Thursday, April 19, 2012


Everyone (except me) got their haircut yesterday at Suzanne's new fabulous space downtown. Bo sat so still and quietly, even though I could tell he was nervous. He flinched each time she sprayed water on his hair. Still, what an improvement on the screaming he used to do. I think it helps that Ahn went first and she did not cry at all. She did get bored, though. Somehow, I ended up with more hair stuck to my clothes than anyone?

Saturday, April 14, 2012

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.

Tuesday, April 3, 2012

Breakin the Law, Breakin the Law

I'm generally not so much a rule breaker in that rebellious eff-you everyone sucks kind of way, I'm a rule breaker in a "I'm here to meet Hans Clevers, he's giving a talk at noon, "meet the pioneer;" I'm meeting the pioneer" kind of way. So I crashed the largest scientific conference in the world, to meet the biggest name in Cancer, the guy who is going to cure MID. With a baby on my back, a four year old holding my hand, my bewildered spouse, and no official identification or admission, we walked through the gate, past the Pfizer booth, down the cavernous carpeted concrete exhibit hall, and up to the lecture hall with 4 security coats trailing us, worrying about insurance liability, children under the age of 12, admission, identification verification, etc. I am pretty sure a host of angels (or jedis?) stood their ground with us, "these are not the unregistered and underaged children you are looking for." We met Prof Dr Clevers for the 15 minutes between his arrival at the hall and the MC's shepherding him to his seat on the dias. I think this really was the only time I've been star-struck, and the only time I've legitimately stalked someone. HC: How did you find out about my work? Me: I've been following your work since you discovered the intestinal stem cell Lgr5 (3 years ago). I read your Tokyo group's paper on colonic stem cell transplantation. It's amazing that all you have to do is shoot the stem cells up in an enema... HC: and they stay there. It's been eight months already, and they are still there. Me: But how can you get cells into the small intestine, past the ICV? HC: easy; an NG tube that goes all the way through the small intestine with perforations along the way. Me: stunned. It was 15 minutes, and enough hope to last a lifetime. I finally get what groupies are all about. It is connecting to your dream incarnate, to hope and love and a dream come true. We may never meet again. We don't know when they will start clinical trials in children. Those first trials will probably use immunosuppressant protocols like those for surgical whole-organ transplantation. The second generation (if they get there, with funding and longevity) will be the one with self-cells genetically transformed. And who knows when of if THAT will ever happen. But whatever is driving this venture capitalist, MD/PhD, the new Chair of the Dutch Royal Academy of Science, I believe he will press on until this thing is cured. All I can offer is Hope. All I can be is Hope. All I can trust in is Hope. There is no world without end, without Hope. There is no world worth living in. There is no future. There is only Hope. You think that something that is broken cannot be re-broken, especially if it has never been fixed. You can't imagine that something like a broken heart can get more broken, because the pain is unfathomable. And you really can't foresee something as small as a newborn and as full of hope as a baby would be the instigator of that excruciating pain of a re-broken heart; the one that was never fixed. I think the worst year of my life was the first year of my second child's life, because all the wonderful moments were sharply barbed reminders of the exquisite pain and deprivation I didn't know I was missing with my first, affected child. My mind was blown that year. My daughter was beautiful, exuberant, voracious. She rarely cried, she ate with gusto, she smile so hard her dimples popped and her eyes disappeared. I loved her deliriously, I was so full sorrow. Somehow, the resumption of delirium, disorientation, fatigue and pain simply jettisoned my being into outer space. I was catatonic with grief. And then, I began my descent back to earth, the thaw, the flash, the burning ozone refined the sting and suddenly, I was back on our home planet. With a new human, a new job, a new life. I did not expect that. I had heard secondhand that a second child was healing, after having a child with special needs. And it sounded so vague, and veiled. I couldn't have guessed why. I couldn't have guessed that the healing required a break so sharp and searing that my whole being would be blown miles into the sky, into outer space, to freeze and thaw, to orbit and crash, to burn-up in a flame so hot it turned white. But I did, and it did, and I am. Back on earth, grateful for the ride, stunned by the views, happy to be home again. And as always, I write to you because I love you. Because you might be looking for me to tell you that there is Hope. Because this isn't my blog, about my feelings for my feelings, but because it is for you to find, because you are looking to see what will happen when you find out your child or nephew or grandson has MID. We are always here, steadfast. We will always Hope. We don't know what is coming next, we never expected the world to blow up and then get made whole again. There are diseases so rare that prevalence and incidence cannot be estimated (MID), there are unnamed syndromes, there are things that cannot be fixed, but might have work arounds, there are things that aren't fatal but profoundly affect quality of life. There are the affected and those who love them. There are caretakers and those who love THEM. This blog is Bo's blog. It is a light in the darkness for anyone looking. It is hope, it is information, it is armor, it is love. My story is incidental, I am only a supporting player, a narrator. I'm just telling the story of my son, because he can't (well, at least not at the technical level). If you have questions, need help, want recommendations, want to shout out, send us love or give a high-five (or fist-bump if you're from Chicago), never hesitate to do so.