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High Levels

So today's appointment went just like all the others pretty much. The nurses ask which arm is the better one to draw blood from and I say "they normally use his hands because they can't get enough blood from his arm." Did they listen...no of course not. Why did they even ask. So they poke his left arm and nothing, not one drop of blood. They dig around in his arm hoping they can get a vein and still nothing. So what do they do...try the other arm. Seriously, did they even listen to what I said. The right arm gives them blood but every time he moves his wrist it stops giving blood. So they think they have enough blood and they take it away to run test. Then the doc comes in. She asks her questions and then says that the results they got were the highest numbers she has ever seen but...(I knew there had to be a but)because they had so little blood they are not sure that the test results are really accurate.
So here is my soap box time (if that wasn't already). What Rex has is suppose to be incurable. No one knows why he has it and there is only maintaining it. So in the past year his levels have consistently gone up every time we check them so why would this one be any different. My personal opinion...Rex has a heavenly Father who loves him and it slowly healing his body as well as guiding Miah and I to make the right choices for him (Like no vaccines and the foods he eats). We get criticized and judged for our choices but I have to tell you I really do believe that making these decisions is allowing Rex's body the time it needs to heal itself.
So his levels last time were 11.8 now they are 12.8, I believe the normal range is 14 to 16. We will see how things keep going but I'm trusting My God to heal the son he chose to give me.

Comments

  1. okay so because it is higher this time what did they say?
    What was the point of the check up just to make sure he was okay or to make a decision on a procedure or something?

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  2. I have to see the hematologist yearly (as long as nothing is wrong) to just have a basic checkup. They run blood levels and some other routine test. They expect his levels to stay about the same each time they take them and to not get any higher because higher means that he is getting better which isn't suppose to happen. As of now there is nothing they can do to help him, we just have to keep him stable, and they don't know why his levels keep getting higher (higher is good in this case). My pediatrician doesn't say anything when they are higher but my hematologist says that the test results had to be wrong, or it's because he just got over a cold (which actully should mean they are lower). She comes up with anything besides the fact that he seems to be healing himself. I'm been consisdering trying out a new one but the problem is they are specialist and I have to get a referal for the insurance to cover it. Not sure what I'm going to do but I do know from what they have told me and what I have read myself on the disorder that he is getting better which is not suppose to happen.

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