Sunday, July 4, 2010

The Good, The Bad, and The Ugly

The Ugly totally being me every day after feeding therapy, and especially me after 2 weeks there.

I have been a very very bad blogger recently and there are a few reasons. One, I've already mentioned that I never get on the computer due to the new Blackberry which will not allow me to type in the body of my blogs. I'm also completely exhausted and drained. But also, things really hadn't been going well and I didn't want to talk/write about it. I only like to blog about negative things when they're funny or at least have some sort of uplifting point. Otherwise it's depressing to whoever is reading it and especially to whoever is writing it. I think that most parents can agree that it's never a good day when your kid throws up. No matter how great the day has been, if they puke, the day basically sucked. So when your kid throws up every day for almost a month...pretty much every day of that month has sucked. Depressing thought. So anyway, in order to not bring anyone down with me (except probably my long suffering but wonderful husband), I chose to ignore blogging. I even backed off on the texting and way back on the phone conversations.
We entered our 2 weeks at KCRC last Monday. At that point, James had ceased to put any sort of food in his mouth whatsoever. He wouldn't even touch things that he would at least lick before. He wouldn't even put sugar in his mouth. He threw up every single afternoon without fail. Needless to say, going into feeding therapy, I was pretty discouraged and kind of wanted to throw myself off the balconey (inside joke---probably only family will understand, just go with it). Wow. I'm even depressing myself just writing about it.

BUUUUT...we got to Charlottesville and immediately backed off on his tube feeds and presented him with yogurt to see what would happen. No one, therapist included, thought it was going to go very well. But within 2 days, he was eating more than was going in the tube. I think Tom even teared up while James was eating ice cream. I was in too much shock.

Now, the details of those 2 weeks are fairly unimportant in the grand scheme. We worked on biting and spitting things out and replacing tube feeds with purees. Mostly yogurt and pudding for calories. He's got a loooooong way to go to be eating. If you change certain flavors, he might gag and vomit, any texture causes him to shudder, and he does not know how to chew food and move it around in his mouth. But, for the first time in a long time, he is at least allowing us to present food and willingly takes it into his mouth. 6 times a day we either do a tube feed with biting/crumb practice or we read books and watch Mickey while trying to get 4-5 ounces of puree in him in about 30 min. It is unbelievably exhausting---I can't even explain it. I don't know how these therapists do it all day, except maybe that they are getting paid.

But we finally have rewards and are seeing our boy grow and develop. We even got confirmation that James is actually the smartest kid ever. He has an amazing vocabulary, knows all his colors, and can pick out any animal or body part, even his clavicle (seriously). He has even slept throught the night 2 times for the first time ever.

Amazingly, things are looking up!!