It seems like forever since I’ve done one of these and that’s a really good thing! So much to say. Better get started.
On Tuesday, we visited two doctors: gastroenterology and nephrology (GI and kidney). The kidney news was mostly good. His levels are all normal and we’ll repeat the ultrasound in six months (it will become an annual thing) to track the growth and location of his kidneys. All in all, Dr. Simon was really pleased with his progress. And, I was reminded once again just how much I love-love-love his specialists. They’re pretty much awesome. Gastro was a different story.
I mentioned a few weeks back that Luke’s weight gain was pretty terrible. So much so, that we’ve put him on a liquid dietary supplement which provides him with all his calories. Any table food he eats – still not much these days – is just gravy. To be frank, the weight gain, even on the new plan, still hasn’t been great.
The news at the gastro was certainly a mixed bag. We can keep him on the supplement, but without substantial weight gain, it affects so much of his development. While he’s making progress both cognitively and physically, it’s too much of a risk to keep on the slow and steady gain. So, basically Luke has two weeks to show significant weight gain, or…
we go back to surgery. Damnit.
The surgeon (our amazing Dr. Meyer) would insert a GI button which would allow us to administer all those feeds directly into Luke’s belly. Then, we could concentrate on oral stimulation, getting Luke to take in all his foods and calories by mouth. The button would be temporary until he’s ready to get all his calories 100% by mouth.
I guess I have mixed feelings. Luke’s eating habits are horrible. He doesn’t really eat much of any one thing and he tends to “pocket” the harder foods (apples, meats, etc.) in his mouth and not swallow them. I worry about his eating from the time he wakes up until he’s back asleep. It stinks. On the other side, he’s eating some foods, progress is slow but he’s eating. He’s still nursing 3x day; I’m not sure how much he’s getting, but we both love that time of day and I’m not ready to call it quits just yet. The therapist let us know that nursing is awesome for his oral stimulation, so I call it a winner.
Not sure what to think. For now, we’ve given it to the big man and we’ll take the path that’s best for Luke. Always do.
For me, the hardest part is seeing other babies his age doing so much more. Eating their whole trays of food, walking completely normal, talking, saying words, all that. In those moments of self-doubt, I just have to remind myself of just how far he’s come. In Luke world, he is just amazing in my eyes. Sometimes I wish the human part of me didn’t compare. The subconcious, I think. I am utterly amazed at how well he’s doing. How happy he is. What a sweet personality he has. I often wonder what he’ll be like in two years, five years, ten, 20. Sigh. I just know that I love him so much it sometimes hurts. I hope one day he knows how much he’s loved 🙂
Make it a great weekend. I think I’m finally feeling a little better and will be back to blogging momma next week!