A Typical Day In The Life

This is why I've decided to call Jordan a "complete needs" kid, instead of a "special needs" kids.

• Scheduled an appointment with a ped allergist, after talking to 4 docs that wouldn't take kids under age 4
• A phone call with her ped neurolgist: He is scheduling a 24-hour EEG to check out her new, strange movements -- we NEVER know what is "normal" for her and what could be a seizure
• Appointment with another genetics team to explore the rarest of the rarest & newest tests (we're running out)
• A call from the neurometabolic clinic to tell us that her blood & urine tests from December were, you guessed it, NORMAL (again -- I must have the most abnormally "normal" kid around--if you saw all her spinal fluid, blood & urine workups)
• Two calls to the dietician to get her prescriptions renewed for her food supplements, and to get her pre-approval sorted out for her new formula she'll be starting in a few months
• Cancelled her PT visit at the hospital for next week. I need to cancel them all, because, bless her heart, the PT just has NO IDEA what to do with Jordan, so we just end up sitting around talking, which is nice, but not the best use of my time every-other Tuesday, especially when we get great PT at home from out EI program
• A couple of calls & visits to the insurance company & its website trying to sort out some billing confusions
• Two calls to the DME company to make sure her feeding & suction equipment is all ordered & ready for it's next delivery, and to try to find out what they've been billing the insurance (failed, will try again on Monday)
• An early morning, unscheduled, in-home PT appointment to make up for the one missed on Wed due to the snowstorm (and believe me, we are NOT morning people -- the PT must have been laughing at us and our groggy disorientations at 8:30)
• And, the traditional feeding & medicine schedule, and interspersed barfs & baths & barrels of laundry
• Then I did my necessary stuff (like banking, chasing down a prescription that ran out while I wasn't paying attention, taking Avery to daycare, etc, etc)

The funny thing is that this seems like a perfectly normal day to me these days -- no wonder I get to the end of the day and don't know where the time has gone (and feel like I have nothing to show for it).

Maybe I'll get something done that I want to do over the next couple of days -- oh, who am I kidding?!

Happy weekend!