Wednesday we went to down town San Jose to the Mercado to see what Arturo the manager here at our inn called the real Costa Rican shopping experience! There is a boulevard of urban shops packed with shoppers. Drake was in his wheel chair so we were able to maneuver thru the crowd. People are very well dressed. The ladies are in jeans and heals- many of them are quite beautiful. Drake scored on a new pair of OP shoes. It is fun to figure out colones to the dollar- the shoes were 11,000 colones, which means I paid $22 dollars. Contrary to all the tour books I felt safe and in no way felt as if we were on the verge of being ripped off. I had a purse and Drake had a backpack on the back of his wheel chair. I liked exploring the market,
because it is so different from home. This covered market has a rural market feel (I imagine it is similar to a Mexican market). The booths were
colorful and the alleys between them were narrow. We then drove to the clinic and got a tour of the stem cell lab. Driving anywhere is really intense. Dixie rocks as a driver. The car exhaust here is absolutely
nauseating. The lab was very impressive. We met with the medical director and one of the other doctors.
Thursday Drake had his second spinal shot (intrthecal). He had to skip breakfast, which was very hard for him. He was active and awake at the hospital. As soon as the stem cells arrived Drake was promptly sedated. The sedation was so fast acting it almost acted immediately. In less than a minute he was limp and asleep. He got the agreed amount in the spinal shot and an extra iv dose. Yeah for Dixie . . . we started asking on Monday for an extra dose. Back at the hotel room it is clear that Drake has head pain! I am trying to get him thru this part of the day the best I can with aspirin, Tylenol and lorazepam. Once he started to feel better he gave his TuTu a kiss and later I got one too.
Friday morning Drake seems to be his usual self. No seizures in the night and no more head pain. We are all headed back to the clinic for his last iv dose of cells! Drake willing we will then make a 2 hour drive to the pacific coast. If all goes as planned we will end up at Manuel Antonia, which is a beautiful place where the jungle meets the beach. This may be our last access to email. Sorry for leaving out the more technical information, but keeping up with Drake is full time. Love to you all from Costa Rica.
Sierra
drake
Dear Sierra and Dixie: We got your card and thank you for sending it. We are inspired by your courage to try such a dramatic and virtually untested therapy on your son/grandson. We prayed all week for all of you, and hope that you made it back to Ca. safely, and doing well. I searched the Web and did a lot of searching on PubMed, the national library of medicine website, on autism/seizures/stem cells and came up with one positive article, and none negative. Then Jim and I prayed for you frequently. We know that the brain is capable of remarkable recovery and rehabilitation--and we certainly hope Drake has made a step towards that. God bless all of you--Love Leslie, Jim and familySubmitted by Anonymous
on Sun, 02/22/2009 - 04:39
Leslie, we are looking into
Leslie, we are looking into the drug you reserched Rufinamide/Banzel. We are going to give it a trial really soon. Thank you, SierraSubmitted by Anonymous
on Mon, 06/01/2009 - 19:39
Drake
Sierra, I commend you for your boldness in researching and moving fwd with stem cell treatment for your son. I have witnessed your astounding efforts with numerous diets, antidotes and recommended treatments over the last 13 years. Despite many downfalls, you have pushed on day after day, week after week, month after month and year after year determined to establish a better existence for Drake, for you and your family and for all mothers struggling with similar circumstances. I know that there are few if any other children alive with symptoms matching Drake's and that you are essentially alone in your quest to heal him or at least make his life more bearable at any given moment. Any doctor or scientist that is bold enough to go beyond the text book methods or treatments is lucky to have you in their life and I consider myself lucky to have someone like you in my life as well. You have shown extraordinary strength and optimism rare in mothers and in most people today throughout this journey. Although the outcome of Drake's current treatments are unknown, my thoughts are with you, with your traveling companion Dixie, and with your greater family and friend circle. There is nothing to be lost but only something to gain in knowing you are doing all you can to fight for Drake! Much love, your friend.Submitted by Anonymous
on Sat, 02/21/2009 - 08:05