Sunday, June 28, 2015

A Life Update

   Life for our family is intense right now. In fact I can't remember when it was last slow. After thinking really hard I think that it may have been last August, right before my first hospital stay.  I am on auto pilot right now trying to conserve and just get by. Here is an update...
    The verbose one finally has an appointment with an ENT, July 10th. She has been having a harder time hearing lately. So, we are very anxious to have a game plan set up.
   We had her birthday party yesterday and it was good! There were fifteen or sixteen kids there once you add on siblings. It was mostly class room friends. It was sweet to see just how close they all were. It was a sensory overload for my son. So, he hid in he room for the most part. I knew the night before the party that I had over done it. I pushed thru and by last night I couldn't walk without off the charts pain. Today I have to be sitting with my feet up all day in hope for a normal day tomorrow.
   My son has been having a hard time still, we are just riding the storm. Now that the birthday party is over I am going to switch my shopping to days when he doesn't have to come. It is really hard to see him in pain. I have a feeling that his future might include a cabin in a small town. That is where he would be the happiest. We have begun the process to have him institutionally deemed. It is something that all autism families should look into. It will make it so that once my son hits eighteen he will be eligible for State assistance if he is unable to work. It made me physically sick to make that decision. But, I know that I can't let my own pride hurt him in the long run. Some of his disabilities that are in addition to his autism may make it so that he is limited as far as working and driving are concerned.
   The husband is currently working two hours away and coming home every night. It is already starting to take its toll. He is doing the four hours of driving six days a week on top of ten hour work days. They are in the process of setting up a camp spot closer for everyone to park their camp trailers. When that happens we will be spending part of the week in the mountains and part of it at home until school starts again.
   I am in a holding pattern right now. I am on a steroid to up my blood pressure. It really sucks and I tried life without it. After four days I went back on it. Having super low blood pressure is really hard. My cardiologist used the word "chronic" which made me cringe.  I hate medication but I don't trust "natural" remedies. I am doing everything nutritionally that I can . The last doctor that I saw felt that it is viral damage that may of may not be permanent. If I heal it may take years. I will have to just do what my body needs and be patient.
   I guess that about wraps it up! Our little family into a not so little nut shell.  I guess that you can tell by the length of it that it couldn't fit in a normal status update!

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