Jennifer spent most of the day in Chapel Hill on Wednesday meeting with the feeding specialists there. They were pleased to learn that Janie's stomach is accepting the food so well. As a result, they are more anxious than ever to have the G-tube put in as they share our concern for multiple reasons still having a tube still running through her nostril. Jennifer will be coordinating with the GI doctor at Brenner to try and get the surgery set up.
Since it appears the G-tube is the only option at this point, we are more than ready to get this done. As you can imagine, in light of being 7 months old now, Janie is, naturally, getting more active. She rolls around the floor and we're seeing early signs of army crawl attempts. These are great signs of activity given the heightened possibility of delays with her physical development. However, movement of that sort creates concern for the tube she's attached to. Recently, we've found her in her crib with it wrapped around her torso several times (glad it wasn't her neck!), she's nearly pulled the pole onto herself, and she did manage to get the tube completely out again on the morning of the 4th. Fortunately, with it being in her stomach now, our friend Krista was able to put the tube back in which saved a trip to the emergency room.
The doctors tell us that the G-tube will have positive impact on JG and our family given that it's less restrictive than the tube. Plus, with no tube in her throat, we may see some immediate improvement with her eating. Speaking of eating, she seems to like sweet potatoes and peas. We continue to see slow improvement with the volume we're able to get into her over a 30-minute feeding.
Today, our newest challenge was presented. We've known that eye issues often accompany Downs and could certainly observe that Janie's eyes have a tendency to cross. We figured she'd need some glasses before too long but hoped it might wait until she was a bit older. Unfortunately, it's worse than we'd hoped. Beginning immediately, Janie will wear glasses and a patch will cover her dominate eye in hopes of strengthening her weak eye. (I don't have the details of which is which at this point.) According to the eye doctor, if improvement isn't seen in the next 3 months via these measures, we may be forced into eye surgery to get things going in a better direction. Therefore, her face is going to trade a tube and tape for a patch and glasses.
As you can imagine, the speed at which these changes come is overwhelming for all of us but, Jennifer, in particular. Hardly a week goes by where we don't take a step in a new direction for one reason or another. It's a challenge to catch our breath.
On a more positive note, free of restrictions from her heart surgery, JG's had her first trip to the library with Jacob and Jensen and has a had a couple visits to church with us.
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