Disappointed

I will check out the YMCA and CRMC Fitness Center as was also suggested. Yes, Health Advantage is my primary through my husband who is with the State.  I am very disappointed in it for many reasons.  One of the benefits of being a State Employee has always been good insurance (sure isn't the pay) but unfortunately that doesn't hold true anymore. Thanks for the words of encouragement, Alice

Hi Alice, I hope you don't mind me asking, but what is wrong with your 2 special needs children?  I help take care of my 20 year old sister who is profoundly mentally retarded, uncontrolled seizures (not epilepsy, and drug resistent), low-muscle tone, scoliosis, you name it, she was given it all at birth, but is still a blessing and angel.  If you don't feel comfortable talking openly about your kids on the board, you can message me privately if you wish. 

Sykoeve, After writing my long emotional post, I almost forgot to tell you. . .Thank You for being such a good sister. . .your sister might not be able to tell you so I am saying it for her.  You are an angel too!  So many are abandoned, literally and figuatively because they are not what someone else has decided they should be. I believe there is a reason for all this suffering of innocents.  I havent figured it out yet, most likely never will. . . I personally, just cant believe it is random and/or purposeless. Does your sister go to Children's?  If she does or did, I was wondering who her neuro is?  And if she goes to the Habilitation clinic. Alice

I don't mind talking about my kids at all . . . I sorta consider it my duty to inform about and advicate for children with disabilities.  There is so much ignorance and misinformation. Corwin my eldest was born normal, neuro-typical as the lingo goes.  At 18 mo, he contracted two common childhood viral illnesses (fifths disease, and hand, foot, and mouth).  Just days before he got sick he received routine vacinations.  Days later he began having seizures (it took me while to figure out they were seizures because they were a nonstandard type).  I told the doctors, they poo poo'd me off.  A few days later I noticed that he was talking less, and falling down all the time.  That night he had 16 seizures, my husband went with me to the peds that morning and demanded a work up at Children's Hosp.  In the ER there they told us he was fine and I was a standard over reacting nurse/mother.  As we were being discharged a neurologist came in and saw what I was calling seizure and everyone else was saying was nothing.  To make a long story short, we spent ten days in Children's, had a million tests and was told our son had viral encephalitis of unknown origin and now had viral brain damage.  The last time he called me mama was during that hospital stay. Corwin is labled as profoundly autistic (regressive autism - meaning he wasn't born with it).  He is almost 12.  He is like a one year old in a 12 yr olds body.  He runs, and climbs and gets into everything, but doesnt understand danger or meeting his own needs.  He cant talk and isnt potty trained, drinks from a sippy cup and eats finger foods.  He likes to run away and would go with anystranger who offered him a hand. He is loved very much. My other son, Kieran was a suprise at 37.  We had not planned on more children because Corwin's care is so involved.  Kieran was also perfect at birth.  On April 4th, 2004 around 5:30 pm the sunshine of our lives drown.  It is estimated he was under water less than five minutes when I pulled him from the above grown swimming pool that was suppose to be oh so safe and he couldnt get into.  (I had taken the garden cart around front to my husband and in the time it took to unload it, Corwin had climbed onto the pool cover and collapsed it.  He can swim like a fish and could stand up in the pool.  Kieran most have been watching with his hands on the rail, because the cable holding the cover flipped over the edge and caught his wrist dragging him in.) I did cpr (as a labor and delivery nurse I was NALS certified and had coded many a baby), something noone want to have to do on their own child.  The EMTs got his heart beat back on the way to the hospital, from there he was life flighted to Children's.  He spend 14 days in PICU and 3 mo on the rehab floor.  We were told he wouldnt live.  When he did, we were told he would be a vegetable all his life.  We left the hospital with little hope.  Today, after many treatments that were and are "outside of the box" so to speak, he is a happy five year old with normal intelligence but whose motor centers were devastated by his hypoxic brain injury.  He presents like as a spastic quad (a person with cerebral palsy that effects all limbs, and make his muscles very tight).  He tries to talk and something we can understand.  He is wheelchair bound but can use a gait trainer (think baby walker) but has no functional use of his hands.  He is in kindergarten (40% regular class 60% contained classroom).  We were told he would never eat on his own.  He has not used his feeding tube in two years (he has to eat pureed foods and thickened liquids) .  He got the feeding tube removed last month. Well thats the short version of our story. Thanks for letting me share. Alice