Tuesday, April 28, 2009

another feeding post

I said I wouldn't ever post another feeding post again because it seems every time I do, the feedings go down hill. However, I'm just certain they wont this time. Fingers crossed knock on wood.
Alex is eating about 2 oz of food by mouth three times a day, and getting 200cc's of peptamin junior through the tube 3 times a day, we give him the peptamin at the same time as the spoon feeding so it isn't prolonged, and he associates his full tummy with the highchair, and spoon feedings. Since I bolus the peptamin he gets about 55cc's as quick as gravity will take it down, then we wait 10 minutes, then he gets 45cc's, then we wait 15, then he gets 45cc's and we wait 20 minutes, and then we dump whatever is left, and the feed is over. It takes about 45 minutes. This may seem like a long time to you, but for us, it is the fastest we have fed Alex in over a year. Soon after we came home from the hospital we had to make his feeds take a little over an hour or he would promptly throw them up, causing me to say a few choice words that my other children never heard, and Alex to not get his feed. After we lengthened his feed the throwing up stopped, of course though being an RTS boy, he had to leave his mark here and there every once and a while in the form of throw up, but it wasn't enough to make me say those few choice words as much.....Ahem....SO, my point is we are going down on the time, 45 minutes is heaven for us, more play time for Alex, and throw up seems to be a thing of the past, unless the tummy bug is in our house. I could be wrong but taking over an hour to feed your child only to have it thrown right back up might be one of the most frustrating things associated with and RTS child while they are babies. So three cheers for Alex, no, make it 10! 45 minute feeds Woo Hooo!!!!!!!
The things we need to work on: Alex does not self feed, does not want to self feed, in fact if I manage to get him to hold onto something to eat, he throws it down much like the cards in the video.......We also need to work on drinking, some days he seems to be interested but still doesn't take any significant amount, and other days he wont have it at all......And finally we need to work on chunks, some things he does good with like anything that dissolves fast, but gags on things that don't. We have lots to work on, but we have made it sooo far.
Again....10 cheers for Alex!

Man, I love that boy!


Cathy said...

At least 10 cheers for this sweet boy.I am so glad he is eating so well and you have found something that frees you up a bit more time wise.
I have thought about you much lately. Not just when I see your comments but with Annabel's tube site being ozzy again. (Terrible sentence, sorry) While in the Hosptial they left g-tube in for continuous feeds and meds. I guess her site was irritated, granuloma, oozing, etc. I kept asking that someone come to look and give us something that would work. I mentioned the kenalog cream but no one came and nothing was ordered. We returned home Friday night and began kenalog cream. Twice daily! The nurse came last night (they do that when released from hospital) and commented on how perfect her g-button looked). Again, I though of you. YOu see you are the one who originally mentioned the kenalog cream and to you I will be forever grateful, Thank you!

Brandi said...

Yeh Alex, yeh mommy, yeh daddy, yeh brothers! More time playing, less time feeding! That's a whole extra 45 minutes added to your day :)

Have you tried avocado? We started mashing it, then super small chunks. This is the first food that we started chunking for him.

Nathan is way far away from a cup. We worked on it this week in therapy and he hates the thing being brought to his mouth. Of all things, they told us to try using a shot glass because his mouth is so small (for thick stuff only).

Keep up the good work Alex!

The VW's said...

WOO HOO ALEX!!! Keep it up! Sounds like your Momma is proud, and so are we!!!

ANewKindOfPerfect said...

Alex, you are awesome! I am thrilled to hear you are eating and feeding so well.

Check you out with your chewy P. You are so cute!

Finding Normal said...

That's my goal for this summer. Well, June, since July will be recovering from the cranial. But I want her eating orally more often. I get lazy, and the only way to get her off the tube will be to push her oral.

Kristi said...

Go Sweet Alex.. You can do it..

Kelly said...

Go boy!! Yeah for Mommy and Daddy!

The rest of it WILL come!! He is on a roll.

BTW...I can't wait!!

Kelly W.

Joan said...

I can't remember how I originally came across you blog but I've been a lurker for a while and wanted to say how much I've enjoyed reading Alex's story. I'm a pediatric PT and work with a lot of special kiddos. One of my kiddos has a lot of feeding difficulties and has recently discovered the fun of mesh feeder bags. Apparently they are available at Babies R Us for a reasonable price. It's really opened up her world of what she can taste as she has lots of trouble with anything chunky also. She has been working on chewing just about anything. The family puts a little bit of whatever they are having for dinner plus lots of other fun things like grapes, avocados, chocolate...pretty much anything you can think of. They allow her to chew and get the tastes without the gags while she tries to protect her airway.

Phillippa said...

Have you tried small chunks of ripe banana? They seem to have that dissolvable/mashable texture you're looking for. In my experience, it would be a good idea to stay away from uncooked pear... ;-)

Just'N Angel said...

Yay for Alex! Rah! Rah! Rah! I'm proud of you, big boy!