a diagnosis, the coverage should follow.

I'm ready for the roller coaster to stop.  I'm having a harder and harder time just breathing.  For those who haven't been on the special needs end, managing the paperwork, services, and coverage is a mess.  Not to mention showing up for the appointments, following through at home, and keeping up with the other kids.  It goes so far beyond the physical exhaustion into an emotional exhaustion that I've never known.

We're praying for answers soon, and that if we don't get them, peace in the knowledge that God will provide the resources to meet Pip's needs financially and otherwise.

Mercy had a Birthday!

Sometimes the normal happy things of life seem to get lost in the noise.  Though hard things are happening, so are wonderful things.  Among them is this:

Mercy turned seven!

How did that happen?  This sweet girl wanted a garden for her birthday.

A lot has happened this past year, and we've seen Mercy grow in so many ways.  She's a fun, sweet, silly, garden loving, people loving girl.  We're so thankful God gave her to us!

Gardening!

I didn't think I would garden this year.  After all, where would the time come from?  And since we moved last summer, we would have to start from scratch.  However, after I did some planting in the front, I remembered how therapeutic getting my hands in the dirt is, and decided to go for it.  Not to mention how wonderful all of the home grown produce is.

Then I began to stress out.  Ryan's work schedule is crazy winter and spring.  Really, really crazy.  I don't have time for laundry, let alone setting up gardens.  And we're sick.  I didn't feel like setting up gardens, but we had to, because the window for planting is closing fast.  Therefore, sick or not, we got it done this weekend.  I can't talk, I can't breathe, and I'm coughing up a storm, but thanks to my husband's encouragement, we got through it.

I found the boxes for a steal on Craigslist, and the trellises are inspired by Pinterest, but in the end, are of our own design (not that someone else doesn't have one just like it, but I haven't seen them if they do).  I'm so excited, and so glad we got it done!  We just need to add a bit more soil, and we'll plant!  Hopefully they'll all be planted by the end of the week.

We also bought a praying mantis egg sack.  It's supposed to contain 100-200 praying mantis eggs that will hatch in 2-3 weeks and help control bugs.  Hurray for chemical free pest control!  And it's just cool.

They're incubating in this paper bag on the kitchen window sill.  Once they hatch we'll take them out and sprinkle them on the garden and landscaping out front.

I'm learning that, although, as a mother of four children, there isn't enough time to do everything, as the mom of children with special needs, it's even more intense.  Setting up the gardens pressured me even more, but I'm hoping that planting and harvesting will provide a much needed outlet when the stress starts to overwhelm me.

Special or Not?

Today was hard.  A day in which I scrolled through the contacts on my phone, looking for someone to cry to, but everyone I would have felt comfortable doing that with was either working or busy with their own crises, so I turned it off.

Where we're at is a lonely place sometimes.  Or a lot of times.  Something I struggle with probably sounds ridiculous, but it's this.  Do my kids (Pip, and possible Abel) have special needs, or not?  Both parties, parents of typical kids and parents of special needs kids seem to think they look too good to fall into the special needs camp.  Maybe they do?

We hear how great Pip looks all the time.  

"He just looks so healthy!"  

"I can't believe how great he looks!"  

"So, he's not walking.  He just needs some more time."

Maybe I should take how great he looks as a compliment.  A tribute to how well we're doing with a difficult situation?  But how it feels?  If feels like it shouldn't be hard.  Like my exhaustion isn't legitimate.  Like the the fact that he has FPIES, takes in very little orally, and probably has cerebral palsy is completely irrelevant.

He does look healthy and wonderful.  Thanks to lots of prayer, energy, elemental formula, and a piece of silicone that's surgically implanted in his abdomen.  And he does need more time before he walks.  He isn't ready.  He just started crawling, and that takes lots of thought and energy for him.  He needs time--and more therapy.

And Abel.  Abel had a CT this morning of his sinuses.  It's thought that he may have inherited my structural abnormalities.  He was terrified.  So terrified.  His little body was literally shaking as he was finally forced into laying down once it became obvious he couldn't be talked into it.  They had me lay down on top of him and look at me.  I kept saying "look at me, Abel.  Look at me in my eyes."  Only Abel has a hard time doing that in the best of times.  He was trying.  Oh, he was trying.  But his eyes were everywhere.  He was trying so hard that his jaw was moving with the effort, so I eventually had to hold his chin, too.  He looked like a caged animal.  When it was finally over, and he was told he was all done he dissolved into uncontrollable sobs. 

Then later, I watched him "color" side by side with a much younger three year old.  She stayed between the lines and grasped her crayon close to properly.  I've seen children Pip's age hold the crayon better than Abel can.

I waver between feeling like I've failed miserably for not being able to get this child to focus long enough to actually hear what I'm saying and follow through, and feeling like I've failed miserably because something in his brain seems to causing his world to be overwhelming ALL THE TIME, and why can't I do something to help him with that?  Then I get overwhelmed by him, and we both end up in a puddle of tears.  We'll likely find out next month if he's actually on the autism spectrum.

We're too normal to be special needs.  Too healthy.  We look too good.  I hear how well I'm holding up all the time.  But am I?  I feel like I'm floating in my own world.  Someone else must be here, too.  But I sure wish that that someone's world would intersect with mine.

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...