Thursday, September 13, 2012

The Zone

It’s finally September! If you’ve been reading my rants for long, you know that my favorite season is on the horizon and at some point during this month I can usually take a deep breath and feel sane again. Some might say I can finally stop being so frazzled and bitchy. If only those opining would give me a day off, they might enjoy a bit more of my lighter side.

I have tackled most of the appointments and paperwork necessary for seizure action plans, prescription administration, modified school day, health care plans, IEP's, the list seems endless… and I’m now ready to leave this dreaded zone and check back into life beyond the summer abyss. I am hoping to tackle a mound of “other things” left undone and Aliza and I are catching up on some quality time. Once I have fully cached my brain, I have a few projects to attack and some much needed time to catch up with my adult friends. There really is no rest for the wicked ;)

The girls are well. Aliza is back at New Horizons Preschool for the year, living the preschool dream. We have her scheduled to start some therapeutic horse riding next week while Ava is in hippo-therapy. I hope this will help her get past some frustrations in regards to attention and the struggle it can be with a special needs sis. I’m sure it will be a continuous dance throughout childhood; at least we have a place to start. We consider ourselves lucky to continue to have this opportunity to dance.

Ava recently visited her Epileptologist and we decided to add a third medication. We have almost made it to the full dose of a drug called, Onfi (Clobazam) and so far so good. It is one of two benzodiazepines she takes with her AED and it seems to help with hyperactivity and concentration. My opinion may be completely different in a few weeks but it has been the easiest add-on treatment to date; probably because we are taking nothing away relieving us of the wane period. With that being said my rule had been no more than two drugs to date…sigh.

Ava also still has pulmonology and urology to tackle. I visited with a dietitian yesterday and she feels we are certainly not experiencing a high level g-tube threat. Thankfully she isn’t nearly as concerned as others on Ava’s gigantic medical team. Ava has fallen under the growth chart but her BMI is still on the chart. Her AED (Zonisamide) is a known appetite suppressant leaving neurology a bit sensitive towards the topic of weight gain. In short, I will be making some of my own Pediasure type formulas that are a lot like smoothies. We are targeting 1800-2000 calories daily. Yikes, my work is cut out in regards to nutrition but I am energized to tackle this task. Being a mommy has brought out a very strong connection with “healthy, real food” for me. I’ll just say I value a healthy lifestyle much more than I did prior to Ava.

And I digress, it is a political year, and a hot topic that is important to my family’s subsistence (particularly to Ava’s quality of life) is being tossed around like a political piƱata.  Medicare is not an entitlement program, at least not the pejorative connotation of entitlement that is being used in our society at the moment.  If you find yourself saying, “Amanda, you are crazy”, then go grab your most recent paystub.  Find the line that says OSADI, and educate yourself on where your tax dollars go and how your government works in regards to this subject.  Here is a link to start: Social Security's Old-Age, Survivors, and Disability Insurance (OASDI). And no, you don’t get any OSADI money back at the end of the year, those are Federal Income taxes. You are entitled to access the benefits you’ve paid for and if you file income taxes, you pay. Clear as mud?

Don’t be a Medicare Hater! Our most vulnerable citizens depend on it. One day you may find yourself in a very personal relationship with the vulnerable, be it yourself or someone you love.

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