Thursday, August 6, 2009

Epidemic

It's a freaking epidemic of assvice.

Today we had a meeting with Early Intervention to set up the nutritionist for Robbie.
The reason I asked for a nutritionist is because Robbie doesn't eat. He's old enough now that he needs nutrition beyond just formula or breast milk. But since getting that nourishment into him is...uhh.. challenging.. I asked for a nutritionist to help work around those issues.

Her advice? "He needs to eat more solids."

Well, thank you Captain Obvious.

I explained that I'd LOVE for him to eat more solids, but so far, he's been unconvinced. She got a bit of a snotty tone and asked "what his therapists have to say about that." All I could do was tell her that his therapists, doctors and I are working on it, but it's likely to be a very long time until he's able to rely on oral feedings for survival.

Ay yi yi.

She also gave me a lecture about Robbie having gained too much weight this month. I realize 4 pounds in a month is too much. Hell, I was the one who said "he gained too much this month, but it kind of snuck up on me." Still, I got a lecture.

She also told me that the reason he doesn't want to eat solids is because I'm feeding him too much. He gets too many calories, so why would he want to eat?

Ummm.. Robbie wasn't eating enough back before he had a tube; when he was literally consuming barely enough milk to keep him hydrated, never mind nourished or growing. He was literally starving himself, malnourished and in the hospital. He hasn't been on a growth chart- even the preemie chart- until this last month. 13 months of starving, 1 banner month, and I get all of this.

Yes, we're tweaking his calories, but when a child goes from needing more than the max calories to grow to less than average, there is a bit of an adjustment period. Give me a break.

Anyway, I was actually pretty dumbfounded today. I thought of all the things I should have said after she left. But she'll be coming back for a "real" session in a few weeks and we'll be having a real chat then. Either she can join team progress, or she can go away.

Honestly, if all she has to say is "eat more solids" she's doing us no good anyway. I have a brain in my head. It's full of common sense. If I could simply feed him more solids because I wanted to, I would never have called for a nutritionist in the first place!


Anyway- in related, exciting news- Robbie ate a puff yesterday and two today!

Yesterday I put some on his high chair tray while I went to make him some juice (we're doing some straw practice as part of his therapy) and when I came back, he had a Puff in a pincher grasp (woohoo! Pincher grasp!) and he was licking it. I just sat and watched. He managed to put it in his mouth and use his 2 little teeth to crunch on it. Eventually he got it in his mouth and started gnawing on it.
A couple of times, he put his fingers in his mouth and I thought he was going to try to swipe it out, but he didn't. He swallowed it! NO GAGGING! NO PUKING!

Today, we tried again. The first one, he palmed it and had some trouble getting it in his mouth. I asked if I could help. I touched the Puff to his lips and he opened his mouth. Same scene as yesterday, lots of gnawing, a very unsure look on his face and the fingers went in to check it out several times, but he got it down.

So I tried a 2nd one. This time I handed it to him between his thumb and forefinger in a pincher grasp and he was able to self-feed again. That one got spit out, but he let me scoop it up with my finger and put it back in. I don't think he was spitting it out on purpose, I think he was just kind of figuring out his tongue and it came out. After I put it back in his mouth, he swallowed it. Again- NO GAGGING! NO PUKING!

If I were physically capable of cartwheels, I would have done them in the living room.

I know things can (and probably will) get worse again. As all the doctors and therapists keep telling me, reflux and feeding issues are a roller coaster. They will get better and worse all the time. But right now, it's improvement. He ate something with texture. That's cause for celebration.

Now if people would just stop acting like I don't try to feed him, I might stop feeling mildly homicidal on a regular basis.

--Trish

16 comments:

Kayla said...

I LOVE this line: "Either she can join team progress, or she can go away."
And - way to go Robbie on eating the puffs!
You're doing a great job with him.

Laura said...

Yay yayayayayayay YAY! This is one of the best posts ever! No just one puff on one day. But three puffs over two days in a row. Holy smokes. I am floored and totally jealous. Robbie needs to come over to my house and show the boys how it's done.

Anthony's Mommy said...

Not sure if you read this ladies blog http://lizmccarthy.blogspot.com/ but her daughter is now almost 4 but she had a feeding tube and had a hard time getting onto solids. Her mom would probably have some great advice you could actually use and not get crap about. Her daughter is eating great now!! I know she has helped others with similar feeding troubles. Shoot her an email. She's very sweet and helpful.

Kim

Azaera said...

He ate finger foods!! That's fantastic. I'm so excited for you right now!!

Amy said...

Yay Robbie! Way to go eating the puffs!!

Trish said...

Kim- Liz actually runs a micropreemie message board I'm part of!

cats with passports said...

((HUGS))

Rachel said...

Yay Robbie for eating puffs! And yay for you for offering them and continuing to offer him so much love and support while he eats. I vote for ousting the nutritionist (honestly I've never found one who really got it. Nobody goes to a nutritionist for cookie cutter advice, and the 3 I saw totally did not get my dietary restrictions or 'weight gain' goals (due to a prior illness I was underweight - no longer an issue by any means)).

I don't know how you offered Robbie the puffs, but sometimes my daughter seems to dislike spoons (while she loves them at other times) but she will chew on food on my fingers so if she absolutely refuses to open up for a spoon I just dip my fingers in the food of the moment and let her lick away. Of course, if Robbie can grasp things himself all the more fun for him.

Two Hands said...

I can't do cartwheels either, but I'm doing them in my head. That's wonderful. Way to go Robbie and Mommy. What the heck do these people think you've been doing all this time????I just have to look at the photo of him when he was so new and his skin was translucent and he looked so fragile and I know, I KNOW, that you have done such an incredible job, because he is a miracle. His life is a miracle.

Mountain Girl said...

Trish, you just keep doing what you are doing with Robbie. The nutritionist sounds like she is worthless! I'd suggest that you offer him a variety of foods - both finger foods and spoon fed foods. (which you probably already do!) Let him feed himself, let him feed you, let him feed his teddy bear, let the teddy bear feed him. Make funny noises, funny faces - in other words try everything that you can think of! Let him play with food. I went to a training about this and I'll see if I can find my notes/the presenter's name, etc. It sounds like you are WAY smarter than the nutritionist! :-)

The Gonce's said...

"he needs to eat more solids" Seriously, that is the best she had for you? Eeeek! We see a nutritionist for Bree and she is wonderful! Keep searching until you find the right nutritionist for Robbie...there is one out there.

And puffs!! WOO HOO! I WISH I could get Bree to eat something like that! CONGRATS to the proud parents...that is truly something that deserves a gold star for Robbie as well!

Anonymous said...

gooooooo puff eater!!!!!

Me said...

WOOOOHOOOO!!!! That is absolutely fabulous!

Celine said...

What great news on Robbie eating the puffs. Fingers crossed that this trend continues :)

dr.girlfriend said...

I realize you're frustrated, but in my head, all I can think is "YAY!!!! Robbie gained TOO MUCH weight!" (Did you ever think you'd hear *that*?) And he ate a puff! That boy is a superstar!

Valerie said...

Sometimes I wonder how people work in the helping field when they make comments like that. Glad Robbie's doing well with the puffs!