September was a Good Month for Rory

I know, its been more than three weeks since the last entry here. Summer is officially over. September has come and gone, and today marks the begining of October. School is in full force, and I'm back into the swing of things at work, up to my eyebrows in new and catchup work.

You may recall that when we left the hospital, we had the threat of an ileostomy hanging over Rory's head. The docs had pretty much told us that if Rory didn't respond to the treatment at home and ended up back in the hospital, they'd just go ahead and do an ileostomy. So there were many ups and downs those first few weeks, and each squirm, grunt, or fuss (typical behavior for any other baby) brought anguish and concern. I like to look at trends. I literally do, just about every single day. My career revolves around performance trends for water treatment systems. I recognize that you can not look at a single data point to assess a situation, you have to look at the trend of many data points. Christine was not comforted by my analogies of our daughter's health to a water treatment plant. I was not completely convinced either, because while Rory's overall trend looked good to me, I also knew she could crash in an instant.

But September turned out to be a good month for Rory. During the monthly visit to the pediatric surgeon, he reported that he was very pleased with Rory's progress and response to the dilations at home. So much so, that even if she landed back in the hospital, he would not do the ileostomy. They'll just decompress here, and send us home to keep doing what we're doing. I cannot tell you how much stress that relieved.

We also had a visit with the GI Doc. She was also pleased with how Rory is doing. So much so, that she said we could back off the liquid gold formula. She recommended a different formula. Not your standard off-the-shelf stuff yet, but another 'special' formula that's about half the cost of the previous formula. Its more like, liquid silver. We mix that with breast milk. And maybe that's the best part. I don't think I reported this previously, but we could not actually mix the liquid gold with breast milk. Rory would literally gag and spit it out when we tried that. To feed her half liquid gold and half breast milk, we were heating up two separate bottles for every feed - every three hours. Now we can use a single bottle. It's the little things...

Rory had an appointment with the physical therapist too! She was indeed a busy girl this month. Christine was too. And they said Rory looked pretty good. The mild stretching exercises, and holding her the opposite way when feeding, were doing the trick to correct her stiff neck syndrome. Now we're just working on ensuring she has a full range of motion. That means a lot of tummy time, and giving here things to look at, at specific positions so she cranes hear head many directions.

September was a good month for Rory. Let's see what October holds in store for her.