Today went great here. We went to the clinic earlier today. We met another family today who are here from the states. The majority of people we have met seem to be here for MS or for a viral or autoimmune type illness.
The little girl from Los Angeles had an allergic reaction to the adhesive on the medical tape from where her IV was inserted. Her hand was red and swollen. It looked very itchy. Her parents said she was feeling much better today but her hand still looked bad.
Patrick has had NO TYPE of negative reaction at all. Today for his final infusion it took about the same amount of time. I also got all of his lab copies from Dr Rodriguez. They ran labs on him when they drew the initial blood. He also gave me the certificate from the lab with the exact amounts of what exactly Patrick received. He received over 5 million cells of the ones to target his brain/oxygen flow and then over 2 million of the type to target his immune system. He received an additional 5 million cells that are not trained to seek a specify site but are looking for weak areas where they can "go to work." I have the exact numbers and exact cell type names, I will post tomorrow. I have already packed it all in a suitcase tonight.
We are noticing even more talking. If he isn't talking to us, then he is talking to himself while playing or singing. He is also drawing pictures that are much more detailed and also telling us about them in greater detail. We took him to the Gamboa Rain Forest today. We took a boat ride down the canal and he saw some monkeys and a crocodile. I asked him about the trip and he told me that he "took a jungle cruise" and that he saw "the rain forest" and "two monkeys and a toucan." I thought this was interesting because I had never used the words "jungle cruise" so he thought that up himself and he told me it was like "Disneyworld." I think they do have a ride there called Jungle Cruise or something like that so maybe that is what he is referring to.
He doesn't want to come home tomorrow. He has asked us to go back to the train station all day today. He loved the train ride and he has a big time every day in the swimming pool.
Some families come back for booster infusions within about six months. We spoke with Dr Rodriguez today and he said that we will touch base on progress and it is too soon to know if we will want to come back or not.
It has been nice to see the other patients and get to know their stories. It seems that for MS this is working really well. We also talked to a few people who has their diabetes and asthma almost cured too. Stem Cell Institute has taken great care of us too. They gave us a cell phone where we could contact their staff or the Dr's at any time. Luckily we never needed to call them for any type of emergency or problem. It was nice too that they picked us up at the air port and they drive us back and forth from all appointments too. That has made things very easy.
Of course for all the diseases we know that stem cells will "cure;" there are no promises for autism. Each child with autism is so different that I think it is hard to know if every child will have the same response. We do know several families who have children that have improved greatly with this treatment.
One week ago I did an ATEC test from the Autism Research Institute to get a baseline score for Patrick before the treatment. On a scale of 0 to 100, Patrick scored a 37. On this test the lower the score the less severe the symptoms of autism are. The test is sectioned into areas of communication, social behavior, cognition and health issues. Today I did the test again (answering all the same questions) and his score was a 23. His dad and I are not "eternal optimists" so I think we are both being exceptionally "cautiously optimistic" about the whole procedure. I was trying to be as cautious as possible when answering the questions so I feel that the 23 is pretty solid.
We leave in the morning for Kentucky. I will keep everyone posted on his progress.
No comments:
Post a Comment