So, last week at the zoo Brett dropped our camera right on the lens and BROKE IT! So, we are without a camera. The really sad part is Friday marked the first day in Maryam's whole life that I didn't take a picture of her. That realization made me a little sad. My Great Auntie and Great Uncle said they'd loan me their old camera until we can get a new one. And my mom said we could use hers too. So, last night we got her camera and I'll be back to taking photos in no time.
Our weekend was good, we hung out with some friends, saw some family and stressed over eating, per usual. Maryam is putting more food than ever in her mouth, she'll try almost anything, its wonderful to watch! She takes a fork or a spoon and fill it with the food off of ANYONE'S plate (she's not picky about that!) and then puts it into her mouth and we get all excited.....then she slowly spits it all back out and starts over again.
One of the online groups I'm in is just for parents of tube fed children and a post circulated a few days ago of a clinic in Australia (that would cost upwards for $40k to go to) that has a 95% success rate! How amazing is that? 95% success of weaning an infant/toddler off a feeding tube. They also say that the best time to do it is between 12-18 months adjusted......well that's Maryam! Anyone want to donate $40k to get Maryam eating? LOL, just kidding.
There was also a post that circulated about a 60 our wean test. That would be 60 hours of not tube feeding your child and making any kind of food or drink readily available to them. So, when they get hungry, they just go to the coffee table, pick something up and eat it. We're not to praise them for their efforts or even acknowledge that they're doing it. Its just supposed to be something normal that they do. BUT, in order to even try a 60 hour wean, the baby is supposed to be able to swallow 100% of all food put into their mouth and be eating 50% of their daily caloric requirement....um yeah, we're no where near that!
Its just so frustrating to know that there are ways of helping her but for monetary reasons, they're outside of our grasp. And I know that OT is helping, I know that for sure...but I just don't think I can bare 1 to 2 hours a week for who knows how long and see such minimal results. And the worst part is, I do the same thing at home 3 to 4 times a day! I have Maryam sit in a high chair 3 to 4 times a day for at least a half hour, usually a whole hour and present food after food after food, texture after texture, taste after taste, sweet vs. salt, hot vs. cold, hard vs. mooshy....you name it, I've tried it!!!! But that doesn't stop the, "she'll eat when she's ready," "eating is over rated," "at least she's not going to be fat," "have you tried....?," "maybe do this...," or "I totally know how you feel, my kid won't eat....."
I've said it before and I'll say it again, I know those comments are all meant to try to help. Right now my heart and my brain are all on over drive trying to get my little girl to swallow more than just her saliva, water and tea. Everyday, every 3 or 4 hours my heart breaks a little more when Maryam turns away from a spoon, or drops the food off of the side of her high chair or chokes on a piece of food that gets stuck to the top of her mouth or wanders too far back in her mouth. And the most recent development....the tube association to being hungry. Lately as soon as she sees her feeding tube she knows its time to eat, she will follow me around and just wait for me to plug it in. And once the tube is in, she will hold the end of the tube out towards the syringe. I think this sucks. I have to find a solution sooner than later. And right now is the perfect time for her to learn to swallow! SHE'S INTERESTED IN FOOD!!! She puts almost all of it in her mouth! If its on my plate or anyone's plate for that matter, she wants to taste it! Its so frustrating, I don't know what else to do.
You all are probably SO tired of hearing about Maryam's eating issues. I'm sorry. Right now this is the biggest issue on our plate. Everything else, miraculously, has fallen into place! She's off of O2 during the day, she's walking, she's off of ALL her meds except 1 oral steroid, she's sleeping through the night, she's trying to talk, and she's a social butterfly. If we could get her to eat, our lives would be like that of any other family with a 20 (almost 17) month old! Ah, the dream.
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2 years ago