February 9, 2007 - Well, first things first: THE COLTS WON THE SUPERBOWL!!! To say the city of Indianapolis was excited was an understatement! Check out my "photos" page for a picture showing how excited CHRISTOPHER was! ;)
I'm doing great physically...no major changes....just the slurred speech, shortness of breath, choking episodes and fatigue (probably the worst thing). I have chosen an augmentative communication device and the process of getting the necessary paperwork/determination of benefits/prior authorization from insurance has begun. After much research and trying several devices I chose a Quick Glance Eye Gaze System model 3SH. At a cost of more than $11,000 I'm counting on it to meet my communication needs for a LONG time! The tablet system I chose can be used without the eye tracking system as a touch-screen system until the eye-gaze feature is needed, so the system can adapt as my functioning level changes. I can also "voice bank" on the device, recording words and phrases in my own voice for playback later. This will be especially important, since I am unsure how Christopher and Phillip will respond (if at all) to a "voice" that is not really "mine".
Next order of business is finalizing my decision on a power chair. I have an appointment on Monday the 12th with an OT who specializes in wheelchair fitting - Judy Atkins. I've known Judy for a very long time...initially meeting her when I was a basic EMT who would transport nursing home patients (mostly children) to her clinic at Riley for wheelchair fittings and adjustments. Since that time she has been the OT that fitted both Phillip and Christopher for chairs (Phillip no longer needs his...it was mostly for situations where he might become non-compliant...basically having a "sit down strike"...when he was too big to carry!). Christopher still uses his stroller-style push chair for any outing that entails walking long distances because he fatigues (and he's too big to carry too!!!). So, suffice it to say I have had years of trust in Judy's expertise and I am anxious to hear her recommendations/suggestions, since I can only marginally conceive of the needs I might have when I can no longer move voluntarily.
Finances are a bit stretched this month. I had been getting SSI checks for both Christopher and myself around the first of the month but this month my LTD through PHI kicks in....HOWEVER...LTD doesn't pay until the END of the month (so I won't get a check until the 28th of Feb) BUT, since the money will be received in February, Social Security counts it as FEBRUARY income and thus discontinued our SSI benefits...leaving us without any payments between January's SSI (Jan. 1st) and February's LTD (Feb. 28th). Crazy system!
Aside from a few bills that I am just holding off on until after Feb. 28th, we really are doing OK, though. We have plenty of food in the pantry, and this frigid weather has assured that we don't venture out unless absolutely necessary (saving on gas money!!). And there is plenty to do here at home!
I'm trying to get caught up on answering emails....I think I'm up to emails I received on January 9th or so...SO if you emailed and haven't heard back, it isn't that I don't love ya...I'm just running behind!
I've dropped more than a few balls in this juggling act of mine lately! Please forgive...and know that I need your love and support more than ever. Love and hugs, Claudia