Ohhhh, it was just one of those days. Two days really.
It all started with Wednesday which was Bup's Neuro appt with Dr. B....just our regular Neurologist. Whom I adore. He's heartsy and kind and gets R and is open and smart and all those great doc characteristics that we pray for.
Buuuut why did the bells in my head ring when Nurse Neuro almost apologetically advised that Dr.B has a Resident with him.
Ding! Ding! Ding! Ding!
For whom the bell tolls.
Our appointment started at 130 and it was 345 when it finished. Both Bup and I were so tired. Thank goodness I had a squishy ball with "worms" inside for us to play catch with.
And Mr. Resident's assessment skills were ridiculous. Really. Asking R if he knew where he was. What building are you in? Give me a break! This is a child who only shrugs his shoulders at people he knows if they get too close and ask too much.....let alone a fuzzy faced, hootspa pronouncing pretend Dr.
Finally sweet Dr. B was beckoned and we could get down to business.
No seizure was captured during the EEG.
He is spiking on the borders of removal areas.
Meds were upped as much as they could be which is only a ml of Trileptal. The meds are BARELY holding the seizures at bay. If I am 30 min late with his morning meds....and it happens sometimes.....he has a seizure by 10am. Clock work.
Dr. B doesn't want to bring him in for a VEEG yet because he has been through so much lately soooooooo.....we wait until June for a MRI and VEEG with no meds.
That was Wednesday.
Lurking in my email was a glimpse of the PT assessment results. Scored in the 1st percentile. Severe Gross Motor delay.
So, that was just ONE-MORE-THING.
Then Thursday arrived & for some reason, I lost it when talking to the director of his preschool about the PT assessment. Just started blubbering and it totally took me off guard. Poor lady. I scared the pants off her because I have never shown that kind of emotion in front of the school team. I ended that phone call in a hurry...but not before politely refusing to come see her that morning.
Well, wouldn't you know that Ms. Director (whom I adore) set up a meeting for me with the PT, Speech Path, President of IFK, and a Psychologist. Now what does that tell you?
They were alarmed! Me...blubbering on the phone....look what kind of action/fall out that brought! Lord...(my eyes are rolling into my head as I write this!)
The psychologist? She's for me. Not Bup. Every Friday morning we are now meeting.
If I wasn't so embarrassed I would laugh hysterically.
My interblogging, seizure sharing friend recently wrote a post in regards to "a good cry". Well, Happy's Mommy, apparently I needed one, didn't recognize that and it snuck up on me. Cause when I met with the team Fri morning....I bawled through that too.
At least they laughed when I declined the offer of coffee and requested vodka instead. Ahhhh....they already think I'm nuts hence the Psychologist so I might as well bring booze and humor into the picture.
If my next post is from the Mental Health Unit at PLC, then please note that the booze injection was not seen as funny! ;)