A simple Hello

Have you ever been to a Pediatric Rehab department?  I'm telling you the place is just nothing short of being a really cool place.  They do such a fantastic job at making all the hard work, seem just like playtime.

The energy is palpable the moment you walk in the door.  The receptionist always greets Nea with a smile and a hello.  If Nea smiles back or says hi....the receptionist makes a positive comment.

"You said hello to me today!  Thank you!"

Now she may not know that we are working on social skills and greeting people, or heck, maybe she does.  But she makes sure that Nea understands, "hey, I know you stepped outside of your comfort zone"  As a parent, that means a lot to me.  When the therapists  (OT, PT and SLP's) come out to get kids for their appointment times she greets the kid first of course.  But if anyone else notices her or comes towards her she notices them as well.  I've watched therapists get down to eye level and make sure to say hello to kids.  Nothing goes un-noticed there.  If a kid walks towards the fish tank to check it out...something is said. In short, every kid gets special attention and recognition for just participating in "waiting room" social life.

Nea must have really felt it today.  We were sitting and waiting for "A" to come out and get her.  Nea picked up a book and brought it over to me.  She's still not into "reading" but she does like to talk about the book and turn the pages.  That's serious improvement from where we were a few weeks ago!  As we are moving through the book, a little boy walked over to us.  Nea was standing in front of me and I was holding the book in my lap so she could see.  This cherub faced boy became involved in the story as well, and he wanted to help turn the pages.  His mom was shocked that he come over to us (complete strangers) in the first place and I was shocked that Nea stopped what she was doing and looked at him.  Finally she reached her hand out to his face, and touched it gently, saying, "Baybee"  He smiled, and reached towards her chest to touch a pumpkin picture that was on her shirt.

And immediately 2 Moms were just about in tears.

I don't know this boy, I've never seen this boy before and I have no idea what needs  he has that would bring him into Pedi Rehab.    But for whatever reason these 2 kids made a connection.  (Also, this "baby" was around Nea's age.  I think she's just calling other children "baby" when she sees them.)  I was so proud of my girl for acknowledging another kid her age, reaching out to say hello in her own special way and allowing him to reciprocate.  In my eyes, we didn't need to do any therapy!  We had success in the waiting room alone!

OT gets harder as Nea makes progress.  She is tolerating everything so well.  And therapy works in a way that when you get comfortable with one thing....we move you right along to the next.

Her speech therapy session was interesting today as I was able to watch Nea's 2 y/o-ness vs her Autism.  She was whiney at times with Diana, but without a doubt it was a total fake.  She even shot Diana a couple grins along the way!  Oh, whatever, child!  She was also able to do some computer work today.  I love this picture so much because I love how comfortable she is with Diana.

Overall on this brisk fall morning, we had a good day at therapy.  Progress is still being made, success is still at our fingertips.

The MRI Day

I can never express enough how grateful I am for the people in Nea's life.  We have been so blessed to have come across such amazing people who work tirelessly for her.  I know people say things like "you're an amazing Mama" and "what a great parent" and I appreciate the compliments.  However, I'm just Mom and I do the things I do because I love my daughter unconditionally. But there are real heroes in my child's life, and for that I have not enough words of thanks.

It's an interesting set of fear and emotions when your child is undergoing some sort of high risk procedure.  It's even more interesting when that procedure is done at the place you work every single day.  And it really is extraordinarily interesting when said procedure will be done in the department you work in and the people you work with side by side.

Believe me, I was scared.

I wasn't scared of the team.  I trusted the doctor, the nurses, the child life specialist,  the MRI techs, etc. in the whole process.  The problem is I knew too much and it was hard stopping my mind from jumping from A to Z.  The bottom line is we make sedation procedures very safe.  We monitor children very closely.  We have lots of expertise, knowledge and emergency training.  We put safeguards in place constantly.  But, things can still happen. Just because we read "the book", doesn't mean the kids do.

Nea's OT worked us in for an early therapy session prior to the MRI.  She put her in the swing, she put her in the ball pit, she pulled her around on the scooter.  Nea was very chilled by the time we left.  She also was hungry!  However, she couldn't have anything to eat and drink until her sedation procedure was over.

So what do you do with a hungry 2 y/o who you can't feed and you have 90 min to kill?

You take her to the park!!

When you take your kid to a hospital that focuses on kids....it makes all the difference.  When we were in the waiting room, the receptionist gave Nea a purple backpack of fun stuff like crayons, hand shakers, coloring books, etc.  It was the perfect distraction while I filled out paperwork!

Waiting to do the MRI

One of the kiddos that had just had his test done and now awake, came into the room with his parents.  He was really upset and crying.  Nea stopped her coloring and looked at him for a long while.  I explained to her that he was really sad but his Mamma and Poppa were helping him feel better.  She kept watching and finally said..."uhmm...its okay"

Wow.

We were taken to the prep room where Nea was checked over, vital signs done (she did great!), and the doc came to talk to me.  Admittedly, it's really kinda funny because the doc and I work closely together all the time and teach families about procedural sedation.  I let her off the hook and told her I didn't need the full 20min lesson. :-)

Versed is a great drug.  It makes you sleepy, pretty loopy and downright happy to be on the planet.  It also has an amazing side effect of amnesia.  So even if things became unpleasant for Nea, she would never remember.  Why is that important?  It's important (and not just for her, but for every kid) that she is able to build positive experiences.  It's important that she has a trusting relationship with medical staff and that she not fear them.  We CAN make things pleasant for kids, and it's the right thing to do.  We have numbing lotion for IV starts, we let Mom or Dad hold a kid during an IV start or even putting in a catheter.  We can do some pretty cool stuff for kids, so that they have positive experiences.

Enter the Child Life Specialist.

It's an amazing profession.  Google it and understand who these people are and what they do.  In short, they make sure that kids are allowed to be kids and they are not overwhelmed.  They advocate for them so they minimize pain and fear.  They teach kids about their diagnosis in a language they understand.  And they make sure that trust is built.

Nea's IV was started relatively easily, and she went with one of the nurses to the MRI suite.  No tears, no fear, just snuggled right into her as she carried her into the room.  (Thanks Versed!).

I slipped back into the waiting room while they began sedating her.  I'm told she did well, no problems with sedation and went right to sleep.  The Child Life Specialist even told me, "She sighed deeply.....and drifted off."  My guess is that as the medication hit her system, it probably made her feel very heavy and that probably felt very good to her.

The scan was completed in an hour.  The Child Life Specialist and I had come up with a plan for waking up so that it was not scary and not stressful.  The bean bag, the weighted lead apron on her waist and legs, her own special blankie, and her paci.'s (one to chew and one to hold).

She woke up like no kid I've ever seen.  It was like she was waking up from a really nice nap.

Bean bag with lead apron

So, in recap Nea's day looked  like this to her......

"I saw my friend "A" and her cool play toys.  I went to the park for some fun with Mamma.  I met new people at Mamma's work.  The nice lady let me play with her iPad (must tell Poppa about that new app.).  The other nice lady let me snuggle with her (I was kinda sleepy).  I took a long nap.  I was able to get a wagon ride.  We came home and I ate fries."

Ernie was "the chosen one" for this experience

It was an amazing day.

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!