BUT, she had a blast playing with it at lunch time today. Rubbing it in her hair, on the high chair etc.. We are giving her food at each meal to "play with" in hopes that some lands in her stomach. The first step in trying to wean a child off of a G-Tube is to let them see how fun food is. (At least this is what the Feeding team and Speech Therapist say) I can't decide if I should wash her hair every time she eats or only when we leave the house? She flattened it down pretty well with the yogurt today. Had a bath 3 hours earlier. It has been over a month since we have seen a seizure, except for when she had a fever of 103.9. She is also medication free. She had an Upper GI and they gave the go ahead to start the feeding process. We were told it is going to take a long time to get her off the tube, but it was well worth it to get her back to a healthy 14 month old. She continues to learn new things every day. Language is her strength. Eating and lower body physical movement, not so much. We have everyone we can working on it though. Two speech therapists and a feeding team.
Here she is after playing with yogurt and flattening her big head of hair down. If you listen closely you can hear her saying all done at the end.
3 comments:
I love that girl! She is so darn cute! Seriously, she looks like a cherub.
I am so happy that I found your blog. My son has been diagnosed with benign myoclonic epilepsy as well. However, he doesn't seem to "fit" the clinical picture- like your little girl didn't. I'd love to chat or email sometime. Do you mind emailing me or becoming facebook friends. I'm sorry- I don't want to "stalk" you- but I would love another mommy to talk to about this. my email is heatherdixonlowe@gmail.com
My facebook account is Heather Dixon Lowe in Denver, CO
Thank you and God Bless!
She's gorgeous and always brings a smile to my face!
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