Mission Complete - Panama Trip #2, May 2011

Hello everyone -

Riley received his final dose of stem cells today.

He did absolutely wonderful yesterday and today. Both days he sat very still on Zack's lap and let them infuse the cells and he watched the whole time. When everything is complete and they put the band aid on ......then.....he comes to me for me to hold him and he looks at his arm and the band aid and then he cries and he is mad! It is very short lived. He just wants us to know that he is mad that we made him do this.

He is just like Conner when he behaves this way. It is a very "matter-of-fact" approach to the situation. It is very interesting to see how similar they each behave as Riley progresses.

We will be flying out tomorrow at noon and back to LAX. Fortunately, we were able to get a direct flight this time. I am hopeful that the ride home is as easy as the flight here.

Overall, this trip was so easy. It is just amazing how different each time is and it really does get better each time. The biggest obstacle here is just filling the time during the day for Riley.

Thanks again for all of your prayers and thoughts for Riley. As always, Zack and I are really thankful for all of your friendships.

Suzanne

May 25, 2011 - Day 3, Panama Trip #2

Hello everyone -

Today went REALLY well!

Riley was so good ....Zack and I really could not believe it. He made it clear that he initially was not excited about being there. In fact, before we went to the clinic, we asked him on his new communication program on his iPad how he was feeling and he told us that he "felt frustrated". It was clear that he was frustrated about being there, but he really was a trooper and once they popped the band off of his arm he was totally fine and he just watched them infuse the cells and he kept his arm still. I really attribute this to talking to him beforehand and explaining to him what was going to happen again and the fact that he genuinely understands us now. The process was really quick and we have two more treatments left.

I went on a lab tour this afternoon and learned even more about what is going on in the lab and how the cells are prepared, etc. I feel even stronger that we are doing the right thing for Riley after that visit. I was the only one that wanted to go to the lab tour this week so I got a private, one on one tour, with the lab director and the CEO of Medistem Panama, so I got ALL of my questions answered!! It was really time well spent.

Suzanne

May 24, 2011 - Day 2 on Panama Trip #2

Hello Everyone -

We are winding down from Day 2 right now. Today was the first of 4 days that Riley receives the stem cell infusions. The day started out great because Riley slept until 10 15 this morning. For those of you reading this who have been here before you know that I was thinking that's just less time that we have to find something to do to entertain him. We went to the Multiplaza (the mall here) after lunch and then we were picked up there by the driver and off to the clinic. Unfortunately Riley moved when they stuck him the first time and we learned a hard lesson that I needed to be the one holding his arm and not the Dr who was going to infuse the cells. We switched arms and once I had a better grip on him and he was unable to move his wrist everything went well. Once again, he was not happy about the stick but it took all of 2 minutes at the most and we were done.

Not much else to report. We are just hopeful that tomorrow he will actually still be willing to sit in the chair again for the second batch!!

Sue, Zack and Riley

May 24, 2011 - Day 1 on Panama Trip #2

Hello Everyone-

A quick update from yesterday…Riley had to arrive fasting at the clinic at 8 45 a.m. When we arrived, the other two families with children with autism were there. One child is 5 years old and one is 7. The 5 year old is here for the fourth time from Spain. We are hoping to spend a little time with them this week. The little boy is super cute and spoke to me in Spanish a little bit telling me his name and how old he is. The other family is here from Florida.

We were able to take Riley from sleeping in the bed to the van to head to the clinic so the fasting part was a breeze! They drew four tubes of blood from him. He was mad...I felt it was mostly about the tourniquet though, which is the band that they put on your arm to make your veins more visible. He wanted to watch but then it would make him even madder. If you know Riley really well, you know that he hates stickers, bracelets, hats, etc....anything that is an object that he thinks does not belong on his body. The process probably took all of one minute.

The great part was that we walked away having had no anesthesia (like the past 2 years) and NO CAST!!

We spent the entire day at Playa Bonita, a resort about 30 minutes away and had a wonderful time. There were 5 pools and they also back up to the beach so Riley was in heaven! Yesterday was another great day and I am hoping the same for today.

Thanks for all of your thoughts and prayers and I will be in touch

SUE

May 23, 2011 - Trip #2 to Panama

Good morning everyone -

We will be heading out shortly to the clinic to begin the process for Riley's 3rd stem cell transplant. It really seems like just yesterday that we began this journey. There are two other families here this week that have children with Autism, in addition to the many other patients that they have. I will send a message each day with the update on how Riley is doing. This trip is particularly different from the past because Riley will not be receiving any anesthesia. This means that he will get stuck everyday with a small 23 gauge butterfly needle so just pray that he tolerates it. If he does well then we can go swimming, he can take a shower, etc......since he won't have a cast. It will really improve all of our quality of life this week.

Riley did so great on the plane yesterday. We had a 6-hour direct flight. He slept for 3 of those and just played and ate the rest. Yesterday alone was such a reminder of the progress that Riley has made. Nothing was an issue. He was happy to wear his seatbelt when asked, he let us know when he needed to use the restroom and whatever else he needed during that time. His communication has really improved tremendously and sometimes it takes a day like yesterday for me to realize that. I had to look at Zack a couple of times and say, "Do you realize how easy today has been?" So, it was really good and now we are off for the hard part.

Updates to come.....

SUE

November 2010 Update

Sorry it has been so long since I have posted an update.

There are actually some exciting things to share about Riley's progress since we've been back from Panama. He continues to want to play dress up in Zack's clothes and look at himself in the mirror in a very proud manner.

In the realm of imaginative play, he also consistently enjoys playing with play-doh and not just wanting to eat it! He also loves playing with stamp pads now. He primarily wants to stamp up and down his arm and whoever is the lucky one playing with him.....of course I am happy to be the recipient since I am just thrilled that he wants to play something that is NOT electronic!!

His receptive language continues to blossom. I feel strongly that he understands about 90% of what we say now as opposed to a year ago when I felt that I was always talking to myself. By his actions and responses, I know that he understands us and his teachers, and his therapists feel the same way. One example is when I ask him to take his shoes off and go and put them by the door (where we all keep our shoes) and he does it! That would not have happened 6 months ago.

I also received a note from his teacher a couple of weeks ago saying that she was excited to report that Riley has been consistently playing with a friend at school. He is also very good now at telling/showing us what he needs. He is doing this at school as well. His verbal skills are still very minimal, but he finds a way to communicate and this is very exciting for us!

Thanks to everyone for your continued support!!

Zack, Suzanne and Riley

The end of our trip to Panama

Our final day in Panama was great. Riley did such an amazing job. Zack and I were really in awe of just how well behaved he was and how obvious it was that he truly understood that nothing was going to hurt and that his cast was coming off. It was so exciting to see how much he had changed this year in comparison with last November.

Overall, the trip was just so much more enjoyable than the previous trip. Riley has really changed a lot. Sometimes it's hard to see these incremental changes when you live together and see each other everyday and it takes something big, like this trip, to really open our eyes to the magnitude of the changes that have taken place. We still have a LONG way to go, but I really feel that we are strongly moving in the right direction.

We spent our final evening in Panama with our new friends from Dallas whom were there with their son for the week (he is 5 and it was their first visit). Saturday morning we headed out early for the flight home. I was already hoping and praying for nice flight attendants who would understand if we needed to make any "adjustments" to the rules. Riley is rather unpredictable with his seatbelt and, of course, that makes me nervous. Well, we got on the first flight and the lead flight attendant was very understanding and just told me that he was my responsibility.....that was all I needed to hear. He would NOT stay in his seatbelt.....he has learned how to unbuckle it.....so Zack held him and everything was fine. Riley was pretty active on that flight (4 hours). He was still very well behaved....I think he just got bored. The final flight home, he was sleeping in Zack's lap before we even got into the air and thankfully no one cared that he wasn’t in his own seat and they let Zack hold him and he slept for over 2 hours!! It was a great way to end the day.

Now that we are home it's just a "wait and see" situation. Last night, Riley wanted to wear Zack's button down, dress shirts (see picture below), and I guess this was his "dress-up" play. He had shown interest in these clothes the night before and wanted to dress Zack but last night he wanted to wear them. It was actually really cute. He went to bed in the shirt. I joked with him and asked him if he was going to go to work like Daddy and he would just get a huge smile on his face and laugh. He is definitely very connected with us these days and part of the family. Those of you who live with Autism know what I mean! I can't really give too many specific examples but he is just different. I have noticed that he is more tired than usual; perhaps that is the stem cells fast at work in his body!!

Thanks to all of you for your support and prayers. We are so appreciative to all of you that think of Riley and pray for him. I feel that he is doing well. We are hopeful for improved speech specifically.

Suzanne and Zack

Day 3 and 4 in Panama

Here is an update for you all on today and yesterday. Yesterday morning we went on a tour of the Panama Canals and got to see the Locks. It was a pretty amazing thing to see. But, the humidity here is pretty awful so that put a damper on any outside experience. After this was over, we went to the clinic for the 2nd dose of stem cells. Riley was not quite as calm as the day before, but he still did well in comparison to last year. Today was great though!! He was the best ever. He actually did not cry at all. He was just very concerned about what the doctor was doing and watched very carefully but did great! After the infusion, we went on a lab tour with two other families. This was very interesting and informative. I was very impressed with the cleanliness of the lab and the detail with which they answered all of our questions. I felt even more affirmed when we left that we are absolutely doing the right thing for Riley.

Friday is the last day and we are very anxious for the catheter to come out and get rid of the cast. If he does as well as he did today then we will be thrilled!

More to come! Almost done with the 2nd trip!!!

Sue, Zack and Riley

Day 2 - Panama

Today was GREAT!!! Last year the 2nd day was really rough when it came time to infuse the stem cells. Today, we saw a whole new Riley! I talked to him a couple of times before we went to the clinic and explained to him what would happen and that nothing would hurt. I told him that they would unwrap his cast and give him some medicine and then he would get ALL of the cookies and pudding that he wanted. He was not happy about it when the time came to do it; however, he let us get through the process. It was apparent that he was mad but not scared. Anytime he would start to fuss or cry I just put a cookie in his mouth and then it was ALL better.

Zack and I were mentally and physically ready for what happened last year (which was having to give him Valium everyday just to infuse the stem cells), but we were so pleasantly surprised. I believe this is truly a strong indication of just how much better his receptive language is since November (our previous visit).

We stayed out in Panama the rest of the afternoon and into the evening and he was great. So far, no side effects and he is doing really well. More updates to come!

Zack , Suzanne and Riley

Panama - Day 1

Today was MUCH easier than the first day last year. Everything here in Panama was so much more efficient, which I expected thanks to Julie & Matt giving us a "heads up".

Riley had a little something to help in relax before going back to the OR. He did not want to take the medicine although they had mixed it with some Cherry-flavored Tylenol (which stressed me out in itself because we don't give Riley Tylenol products!). With a team of 4, we held him down for a few seconds and I held his nose and it was a success! After that, he relaxed and went back with the Anesthesiologist and the procedure to place the cast and catheter took about 20 minutes. When he first woke up, he tried to take off the cast but that was only for a few seconds and then as soon as I held him he went back to sleep for an hour and then he woke up very peaceful and we were done.

We went to the Organica store across the street to get his favorite Ice Cream and cones and made him a pizza for lunch to make him feel at home. This afternoon we are going to go to the mall and then try some local food for dinner. For the next 4 days, we have an appointment at the clinic at 1:30 PM. The greatest challenge from this point forward is figuring out how to entertain Riley all day!

Just a note regarding the flight yesterday, the first leg from Orange County to Houston, Riley was apprehensive about getting in his seat belt for take off. Fortunately, we had a crew who all had people close to them who had children with Autism. It's amazing how someone changes when that's the case. They just told us that they had to advise us of the rules and then what we did was our choice. He ended up sitting on Zack for take off and on me for landing. But the good news is that on the second leg, he was great! We practiced as we were sitting on the plane taking the seat belt on and off and once I gave him the control to do it himself it was like magic. He wore it for take off and landing with no problem.

Thanks for all of your thoughts and prayers for Riley.

Suzanne, Zack and Riley