Hello Team Eddie, this is fairly long post on pressing Eddie issues. Ive tried to keep it accurate and to the point. But just in case you dont get through it all or fall asleep, the video Ive posted is one of last taken before the accident. I particularly cherish this video because I see my baby boy and it captures his personality, full of life, joy and emotion, that we all desperately want back. I thank you all again for your continued prayer support for the Little Lion. We will hear him roar again one day, I have faith. Every day since the accident has been both a blessing and a nightmare. A blessing in that Eddie is still with us and giving it literally the fight of his life to recover. A nightmare in that this whole tragedy is and continues to be a living horror show every day Eddie is still in a minimally-conscious state. I cant fully convey the despair I feel during those fleeting moments he is fully-aware and see the fear in his eyes when he realizes he is stuck. It is absolutely soul-crushing. As Ive alluded to before in other posts, there is an ugly, not so positive reality to Eddies situation that is starting to get exposed and is finally rearing its head, for better or worse. As it pertains directly to Eddie and given this is a support and prayer page for my son, I will discuss some of the aspects of the ugly reality facing Eddie that hat all vested in support of his recovery deserve to know. Although Eddie is progressing ever so slowly, there is much that can be done for him that isnt for various inexcusable reasons. An actual and well-planned care, rehabilitation and recovery plan that prioritizes and refocuses his needs now and at various future stages adaptive to his progress are tantamount. The end goal I envision for this plan is that Eddie overcomes this devastating brain injury and he has the quality of life, or as close to it as possible, that was taken from him. How there still isnt a plan in place 17 months after the accident is an utter disgrace on part of myself and my involved family members, his mother and her involved family member and his neurologist, among others. I have been an advocate of structuring and implementing an actual recovery plan for some time now after joining various near-drowning and anoxic brain injury support groups. My eyes were opened in these support groups. I realized quickly after speaking to multiple parents and taking stock of various similar and disparate efforts for their children, that we had really been comparatively remiss in our efforts to help Eddie. After that, it was extensive research time, getting up to speed on all trial studies, breakthroughs and developments on therapy and rehabilitation aspects of disorders of consciousness and anoxic brain injuries, interviewing medical experts in these fields and therapies, interviewing admittance staff from the numerous neuro-recovery and brain rehabilitation centers in California, having discussions with his doctors from UCLA and Rancho, speaking with as many parents going through or who have forged this journey already, and lastly, analyzing the results of various therapies or rehab options available at different stages of injury to see what works and what doesnt. I have been and will continue to be open to both mainstream and alternative therapies that, after serious research, discussion, debate and risk-benefit analysis with experts, offer Eddie a real chance to recover. As of now, nearly every doctor or expert I have spoken to agrees that THE priority for Eddie to have any chance of recovery is to get him fully-conscious. Getting him weaned off the ventilator and breathing completely on his own, assuming a continued torrid sprint/trial pace, is at least a year and half out with no guarantee it will have any significant positive impact on his brain injury, much less help him become fully-conscious, according to his Rancho doctor and one of his UCLA doctors. There is no neuro-recovery or brain rehabilitation center of merit that can assist him in any measurable degree if he is not fully aware, able to respond to commands and participate at some level in the brain injury rehab programs. That is a cold, hard fact, not conjecture. A fact validated by yet another expert this past week, Dr. Sarino at Rancho Los Amigos National Rehabilitation Center, one of the leading rehab centers in the country. Everyone directly involved with Eddies care that wants to see him recover, particularly the involved family members, have to put Eddie first and work together on implementing and actualizing a recovery plan, instead of being an obstacle and dismissive to this necessity. That includes giving serious consideration to any and all viable therapies proposed that may help him, instead of arrogantly, flippantly and mistakenly dismissing said proposals as quackery or internet/googled quick-fixes. The continued naivete in dismissing a recovery plan and viable therapies without even giving them serious consideration or thought is galling at a time Eddie has a special need of help that can be provided by those family entrusted to his care. Even more galling is that one side of his involved family has made initiating a custody battle, and allocating considerable time and financial resources for legal costs, a priority at a time when no effort and resource should be spared in helping Eddie recover. Priorities, motives and agenda are suspect by this action. The silver lining in this waste is that God-willing the year-long plus well-documented pattern of harassment, threats and abusive conduct towards me and my family in efforts to remove us from Eddies life and minimize our contributions to Eddies recovery will addressed. But more importantly, obstacles to Eddies recovery may finally be removed in response.
Posted on: Tue, 25 Nov 2014 00:00:00 +0000
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