Monday, February 21, 2011

Seldom a Tired Temper…

I spent a bit of today (and Friday) battling the urge to drive down to the TCH main campus and find the neurology nurse hangout/call center and then choke them with my bare hands. That’s right, fighting physical rage over my fantastic luck every time I use that damn non-emergency voice mail box…the one which reassures you that someone will call you back with in 24 hours. Pfffffttt.

Did I mention today is a holiday anyways? No sense in getting the Honda rolling down the road for a no nurse station full of assholes scenario. Did I mention that I am one of the most tolerant people I know?

To make a long story short…a couple of weeks ago we showed up for our appointment with neurology that TCH had contacted us to schedule since our old neurologist has resigned; only to discover the neurologist we were visiting with specialized in strokes…she said to me, ‘sounds like you know more about benzo’s than I, your daughter needs to be seen by Dr Benke.’ 

At least it’s the name of the correct Dr and a back door to a quicker appointment, hopefully. I have been told he also has adults referred to him so I am mentally preparing to pack my patience. I hope it’s worth the wait.  I also know Dr Sabo has left the building, finally a letter came to my box and stroke Dr confirmed.

We see Dr Shannon on Thursday and he still practices part time at TCH. Man I hope he can bridge some serious gaps for Ava. We are one medicine down with one interrupted sleep cycle.  And headed back to the metabolics department for some fun stuff.
Liz Mae is certainly getting way too big for her britches. I over heard her tell Ava last night, “Listen to your mother”. I owe her a full blog post soon. My mother is smitten that I have a little me…yes, the little devil I was wished for all the torment I inflicted on her. Good thing she’s a comedian and dangerously cute. I can’t wait until she turns 14.
I have felt overwhelmed during the current cycle of change with Ava. In addition to loosing some serious stability in regards to expectations for her daily routine we are all a bit sleep deprived and edgy. Then there's tax season, an even larger pile of pre-psych paperwork and school visits for ucoming transition meetings.  Really, I may have finally found myself a depot or so away from the crazy train.  I'm sure they serve drinks ;)

I was blessed with a trip to Oklahoma City the first weekend in February to finally meet little Braxton. It was first-class soul food to see my girlfriend Tricia (Kylie too), meet her micro-preemie whom is till in the NICU, toast the memory of her mother and laugh my ass off with her new room mate, her father Bill. My cup certainly ran over.

I am helping Allison with the Greeley Strides for Epilepsy 5K committee this year; Team Ava will soon be ready for associates! Are you interested in advertising, volunteering or participating? The event has grown three fold in 3-years and will include a kid’s race this year. I promise you will be sick of hearing about this before it’s over.  Get in touch if you want to help or have something to donate.

The weekend of May 14th will be the Ben’s Bells distribution in the Denver Metro area. Please, please get in touch with me if you want to get involved. I think this organization is brilliant and I am so proud of Jenny for all her hard work since last May to make this happen in Colorado. Be kind!

Anyone up for Canvas and Cocktails??? April 4th at 6:30, at the new Southglenn location and it benefits Miracles for Mito. We will be painting Mother’s Love and this is by far the best night out in the metro area for $40!

I sure need to get back to blogging more often. I think I just might have New Years cards ready, disguised nicely as St Patrick’s Day greetings.

“Have a heart that never hardens, a temper that never tires, a touch that never hurts.” ~Charles Dickens


Deana said...

Hoping the neuro stuff gets sorted sorry it's such a mess right now!


Anonymous said...

Would that blogging would be all the therapy needed! *fingerscrossed* for better medical help. Barbara