Sometimes Mr. Sandman's Name is "Versed"

I swear, I love to write in this blog, but jeepers life is just throwing me all kinds of curve balls these past couple of weeks.  One of my recent facebook statuses was simply, "Pray for a boring life."

In a brief recap (because it appears I missed last week all together!), therapy sessions were not that hot.  Nea had a late night wake up/party on Tuesday night and she slept through Wednesday's OT appointment. If you are reading this and have a kid on the spectrum with SPD (sensory processing disorder) you understand all of this.  If you are reading this and you think the sleep issue is not really an issue, I invite you to spend a week at our house.

So because she missed OT, she really wasn't super prepared for Speech Therapy.   It was a quick lesson in how important OT plays in her life and how it allows her to focus.  So much of the time spent in speech was with Nea fussing, crying, arching her back, slamming her hand on the table, and screaming.  It wasn't pretty.  Finally Diana just scooped her up and held her to try and settle her.  Eventually, the session just ended early because Nea was in such a state. Developmental therapy at home a couple days later wasn't that great either, as Nea just fell asleep in the middle of the session.

The sleep thing is a real issue.  Getting to sleep is one thing, staying asleep is another.  Nea is not a neurotypical kid, her neuro system doesn't work the same.  Sleep cycles are often interrupted, it's a constant balancing act her Poppa and I try to figure out.  Work her hard, play her hard and hopefully she'll sleep hard.  However, that backfires sometimes and she's so over-exhausted that her body seems to wake her up more.  It's a never ending cycle we try to figure out.

We just ordered her a weighted blanket as we are hearing good results from other parents.  The blanket provides constant sensory input to her brain which allows it to relax....and stay relaxed.

And then we were handed a whole new set of challenges.

I won't go into a lot of detail here regarding this most recent diagnosis.  Mostly because I plan for Nea to read this one day and I'm afraid she might be mortified if I disclosed a bunch of information.  The short story is that it seems Nea is entering puberty and we have to figure out why.

Last Spring when I noticed a few signs, I discussed with her pediatrician.  She sent us on to the pediatric endocrinologist.  The endocrinologist did some prelim lab work and a bone scan.  All turned out to be okay.  She told us to stop using lavender products.  (Ack!  We had soap, lotion, shampoo, the works!) and to follow up in 3-4 months.  We did the follow up last week and some symptoms had disappeared, but some were still present.  So the doctor admitted as an outpatient last Friday for Leuprolide stimulation testing.  She received an injection of a hormone and then she had lab draws every hour for 3 hours.

It was a long day, to say the least.

The results came back showing that it looks like her pituitary gland is trying to "turn on" and secreting hormones inappropriately.  Perhaps there is something aggravating the gland and the doctor wants to see what the pituitary gland looks like.

MRI, with sedation.

The process is she gets checked in, she gets an oral sleepy medicine, she's taken to a treatment room for an IV start, she's taken to the MRI suite where they will sedate her fully.  She's monitored by a nurse and a physician through the entire MRI study.

This is what I do every day, sedate kids for procedures.  And I've watched many neurotypical kids struggle with sedation.  Once the drugs are given, I describe it as "going down the rabbit hole."  It can be scary, pretty freaky and downright awful.  And coming "up from the rabbit hole" is sometimes just as confusing and scary.  Now, imagine that X 10.

I've tried to put as many parameters in place as possible for a successful day tomorrow.  I spoke at length with the Child Life Specialist about ideas of toys she likes for distractions.  I brainstormed ideas with "A" her OT as well and we came up with a plan....
1)  OT session the same morning as the MRI  to get her grounded and relaxed (she worked us in)
2)  Use of weights during the IV start as well as when going to sleep.
3)  Put her in the bean bag chair in recovery so she wakes up in it, as well as using a weighted cover on her legs.

I'm hoping that these things allow for a smooth experience and a smooth sedation process.  Sometimes autistic kids don't sedate easily and they have to have anesthesia anyway.  I would rather avoid that if we can and stick with the sedation.

Send us some love and prayers tomorrow!  We'll take them!