Our 170 TH Blog...

Hello friends,
This is our 170Th blog-post. Its hard to believe it has been that long.
You probably know this that I have been blogging not as frequent as before. The truth is ,there is not much to wright anymore. Even know we are still optimistic many other feelings are on the way now. Foe example - mothers guilt not being there 24/7 to care for Sammy around the clock,constant worry about administrations of medications ,oxygen equipment for breathing and tube feeding requirements while at work, not being able to concentrate ,constant fear of something happening while mom is at work. Will the other person be able to make right decision ?! I know in my heart that Mom is the only person that can make child fell better just my touch or kiss. Sammy knows when I'm near him -his breathing gets deeper and lips move as if he is trying to say something to me. I hope that I can be near him as much as possible to ease his seizures that some days are ,so painful and frequent.
Soothing his pain and comfort Sammy is our challenge everyday now. Its not hard to recognize new symptoms and inability to move at all by him self or to hold his head while sitting in wheelchair. Looking through pictures/ even from few month ago /realization of Sammy's decline is getting to be too much to handle .Rapid change and exhausting all possibility's to stop this decease leaving us wondering what else can we do to help Sammy.
This is our update our Dear friends.
Have a great night, I know we will try ,Sammy and Mom