We're back...Stem Cell Trip # 2

We are off to Panama today, September 5th, for Riley's 2nd Stem Cell Replacement Therapy. Our first visit was in November 2009. The office in Costa Rica has closed, so we will be going to Panama this time.

We are excited about the potential for further improvement for Riley and are looking forward to the trip. We are told that it is a great area and there is much more to do than there was in Costa Rica. There is even a small grocery store across the street from our apartment that has lots of GFCF food, so I may not have to bring a suitcase full of food this time!!!? YEAH!!

Riley started school on August 25th, and so far he is kind of having a difficult time getting back to a "routine". We had a lot of fun this summer and spent a lot of time together, so I feel that he is just going through a little readjustment period. We are so glad to see him asserting himself, i.e. his opinions regarding what he does and does not want to do. Riley is not just a little "puppet" anymore. He lets us and his teachers clearly know what he wants to do and what he DOES NOT want to do. He does this through pictures, gestures and simply showing you. Riley's receptive language continues to improve. I feel like he clearly understands everything we say. Sometimes I need to say things slower than I would to my other son, Conner, but overall his comprehension is wonderful.

For example, today, he was playing on the computer and then he decided he wanted to switch to the Wii. I just told him he could play the Wii once he had turned off the computer and he went over to the computer and turned it off and then came to the Wii and got the remote and started playing. Also, when I dropped him off at school, he wanted me and didn't want to stay at school. I was able to explain to him what time I would be back to get him and then reminded him that he had his favorite snacks in his lunch such as pudding and pretzels and he proceeded to kiss me "bye" and went to class with his teacher.

Riley also got a "go-kart" about a month ago. He wanted one because he saw a boy at the park riding one and was insistent that he wanted to ride it. We bought him one just like it and he has a ball on it!! He loves the thrill and is very good at controlling it and listening to us when we tell him to slow down, turn around, etc.

Riley's speech continues to improve at a VERY SLOW pace. He tries really hard and has lots of new approximations and sounds. We are encouraged that he continues to try so hard and does not get frustrated often at all. We just praise him like crazy when he does say something. I think sometimes we scare him because we get sooooo excited when he says something new. He is great at writing his name and we moved on this summer to other letters and he does well, but we have to take it slow.

His favorite and most motivating thing to do right now is getting to swing on a blanket and get thrown on the couch. He will do just about anything we ask to get to do this repeatedly. The good thing is that his favorite things change. He does not get stuck on one thing for an excessive amount of time anymore and moves on on his own, naturally.

We will post videos when we return from Panama. Thank you all for thinking about Riley and continuing to ask about his progress.

All our love, Zack and Sue

March 22, 2010 - Update

Thanks to everyone for continuing to ask about Riley and pray for him and encourage us. This journey of autism really changes who you are. We have been forced to value different things in life. Some say that's a good thing....jury is still out for me!! I believe that before "the world of autism," we were people who had values in the right place and that our focus was in the right direction, but I guess we can always be further "refined". Well, now we definitely value things that maybe we did not before such as your child saying "hi" or "can I have some candy" or any of those things that were just so "normal” before....now, we have truly realized that those are all miracles. Each and every one of those moments is a gift.

We have been back from Costa Rica, where Riley received the first "batch" of stem cells, for 16 weeks now (who's counting???)!! I believe that Riley continues to benefit from the procedure. The one thing I feel is the most profound at this point is the amazing improvement in his receptive language. For anyone who may not be familiar with this, it just means that he really understands what people are saying to him. For example, today in the car when he and I drove up to the house after school I said, "Oh Riley, look, we forgot your buckets and shovels in the bark yesterday on the side of the house." Well, as soon as we got out of the car Riley went into the garage and got a shovel and went to the side of the house to start shoveling bark where we were the day before. Before, I would have really just been talking to myself and saying things like that just wishing that he would understand but knowing in my heart that he just didn’t. Well, now he does......and this is only one of MANY examples. I would say that these new skills are evident many times a day. His therapist at home, LeAnn, has also noticed this and commented on it to us.

Riley is also continuously selecting new toys to play with without being prompted to do so. He often comes and brings it to one of us to join in with him. He has become really good at playing "Mario Kart" on the Wii. We knew that this was coming because Riley does seem to be really gifted electronically, but I am still in awe when I watch him play. He also continues to play new games on the computer and teaches himself each time. We rarely need to show him how to navigate anything on the computer.

Riley continues to be a great sleeper. I attribute this to homeopathy as much as I do to the stem cells. Also, it is important to note that this really hasn't ever been a "problem" for Riley. I always say that I can handle anything if I get a good night's sleep!!

I believe that Riley continues to come into our world a little bit more all of the time. He is just "more aware". I am told that Riley is doing well at school. He is meeting his goals pretty quickly. These are goals that I agreed to thinking that would probably take the year to meet and he has met some of them already. All of a sudden he is getting "colors". This was a really hard concept for Riley to grasp in the past and we never could quite understand why. But, finally....he is getting them and it's exciting. Riley is inconsistently successful with potty training at school but just won't go on the potty at home. This is the ONLY area that I feel that Riley has experienced regression. There were several months last year that he was looking like he was going to be potty trained and then he just stopped going at home!! For various reasons I have been able to see that this is a choice for Riley so I am hoping that in his own time he will decide that he needs to stop wearing pull ups!!

We are planning to go back to Costa Rica in September instead of June now. There are a couple of other therapies that we are going to try before returning and then hopefully Riley's body will be ready to receive the stem cells and utilize them to their maximum capacity. I am excited and hopeful about going back. I promise to keep you all posted more frequently!!

Zack and Suzanne

HAPPY NEW YEAR!

Hello everyone....Christmas has passed and here we are in the New Year. There have been several things that Zack and I have noticed Riley has done over the break that are just "a little" different for him.

As I have mentioned in the past, he continues to gain a new level of independence. In a nutshell, I feel that Riley is "starting to live in our world a little more." For me, it is painfully slow, but I feel strongly that we are moving in the correct direction. Over the holidays, my Dad and his wife, Rochelle, visited for a few weeks and stayed with us most of that time. I saw Riley more interested than ever before that they were present. He actually asked for help gesturally several times to both of them. He enjoyed my Dad sitting with him and watching him play Wii and he knew that if he needed help (which he rarely does anymore) that my Dad was there to assist him.

In the past, I mentioned that Riley had discovered himself in the mirror. He continues to play in the mirror just so inquisitively and you can see his wheels spinning as he is just wondering, "How is that little boy in the mirror doing the exact same thing as me?" He even tries to trick "him" by hurrying and crossing his arms and then slowing down, etc...to see if "that little boy" can keep up with him. It is so fun for me to watch as he discovers himself. Because the mirrors are on my and Zack's closet doors he has also become fascinated with playing in the closet and one by one requesting various people to join him (gesturally of course....at least for now). He shows everyone else where he would like them to sit and wants to be certain that each person remains where he placed them until he "dismisses" them.

About one week ago, the Sunday evening before Conner was to go back to school from the holiday break, Riley brought Conner into the closet requesting him to join in his "closet games". As I lay in bed, I could hear them talking....Conner would ask Riley what he wanted him to do, etc...this went on for a while and then I told Conner that it was time for him to go to bed since tomorrow was a school day. Then he responded to me one of the most wonderful things I have ever heard.....he said "but Mom, this is the most that Riley has ever played with me....can I just stay up a little longer?"

Well you can imagine how I responded....they continued to play and I just listened. For the first time ever, they were really playing together!

Riley has also become more assertive about the things that he wants and does not want. This is not always fun for us, but I know that it is good because it is typical. He has quite an opinion at times. He has learned how to get out of his booster car seat while the seat belt is still fastened and then join me in the front seat while I am driving. You can imagine this is quite the problem. So, we had to go back to using only the 5 point harness car seat that he has not figured out how to get out of YET. Well, I guess we have to take the bad with the good. We hope for continued improvement.

We plan to go back to Costa Rica in early June. Thanks for all of your continued support, prayers and encouragement.

Suzanne and Zack

Riley showing signs of improvement

Hello Everyone -

It has been a couple of weeks since we last updated you about Riley. He is doing well. There have been several little things that have surprised us that we contribute to the stem cells continuing to do their job.

Riley definitely struggles in the area of pretend play and he enjoys doing my hair with the brush and the blow dryer. He will grab the brush and the blow dryer and gesture for me to sit down on the stool and then he "styles" my hair. This shows me that his imitation skills and his imagination are growing nicely. He has done this at least 3 or 4 times in the last couple of weeks.

Zack (Riley's Dad) went out of town for three nights and I asked Riley if he would like to sleep with me. He really has always preferred to be in his own bed, which is wonderful but not really typical. My older son would have given up anything to sleep with us any night we were willing to let him. Well, I think I sort of created a little issue but I am okay with it!! He LOVED sleeping with me and I secretly loved that he loved it....... After the first night, when I tried to lay him in his bed as usual he strongly opposed and took my hand and brought me to my room and put me in bed and then he closed the door and joined me in the bed. He had a plan. We have since been able to transition him back to his bed and things are back to normal, but he loves to come into our bed when he wakes up and snuggle with both of us whereas before he was ready to be entertained the second he woke up.

Last week at school, Riley bit a child for the first time ever. We asked the teachers the context of the situation and they said that he was playing with a car and another child came up to him and took his toy so he bit the child. As sad as I was to know that he bit a child, I was glad that he defended himself and that he cared enough to respond.

Riley has always enjoyed playing the Wii, but he wanted us to play for him. Now, in the past week or so he has taught himself to play a few games on his own. He is really becoming good at it and he entertains himself at the same time. These are just a few of the significant things that I wanted to share with everyone. I believe that there is a lot of work going on in his body at all times. I think that the stem cells are hard at work and of course we are hoping to see some improvement with his speech ASAP!! He continues to try really hard and we are just trying to encourage him as much as we can.

Thanks for all of your prayers and concerns and we will continue to keep everyone posted. We did get a new edition to our family last week....Cooper (a dog). Conner has asked for a dog for the past 5 years and we finally felt that the timing was right. He is a wonderful dog and Riley shows a fair amount of interest in him. They play the Wii together!! It is really cute....more pics to come soon too.

Suzanne

Back Home...at Last

Hello Everyone,

We are so grateful for all of your love and support and concern for us!! We have been back one week from Costa Rica and we are just now feeling somewhat normal. I can only imagine how tired Riley must be because he is the one who actually has a tremendous amount of changes going on in his body. Of course the big question is, "How is Riley doing...have you seen anything different...?" Well, we know scientifically speaking that the stem cells will "max out" their potential in about 90 days. So, we are now 10 days into that from the last treatment. We have already seen some exciting things.

Of course, I am paranoid about imagining things...but, I have received positive feedback from teachers and therapists, as well as Zack and my Mom (who lives with us). So, I must believe something good is happening in his body.

The first thing that Riley did that was significant to me was when we got onto the airplane in Costa Rica, ready to come home, he looked straight into Zack's eyes and grabbed his face and kissed him. Riley is always happy to give us kisses when we ask but he does not initiate them spontaneously. A couple of days ago, I picked him up from speech and he did the same thing to me! It was so sweet. I think that in that moment if he could articulate what he was feeling he would have said, "I love you so much....thanks for coming to get me!" He had such amazing eye contact with Zack and I both when he did this and it was sustained and he wanted to make sure that we knew his intentions.

I will run through a few more significant things that we have noticed ......initiating wearing underwear and DOES NOT want a diaper. This is strongest in the morning before school so I am assuming he sees the other kids and feels strongly that he wants to be like them. He wore underwear to school everyday except Thursday and he DID have an accident a couple of hours into the day. However, we are thrilled that he is initiating this and plan to ask Santa to take the diapers back to the North Pole (Riley will be 4 on December 28th). Since he has 3 weeks off of school for the break the time seems appropriate to make this change happen.

There were a couple of times that I have seen him participate in a very complex, multi-step problem solving tasks. Yesterday, we were in the car and he said,"MaMa" and he pointed and I thought he wanted my bottle of water. I gave him my bottle of water and he said, "No WaWa (no water) and then pointed to my cup. I realized he wanted my iced tea. Yes.....my son LOVES iced tea!! The day before there was another issue in the car....it involved him really having to think through how he would get his pretzels into the cup holder and still have a place for his cup......you had to be there - but he displayed an ability to problem solve that I had not seen before.

Riley's teacher told me that he usually hums at school, pretty much the entire time that he is in her class (which is a couple of hours). She told me Thursday that he has not hummed at all this week. That is a really big deal to them as it is disruptive to the class and of course it is very significant to us as well because he can function more appropriately in a public environment. This was not something that he did at home. Zack and I rarely ever heard him do it so we cannot gauge his success at home.

Regarding language, this is the part that I am really paranoid of reporting because, as you all know, this is Riley's greatest challenge. We definitely feel that Riley has lots of new sounds and attempts at new words. My Mom said that the other night in the car she was singing Christmas songs with him and she said he was singing with her. Of course, not articulated but he was trying really hard. It's funny because just the day before Zack told me that he was singing with the radio on the way to school and I had not told my Mom this story....so it seems like maybe he is realizing he enjoys singing along...... we'll see! At home, we definitely see a lot more attempts to communicate in a more direct way and he is definitely more independent. He knows what he wants and shows us.

These are all encouraging things. Of course it's never fast enough for Zack and I, but we feel hopeful. Zack says, "If he gets potty trained over the Christmas Break then I'm really going to believe in these Stem Cells!!" Let's hope we make Daddy a believer!!

Our friends, the Galloways, left yesterday for Costa Rica with their son Matthew. We are praying for a safe trip for them and that Matthew has a positive response to the stem cells. I am asking all of you to pray for them as you did for us.

Thanks to all of you who are praying and wishing well for Riley!! We appreciate you.

Suzanne

The end of Costa Rica - Trip #1

Hello Everyone,

We are a couple of days behind with updating you. Today is Friday. Wednesday and Thursday were both days that we just went to the clinic in the morning and had the infusion of stem cells. We are getting approximately 9 million each day. We gave Riley Valium on those days so that we could infuse the cells. Again, it does not hurt him but he does not realize that so in order to be able to infuse the cells as slowly as you need to, we needed to take the edge off of his anxiety level. It worked really well and next time we will just know to do this everyday. The hardest part of being here is figuring out what to do the rest of the day!! We have attempted a couple of outings but none have turned out to be any fun for Riley. So far we see no changes in Riley. I guess it is pretty unrealistic to believe that we will see changes this quick but we are always hopeful.

So today was the last day!! We got the cast off...now Riley can take a bath and maybe go swimming (if it does not rain). We went to the hospital this morning. Got there at 10:15 and we were supposed to get the stem cells at 10:30 and the doctor did not arrive until 11:15! We waited one hour in the waiting room....not a fun way to start the day. We gave Riley Valium and within 30 minutes we were ready to get the final batch of stem cells and saw off the cast and take out the stitches and the catheter. It went fine. He was very curious to watch the saw even though he was doped up on Valium, but he tolerated it well. The thing he disliked the most was the doctor putting gauze and tape on the catheter site to stop the bleeding.

Normally, I would not put so much detail in the notes I send but there are some people reading these messages who will be coming here for treatment so I think it helps to know what to expect. These little details are what the trip is made of. Getting the stem cells is the easy part!!

Well, we are off tomorrow...back home!! We can't wait to be home and sleep in our beds. I am sure if Riley could talk to us he would say the same. Let's hope the flight goes well and with no delays. Thanks again for all of your support!

Suzanne and Zack

Costa Rica Day 2 and 3

Hello Everyone - (keep in mind as you read, this was written yesterday, 11/24/09)

As promised here is the update from yesterday and today. I did not get to it yesterday because it was a long day and pretty tough for Riley. Yesterday was Monday and it was the "BIG" day.

We went to the clinic for the first time and met with other families. There are 2 other families here for autism and everyone else has a different disorder. Riley is the youngest in the group by far. After having the meet and greet with the doctor and getting all of our questions answered and making decisions such as putting Riley in a hard cast versus just tape, etc..... we went back to the hotel and had another 2 hours before it was time to go to the hospital. This was particularly difficult because Riley was fasting and he was starving and wanted to eat anything in sight. Finally at 12:30 the driver took us to the hospital and it was time for the anesthesia and catheter placement. This was about as difficult as I had anticipated. He did not want to wear the hospital gown much less did he want to go to the Operating room with the DR. Thankfully they let Zack put scrubs on and go in with him for the whole procedure (which is how we got the videos for the blog). When he woke up he immediately wanted to take the cast off but he did get over that pretty quick and then we were fine. He cannot get wet all week, i.e. no bath, no swimming pool, no walking in the rain.....(it has been raining everyday here!!).

So today (Day 3), we went in for the first stem cell infusions. We get a total of 36 million cells over 4 days. This was a pleasant surprise to us since we thought we were getting 24 million. They just recently changed the protocol and increased the number......so now we are paying about $100 per stem cell instead of $150 (just kidding!!). Not sure what that math equals but I know I am getting more for the money!! The infusion was about as rough as I expected. There are no videos from today because all hands were busy holding Riley down so that they could infuse the cells. Although this is a pain-free procedure he was scared and did not understand that it would not hurt. We gave him oral Valium and that did not help so we just moved forward anyway. Tomorrow we are going to double the dose of the Valium and hope for a better experience!

The hardest part so far, besides him being so afraid yesterday and today, is filling all of our free time with Riley. Three more days of treatments and then we pack up to go home!! Happy Thanksgiving to everyone and thanks for all of your prayers. Gotta run since Zack is entertaining Riley by playing the Wii. My time is up.

Suzanne

Costa Rica Day 1

Hello Everyone -

Yesterday was the longest day ever......flying for over 11 hours is really hard for anyone but doing it with a 3 year old with Autism is pretty trying (he just recently has gained this new level of "independence" .....perfect timing!!). He was really great and tolerated everything, as well as could be expected. However, I learned that next time we will definitely NOT have a layover. Once he realized that we were getting back on an airplane his whole mood changed. On the first leg we had an angel for a flight attendant. He saw that Riley was having a hard time with his seat belt and just said to me that if I wanted to hold him he would be okay with that. When we initially boarded the plane and he greeted Riley and Riley did not respond I briefly explained to him that Riley has Autism and he said, "oh....I have a nephew that has autism so I understand"!! Isn't it amazing what a little perspective and reality will do for a person and their level of compassion. He continued to "break all of the rules" for us. When it was time to land, he told me to just hold Riley and then he told me not to worry about turning off his movie. He saw that Riley was so well behaved, as long as we could keep him entertained and he truly realized that Riley was safer in my arms since my little Houdini would figure a way out of his seat belt!

Our hotel is great.....very nice and new and clean so you know that relieves me a great deal. I did not know what to expect. If anyone reads this who is planning to come here for transplant, I HIGHLY suggest you get the two-bedroom from the beginning. I know that we will be spending a fair amount of time in the room so space is important (since we brought half of the house!).

Today, we went to the local mall which is a 5 minute ride in a cab. It was really nice. There was a little kiddish arcade and Riley really enjoyed that and there was an indoor train too. I think that gave him a little feeling of comfort and familiarity. He even got their version of a "Jamba Juice," i.e., a fruit smoothie. You would have all gotten a kick out of watching me try to explain his allergies to them in Spanish!! Riley really enjoyed the smoothie though.

We are heading to the Hyper Mart (like Wal-Mart) shortly to stock up for the week. And then to dinner this evening....they even have an Outback Steakhouse, Subway, Taco Bell, McDonald's and more. Since we have a full kitchen, I will be able to cook Riley's GFCF food and bring it with us wherever we eat.

Ahhhhhhh.....it feels like we should be done and we have not even started!! Glad to have yesterday behind me and looking forward to tomorrow. We have to be at the clinic at 9 in the morning for orientation and then the hospital for anesthesia and catheter placement at 12:30.

I really appreciate all of your prayers and support. If you will, pray specifically for Riley to be calm tomorrow and okay with being with the doctors, without Zack or I present.

All our Love,

Sue, Zack, and Riley

When you see a plane, don't you wonder, "Where are they going?" This time, you know where that little plane is going!

A Lesson Behind Every Obstacle

Stop for a minute and think about Your biggest problem. Now, think about what you are meant to learn from that problem. I mean, how do you come out of 'problems' by being a better person? The famous UCLA basketball coach, John Wooden, once wrote of initiative, "Initiative: Cultivate the ability to make decisions and think alone. Do not be afraid of failure, but learn from it." When we think about the 'bad' things that happen to us, we should look for the light at the end of the tunnel. We should ask ourselves, "What am I meant to learn from this?" "What am I meant to carry forward into my life and into the life of my child?" "What mistake/choice should I not make or make next time?" Often times, when bad things happen we instead ask ourselves, "Why me?" "What did I do to deserve this?"

This is a question many parents who have a child with a disability often ask themselves. The answer is not often easy to see...heck, it may even take years before you fully understand. If I may get slightly religious for a moment - a friend of mine believes of this group of parents - WE ARE BLESSED. Why, you say??? How, you say??? Especially, if you are the parent of a child with a disability...???

It's quite simple, yet complex at the same time. WE ARE BLESSED because God chose US to raise this child. It has nothing to do with being 'bad' and not listening to our parents when we were growing up. It is not a punishment. It is a blessing. Stop for a minute and think about this...of all the people in the world...God chose US because He thought we could do the best job for this child.

Again, feeling blessed or seeing the lesson is NEVER at the forefront when raising a child with a disability. However, when you hear stories of how other parents - perhaps a child is born unable to use his/her arms or legs, perhaps a child is born without eye sight, perhaps a child is born and cannot eat except to only consume nutrition through a tube? For a brief moment, we are reminded that life could be worse. Granted, it never takes away the sadness we feel because our child has challenges...but, it can make you ask - okay then, what lesson am I to learn? The lesson is different for everyone. YOU are the only one who can figure it out.

The lesson is what makes it all worth while. When we have a child, the last thing on our mind is what THEY can teach us or what we can learn from THEIR life. Do not give up on yourself and do not give up on your child. Learn the lessons and make as many good times as possible!

One last quote to think about from Coach John Wooden, "Success is peace of mind which is a direct result of self-satisfaction in knowing you did your best to become the best that you are capable of becoming."

Costa Rica - less than week!

Thank you everyone for your love and support. Your donations are so appreciated. We continue to be hopeful and scared at the same time. The days are down to less than a week. There is so much to pack and so much to do. So much cannot be done until a day or two before we travel. All the stem cell literature brings a positive energy to everything. We hope Riley will be an example for other children and adults needing stem cell transplant treatment.

The road to get to Costa Rica has been filled with list after list of to do's. Riley had to be tested for any fungi, bacteria, and parasites, as well as heavy metal toxicity testing. The heavy metal toxicity tests were low enough so as to not warrant a cancellation of the transplant. However, there was parasites and fungus present. Poor Riley has been undergoing an arsenal of medicines in order to prepare his immune system. This is essential so that the new cells do not spend all of their 'time' repairing the currently damaged cells. The new cells can do their work to replace Riley's immune system!

Each day I look at Riley, and I wonder what he'll say first...I hope he won't feel pain or much discomfort when they begin the treatment...I wonder what he will think when the treatments begin.

Mostly, WE look forward to hearing Riley speak to us. We realize this may take more than one treatment, and we are prepared for that eventuality. For right now, we will take each trip to Costa Rica -one day at a time.