This last week with my babies….more symptoms of facs syndrome

This last week has been so hard since hearing the news of Erin being partially deaf.  Not for one minute did I expect them results when she had her hearing test.  Even though hearing loss is a symptom of FACS SYNDROME, I didnt think it had affected any of the children.  I just presumed it was Erin being Erin and being loud.  Since hearing the news I have decided to take sign language lessons.  Even though Erin will be able to hear when she get her hearing aids, I still think it will do some good for her and also me to learn some of the signs.  All the children already know some of the signs through the fabulous Mr Tumble, so it will just be an extension of that.  The hard thing at the moment is with Erin being loud, and she obviously cant control it, Luke with the autism is annoying him.  She is too loud for him, so its to the point where Im having to kind of separate them.  Im not liking this as they are brother/sister but to try and control the level of tantrum its what I have to do.

On Friday Chloe was taken into hospital to help her with a symptom of FACS which is to do with her waterworks.  Chloe is 8, and this has been an apparent problem for quite a while.  She was admitted in overnight and had to have a procedure done to test how much water she can store in her bladder, the pressure on her bladder and the flow of things.  The results was that her bladder is healthy but there is a worry as the problem is still carrying on.  More scans and tests are needed to get more answers as to why this is carrying on.  My 3 girls have this issue and yet again is due to FACS SYNDROME.

This week what with Erins news and Chloe being in hospital, I have been quite down.  FACS Syndrome has completely devastated our lives and affected each one of my 5 children in completely different ways.  I think why us??? I do believe things happen for a reason and if this has happened to help other children…then so be it.  People are in a lot more difficult situations than my family and I, and I am blessed to have such lovely children that I am proud of. I wouldnt change my life for the world


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