1/14/16

OK I didn't mean to disappear completely


Things have been hectic and lets face it, I haven't been in the best of moods. I could pretend that I wrote all my blog prompts like a good little girl, or I can be real and admit that I live in the real world dealing with very scary things. Sometimes my priorities have to be my family. 


Just to update:

  1. It looks like Mom will be enrolled in LIFE of Armstrong County on the first of February. It will give her a doctor since her's bailed on her after 20 some years right before Christmas. And the additional benefits will give her a much better quality of life. She'll be getting out of the house weekly (a few times a week) and going to a community center that will allow her to interact with other people. It will get Food Network off the TV 24/7 here at home. They'll help if something happens with Jamey so shes not left to her own devices until Dad drags himself out of bed every day. 
  2. It looks like we might be dealing with Pseudotumor Cerebri with Jamey. His PCP has referred us to neurology on top of the headache clinic. It also looks like the previous one (that someone said he didn't have) caused some permanent damage to his optic nerves. Thank goodness not bad enough to blind him, but enough that I'm concerned about waiting a full month to get him into Neurology. 
  3. He'll be starting two new medications with in the next week that I have debated over with his doctors for quite sometime. One will have him getting bimonthly liver enzyme blood work. He'll start one tonight. The benefits of it right now would be increased appetite (he's eating hardly anything) and it could control the headache and his nausea. The other, we'll wait a week to start. 
  4. We're down to only one more appointment this month. Possibly. It is only the 14th. We never know whats going to pop up. 


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@TerrorMom

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I guess I'm actually supposed to fill this out. I'm a passionate medical mom of a 19 year old liver/CRPS patient. My goal with my blog is to raise awareness for his conditions. And to hash out my feelings about it. There are a lot of raw emotions when your life is suddenly stalled by any illness, let alone your child's illness. 

I'm also attempting to either "find myself" or "remake myself". So much of my time and energy goes into caring for both my mother (end stage COPD) and son, along with trying to be Mom to my younger son and a wife, that most of the time I feel lost. I tend to put myself on a back burner and right now I'm burning out. 
 

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