God is our merciful Father and the source of all comfort. He comforts us in all our troubles so that we can comfort others. When they are troubled, we will be able to give them the same comfort God has given us.
(2 Corinthians 1:3b-4, NLT)


Friday, February 26, 2010

No more milk...

Friday, February 26
So, milk is definitely out of the question for the time being. Every time Faith has any significant amount of milk (even just the 1-2 oz she gets when practicing drinking), she projectile vomits! Yogurt is ok, which is good news, because she loves it, and the nutritionist said cheese should still be fine. I'm planning to introduce soft cheese sticks as finger food pretty soon, so I was glad to hear that, too.
Speaking of finger food, Faith is back to eating real solids! I've been making these Oatmeal Banana Drop cookies for the kids, because I'm trying to eliminate excess sugar in snacks and they don't have any sugar added, and she LOVES them. We've also added old-fashioned cooked oatmeal to her regular food, cream of wheat, and we've tried brown rice too for some extra texture for her to work on. She's handling crackers and those boring little dissolvable puffs again, too, and even holding and eating chunks of banana and avocado!
She is completely cordless during the day; we are only hooking her up for her g-tube feeds overnight now and giving her one full 500mL bag of formula while she sleeps. We've been doing this for a month now, and yesterday when the nutritionist was here we weighed Faith, and she hadn't gained any weight, but she did maintain, which the nutritionist was super happy with, considering she's getting WAY less calories than she was when she was first starting to eat again and still hooked up to continuous feeds at around 50 mL/hr most of the day, and she's gotten super active and is burning more too. Now if only she could figure out the drinking thing, we'd be so close to getting rid of the tube!!
Still not really any more progress with crawling... but we've been too nice and haven't made her wear the torture device lately. She has started pushing herself backwards more when she tries to crawl, which the OT says is really good and is an important step to learning to move forwards. She's also signing "thank you", "all done", "more", "love you", "hat", and probably a couple of others I can't think of right now, as well as starting to try and actually verbalize some of those words, and she can shake her head "yes" or "no" at times when it would actually make sense for her to do that. All in all, she is doing awesome! I think she is waiting to crawl for us to get some baby-proofing done, because even with her limited mobility so far, she gets into EVERYTHING! Her favorite activity has progressed from pulling all the shoes off the rack by the door to now pulling everything out of my purse, unzipping my wallet, and scattering its contents all around the living room. Why do we want her to crawl again?!
Still no job for Dave, although he has put in applications for some good ones. Please continue to pray that something will come through soon on that front!

3 comments:

Dean said...

Just popping in to say hello Raeanne, i try as much as i can to keep up with all the gastro babies and glad to see you are still keeping a feverish diary of posting.

Dean
www.gastroschisis.co.uk

oleyfriends said...

Hi,

I found your blog and wondered if you had heard of the Oley Foundation. We offer free information and peer support to families like yours with a member on home tube or IV feeding.

Check out our web site at www.oley.org. For a good overview, click on the "New to Oley" button.

We have some information on weaning a g-tube fed child to oral feedings that might be helpful for you posted at http://www.oley.org/tubetalks.html (scroll down to the bottom of the page).

Feel free to call/email me if you have any questions or would like to meet another family in a similar situation.

Warm regards,
Roslyn Dahl
Oley Foundation Staff Member
dahlr@mail.amc.edu
(800) 776-OLEY

Anonymous said...

I just wanted to send a comment, in Feb 2009 we found out our baby girl had gastrschisis when we were 12 weeks along. I found your blog in my research and have loved reading it. I hope Faith continues to strive! Thank you for you wonderful blog

email Owen_lyla@yahoo.com

Renee Cote

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