by Well, it’s official. AJ is no longer on formula! It’s been 2 weeks now, and there’s no looking back. We were blessed to get a medical discount on a commercial grade blender that allows us to blend and feed AJ table foods through his gtube. Today he had: chicken, salmon, jasmine rice, millet, kale, cranberries, strawberries, carrots and coconut milk – along with walnut oil, flax oil and olive oil and various supplements and coconut water between each of his meals.
A lot of his diet is based off of bone broth — watch this space as we will be reaching out to local friends and family with a request to help us by saving your turkey bones at thanksgiving time! His diet will grow and expand over time — just like any other kid, new foods require trial and error to see what he will tolerate.
He’s also ditched a piece of equipment thanks to his change in diet. He used to get half of his feeding overnight while he was sleeping from a pump with the other half of the food split between three feedings during the day. Now he gets four equal sized feedings total (one does happen while he’s asleep), and the pump is no longer currently being used!
Switching AJs diet (although a lot of work for mom and dad) has made a world of difference in regards to his GI issues already — he no longer pukes multiple times a day like he used to and seems to have even more energy than before. We have been working on constipation issues for quite some time though and unfortunately those haven’t resolved after the change in diet.
On Monday Aaron will be taking AJ in for a bariatric enema to check to see if there’s anything obvious going on in his lower digestive tract. He will also be getting an ultrasound of his legs to check for possible blood flow related issues as a result of stopping his lovenox and will also be getting labs done to check his hemoglobin levels as they were elevated and raised a red flag on our last visit. Monday will be a busy day for AJ!
Monday will also be a busy day for this momma who will be visiting the oral surgeon to have a busted tooth removed. Hopefully the recovery will be quick though as we are still expecting to be out at CHOP by Oct 12th – still awaiting final confirmation, and hoping we can get it quickly at the start of the week so we can plan travel…
I think that’s about all we have for an update for now! Thank you to everyone for all your thoughts and prayers as always! 💕
