As stated in my previous post, we have switched Allie's formula to Pediasure Peptide (predigested formula). We are still adding Duocoal to it to add a little extra calories. Allie now receives all of her feeding via gravity bag. It works wonderful. The downside is Allie's feedings now take a half hour each time but that's okay. She's a calm little girl and doesn't mind sitting on the couch or her bed for a half hour.
Allie gets 3 feedings during the day and each feeding is 4 oz. At night, she gets 6 oz over an hour period. Of course she still isn't getting the full calories she needs but we are working on it.
In addition, Allie is still eating a little bit orally. It continues to go in spurts but we are not pushing her oral eating at all - if she doesn't want to eat, we simply give her a feeding and it's all good. I don't care how she's getting her calories, I just make sure she gets them.
So, I'm happy to say that things are finally going a little bit smoother and Allie is starting to gain weight again. She sees her GI doctor next week so I'm excited for her weight check. I'm praying she is over 29 pounds and that her height has increased!
Since Allie is getting more calories, her energy has increased and she is less crabby too. She just seems like a happier little girl!
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| Chloe speeding up Allie's feeding - apparently the medical pole didn't life the gravity bag high enough. Crazy kids! |
How are things going? I just found your blog and find it inspiring. Our son has hypotonia and cannot eat high enough volumes to support his required calorie intake. He was diagnosed as failure to thrive at 3 months and received a g-tube at 6 months. Shame on the doctors for giving us the runaround for this 3 month period while they tried to figure out what was wrong. It was a disgrace. Our son was wasting away in front of us. We eventually changed hospitals and they found out he was aspirating withing 24 hours.
ReplyDeleteHe's now 13 months old and has the MIC-KEY. We still do not have a diagnosis. All metabolic & genetic testing has come negative. The doctors suspect his problem is neurological in nature, but the MRI, spinal tap etc, revealed nothing. We are left in the dark.
Our son continues to make progress with his milestones and is only slightly delayed. But he wont eat more than a few pieces of food at any given time. Our first weaning failed and we are now still 100% tube feeding.
Even with our feeding therapist, there is little to no support structure for parents with kids that have feeding tubes. Keep up the good work on the blog and thank you. It helps us realize we're not alone.