Cameron Update: Monday April 8, 2013;
I know for some of you it has been to long since my last update, and some of you have want REAL updates but we’ve tried to keep the information positive for our own sanity and yours. So to date Cameron has shown us and the MEDICAL WORLD that what was thought to be impossible is very POSSIBLE, he has shown great improvement since he came home. However the truth is the KID is a fighter, and his current condition is still very serious and his outcome is unknown to us but we’re never giving up. L.E.S. WARNING!!!! So here’s the truth; the blood clot in his brain (CSVT) is still there and still unchanged from January as of last week, not what we wanted to hear, he has also been accepted into a new study at All Children’s Hospital, one for patients with rare forms of STROKES caused by his current CSVT. His diagnoses is the following, Static Encephalopathy, Severe Leukoencephalopathy, Severe Cytotoxic Cerebral Edema, 8 inch Occlusive Thrombus of the right Transverse and Right Sigmoid Sinus, Veno-Occlusive Disease, Recurrent Status Epileptics (related to an allergic reaction to a medication), mild right-sided Spastic Hemiplegia, and lastly Severe PTSD (posttraumatic stress disorder). What does all of this mean, well nothing good, if you research anyone of these you won’t like what read let alone having all of these at one time. So I ask of you who have followed and supported Cameron and our family to please continue, but don’t be shocked if some of the answers you may get aren’t always Rainbows and Sunshine. This is our life day to day, we have UPS and we have DOWNS everyday and week.

Cameron Update 3-17-13

3-17-13

Cameron Update: I know it’s been a couple of week’s sense the last update but life doesn’t stop when you get home, it gets out of control. Now onto the one that really counts Cameron, he has continued to improve on all levels. Cameron has started his all of his therapies (Speech, Occupational, and Physical), he does three hours of each every week, along with 4 different teachers coming to the house for 100 minutes each. Homework everyday just like the rest of the kids, Cameron has and will always continue to fight everyday; some things are definitely different this go around. The first time Cameron had no FILTER and we mean no filter, going to Wal-Mart with him was always very interesting. This time is the total opposite he is very quite and doesn’t want to bother anyone, also he won’t let us know if something is hurting, or bothering him without us prying very hard. We have started to get answers to what did this to him for a second time, but we still have a lot of tests and once we know everything then we will fill everyone in. Jenn and I are still in shock, and going through the phases of that come with an ordeal like this. One thing we have learned and want everyone to know is that don’t ever stop asking questions, if something doesn’t sound right, ask someone else, your child’s voice during a time like this comes from you. We thank you all for follow, praying and sending your kid words, they all help. I try to make sure the next update doesn’t take so long.

3-5-13
Cameron Update: Cameron has been continuing to improve at a speed and level no one and I MEAN NO ONE thought would or could be medically possible. Cameron has started back with home schooling (Hospital Home Bound). We have been going through the transition of changing doctors and specialist that have experience with his type of condition and also experience with adverse allergic reactions to antibiotics. Cameron condition is very rare and extremely complicated, a recent studied published by the American Heart Association published February 3, 2011 states that his CSVT (Cranial Sinus Venous Thrombus) is an extremely uncommon and is a frequently unrecognized type of stroke that affects approximately 5 people per million annually (reported cases in the US only) and accounts for .5% to 1% of all strokes, now from the signs he is showing with his recovery this study doesn’t support a full on stroke,( www.stroke.ahajournals.org is the study you can read about it) but with the help of all of you with your endless months, weeks, days and hours of Prayers and the Positive projection of healing Karma of has been working. Our family has been blessed twice, and we have always said that Cameron was meant to for greatness (but not this way). We are going to continue our fight to prove what did this and make sure that this doesn’t go unreported so to help others around the world know what to do and say when a love one’s life is at risk. Also read this report that was released last week, this will help you with your own family and what you need to do every time someone has a medical issue. Just copy and past this link. (http://health.yahoo.net/news/s/nm/misdiagnoses-in-doctor-s-office-can-do-harm-study#.US31wuKIagw.email). Once again My Family Thanks everyone for their ongoing support and love.

Cameron is Home!

Cameron Update: 7:49pm Tuesday February 19, 2013; CAMERON IS HOME, CAMERON IS HOME. Was discharged from TGH today, and now is home with us. Cameron will start his out patient therapies tomorrow, he will be doing a total of 9 hours a week, 3 hours of Occupational, 3 hours of Physical, and 3 hours of Speech. Along with 3 hours a day of therapy at home, doing things that we normal people do but don’t realize how strenuous of a workout the little things can be. Cameron’s at home school will start back up in a week or two also. At this time we still have a lot of work ahead of us, like pen pointing what the Trigger was, we have our suspicions but it would require that one of those people with 12 years of college, and $200K in school loans to agree. However it is apparent that one boy can PROVE everyone in the medical world wrong not once but twice. I think they will have to make a movie about the boy who they said he would not, would never, could not, could never but HE DID. TWICE. I will keep the updates coming.

Cam Update 2-18-2012

Cameron Update: 2-18-13; Ok everyone I know it’s been a week or so sense I have given a true update on Cameron recovery but it has been very busy with Cameron, his brothers and sisters, and also work. I knew that I might have been JINXING ourselves but with our last post of Cameron coming home last week for good but I was just to excited of what it might have been. Cameron isn’t home yet but was able to come home for TWO visits this weekend. Jenn brought him home on Saturday Morning, I took him back Saturday night, then back home on Sunday and then Jenn took him back last night for what should be his last week at TGH. I have to be honest, when I had to pack him up to go back on Saturday night I wasn’t doing to well with it, I could hardly pull out of the driveway. I tried to hide my tears but it was very hard, I also new that if he saw me upset it was cause him to have a break down. So I tried to man up, but for crying out loud I cry at those damn PUBLIX Holiday Commercials every year (YES I AM A MAN AND I CRY). The visit was with him at home, have everyone at the dinner table at one time, having family movie night (“Here comes the BOOM” very funny a must watch) was so the best. We hope this is going to be his last week at TGH, but we will just have to wait and see. I have attached some pictures from Valentines Day, and this weekend, one of pic's just isn't right see if you can find what's wrong with one of these pictures..

Cameron Update:
2-8-13 -6:30am:
Cameron is moving a lightning speed still, he is getting stronger and stronger with every workout. He is getting his spirit back more and more every day. Hearing and seeing what he is doing everyday from Jenn is great, but knowing that I get to relieve Jenn today for the weekend shift makes me excited. We still haven't heard from any of the Neurology Team (shocking), the AI Team (Allergy Immunology) came by yesterday and took a more blood samples for some new tests. They're testing for HLA (Human Leukocyte Antigen), they are trying to put a correlation together with the Antibiotics and his two extreme episodes. Why it has taken so long for a couple of Doctors to agree that it's too coincidental that this could happen twice when he was on the same two drugs before each episode. So I have started my own "JP's Real World Dictionary" Doctors: full desperate rhetorical contortions of someone with the pathological need to be right and never be wrong; please note that if a "Doctor(s)" become hard to find, don't come and check on their patient, don't make eye contact with you if see them, walk the other way when they see you, then you have "PWGASS" (Parents Who Give a Shit Syndrome). Don't worry it's not a bad disease, it's a good one. Oh yea and they really HATE IT when someone like me who considers 6th grade as my Senior Year, and can't spell to save my life. Points out, finds answers, never stops questions them on everything that doesn't make sense, makes them SCARED when they see coming. To think that just because Jenn and I are committed parents (not parents that need to be committed) and dedicated to making sure our son gets the right medical treatments, attention, and tests he deserves has some of them not doing their job at all. This is disheartening to me to think that if other parents are not as involved we are then who is the VOICE is for those sick children who doesn't have a VOICE.

2-7-13

Cameron Update:
2-7-13- 6:30am
So Cameron, what has he done up to this point is probably easier to list what he HASN'T DONE. Cameron yesterday hit more and more mile stones, during PT he stood with his Therapist and a walker and marched in place, walked 3 or 4 steps with PT, turned around and walked back and sat on his bed. This feat on it's own is AMAZING this early in his recovery, also he is eating and drinking all of his food and medication that are in pill form. Jenn said that he is also brushing his teeth, feeding himself with help from Mom, and also using the bathroom more regularly. All of these things are months ahead of his first episode. Yesterday had a new CT conducted to look at his Blood Clot along with a new panel of test that the new Hematology Team wanted, they are looking for a connection too the 2 antibiotics Cameron was on both times this has happened to him. Cameron has shown unbelievable signs of improvement on his motor function skills, but the Neurological side effects are things that we can’t say when they will go away, maybe in a week, month, year, or not. We were still seeing Neurological side effects from the first injury, and sense we haven’t seen or heard the from Neurology Team in the past 17 to 20 days and he’s not on the Neurology Floor we still have no answers. I am never going to stop questioning, second guessing, researching, or fighting for my son’s life. This picture was taken yesterday at 6:35pm, when I saw it I more than moved, so in advance I am sorry for any “Leaky Eye Syndrome” it has caused, but yes he is outside in one of the many gardens at the hospital with Jenn. I love you Cameron, you inspire me to be a stronger Man, Father, Friend and Husband!