So, I’ve spent a few weeks making a major adjustment. And I mean major. Now that George is under a low-protein diet, life has become interesting.
Some of the adjustments that have been made: no more cereal and milk in the morning, no more bacon and eggs, no more cheese, no more ice cream treats, no more sleep. Just kidding on the last one.
Actually, this diet has been a bugger. I have been letting him sleep in, so that the other boys have breakfast before he wakes up. Then we start with fruits, veggies, applesauce, all in unlimited quantities (unless the veggies happen to have some protein in it). The funny thing is, that I don’t think George ever feels full anymore. And I kinda get why.
I mean, what’s more satisfying than a piece of toast, or a serving of pasta, or a nice, juicy hamburger? All which are now off-limits (at least in any significant quantity).
Now, to clarify, this isn’t just a diet that I can decide that it’s not worth the effort and let him slide on. We are very, very fortunate that we’ve caught it this early on, and any damage done he should be able to recover from. In fact, I’ve already noticed a change in energy, balance and we’ve added two new words consistently: “Hi!” and…”MOM!!!” WOOHOO! Talk about a sweet sounding word! Of course, his favorite is still “Dad,” but at not-quite-2 I can’t fault his taste.
When we returned from our last conference serving on the American Farm Bureau Young Farmers and Ranchers committee, there were a few letters waiting for me. One gave us the tentative diagnosis (we’ll be completing the genetic testing in April) of Ornithine Transcarbamylase deficiency (OTC). The other was our “free pass” at the ER.
You see, OTC apparently isn’t something you can mess with. Through all the mysteries of what is happening inside of George, when he’s not breaking down the protein and things start to build up, ammonia levels in his blood can start to climb…and that’s not good.
So now, I carry a letter that states that if we happen to be in the ER, George must receive immediate attention, starting an IV drip of [insert lots of medical numbers and stuff here] immediately, removing him from all protein, and THEN wait for the blood work to come back.
What does this all mean?
If George gets a fever, vomits, seems more tired than normal, it becomes an emergency. An easy to fix emergency, but an emergency none-the-less. They like to drive that point home by having you read all sorts of scary stuff.
Thankfully, we’ve been blessed with a pediatrician that seems to be really willing to work with Mayo and become very active in George’s care. The big question has become, “Do we live close enough to a medical facility?” Ugh. That’s a tough one. We’re still working on the answer.
But, for now, we have a plan, we have a direction and we have some pretty quick results already. That’s enough for me…at least for today.
I’ll worry about sleeping tomorrow. 😉
Oh, and did I mention that we’ve started calving? May the fun begin! Stay tuned for pics.
I feel like I need to say something, although I do not know what that something should be. God gives you challenges, to be sure.
I’m just so glad you have the problem figured out! Know that you have a bunch of people pulling for you and your family and this challenge!