It's been over 6 months since transplant. 

Brian has been doing great since donating his kidney to Michael. If it weren't for the small surgical scars, you'd never know he is down an organ. He's feeling well and really never skipped a beat. 

Michael continues to make strides despite all of the challenges he has encountered. He has grown significantly since transplant, has more energy and is more engaged than ever before. We were most excited when Michael took his first steps unassisted(!) and started saying a few more words! Milestones such as these are that much sweeter after being told he may never walk or talk. 

He also lost his first tooth! Danny tried to sneak Michael’s tooth under his own pillow, explaining to us that Michael doesn’t need the money. He reversed course once it dawned on him that the tooth fairy is probably friends with God…

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February was a tough month. Shortly after being discharged from his last surgery, Michael contracted a stomach virus and ended up back in the ICU due to severe dehydration, weight loss and an acute kidney injury. The little immune system he had before was nil, and he relied on new medications, IV infusions, IV fluids and IV nutrition for two weeks to get back on track. He was so sick that it took me back to his cancer and chemo days-days I would prefer not to repeat but also days that prepared me for situations such as this. Two days after being discharged he was back at the hospital with dangerously high lab values but managed it outpatient with daily appointments, labs and infusions for the next week. Although the days were long, it was nice to be able to sleep at home and have some much needed family time. Our team keeps reminding us that the first year of transplant is the hardest. Thankfully, we’re over halfway through it. 

Amidst the unexpected illnesses, we've continued to assess and manage Michael's fluid accumulation in his abdomen. At the end of January, a doctor found a couple of case reports about kidney transplant patients with intractable ascites linked to an anti-rejection medication that Michael was taking. Although data was limited, none of the other hypotheses were giving us answers, so we decided it was worth a try to stop the medication to see if Michael's ascites could be a result of an extremely rare side effect of this drug. It turns out that the medication was the culprit.

Since stopping the medication, the excess fluid accumulating in Michael's abdomen has subsided, he no longer needs weekly sedated procedures to drain fluid, his kidney function is back to normal, and the surgery to remove the clot and fix the narrowing within his liver again has been postponed indefinitely. We are grateful that both inpatient and outpatient, multiple specialists persisted and collaborated to come up with creative solutions to address his rare medical mysteries. 

Things slowed down in the month of March. We have had routine appointments, labs and imaging to scan for cancerous tumors and to monitor his kidney, his heart, his lungs, his blood clot and his bone growth (among other things). These things become routine after a while, but I still hold my breath a little with each test. We continue to make adjustments as other concerns arise but have been managing it all without any hospital admissions, which is a huge improvement lately. We are hoping to space out appointments and labs in the near future. I'm hopeful that we are near the point of stability. We have to be because Michael is running out of rare and unexpected things to do! 

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I do not need to find God's will in this moment and in these circumstances. This moment and these circumstances are God's will for me. -Father Walter Ciszek

These words articulate what I've come to know to be true. Whether you have followed Michael's journey from the beginning or just recently, you have had a glimpse into both the miracles and the heartaches of his life. It's impossible to understand why life plays out the way it does sometimes or how a joyful, innocent child like Michael has had to endure such challenging circumstances; but if it's not God's perfect will, then it's His permissive will, and we trust that something far more beautiful and good will come from it. And as always, Michael proves that joy and suffering can co-exist. We wouldn't change a thing about these past few years. Michael's witness has helped us to see the true, the good and the beautiful in the gift of life. And what a gift life is. 

God is good. 

All. The. Time.