Waiting for compassion.

Olivia has been fighting a nasty stomach bug since yesterday morning.  Actually, she had a fever five days ago, with a clear runny nose and some off and on puny-ness ever since.  Maybe it was just allergies or a virus earlier in the week, but the vomiting joined the party yesterday.  Poor baby.  She has been miserable- writhing in pain and not able to get comfortable.  Once she is finally able to vomit, she collapses into a few minutes of somewhat restful sleep, just to wake a few minutes later and start the cycle again.

She's starting to show signs of life this evening.  The vomiting has stopped and she has been singing to a few Yo Gabba Gabba songs and finally eating some saltines.  Hopefully, this horrible bug is losing the battle and will be gone by tomorrow.  My girl needs some relief.

I had already planned to take the day off so we could go to Charlotte for an appointment with Olivia's neurologist.  We called to schedule an appointment back in November after I became more and more convinced that we should push for a 24+ hour EEG.  Olivia had a one-hour sleep EEG a few years ago, which showed no seizure activity, but I really believe we need a longer test to make sure we aren't missing something.  The final push came after reading about Rhema's seizure disorder.  Rhema seems to regress quite a bit, like our girl.

We've had quite a few sleepless nights lately, which made the neuro appointment all the more appealing.  Maybe, just maybe, he'll have an idea for something new to try...

And then there's the whole "autism" diagnosis that has happened since we saw him last.  He specializes in autism, which is why we went to him in the first place.  But Olivia was younger then, and given the fact that she appeared to be affectionate and had few "tantrums", he wasn't willing to attach an autism label to our girl.  Okay.  So be it.  We weren't looking for a label, anyway.  Just a path.

Of course, a lot has happened since then.  More autistic traits, more regression, less typical development.  So, I was anxious to share the autism testing results with Dr. Neuro so we could talk about some biomed interventions.

But, my girl was so sick today.  There was no way we would be loading her up in a car for a one-and-a-half hour trip and wait in a doctor's office.  So, Brian called to see if we could come on to the appointment without her.  After all, she doesn't talk much, you know, so the majority of the conversation is left to Brian and me.

The answer was, "No."  It's "office policy" that the patient must be there and that Dr. Neuro won't see us without her.

That did me in.  After "sleeping" on the floor all night with my miserable girl, and being pinched and scratched by her because she just can't communicate her pain any other way, and after anticipating the possibility that today's appointment would provide us with some plans- only to find out we couldn't go... I was done.  Poke a fork in me. 

I let myself have an ugly cry.  I think Olivia felt a little shortchanged.  Wasn't her momma supposed to be comforting her in her time of need?  Sorry, girlie.  Momma had to have a few minutes for a pity-party.

The more I thought about it, the more angry I became.  Dr. Neuro, no matter his intelligence and experience, doesn't get it.  In the few times we've been in his office, he has been very kind and always has given the impression that he wouldn't give up on helping us solve the mysteries of our girl.  But, today, he let us down.  He has never tried to engage with our daughter.  He looked at her physical characteristics once for a minute, but other than that, she was simply another person in the room with us.  All of the information he's gathered about our girl came from conversations with Brian and me. 

So, again I ask, Why must she be there for today's appointment???  We need guidance.  We need new sleep medication.  We need him to agree to a long EEG.  None of which require my daughter to be in the room. 

The next available appointment is April 25th.  Two more months.  Sometimes it seems all we do is wait. Wait for an available appointment with this specialist, that specialist.  Waiting for this test, for the test results, for her wheelchair, for insurance to approve (or not) therapy and equipment...

Waiting and fighting for what our daughter needs.

We waited for today's appointment, and now we'll wait some more...

I'm praying for patience and strength.  I'm praying for healing for our girl.  And I'm praying that God will lead some hearts to be filled with a bit of compassion.