What a difference a year makes. This time last year we were preparing to transfer our fragile little Levi from his four month stint at Northside Hospital to his new short-term home at Scottish Rite for his G-tube surgery. My precious sister Kyra came over to stay with Silas while I anxiously traveled to two hospitals in one day. I'd never believe just 365 days later that Kyra would be home in Heaven, I'd have another growing baby in my belly, and Levi would be weening his feeding tube! Let me repeat that last part because it is still fairly new-- in the last 24 hours Levi only used his feeding tube during his night feed!!!!!
After a disappointing visit to our GI doctor where Levi gained no weight and the doc wasn't thrilled I was cutting his feeds by calorie and quantity, (although I think that if he'd lived with us for a while he'd understand a little better.) we still saw great improvement in Levi's holding down his meals. Also, because he hasn't thrown up hardly at all in the last two and a half weeks, he has been more interested in eating and even swallowing crumbs without gagging (a miracle). SO... we went to visit the nutritionist at the Scottish Rite office yesterday, and to my thrill and surprise, she gave us a great meal plan (all additives to purees) and said that if Levi could take in 4-5 oz of food by mouth, then we didn't have to supplement with the tube feeds. And if all goes well and he starts gaining weight, we can talk about weaning his night feed! It's absolutely amazing. I cannot express the ease and joy it is to feed your child by mouth and not have to do a song a dance to get them to take a few bites, not have to force them to be sedentary for 45 minutes while the tube feed finishes, and not have to have your "throw up bucket" on hand wherever you go. It's glorious!!!!! So glorious that we made a special trip to Menchies, and Levi did a happy dance for you all.
There is no one person that deserves a pat on the back for this accomplishment. God answers all prayers in His perfect timing and in HIS own perfect way. Even though we still have a lot of hand therapy, physical therapy, speech therapy, and feeding therapy ahead, this has been a hurdle that will greatly ease our ability to operate in this world. Not everyone is so blessed to wean their feeding tubes or other forms of adaptation, and for that, I pray I never lose my newfound perspective and always have a hand in helping others.
We had a sweet trip to St. Simons for Father's Day, and I forgot to snap any photos except this one! We love our daddy more than anyone, and I thank God for each day we get to live this journey together.
Thank you for all your continued prayers, they do not go unnoticed!
~Weaning Buster
After a disappointing visit to our GI doctor where Levi gained no weight and the doc wasn't thrilled I was cutting his feeds by calorie and quantity, (although I think that if he'd lived with us for a while he'd understand a little better.) we still saw great improvement in Levi's holding down his meals. Also, because he hasn't thrown up hardly at all in the last two and a half weeks, he has been more interested in eating and even swallowing crumbs without gagging (a miracle). SO... we went to visit the nutritionist at the Scottish Rite office yesterday, and to my thrill and surprise, she gave us a great meal plan (all additives to purees) and said that if Levi could take in 4-5 oz of food by mouth, then we didn't have to supplement with the tube feeds. And if all goes well and he starts gaining weight, we can talk about weaning his night feed! It's absolutely amazing. I cannot express the ease and joy it is to feed your child by mouth and not have to do a song a dance to get them to take a few bites, not have to force them to be sedentary for 45 minutes while the tube feed finishes, and not have to have your "throw up bucket" on hand wherever you go. It's glorious!!!!! So glorious that we made a special trip to Menchies, and Levi did a happy dance for you all.
There is no one person that deserves a pat on the back for this accomplishment. God answers all prayers in His perfect timing and in HIS own perfect way. Even though we still have a lot of hand therapy, physical therapy, speech therapy, and feeding therapy ahead, this has been a hurdle that will greatly ease our ability to operate in this world. Not everyone is so blessed to wean their feeding tubes or other forms of adaptation, and for that, I pray I never lose my newfound perspective and always have a hand in helping others.
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| Our first crops! |
Thank you for all your continued prayers, they do not go unnoticed!
~Weaning Buster
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