1/23/19 - Heath Time

Yesterday was a long day and we just kind of re-cooped today. I had the best bath ever. Just played and splashed and soaked in the warm water. Loved it! So, yesterday, I went into my appointment with my G.I. doctor…remember? We talked with her and my dietitian about moving forward towards getting to my goal of getting this tube out (my feeding tube) in 2019. Since I have been tolerating G (stomach) feeds and also tolerating purees, too, we decided to make a food change and plan to get the J (intestines) portion of my tube removed. This means I will be scheduled for a procedure to remove my G/J tube set up completely and then the care team will “install” something called a “button”. Right now I have something called a PEG tube. It’s a pain in the butt, but it’s very secure. The care team will need to put me under general anesthesia to remove it, unfortunately. The new Button G port, however, is very easy to put in. It’s a device that is flatter and lies against my belly. It’s easier to open between feedings and medicines. It should make life alot easier for us. It will also make tummy time, crawling and travel much safer and more comfortable for me. So, we are really looking forward to the switch. My doctor said she was so happy with my progress with eating and tolerating foods. She said she didn’t expect this to happen so soon and that I defiantly work at my own pace; “Heath Time”. My doctors say that alot. Ha, ha. So, as for the food change, now that I’m almost one year old, I should be getting more solid/whole foods. Being that I’m not quite there yet orally, I need to still teach my body to accept those things, so we are switching my formula milk feeds to getting something that is complete nutrition whole foods. It’s called Nestle Pediatrics Compleat Organic whole food blends. It comes in packets and is in a puree form so we can get it to my tummy. I’m still eating by mouth and doing well, but this will ensure I’m getting all of my calories. I also started a multivitamin call Poly-Vi-Sol by Enfamil that is for babies transitioning from formula to whole foods. So, I’m all set up and ready to grow! -Heath

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