Food, food, food!

If only Frankie loved it as much as I did! Hopefully someday soon!

Over the last several days, Frankie has taken to eating a little better. Well, for him, it's a huge step. I'm very hopeful that this is a step in the right direction! About a month before his asd repair, I took Frankie to Children's for a feeding evaluation and was not happy with the outcome. It just wasn't what I had anticipated and I was not impressed with the staff. I must say, I was pretty heart broken because we do everything through Children's and I was pretty bummed that this is one thing I'd have to find elsewhere.

Today, I took Frankie to Cardinal Glennon (another children's hospital in Stl). I felt like I was cheating on Children's, but hey! You gotta do what you gotta do! I was super happy with how things went today! The ladies were so very nice and offered some great suggestions and also reinforced all the great things we already do for Frankie! It's so nice to hear sometimes that you are doing this right! This is going to be a slow moving process for Frankie but he is finally showing signs of interest and this is a window of opportunity that we have been waiting for and we HAVE to take advantage of it! We made a couple small changes to Frankie's feeding schedule. I'm going to implement them daily and we have a follow up appointment on Jan. 3rd to check his weight and see how this is working for him and make adjustments as needed.

Tonight, I sent out an email to Frankie's wonderful First Steps team. These are the gals that come out to the house and help with Frankie. Ellen is Frankie's occupational therapist who comes weekly. Angela is Frankie's physical therapist who comes twice a month and Nancy is Frankie's dietitian who comes monthly but I speak to frequently through email, text, phone. In the email I addressed how Frankie has been lately (his Ot has seen it and agrees!) and my concern. My concern being the amount of time we see Ellen. Since we are in the "now or never" stage, I think it is best that Frankie gets bumped up to twice a week with Ellen until he gets the hang of things. Once I get an initial email reply, I will also suggest reducing pt down once a month since Frankie is doing so well. That may not happen until March but I think his ot visits need to be increased asap.

Overall, I was impressed with Cardinal Glennon's feeding team today and I'm praying HARD that Frankie is making his first big steps to oral eating! He's taken to a few foods recently:
-club cracker
-peanut butter
-thin sliced turkey
-cheerios

He eats these in small amounts but they are amounts!

Thanks for all the positive thoughts, love, support and prayers! FRANKIE CAN DO THIS! We can't wait for the day that we say GOODBYE to the ng tube!