Wednesday, March 4, 2015

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...

1 comment:

  1. Love you. Thanks for the update. Praying you continue to keep that perspective. <3