Monday, June 20, 2011
This is going to hopefully be the entry that starts me blogging again. I’ve missed it, but as you can see from the title, we’ve been a little busy the last few months. After Sammy’s give-mama-heart-failure stay in the PICU at Children’s, we went into quarantine for months. That’s right, me, a newborn, and a two year old unable to leave the house from January to April. After April we entered “cautious quarantine”, freeing us to move about with certain restrictions. When RSV season hits, we may actually have to go back under for another few months. We’ll see.
Sammy is doing so great, and I haven’t blogged about our experiences during that time because I needed some distance. I can’t say that we’ve all fully recovered emotionally, or ever will, but I think time is giving us some perspective and helping us live without the fear of every germ like we were before. My little man who was being fed through a tube in his nose months ago starts baby food tomorrow. It doesn’t get much better than that.
Since nothing can ever be too boring at our house, Wren has just recently been diagnosed with Celiac disease(official diagnosis coming after blood test panel, but chances of a positive outcome are right around 98% at this point). This means no gluten in her diet, ever. If you don’t know what foods contain gluten, let me give you the short list: everything you eat. The last six weeks of trying to get this crappy poison out of our diet have been overwhelming, exhausting, and just challenging. Add to that her gut is destroyed, so she came back positive for 23 other food allergies. We are currently eating no gluten, dairy, eggs, nuts, corn, yeast, and more. I have so lost the baby weight. And we got to collect poop specimens so it can be determined exactly how much she is not absorbing. After collecting poop, I don’t really want to eat anyway.
Honestly, it’s the been the best and worst of both worlds in a very short time, but I want to think we’re ready for the challenges ahead. We’re trying to pull out of survival mode and move into something a little more sustainable, but it’s going to take time. In the meantime, I hope to blog about our progress, about our diet, about our lives in hopes that it might help others or just be a venting process for me. Feel free to read.