Executive Summary

This blog is primarily to provide hope and understanding to families (including mine!) affected by life-threatening diseases resulting in the need for Total Parenteral Nutrition and Omegaven, especially those affected by Microvillous Inclusion Disease.

  Orbiting the realities of TPN/Omegaven and the physical needs of the child, equal consideration to the health and well-being of the caregivers is essential (especially when said caregiver has a propensity for space exploration). The way I see it, if my spouse or I fall apart, no one else will be able to advocate for Bo as forcefully. Likewise, the care and feeding of our support networks are the third leg in the tripod, the minimal number of legs required to support another object (said object being our family unit). These updates keep friends, family and our MID families in the loop with the medical, psychosocial, emotional and financial (insurance) peculiarities of having a kid with a life-threatening condition, who also happens to be gifted (the term is "twice exceptional," groan). Topics feathering out to my job search (yay, got the new job!), my angst (PTSD is nobody's baby), and the relentlessly NON-Keyensian way the world refuses to give us more hours in the day when there is CLEARLY a HUGE demand (I spent more hours a week working out than some people do at their jobs, now I don't have time to brush my teeth some mornings- don't worry, I have the spare toothbrush at my desk)... these are all topics that were introduced by way of new parenthood and MID. They are by no means exhaustive of the inner workings of my chattery brain, nor a comprehensive update of all the goings on of the household. It just seems that way, because MID touches so many aspects of our lives. 

Today's report is: great (nursing, labs and school) for now! Bo was serially: eligible to apply for medicaid, approved for medicaid and approved for private duty nursing. AND, his labs were virtually unchanged from last month and the several months preceding (= he's very stable, yay!). Yesterday I meet with the school district to set up the plans and strategies needed to keep him safe at school (IEP, IHP, 504)- more meetings for this summer.

Medicaid Primer: While each state has different criteria for medicaid eligibility, all are under a federal law (IDEA) to provide an education to each child in the least restrictive environment. Michigan's medicaid is income based, and before switching jobs, we didn't have a need for medicaid. The new job does not provide the necessary nursing, so to continue his care, we needed medicaid. I had expected denials all along the way, but was fantastically surprised. And now, we have it (till it gets reviewed again by the Michigan medicaid medical director in 2 months). The school district may be confused by Bo, but I am hopeful.

School Plans:
IEP- tied to federal funding and tons of paperwork for the schools, for adaptive curriculum and academic modifications
IHP- tied to health, less legally binding, no $$
504- what to do, medically, if... legally binding, no $$, a must for fragile kids

 As for me, I am struggling with some avoidance, time management and anxiety. I used to be very athletic and fit, then I had kids, Ahn finally stopped nursing a few months ago, and now I'm feeling pressure to lose weight and get healthier. I'm too stubborn to care about twisted normative values being shoved down our popular-culture throat. I'm more worried that I'll spend time at the gym and Bo will horribly die in childhood and I'll be standing at his graveside thinking what a waste of time that was. The very next thought is equally horrifying: I keel over or compromise myself and have a heart attack or stroke, and the whole family will have to pay for my less than stellar cholesterol and waist circumference. Both scenarios kinda suck and I'm paralyzed. My only solution is to wake up early and go to the gym when everyone else is sleeping, but that means going to bed as soon as the kids do, and I won't have time to mellow out after all my commitments have been met for the day. See. I need a few hours there.

 I did, in fact, wake up crazy early today. But that's so I can do 2 years' of taxes (last year I was in outer space, remember? No I didn't get an extension, so we'll see what happens) and finish that TPS report (snort). Wish me luck, or send me any spare minutes you might have found under the couch cushions.