Panama

The Stem Cell Institute is amazing and has someone inside the airport to meet you right at the gate when you get off the plane and rush you through security and customs, so we were out of there with in a half an hour and then waited for William our hotel and transportation coordinator to pick us up.  I was very thankful for this service because we do not speak Spanish and it was amazing to have our own personal helpers to get us through!  William was running a bit late and said he passed an accident and that there was also one on the other side of the freeway in about the same spot, so that tied up traffic a bit.  We got heading towards our condo (Pacific Sun) that we would be staying at for the week and had just got onto the freeway.  Not too long after, while William is telling us all about the crazy drivers in Panama, sure enough here comes a car coming down the wrong way.  From that point on, Brandon and I had no desire to even try to drive or rent a car while in Panama.  We would be perfectly happy sticking around the condo and walking to where we needed to go.  Which walking can be just as scary as driving because they don't really have very many specific cross walks.  People just walk out and cross the street and drivers stop for them, but very scary at times!  We spent Easter hanging out at the condo and doing what Dyl loves most, Swimming!  We walked down to the Super 99 grocery store and got some groceries to get us through the week and later made our way to the mall to walk around.  I thought we would run into some English speaking people so that we would be able to communicate a little, but no, that was our biggest problem of the week.  Next time I want to study the language and maybe refresh my high school lessons and hopefully be able to get the basics of communication down!

Monday April 6th we were picked up by our driver, Javier, and he took us to our appointment.  They had to take Dylan's blood to have some basic tests ran and give them a little information about Dylan.  Dr Diez met us in the lobby and brought us back.  We spoke with her and gave her some family medical information and information about Dylan's birth and his regression.  She asked if we had any questions and informed us more about stem cells.  She said that a lot of patients report back that in about 6-8 weeks they see a regression and then the improvements really begin.  She assured us that the mess???? cells will not cause tumors and the only side effects we may see is a headache and slight fever.  We warned her that Dylan is very strong and she assured us that they have seen it all!  We were then ready to begin!  Two others came in to help out, Santa Maria and Angelique and Dr Hernandez.  We held him down and they started.  Even though Dylan was being held down by all extremities he was still able to wiggle his elbow around causing his veins to move, so they really had to dig around and then pull out.  They went through the other arm and successfully got the blood they needed.  Dylan just cried and cried and was heart broken.  We had about 15 minutes in between before the cells were injected.  This time they went for his foot and seemed to be a little smoother of a process.  After that we were good to go on about our day.

The Easter Bunny brought Dylan this shirt.  Even the Easter Bunny knew good things were on there way!

I may be a mean Mom, but isn't that the cutest sad face you've ever seen?

 We decided to give William a call to see if any drivers were available to take us out and see some of the sights.  We were able to go to the Panama Canal, Casco Antigo(the old part of the city) and a look out point of the highest part of Panama, Volcan Baru.  Julie was our driver and was amazing!  Since Dylan is not the easiest kid to walk around with because he runs around and you spend more time chasing him than paying attention to what is around you, we chose to just drive through Casco Antigo.  Julie pointed a lot of the buildings out to us and we still had a good time doing it that way.  By the time we were almost back to our condo Dylan was about done any way, so it was a perfect little get away.  We decided that evening to let Dylan go for one more swim.  The pool where we stayed is pretty cold and seemed to always be windy because it is in between to big buildings, but with the humidity it wasn't too bad once you got in.  Well apparently since the sun had gone down the water must have been COLD!  We put Dylan in the kiddie pool and he was out within 10 seconds.  We figured he would get back in but then realized he was heading to the elevator.  We followed him and he walked right in and was ready to get back in to the room and getting undressed as soon as possible!  It was so funny to watch!  That day I think he showed a little more alertness than usual.  I think he may have had a headache by the end of the day because he grabbed my hand and put on his head several times, but didn't seem to bothered by it.

Tuesday April 7th we didn't go in until the afternoon.  We wasted the day away swimming that day.  When we got to the clinic, we had to wait a while for the cells to be brought in from the lab.  This day Dr Diez, Angelique and Dr Hernandez did the procedure.  This day also let us know that yes he is a strong one and I don't think they expected him to be that strong ha ha.  They also injected the cells into his foot this day and while they were at it, planned the next days spot just to be prepared and to make it as easy as possible.  This day, I feel he was also more alert but no big changes.  I am pretty sure he knew where we were and what they did the day before but did not freak out in the waiting room and sat there pretty contently.

Other than the clinic we spent the day swimming and exploring the city around us a bit.  We found a park and went and played for awhile.  It was right by the Ocean which Dylan really wanted to throw things into but you can't get close enough to it to be able to throw things at his age.  By this time, we had pretty much given up on trying to find a local place to eat for two reasons.  1.  We was really struggling with the communication.  2.  Even if we were able to communicate and order something, most likely there wouldn't be anything Dylan would eat and if Dylan wasn't eating then we would be too busy wrestling him around to be able to eat ourselves.  So we spent several different meals throughout the week at good old McDonalds ha ha.  We went to the mall again this day and found the kids souvenirs and a sippy cup that we had been searching all week to find.  Who knew a sippy cup would be hard to come by?

Wednesday April 8th, we went in the afternoon again.  While waiting in the waiting room Dylan went from my arms to Brandon.  We had to wait a little bit for the cells to be delivered that day too.  Dylan dozed off in Brandon's arms, which never happens.  That made Brandon feel good that he felt comforted by him.  They took us back and said to just let him sleep and figured with the small needle they use for the IV that they could sneak it by and Dylan wouldn't even wake up, WRONG!  He woke up kicking and screaming.  They had got it into his arm and was pushing the liquids through but with as much of a fight he was putting up, his veins closed off and would not let anything go through, so they had to pull it out and try again.  They went and got Santa Maria to help out after that.  Santa Maria went right to his foot and with all of us holding Dylan down, it was super quick this time!  Brandon said that was the worst one yet because Dylan was asleep and first thing he saw when he woke up was him.  He was certain Dylan would feel betrayed since he had been his comfort just minutes before when he fell asleep.

Just before he fell asleep

Just before he was rudely awakened, poor kid!

Thursday April 9th, There was a big presidential meeting going on the next day and all the presidents would be arriving so they had everyone come for treatment in the morning so they could close down the clinic by Thursday afternoon and Friday all day.  They completely closed down most of the roads, making it impossible to get to/from the clinic.  There were about 5 or 6 patients, along with 2+ additional people per patient(most were young children patients) squeezed into a small waiting room.  From what we observed throughout the week there were 3 Autistic patients and the rest were Cerebal Palsy patients.  Angelique came out to the waiting room and saw Dylan and pulled a funny(but playful) face and said, "there's my friend Dylan"  The look on her face was like "Oh No!"  We just laughed.  Then when it was our turn, we went back and this time Dr Diez and Santa Maria was waiting for Dylan.  Brandon said it was smart to have Santa Maria there for the first try, ha ha.  We took our places and held him down and with Dylan putting up a fight, it was over.  This time they successfully injected it into his arm!
Afterwards, we met with Dr Diez and went over Dylan's lab results which she was very impressed with.  His platelet level is very high, so she said on paper Dylan would be a wonderful candidate to donate blood!  But being a Dr that had just successfully treated Dylan this past week using a needle, she knew trying to get the blood from him is a completely different story!  She told us that Dylan will forever have a reputation at the clinic and will be known as, "THE STRONGEST 3 YEAR OLD IN THE CLINICS HISTORY!"  We all laughed because we knew it was true.  By the time each injection was over, everyone was working up a sweat ha ha.  The only result that was high was the Erythrocytes, even that was just barely high.  She said she wasn't going to worry about that because it could have been that he was slightly dehydrated when the blood was drawn and if she treated this than it would make his iron levels go higher and they were already towards the higher acceptance level.  She said it would also constipate him, so we are not worrying about something so minor.  She suggested giving him Vitamin D, but not too much since it is almost Summer.  We have started giving him a supplement(Vemma) that should help with that.

The rest of the day was spent swimming and doing a few last minute walking around the city and eating at McDonalds!  We had ran into a Grandfather that was there with his granddaughter(All About Abigail on Facebook) and son on our first day and then again at the pool.  Then they were in the lobby with us a couple of times.  We ran into them in the elevator and they were on there way to meet a group of people from their group with Cerebral Palsy and they invited us to go along.  We had already ate and thanked them for inviting us.  They were going to a Mexican restaurant that we had already went to and neither was super impressed with the food.  Their red sauce tasted more like marinara sauce, but other than that I wouldn't say it was anything spectacular.  Maybe if we knew the language and really knew what we were ordering, may have helped!  It was an amazing experience to be in this setting because it is full of hope!  Parents are doing what they can and not giving up on their children, no matter their disability.  Next time we go back I want to take some refresher courses and at least be able to communicate with people, that's my goal!  

Now we play the waiting game and see what kind of work these cells do!  We are to do anything we can to stimulate Dylan's brain and in his case EVERYTHING will be stimulating!  I can't wait to see what progress we see in the next 6-8 months!