Yesterday was fun, tomorrow is big

This has been a crazy month -- full of packing and cleaning one house, unpacking in a new home, packing up my office at work and preparing to train my replacement, all peppered with neurology, ophthalmology, and neurosurgery appointments. In the midst of all this, J battled an ear infection, we coordinated new early intervention services, I spent hours on the phone with various specialists, we talked about possible seizures and sleep apnea, J lost weight (again), we transferred records, and I've been attending weekly training sessions at the NICU learning how to be a good parent-to-parent volunteer.

Yesterday was a fun break from it all. We got to say "thank you" to all the anonymous blood donors that helped save J's life. See? We got to be on TV.

As exciting as that is, tomorrow will be a bigger day. Tomorrow is a day I've been waiting for for months.

Tomorrow J is finally scoped. From both ends. Biopsies will be taken. His gut will be analyzed. In the end, this means that we might start to have answers. 

Jonathan hasn't gained a pound since I stopped giving him breast milk in late October/early November. He hasn't kept even a half a pound extra on him since then. About six weeks ago, after a few fantastic weeks where he consumed more calories than necessary for a kid his size and age, wasn't sick (for a change) and was on a new med to help with bacterial overgrowth in his gut, I was actually excited for his weigh-in. I was sure he'd FINALLY be 17 pounds. But instead? He'd lost weight. Back to 16 pounds 2 ounces. And I crumpled. A few weeks later, after the aforementioned ear infection and accompanying nausea, he was back down to 16 pounds even.

He's gained many inches, but no weight. His energy level during the day bounces about and causes me worry. I can count his ribs. We don't want this for him any more. We want answers. Tomorrow we might get a few. We want our kiddo to be a thriving child.

I am holding my breath in part because I know how this goes, and I know that despite the best intentions of everyone on Team JAM, this month may come and go and we may be no closer to actionable answers. And I know that if that happens, I will crumple into a heap in the corner. It's so hard to see him like this.

Jonathan 4 months ago.
(We won't share a picture of now, it's worse.)