Weight gain in cerebral palsy babies

At around 2 months old, Willow started spasming and we knew she had cerebral palsy. Around the same time her weight-gain velocity also started to slow down.

At 4 months old, we had the cp diagnosis, her weight gain was tiny, but she was still gaining!

At 6 months old she stopped gaining weight. That’s when we moved to a blender diet for two half feeds a day, then three, she was having a few spoonfuls of what we were having whizzed up with breastmilk.

It’s been a week now and we got her weighed at the clinic today, expecting a weight gain, she feels bigger! She’s actually lost a little weight, not good at all.

Our lives revolve around trying to get enough milk into Wriggles, it’s heartbreaking to know that that’s not enough.

The doctor has said we should look at a j-tube and pump so food can be trickled in, as a temporary measure while we wait for her gastrostomy. They also said we should look at fortifying her milk. We spoke to her dietician and I was so pleasantly surprised. She’s really on board with the blended diet and has even ordered the book I recommend, Complete Tubefeeding. She’s given us some ideas to get more calories into Willow, basically olive oil with each feed! The milk fortifier is just sugars, whey, protein and vitamins. We can give her that with real food, the dietician agrees.

So, over the next three weeks that’s what we’ll do. Operation pork-her-up starts here 🙂

Oh, and our gp has written the medical note for Vitamix so that’ll be faxed tomorrow and hopefully a reconditioned vitamix will be on it’s way to us soon!

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