Bo was born on 6/3/07 with the rare congenital disorder currently known as Microvillous (Microvillus) Inclusion Disease. It took 2 hospitals and 5 weeks to diagnose. He became the 61st baby in the US to receive Omegaven. His nutrition is 100% TPN/Omegaven. We believe there will be a cure for this in our lifetime, and that a transplant is NOT the best option for this disease. This is our story.
Friday, December 11, 2009
Say Cheese!
I like watching this one, especially as I brace myself for what Dr. Doom predicted as "it" getting worse before getting better. "It" being Bo's level of discomfort. And the solace comes from the thought that he's gotten rid of all his kidney stones and is on the medication to prevent new ones from forming.
Thursday, December 10, 2009
Sunday Morning (10/25) AM, before the wedding
The good news is that huge stone that had been banging around his kidney is no longer there. In fact, there was no evidence of stones at all in the ultrasound he had yesterday (was that really just yesterday?!). The bad news is that we think he is in the process of passing it, which explains the sudden increase in reflux that kept us all up the last few nights. But thankfully, that is tapering and we are all catching up on sleep. And more importantly, the dude is feeling much better.
As usual, Dr. Doom was as doomful as he could manage. He didn't even mention the fact that no stones were visualized, just that he thinks it is plugging a duct in that kidney. Way to downplay any good news. Good work. But he was totally amenable to contacting the guy in Detroit for us (who might have suggestions regarding monitoring Bo's bone density and maybe, please, maybe, some solutions?). In fact, this was the least tearful or anxiety inducing visit we've ever had with this group. Bo was downright cheerful. And with as much doom as he could muster, he had to concede that "Bo is not a sick kid." Say it with me: Miracle! This was the first visit he didn't insist that transplant was our eventual fate. He didn't mention it at all.
But we had called in a panic about all the throwing up at 5pm Tuesday night, and got an ultrasound appointment for 9:45am the next day AND a clinic appointment with Dr. Doom at 10:30am. Doomful, yes. But also reassuringly dedicated. I send him Koo's info that afternoon and he drafted and sent his query on our behalf as of today. Compassion, dedication and love. Seriously, if this guy moves, we will have to follow.
Monday, December 7, 2009
Santa, Candles and Rodney Reindeer
There is a carousel in the mall, but the minimum age is 4yrs. We're not so much the consumers, but we're already grasping at straws for what to do in the evenings to get out of the house, now that it is getting dark so early, and now that Bo is napping like a toddler (one monster nap that consumes the bulk of the afternoon). Fortunately, we have Rodney the Reindeer (a book given to Bo by one of our fave family members, thank you!). I hope he helps take the sting out of being "too little, right now." This book has also made the prosepect of Santa and reindeer especially appealing this year. Hopefully, Bo's sleep schedule cooperates and we can get to the Xmas tree farm that has both this weekend (wooHoo!).
Friday, December 4, 2009
Thursday, December 3, 2009
Friday, November 27, 2009
Tuesday, November 24, 2009
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