Comment on Japanese Regenerative Medicine: Intestines

While I see hope that medical advances may provide, if not a cure, a partial reprieve from some of Bo's medical complications from his condition, I felt a need to comment on the recent publication that seems to be making the rounds. This technology is great, and may prove to be a cure for those with gross anatomical short gut: kids whose intestines were removed due to NEC, or volvus, or even pseudo obstruction. However, for those of us whose kids are on TPN due to genetics (MID, Hirschsprung's, tufting enteropathy, etc.) this technology's usefulness only comes into play when a second step can be successfully accomplished: gene therapy. I for one don't think Bo needs more centimeters of the same non-absorbing surface that he currently has. And really, if that second step is possible, you might even hope you could bypass that step of needing additionally created artificial intestine and just apply the gene therapy directly (like the gene therapy that has returned some vision to blind patients whose conditions were genetically caused http://www.reuters.com/article/idUSTRE57B5PN20090812).

7-10 days

Well, Bo seems to slowly be recovering from his cold, and Jose seems to be getting worse. Hopefully we all come out alive at the end of the weekend. I'm already exhausted. Those pre-natal vitamins have kept me healthy all winter (knock on wood).

Throwing up all night

We are again sleep deprived and a little panicked. Took the boy to the pediatrician, who listened politely to our concerns. And with a completely straight face told us that a teaspoon of honey has been shown to be more effective than medication for toddlers with colds at night, and sent us home.

Just a cold. An ordinary toddler cold. Go home to your sleepless, coughing boy, and rest in normalcy.

I suppose it's just as well, seeing that I'm too uncomfortable to sleep much anyway.

Pain Appetizer

The hormones from post labor and delivery are in favor of evolution and against my personal comfort. Which is to say, that while I can intellectually tell you that 30+ hours of labor was a long time, those hormones make you forget the visceral part of the experience. I'm not even close to that experience. I'm just trying to get and stay asleep. Without excessive protest from my lower back. Ugh. I'm sure it was worse with Bo. But I don't remember this real-time, persistent ache.

Please help the pregnant lady!

Nuff said.

Preparing the Way

I remember when Bo was still very unstable and it was still questionable whether we would have to say goodbye to him before he would even be old enough to remember us, before he was old enough for us to actually make memories with him, long long long before we would even know what it meant to be ready to say goodbye. It was very hard for me to be around others' pregnancies. It gave me the irrational longing to be pregnant, the condition that kept Bo the safest. In my grief-striken reveries I would imagine having child after child, like each was a layer to buffer the pain. Insurance. Talismen. A continuous hormone high.

And now that we are more than halfway through this second pregnancy, it is a struggle to keep a lid on the hysteria. And I just can't stand being the exhuberant, joyful expectant mother- so much the thumb in the eye of who I was just so recently. And certainly, to any of those other mothers waiting to be mothers.

Maybe that's why I still follow and have so much empathy for the families I follow on the links included on this blog. They all walk paths that are the alternate universe we may have so easily been on, that we might find ourselves on again any day, that we feel we are on some days more than others, still. Saying goodbye, struggling with hospitalizations, searching for therapies, for answers, for support.

Life is uncertain. Anyone might be faced with these realities, but having been so close to them so long, breathing the same air, sharing the same bed with anguish, night after night. It can be paralyzing. And then this child, always on the move, gives a kick, tumbles, morning, noon and night. And we keep moving too. Grateful for the chance.

Maybe that's what they mean when they say someone "found religion." That you've found your stronger self emerging from the broken bones and ashes. I've seen the bright white of extra calcification where a broken bone has mended, stronger than before.

Week 22

The Baby Present is more than half-baked!

Housekeeping: I'm moderating comments now as someone's spambot found blogger, and I unlocked those videos in the last post. I'm not the most technology-loving person and I wasn't sure how to do it. But it's done. Also, I don't think there's a solution to the blogger layout cutting off the right side of the video, so if you want to see the full frame, you'll have to click the link in the vid after it's done to go to vimeo and see the whole thing.

Enjoy!

Hawaii on the Brain

Thinking of our Hawaii families expecting very soon!! Can't wait to meet you!