I can't believe I haven't told you about this yet. As I mentioned a few posts back, I was taking Bryce down to meet with Marsha Dunn Klein. Well, we went and the visit was amazing! We met with Marsha and Ellen, the nutritionist that works with her. We talked for a couple of hours. We found out all about doing a blended diet and set up a plan to get Bryce moving in that direction. While we were there, Marsha even asked me to write up our story about feeding Bryce his "green love" (green smoothies) and the difference it has already made in his health. I still need to write that up! She is planning to use our story in her pamphlet that they hand out at her lectures. She lectures all over the world.
Marsha also told us that of all the places around the world where she teaches people about using a blended diet with tube fed kids, Phoenix has been the most difficult to get anyone to listen to her...as far as doctors and nutritionists. They aren't even open to talking to her. She said she believes it is because some parents up here have tried a blended diet on their own (because they do not get the support from the doctors here), their child has had problems or become more sick, and then they go back in to the GI doctor for help. The doctors have seen these kids who have become anemic and had other problems and blame it on the blended diet. She said that she really wanted to work with us so that we could be a success story and help the doctors here see that it is a good thing...if it is done correctly and with supervision. I am all about that. I have known all along that I did not want to go out on my own with this one. She of course fell in love with Bryce and seems very excited to help us make this work. I came home very excited to start the process.
The first hurdle we had was the appointment with our GI doctor. I love the GI doctor that we have right now, but I knew that he was not thrilled about a blended diet when I first brought it up a few weeks ago. It took him a while to even be okay with me feeding Bryce a green smoothie. So, I wasn't sure how he would take the news that I was now also working with Marsha and her team, and that I will be working toward a blended diet for Bryce.
We went in to the appointment and Bryce had gained a bit of weight which was good. Dr. McOmber checked him over and said that everything looked good. We discussed the amounts of formula and water (and green smoothie) he is currently getting. Then he began to talk about where we wanted to go as far as his feedings over the next few months until Bryce's next appointment. That was the time to let him in on our little plan. I told him that we had been down to see Marsha Dunn Klein and he instantly rolled his eyes. I tried not to laugh, because that was pretty much the reaction I was expecting. I said, "oh, not good, huh?" Then he told me that it isn't that he has anything against her, but just that she is not a medical doctor and he thinks she often pushes too fast. He said that he would have to show our plan to his nutritionist and make sure they think it is okay. I assured him that I want to continue to work closely with him and the nutritionist...along with Marsha and her team. I don't want to cut anyone out. I want to do what is best for my son and keeping track of how he is doing in all areas is my number one concern. I am totally aware that this may not work for Bryce and if that is the case, we will go back to what we have been doing for the past 3 years...but I have to try!
Dr. McOmber still seemed concerned, so I showed him the plan for our first step of transitioning Bryce to a BD. He looked it over, and started to get excited. See, our first step is to just get Bryce off of his night time feedings. To create more of a normal "eating" schedule for our 5 year old son. We didn't mess with the number of calories or add any more real food to the plan...yet. He totally changed his attitude about it and said that it sounds like a great idea and at this point he doesn't even need to talk to the nutritionist about it. He will want to once we start adding food in, but for now, he was very pleased with what we are doing. That we are taking it slowly. He wished us luck, told us if we had any questions to call. And then he said something that made my day. He said to tell Marsha that if she ever wanted to talk to him about what we are doing, or to ask any questions, to just give him a call! YES!!! Success!
I was so excited! I meant to call Marsha right away, but still haven't. We go back down to meet with them again a week from Friday. I will take Dr. McOmber's contact information and let her know that he is now on board with what we are doing and very much wants to be a part of it!
It has not been easy changing Bryce's feeding schedule around. It has had to be done slowly and I had to watch for signs of intolerance or aspiration. He has had a couple of challenges along the way, but for the most part, he is handling the change well. He is now given 4 "drinks" of water a day that take about 10-15 minutes each time, one serving of "green love" and 4 "meals" through the day which take about 40 minutes to get into him, plus the prep time. There were a few days that I was very overwhelmed by it all, but things have smoothed out a bit and we are finding our flow. Having him on Fall break and at home has helped a lot. Hopefully I will be able to get his Para at school on board pretty quickly once he is back. I'm not worried about that though...they are great at his school! It's a lot of work, but I honestly think that it will all be worth it for him.
I have more good news from today, but it is late. It will have to wait until tomorrow. Thanks for reading and thank you always for your prayers! Good night for now!