Friday, June 26, 2015

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.

Friday, June 12, 2015

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!