Showing posts from August, 2013

Appeal WON

It is still amazing what insurance finds to be custodial care....the end of July we got a denial letter for continuation of nursing services and as of September 22nd no more nursing.  The reason for denial, custodial care, to be exact it said that “Private Duty Nursing Service means Skilled Nursing Service provided on a one-to-one basis by an actively practicing registered nurse or licensed practical nurse. Private Duty Nursing is shift nursing at 8 hours or greater per day and does not include nursing care of less than 8 hours per day. Private Duty Nursing Service does not include Custodial Care Service. The use of skilled or private nurses to assist in daily living activities, routine supportive care or to provide services for the convenience of the patient and/or his family members is also an exclusion. Custodial Care Services means any service primarily for personal comfort or convenience that provides general maintenance, preventive, and/or protective care without any clinical li…

A Magical Night Full of Memories

Who would have thought we would have gone onto a major league baseball field, something few get to do in their lifetime. Well last night, thanks to the Casey Cares Foundation and the Baltimore Orioles, we got to do just that. Ian had the honor of throwing out the 1st pitch at the game last night, it was a magical night full of wonderful memories we won't ever forget. 

Actually being on the field waiting for the first pitch to happen was incredible. It was priceless when the Bird came out onto the field. Ian was happy to see him and the Bird was happy to see Ian as well. He was playing with Ian, winding his arm telling him to get ready for the pitch. For me watching Ian drive out onto the field was priceless, seeing Brian help Ian throw out the first pitch, hearing the crowd cheer for Ian when coming off of the field was beyond priceless...seeing Becca jump up and down, cheering Ian on, priceless. Seeing him on the jumbotron was incredible, his smile lite up his face...and it was s…

Camp Simcha Special

Ian has been home for less then a week from Camp Simcha Special and we are back into our routine. Many have asked "how camp was?" It is hard to put into was wonderful. From the ride in the bentley, the helicopter ride, the concerts, photography, woodshop, color war, seeing the men cross the finish line of the bike 4 chai ride (and having one of them give him his metal)...and I can't forget the wonderful staff.  Dropping Ian off on the 24th of July was hard, we had our meeting with the nurse, the head doctor, the head counselor, the respiratory a tour of the camp, helped unpack Ian, made sure his counselor was okay all of Ian's care. Then it was time to leave, Ian was ready for us to leave, his eyes said it all, "when are you leaving mom and dad"? After I kissed him good bye, I quickly walked out of the dining hall, not turning back because if I  would have I may have left him there.Ian did spend a little bit of time in the infirma…

A Photo Says What?

A photo can tell a 1,000 words. It won't tell the same story for everyone.  
The white rock looks out of place.  How did it get there? What went wrong in nature for this to happen? We will never know. For me, I look at this and think of Ian, what am I talking about. ..the out of place rock. ...the out of place letter in his DNA which causes VRK1. How does he feel when he is some place, I hope not out of place, we try our best for him not to feel that way. Imagine sitting around watching others do things you used to be able to do or want to do, how would you feel. Out of place, Ian asks to do something and we figure out a way to make it happen, for him not to feel out of place. For him to feel like he can do anything. So what does this photo really say to does not matter how the white rock got there or why, I am here and can do anything I want....what do you see?