RIP our dear friend Rocco

This is a really hard one to talk about but an expression of love that needs to be told. For over 10 years we have been dragging our Patrick down to the Elks to sit and watch while we cater food just to pay the most basic of bills; utilities and food never knowing if we will be able to make ends meet. Our wonderful Elk family has protected us financially and emotionally throughout our 14 year struggle and has never let us down. One specific Elk has been an emotional rock for me and Patrick; our favorite; our Rocco.
A mere month ago on 6/15/11 our beloved Rocco passed away after complications with respiratory infections and heart disease. Every weekend we needed to cater at the Elks our buddy Rocco would entertain us, help us, and make Patrick happy with his funny hair hat. My last conversation with him was asking him how to work the cash register at the Elks because I was alone at the club. I didn't know until he told me he was in the hospital. He laughed and told me my drink was on him and not to worry about it. I never thought this would be my last conversation with my buddy.
Patrick has been to a few funeral but always in his wheel chair and left in the back of the room when each of us went up to pay our respects. When I drove into the parking lot of the funeral home I told Patrick this time it was way too important and that this was about his buddy. We parked the car, we walked into the funeral parlor, and for those that do not know Patrick can not walk alone; he has no balance skills but is as strong as an ox. Patrick will only walk if we are holding his hand or arm.
Patrick literally dragged me in, walked directly to the casket and stopped, stayed there for a while, turned, walked to Rocco's wife Lorriane where we talked and then returned to the casket before we walked out.
Patrick got it! He knew his buddy was gone and he felt what the rest of us felt. Even though Patrick can not communicate or walk independently he knew his good friend was gone and he knew how to pay his respects like anyone else. We should all learn a lesson from this and try to understand our strenghts and shortcomings.
Though his physical functional skills are not there his emotional and comprehensive skills are. Never assume, never think that you understand better than someone with a disablity. They will always surprise you:)

Parent and Patrick progress:)

So much has happened so much needs to be said! To start since we left Ecuador in November a major miracle has occurred. When Patrick turned three the school board convinced us Patrick should attend school. Very quickly we learned of another aspect of his vaccine injury and why he hadn't gained weight for three years; Patrick has an immunoglobulin A deficiency. Immunoglobulin A coats the digestive & respiratory track like a mucus which protects the tissue linings. We found out about this part of his injury and spent the next 6 months in and out of hospitals, a stomach tube, bleeding ulcers, severe constipation and many a bad day. But after this last trip to Ecuador we were given a miracle.
Because of internal upper gastric bleeding Patrick has always had black bowel movements. Within 24 hours of his treatment Patrick had bowel movements of enormous size and normal color. When we returned home a few days later the hole where his stomach tube had been oozed and we were petrified. This in fact was healing!!! For the eight months since his second treatment Patrick has had no sign of upper gastric bleeding and has had NO CONSTIPATION. To your normal parent the response is so what? To the parent of a handicapped child that bites his hands, refuses to eat, and screams in pain it means everything. At first my husband kept asking is there something different in his diet? And I kept saying no praying this was permanent but afraid to think so. After 8 months I know this is permanent.
People expected Patrick to come home and run or talk. I am satisfied with him being comfortable and laughing when he goes to the bathroom. We spent 14 years with suppositories, enemas, crying, and torture. Not so long ago Patrick accepted that the suppository would make him feel better and didn't fight back. Today he has a bowel movement and belly laughs afterwards.
For most this is an awkward conversation but for the parent of a child that doesn't have the physical capability of the most simple bodily functions it is a miracle. Quality of life is everything and I will continue on my quest to make sure my beautiful son is as comfortable and happy as possible.
I look forward to my next adventure and our next trip:) for healing!!

My Daughters Girl Scout Gold Award

I really need to update our blog and will as soon as we get through our daughters graduation, prom, etc. but need to share her latest accomplishments!!!
Go to
http://www.nj.com/cranford/index.ssf/2011/06/cranford_girl_scout_helps_brot.html
Couldn't be prouder!!!!