We did go to the Panama Canal and just missed seeing a cruise ship go through but did see a smaller cargo ship go through. Dylan was not used to the heat and humidity so he was not really behaving too well so I tried to let my Mom experience it a little bit. We were going to go on a tour where you go to the jungle area and monkeys climb on to your boat, but the weather was not the best this time and then they cancelled it because they said the monkeys don't come out in the afternoon as often. That was probably for the best because I don't know if Dylan would have sat on the boat as long as we were going to be on it. November is their rainy season and that was very true this time around. We had a lot of rainy weather! Other than that our exploring was the local mall and then we took Uber to an even bigger and fancier mall once. I almost forgot, we did make it to Casco Viejo this time, a really old part of Panama, to look around. They are in the middle of remodeling the area and making the old look new but in an old way. I think basically for tourist and to draw them in. The sad part about that is the buildings, if I remember right, have basically been passed down from generations but with this rebuild I heard it is really expensive so I am sure it has pushed a lot of people out of what has always been theirs. It is really fun to look at all the architecture though! It was fun having my Mom come along and share this experience with us!
They have changed the procedure a little bit since we went the last time and it is now very convenient because you stay at the same hotel that the office is located at. We were able to meet several different families there for Autism and hear their stories. When we first got off the plane and went to the lounge a lady could tell what we were there for because Dylan was bouncing off the walls. Her little boy, Truman, was coming back for his second treatment too. She said last time he could only say one word and now, I honestly had know idea he was on the spectrum. He was calm and talked. We saw them eating breakfast throughout the week and talked a bit. We met a family from California that was there with their son, David, who is 14 and here for the first time. They have done several different things with him prior to this. They were our favorite and we will be keeping in touch with them. David has a great memory and when we saw him at breakfast the second day, my Mom thought about saying Hi to him but we weren't sure if he would remember. We started talking to Ivana, his Mom, and he came running up to my Mom and called her by name and gave her a hug. He is a funny kid and we just loved him. He quizzed me pretty good on my knowledge of the Disney Princesses and Villians, but I don't know if I did to well, ha ha. I have spoke to his Mom since we got back and she is noticing more awareness in several different areas so far. There was a couple different bellboys that we got to know, Luis and one other but I don't recall his name. They were always quick to come talk to us and just loved Dylan. We saw several other patients eating breakfast that you could tell was here for different reasons like MS. I enjoyed this set up more so you could actually get to know people!
As for the treatment, Dylan is completely different since the last time and no longer requires being held down! We saw Dr Diez again this time. His labs looked good except allergies were a little triggered. Last time he got 36 million stem cells, this time with the new protocol he got 60 million (60.6 to be exact)! The infusions went well except the second one. He got a little squirmy but nothing to bad so they had to poke him a second time. When they did that in the wrist, for some reason blood would come out but could not push anything through. They tried again in his other arm but it wasn't working. They brought in another nurse to help out and was able to get it in the 4th time. They said that was really strange and had never seen it before. After that because they felt bad and didn't want to go through that again, they just had the 2nd nurse assist them the rest of the week. The last day they almost had it all in but then his vein started refusing it because that was the one we used most of the week, because it is his best, so they had to poke him one more time to get the rest in.
Our second visit, first infusion, we had a different Dr and I am glad we did because he mentioned the APEX clinic in Florida that he has seen good results with from some of his patients. He told me there was a patient of his that had come to the clinic a whole bunch of times and he was starting to think that they weren't going to get any further with him, but he came back and was making small sentences, so he asked the Mother what she had done. I had an idea who he was referring to because on the Facebook group there is lady that has take her son like 10 times so I wondered if that was who he was referring to . He said this clinic has called Panama and wondered what their protocol was because he has seen more improvement of his patients that have also gone to Panama. I am obviously interested in pursuing this option more! I called this clinic and found out it is a personalized daily program that helps reconnect neurons and is used with a lot of stroke patients. He gave me a number of a mother to call and she said this is the best treatment she has done so far. She has been with them for 1 year and plans to keep with it for 3 years. The funny thing is that this is the same patient that I am pretty sure the Panama Dr was talking about. It was good talking to her personally and i found out she has gone to Panama 13 times, wow! She said each time they saw improvements, but her sons gut and immune were in a really bad place so like Dylan it has been more internal improvements. So now I really want to give this Apex a shot! Maurice that I spoke to there said, with the info I gave him about Dylan, that he thinks we would be looking at a year of treatment. Great, right? That only comes with a almost $40,000 price tag!!!! I am determined that it is going to happen though so I may be looking into finding a job soon. Problem is, it would have to be night because between getting kids to where they need to be, then I would be working with Dylan and this program for an hour in the morning around 9-10 so a day job really wouldn't work, so we'll see, that just may be my new adventure!!
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| You meet amazing people. This is Ivana throwing Dylan into the pool. Her and her husband, Tex, were amazing! They were here with their son, David. |
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| David and my Mom |
Lab Results prior to stem cells
