Here is a video of Brextin feeding himself - some organic puffs -
Oddly enough we are scheduling him to receive a feeding tube -(mostly just for liquids) - we fly out on Saturday and come back on the 15th from MEDEK therapy and then on the 17th of this month we will meet with the surgeons at Mayo and then on the 18th we will have a g-tube placed to help feed him.
We have struggled over the past two years to feed him - we usually have done it by having a ton of patience and by using a syringe and then we moved up to a squeeze bottle - however often it has taken us over 1 hour to feed him 7 ounces of fluid - so hopefully this the tube will help relieve some of our stress and give him proper nutrients as well.
We at no means will stop feeding him orally - but our hopes are to feed him at least 30 minutes and then whatever he doesn't eat will be placed into his feeding tube-
I am praying that he won't regress - we have heard some kiddos who get the tube -stop eating orally all together and I sure hope that doesn't happen - especially since he has begun to use his tongue a lot more as he explores his mouth.
One other negative that I have heard about g-tubes - is that reflux could occur - and I certainly don't want that to occur - it has been nice to be vomit free (I think it has been at least 6 months since went down that road)
That is so awesome and amazing! Go Brextin! I have to say, he looks so cute in this video - even more so than usual. :)
Plus, I noticed the black paper you taped to his tray. What a good idea! I'm going to try that with Elijah. Perhaps that'd help him with his self feeding too...so thanks for the idea!
Lisa how much fluid does Elijah take in - during each feed?ReplyDelete
It really depends for Elijah. We try to get him to drink at least 16 ounces a day (that's what a nutritionist said was his minimum - that was several months ago, however). Actually, this past week I was really worried about him because he just wouldn't drink. He was having more like 10 ounces a day -obviously not enough! He's learned how to push the cup away (which is exciting) so maybe it was just a control thing. He seems to be drinking again.
In a perfect world, he'd drink 4 ounces 4 times a day. Our pediatrician said as long as he has 4 wet diapers a day, he's getting enough to drink. So anyway, that was a really long answer to say that he's inconsistent. Sometimes he'll drink 4 oz., 6, 1 or none at all during a feed - if he doesn't drink a lot, he'll usually make up for it later.
Have a safe trip!