Tuesday, January 13, 2009

A new theory

Well, OT just left.

For once she actually got to see Robbie's (not) eating in progress.

At 1:15, he acted like he was STARVING. He'd barely eaten at his 11:00 feeding, so that was entirely likely.
He was wide awake, so I knew he wouldn't eat, but I hoped.

So I gave him a bottle. He sucked on it like a mad man for about a minute and a half. Then he stopped.
He'd taken 10cc. (About 1/3 of an ounce)

That was about the time the OT showed up. I was still sitting with the bottle in the mouth. He gummed at it. And gummed at it. And gummed at it.

She asked if she could try and I passed him over.

For an hour she stimulated his mouth, tried different positions, played with him. She eventually took a break and did his stretches and tried again. He took another 10cc in that time.

He was finally getting drowsy.

I told her that he'd eat now and took over. Sure enough, he sucked down 60 cc (2 oz) in about 10 minutes.)

That's the story of my life. Try to wear him out, try to feed him. Emphasis on TRY.

But at least she got to really see what it's like.

So her theory is now this:
He's SO not oral-averted that he's actually the opposite. She said he's a bottomless pit of oral stimulation need. All he wants is oral stim. So much that all it takes is something in his mouth to make him happy. He can ignore hunger (eating only enough to turn off the hunger) as long as his need for oral stimulus is met.

Now, I'm not 100% sure this isn't all a bunch of mumbo jumbo, but it does make sense. He'll chew/suck on anything- his hands, toys, pacis, my hands- you get the idea. But he won't EAT.

Anyway, she did some vibration stuff on his cheeks. He LOVED that. He just laughed and laughed. So I guess if nothing else, he's having fun. The idea is that we need to try to "fill up" his oral need and then he can focus on something else.

We'll see.

Of course, I also talked to the GI's office twice in the last 2 days. It started as me calling to ask them to call in the script for the Prevacid solutabs (his reflux pain is IMMENSELY improved now- and no side effects from the lactose.) and ended up with me telling them he's still not eating.

It would be funny if it weren't so serious but the GI's office recommended and OT second opinion and the OT recommended a GI second opinion. No one really knows anything.

I'm not sure if I believe anyone can do anything at this point.

At this point my plan is to give the new drugs and new therapies until the end of next week to work. Maybe once he feels okay long enough, he'll have an appetite enough to want to eat. And we'll fill his oral stim "bucket" as best we can and see what happens.

If nothing gets better, I'm going for a GI 2nd opinion. I would like to see about something to stimulate his appetite and see if it helps.

If it doesn't, I'm not sure I have much choice about the G tube. I broke down into tears talking to the OT about it today.

I feel so emotional about it. It feels so drastic. I feel so guilty that I let them put one in in the first place, then guilty that I let them take it out and now it turns out he may need another.

I wonder how it will affect him long term. Will it make his oral issues worse? Will it make his reflux worse? Will he be able to run and jump and play like other kids? Will he always have stomach problems? And of course, there are the risks of surgery in general.

But I worry about not doing it as well. He's just not growing. While being small isn't the worst thing in the world, babies should grow. I worry about his health and his developement.

I broke out the exersaucer yesterday and he really likes it. But his legs are too short for his feet to reach even on the lowest setting and his arms are too short to reach any of the toys.

Right now he's doing well in every other area except this. But it can't be long before other areas start to suffer.

I just hate all of this and want him to get better.

For now, we just keep slugging along.



Anonymous said...

Instead of a more permenent gtube, would you be willing to try an ng tube for a little bit? just a thought.

Anonymous said...

Keep up the good work Trish.....but please try to at least give the OT more time! It took our son a few weeks of OT and we finally got his wanting to suck on everything under control and his feedings were more regular. We did OT a couple years ago and now my son is still short but within range for children his age. And he still likes to chew on things and put things in his mouth.
I wish you luck and you are in my thoughts and prayers!!!!

Jenn said...

If you'd like to see a different ped GI, I'd be happy to give you the info for Amelia's doctor. She is AMAZING and might be able to help. I'll give you the info on Facebook, ok?

David, Trish & Robbie Cox said...

Jenn-I'd love that!

Tracy said...

Lots of prayers for improved eating and weight gain
Lots of love and hugs to a wonderful hard working mom.

Maureen said...

I would say that if the OT is correct, a week won't be really enough time to see a difference. However, she might not be correct.

Have you looked into a feeding clinic such as this http://www.pediatricfeeding.org/index.htm
I don't know where you live so I couldn't google for ones in your area. I would really suggest that (vs yet another OT opinion, most places you would get a panel of opinions vs just one).

I know it is completely different, but my healthy typically developing 6 month old weighs 12 lbs 12 oz, which makes him small (as in off the bottom of the charts for weight). His height is on the charts, as is his head circumference, but he is a light weight. Robbie has other issues which make poor weight more concerning, but I'm saying this just to remind you there are small kids. Both my husband and I have cousins that had babies within a month of our son, both of the other babies are literally over twice his weight. Both of my husband's nieces were larger at 1 month than our son is now (it was the same with our first, I spent needless hours worrying over this with my first, this time I'm less concerned).

Fertilized said...

I am still thinking of you and robbie.

we put stroller toys and other attachable links to the already stationary toys on the exersaucer for MT to grab when his arms were too short in the beginning. I also put a phone book underneath for his legs to stand on when he couldn't reach it (or one of those platforms for the step aerobics) just suggestions - wishing you lots of luck

Leah said...

Put blankets or books under his feet in the excersaucer I did that with my youngest daughter, and then put toys within his reach. I hope you find the answer to his eating soon.

Heidi said...

Just wanted to offer my support and best wishes to you and Robbie.