Welcome to our 2nd CaringBridge website. We created one back in 2002 when Joey was first diagnosed with ACM w/Syringomyelia while still on active duty in the US Air Force to keep family & friends updated with his progress. Due to his progressive condition, the Air Force discharged him as a US Disabled Veteran. In November 2005 Joey underwent a Decompressive Craniectomy at the James A.Haley VA Hospital in Tampa, FL that doctors told us would either give him a 50/50 chance of symptoms slowing down, stopping all together or would provide no relief at all. While the brain surgery created more room at the base of the skull for his ACM and while it did help his quality of life for a good couple of years, unfortunately it did not alleviate all of his symptoms. Most symptoms have returned and some are brand new. It seems as if we almost transported back in time to when Joey was 1st diagnosed, except that now we know what to expect and how hard this will continue to become. Most of his recent symptoms are identical to back in 2002, just more intense. A lot of pain, discomfort & overall difficult to live with. The newest symptoms that are arising include sleep apnea, bladder issues & a few others that he rather me not disclose. Along with ACM w/Syringomyelia, he just found out the meds are causing NAFLD (Nonalcoholic Fatty Liver Disease (caused my meds or weight gain from meds).
He is currently a patient with the VA Hospital BUT the negligence he experiences there is forcing us to look into other options for medical care. He deserves the best and the VA just does not offer the best care for complicated conditions like these.
I am currently working hard to get him seen outside of the VA by a civilian Neurosurgeon, but the protocol and overall process is very difficult and stressful. Your prayers are greatly appreciated,
I know most thought that Joey's condition was under control, mainly because we have not spoken to many of you in a long time (life, family, etc) but we have kept quiet about it for a while now, especially because not too long ago we were focused on my health issues and getting me help. Thankfully the love & support from family & friends helped connect me with the things I needed to get my health under control (to a degree.) I still have my issues BUT NOTHING compared to Joey's battle. As quiet as we kept it, recently new developments have forced us to share what is going on (to a degree) & ask for help in getting him seen outside of the VA System.
We will be using this site to keep family and friends as updated as possible in one place. If/when questions arise, you can visit this site for as much info as we can give without oversharing or being over transparent. As much as we want to share Joey's condition with you & keep you updated, we also ask that you respect our privacy with things that Joey may not want to share. We also ask that you not bring up things that are not mentioned here. We want to assure you that although very tired & overwhelmed, Joey's spirit remains unbroken and full of laughter. He is always that person to light up any room, make everyone laugh and NEVER want to burden anyone. There is not an ounce of self pity in him. He knows that regardless of the outcome, GOD will continue to get glory from this situation & from Joey's life. The joy of the Lord is His strength!!! When you see him, he is not cast down or walking around miserable. He is still full of such light & JOY, only possible because God is His rock & foundation in which he stands firm.
This site offers a journal where I can keep you guys as updated as I can. I will also be sharing our journey with this on our YouTube channel (Growing Up Gomez) once we start to build our subscriber base. For now you can subscribe to Dinah Reviews on YouTube for current VLOGS and possible updates. I do believe this page also offers a well wishes section for anyone who wants to write to him with encouragement, prayer, scripture or just to let him know that you love him. We appreciate your support and words of hope and encouragement. Thank you for visiting. We also have a GOFUNDME account to help raise finances to get him seen with a civilian Neurosurgeon in NY who specializes in his condition.
Here is that campaign, If you would like to donate or help by sharing it: http://www.gofundme.com/teamzipperhead