Big Appetite!

Jimmie is on track to eat 16 cubes (Rachael makes his baby food and freezes it in ice cube trays) today! He has a big appetite lately! He is drinking by mouth about 300 mls a day and Rachael is only tube feeding him once now in a 24 hour period. We are still hoping he ups his liquid intake, but Rachael is learning to be patient and also open minded about the amount. She is being supported immensely by a "tube fed kids message board" where she has posted many times. I linked her latest thread because it is very interesting and informative to read all of the replies...

Jimmie is walking, but still chooses to get down and crawl when he really wants to get somewhere. He is babbling some now. He is overall pretty physical and not very verbal, but he is babbling enough that Rachael feels better about it. She said he has this hilarious fake laugh now that she's going to try to get on video.

Jimmie has an appointment to fit a bigger g-tube button (oops not bigger just new and clean..)in his stomach next month. Rachael will ask some questions about the protocol of getting rid of it at that appointment. She's nervous even thinking about it, but wants to continue to be aggressive in this weaning. She does not want Jimmie old enough to be totally aware of eating that way if she can help it. Right now the one time he's being fed by the tube (in 24 hours) is at night, she typically hooks him up and feeds him while he's asleep. So as far as Jimmie knows he's responsible for doing all of the eating work himself!

We are excited about his progress!

Love,
Amber

P.S. For those who are following McKenna- I updated her blog.