We had to cancel our appointment with the dietician because our insurance only covers a dietician if the patient has diabetes. Dr. P. sent them a letter so hopefully we can override that. I almost flipped out on the lady from our insurance company. She told me her daughter needed braces and she thought the insurance should cover it, but she learned that sometimes we just have to pay for things we feel are important, but might not be. To be honest, I told her thank you and hung up on her, but what I really wanted to say was..... well, that doesn't really matter. I have to remember that Ammon's disease is really rare and people don't understand that it is life threatening. The only thing I can do is adjust his diet. The dietician told me about some MCT oil and Dr. P. talked to another patient of his who is having success with some protein capsules - so we're going to try those. I've been using coconut oil and I want to look into some other suggestions we have gotten recently (the chia seeds!). My point is, I think we'll be fine. Ammon worked with the speech therapist for a year and a half and she taught me a lot about food and I think that should come in handy. Plus, one of my good friends is a dietician and had some great advice so I feel comfortable trying to manage.
On the bright side, Ammon's albumin levels are up! He is up to 2.7 (he was at 2.2 two weeks ago). Normal for him is anywhere between 3.1 and 3.9. Albumin is a protein made by the liver. His blood test measures the amount of this protein in the clear liquid portion of the blood. Dr. P. said sometimes the liver gets very big with this condition, but Ammon's seems to be close to normal. We won't do labs again until the first of May when we see Dr. P. again.
For whatever reason, this new challenge has been a little harder for me than the surgeries. I keep remembering that each time Ammon almost died previously, Heavenly Father kept telling me he has a plan for Ammon. I have been thinking about what significant changes/ effects Ammon has had on us, and those around us - what lessons are we supposed to learn from the experience and all of that. I'm not ready to write about it yet, its just something to think about.
Yay! Someone else who cares! I have been a little discouraged since my less than friendly conversation with the case manager at our health insurance company yesterday, but today the sweet, charitable dietician called and offered me a free phone consult for which I am VERY GRATEFUL!!!! This is going to be a little tougher than I thought, but at least I have some better guidelines. At least 30 grams of protein per day (which includes what he gets from his milk and carnation so he is already getting this), plus we are going to try protein capsules, MCT oil, and a very low fat, low sodium diet. Ammon is to be on a strict schedule and can only eat three meals per day, plus two snacks and there should be at least 3 hours in between meals (the speech therapist had us doing that as well, but we have become very permissive lately - especially because we have been trying to stuff him with extra protein). She also suggested seeing the speech therapist again because he is older and can communicate with us and we might be able to make some headway now with his pocketing issue.
I want to reference a helpful protein site: http://www.littleleakers.com/protein.html
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