18 May 2009

Feeding Evaluation

Liam has oral issues.

We have had him in OT since November and due to the delicate nature of his gagging and vomiting, his OT has wanted to be very gentle with Liam. She doesn't want to push him and have him throw up what little volume of food he takes in. I have tried hard to avoid the g-tube! But we've walked such a fine line that I feel like we haven't been able to help him at all.

Liam has a multi-faceted problem that I was well aware of a long time ago. He has issues with:
1)Oral motor
-and a few other minor things that all add up to a lot of obstacles.

But Liam has been able to drift along for a long time with out any real concern. His Pediatrician didn't feel it necessary to have a GI consult since he's still s l o w l y gaining weight even though I wanted one a long time ago.

So, we drove to Chapel Hill today for a feeding/speech evaluation by their OT. Our local OT wanted to get feedback from someone else on what to do/not do to help Liam along with his oral motor skills. The evaluation went really well and I know she got a good look at the problems.

I didn't feed Liam after his early breakfast because they wanted him hungry when he got there. We didn't get into the appointment until 1:00 and it was around 1:30 before I actually offered him a bottle. He took some of it but clearly wasn't all that hungry after going hours without food because he only took 2 ounces. She asked me if he ever gets hungry. Uh, that's a big NO.

She asked a bunch of questions. She watched him eat from a bottle and a spoon. She felt him as he ate and watched as he threw up all of the food I had just given him. ...SIGH...

But her primary concern is getting him in for a GI consult asap. She said to me all the things I knew already...

He has reflux. And it's bad. His morning vomiting (on an empty tummy) is because of the reflux.
He is most likely emptying very slowly from his tummy.
He has such a strong gag and with the full tummy it makes everything come up.

And until these things are taken care of, she said his oral motor skills are going to suffer. She said that his skills are rudimentary and that they are working for him now but that as he gets bigger and older they aren't going to work anymore. :o That was news to me but probably not to everyone who has watched him eat. Especially as I think back to the cranial sacral therapist who said she had never seen a child with such complex issues not have a g-tube! Um- thanks?

I am hoping she will have the strings to get us in to GI faster than I could. When I tried to schedule an appointment they weren't even taking appointments until August! Clearly it won't be a good idea to wait that long. Especially now that my little man is thinking he can just bite the bottle and not drink it anymore. It makes for a very irritated mommy and I am sooooooo tired of our sleep feedings. I have only gotten 5-6 hours a sleep every night for over a year. Last night was the first night ever that I actually wished he had a g-tube! I tried to banish that thought but I am a mad, sleep deprived woman!

Anyway, after some GI help we can then focus on his oral motor. She gave me some tips and why they are important for him. She said to put the food on the sides of his mouth and alternate between sides and the front to get him to work on his lateralization. She also wants me to hold his chin while he sucks from the bottle to help him learn to properly suck (I tired this ages ago but I didn't stick with it because I wasn't sure I was doing what I was supposed to nor did I know why I needed to do it) which is difficult because I only have two hands. And she said to try feeding him sitting up straighter.

She did say that he is a very accomodating boy. And he really is. But, we want to keep it that way and it most likely won't stay that way when he doesn't care about eating, doesn't feel good about eating and doesn't get hungry. He just puts up with me right now. =)

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23 weekers said...

Liam sounds so much like Carver. Carver is really laid back. We put the food in on the sides of Carver's mouth and it does help. However, he does "pocket" the food. Once the "pocket" pushes its way to the back of his throat - he swallows. He still gags quite a bit. He's on Prevacid and has a fundo, yet he still refluxes. I've been told that it's probably related to the muscles and his CP. His tummy seems to empty slow, too. We use Miralax daily. It helps, but still lots of gagging. We play fun music while he eats and talk to him while he eats - telling him he's a good boy and how good of a job he's doing. We tap his bottom lip and say "Ahhh" and he now opens his mouth most of the time when he hears "Ahhh". We still tube feed most of his milk because he just isn't able to drink all of the milk and eat his food. He only eats 3-4 oz of baby food per feed. I keep hoping it will get better. We continue to try. Hopefully things will click eventually. Never give up (I know you won't). I've heard stories about some finally "getting" it.