Wow! What a difference!

On Monday we had an appointment with Evan's genetics team..the geneticist, dietician, and genetics counselor.  JR and I had talked about all the fighting Evan has been doing with the bottle and agreed we needed to work on getting him to eat more food so he wouldn't have to drink as much formula.  Like all babies, he still needs his formula and like all MSUD patients, he still needs his formula. We're not talking cutting out formula, but we are talking about allowing him more protein from food instead of from formula which also means he doesn't exactly have to have 32 ounces of formula per day. 
We brought this all to the attention of Evan's dietician and worked together on a plan. The plan is to allow him a larger portion of his protein from foods and to decrease the enfamil in his formula.  Also, she assured me that he didn't have to have all 23 ounces of his MSUD formula as long as he got his enfamil and his food protein. He still needs his MSUD formula, but it doesn't have to be exactly 23 ounces of it. 

So..we started the new plan yesterday and he did well. He had cereal in the morning with a 6 ounce bottle, peas at lunch time with a 6 ounce bottle, and then 2 more 6 ounce bottles. Today, we accomplished what I was hoping....3 meals of food and 4 bottles. (Well..I am assuming 4 bottles because he is going to need one before bed and it's only 4:00 here).  So far he has eaten his allowance of leucine by food. He had cereal for breakfast, peas for lunch, and just a little while ago he had squash.  He's eaten all of these before, but not on the same day and definitely not 3 meals of food in one day! Boy what a difference! He WANTS his bottles after his food! He is opening his mouth for the spoon and then later for his bottles. He's hungry! :)  He has had his 3 meals, 2 6 ounce bottles, and one 8 ounce bottle, and he will have another bottle tonight before bed. I am SO thrilled because for the last 2 days feeding him has not been a fight. It feels almost... dare I say it....normal!

If Evan didn't have MSUD I probably would have been able to get him eating like this a lot sooner. I wouldn't have been pushing the formula the way I was and I would have pushed more foods sooner. However...he DOES have MSUD and I have been doing what I am told. Now, I am finally listening to him and working with the doctors to give him what HE wants, not what they want him to have. Of course he is still only getting what he's allowed to have, but he's getting it in the way he wants it, not how WE felt like giving it to him.  It's so amazing now that we are listening to his cues more! :)

To update on the transplant, we are still waiting on insurance approval. We got the letter to have his live vaccines given to him next week and shortly after that he should be listed.  Please keep praying that the insurance approves his transplant!