13 August 2009

Fighting our battles

When I posted the video of Liam rolling I mentioned that he does it on my bed. He knows when I put him on my bed what he needs to do most of the time. Sometimes he fires all of his muscles in the wrong way and will flail all over the place trying to roll. But for the most part, he is really getting the hang of flipping over. He can not do it yet on the harder surface of the floor, but I know he'll get there. He knows when he gets on the bed what he can do and it is so cute to see him get excited when I lay him down on there.

Feedings haven't been going so well though. We have trudged up and down the proverbial slippery slope and for all the strides we keep taking forward, we still keep sliding down. For a while now, Liam has been taking his 5 ounce bottles from a syringe. While it isn't ideal, it wasn't frowned upon either so I have continued to get his milk in that way. But Liam is starting to get upset at times with it, refusing to relax and drink it. He hardly ever sucks from the bottle anymore. He bites down on the nipple and won't let go of it. I have to pry his mouth apart to get it out. And if he didn't drink from the syringe, we'd have had to resort to that stupid g-tube months ago!

Also, for the first time, Liam is starting to get upset with his spoon feedings. What has always been so amazing to the therapists that know Liam was that he does eat. And we do not want him getting an oral aversion to food. If he starts refusing to eat, we have a huge problem on our hands. And we don't want it to get to that point. We will have lost the last year and a half of success and it could happen in a very short time if we aren't careful.

Feedings issues for kids with reflux, slow motility and oral aversions seem to be cyclical. The cycle can be very rough and you get everything figured out and start moving in the right direction only to have to circle back and start over again. Liam's cycle was going really well, but 3 weeks ago he was put on the generic form of Erythromycin and everything started changing for him. I am praying that he just needs to get regular again and then he'll be interested in eating once more. I do sympathize with him. How can he possibly learn to be hungry when his tummy is always so full?

While we are not at the g-tubes door, it is still always there in the back of my mind. Knowing whether we are doing the right thing is not easy in this situation. I have a hard time giving in to the idea that he needs one. I want him to succeed. Yet, getting him one will take a lot of pressure off him and me. While I'm not ready to give up the battle, I am willing to let this fight go if it is going to be what's best for Liam. My pride is going to take a big hit and my emotions will be all over the place if/when it comes to that. There's something to be said for a momma and her desire to feed and nurture her babies. And while I feel like I have done the best I can, I know there is still hope and time for now.

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1 comment:

abby said...

You hit the nail on the head when you said that feeding issues are cyclical. We get to a point, finally, where things are going smoothly and we think we have the whole feeding thing figured out where Hallie is concerned, and then, boom, back to square one. I wonder sometimes (well, all the time) if it will ever end. She's over three now and we're back in a really bad patch again (she thinks that 20 calories for breakfast is more than sufficient...me, not so much) and I keep going back to the place where I wonder if we would not be better off with a g-tube. Sorry I can't offer words of advice or solution, but I do want to offer empathy, a few hugs, and let you know that Liam is gorgeous.