I have a lot of little oddities… one of them is I do not like it when someone says “Good Job” or if someone claps for me. If they do, I break into tears. See the link to the video below. I was 14 months old in this video. The interesting thing is other mommies of Costello Syndrome kiddos said their children did the same thing. So, it is just in our genes I guess!
Well, I am now two weeks into this newfangled diet my mommy came up with. She is still making up quite a ruckus every day using her fancy Vitamix blender. My blend today consisted of baby oatmeal, vegetable beef pilaf, pear, raspberry, spinach, potatoes, prunes, apples, apricots, blueberries, whole milk, coconut milk, olive oil, apple juice, Poly Vi Sol vitamin, prune juice, Miralax, cinnamon, cardamom, and ginger!
I am more constipated on this blended diet than I was on formula which is why Mommy is adding in prunes, prune juice, and Miralax. Us kiddos with Costello Syndrome are often constipated. It probably has something to do with low muscle tone in our GI tract.
I am still vomiting less with blended diet than I was with regular formula. And I am now fed only 5-6 times a day instead of 6-8 times a day. I don’t have to eat overnight either! I can tolerate more volume with real food. Mommy is also noticing that my hair is growing in thicker already and it is getting lighter and lighter by the day. I was born with dark brown hair like Daddy but it is more of a light brown or dirty blonde color right now. I am 13 months old.
They are also feeding me now solely with 60 mL syringes. I used to be fed from a pump. Now they put my extension onto my Mic-Key button and connect the syringe to the extension to feed me. The funny thing is they are getting the syringes from a squirrel store! They are supposed to be used to feed squirrels. I guess they work better than the ones they were getting from their DME (durable medical equipment) company. I guess I don’t mind. I like squirrels.