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Tuesday, August 27, 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 likelihood of improvement of your condition. Custodial Care Services also means those services which do not require the technical skills, professional training and clinical assessment ability of medical and/or nursing personnel in order to be safely and effectively performed. These services assist with routine medical needs and are to assist with activities of daily living. Custodial Care Services also means providing care on a continuous Inpatient or Outpatient basis without any clinical improvement by you. Respite Care services means those services provided at home or in a facility to temporarily relieve the family or other caregivers (non-professional personnel) that usually provide or are able to provide such services for you. Custodial and respite Care are benefit exclusions based on the information provided, the members care would be defined as custodial, and respite care, since the caregivers can and have been trained to provide the care, and the request of the care appears to be for the relief of the caregivers. Skilled nursing visits are in benefit and are available on an intermittent basis for clinical assessment of the member, caregiver teaching and/or training. The skilled nursing visits can be provided, if requested by the treating physician, are determined to be medically necessary, and do not exceed any benefit limit. 

This was shocking to us, with everything Ian has going on medical for them to actual say it was for our respite or  convenience, as well as not seeing improvement, really ....so I set out to write an appeal. It was frustrating to me that I actually had to find the time to write one but I knew I had no choice.  Yes, Ian had Medicaid and they would have picked up the nursing services. However, in order for them to take over an appeal had to be done. I wanted to win the appeal as Medicaid should not have to pay, our primary insurance should be paying. Well the doctor who reviewed the appeal agreed and over turned the denial....nursing services approved until August 2014.

Sunday, August 18, 2013

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. 

Ian with the envelope which had our tickets. It says FIRST PITCH
Our family and some friends along with some Casey Cares Staff who came to watch Ian.

Waiting on the field for the FIRST PITCH to actually happen.


The Bird on the field.

Ian with Daddy and THE BALL after coming off the field.
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 so clear when watching it on the jumbotron. 

My eyes filled with tears many times during the evening. While walking to our seats afterwards, a few people said nice pitch to Ian. Once at our seats, you could hear people saying things about he's the one who threw the first pitch. The same when leaving the game...it was great to see all the people cheering Ian on.

A very special thank you to all the people who came to the game to support Ian, to those who took pictures and video and sent them to us.

And the biggest thank you of all to the Casey Cares Foundation and the Baltimore Orioles for allowing Ian to have this honor.




Saturday, August 10, 2013

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 words...it 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 therapists..got 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 infirmary for dehydration; after a day of iv  fluids, he was good to go; however he asked to spend the next night in the infirmary...why you ask, because of the big screen tv. There was another stay in the infirmary for about 15 hours...for diarrhea (sorry if too much information). The medical staff, along with his counselor, Danny, did an amazing job taking care of him and keeping us updated.

We had our moments of home sickness, which got us some phone calls home. Happy mommy, daddy and Becca. After the first time, Danny knew what his face looked like when the home sickness hit and was able to manage it, sending us a message that they would be calling later. Knowing that Ian felt better after hearing our voices, made is feel better as well.

He has mentioned something about camp everyday since he has been home. We could not have asked for a better experience for him, especially with how  2013 started out.

Thank you to all of the wonderful staff of Camp Simcha Special, we are so glad you are a part of our village.

Friday, August 2, 2013

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 me...it does not matter how the white rock got there or why, I am here and can do anything I want....what do you see?