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.

Stem Cell Therapy and Autism

This is an interesting article issued by the Journal of Translational Medicine co-authored by one of the doctors, Dr. Fabio Solano, who works at the Cell Medicine Institute in Costa Roca. The importance of the article relates to how stem cell therapy helps people with autism, along with all of the other known therapies. This is a good read for those on the fence about the use of adult stem cell therapy in conjunction with autism.

The Success of Adult Stem Cells is not new!

Earlier this year, CBS news interviewed a young man who had developed MS (multiple-sclerosis) during high school. The Northwestern University of Chicago was conducting a study, and this man met the requirements. The use of HIS OWN stem cells was part of the study. Click on the link for yourself to read and hear in his own words, how he is recovered and the MS "disappeared!"

The Global Post writes about stem cells

On October 12, 2009, the Global Post issued an article about the pros and cons of adult stem cell treatment and the fact that Americans make up 90% of the stem cell patients flocking to Central America for this invasive and amazing treatment. The debate continues between whether some doctors in Central America are giving people false hopes and that adult stem cell therapy is not as successful as embryonic stem cells. We have read and heard of story after story of the healing powers of adult stem cell therapy. We are praying Riley will be one of those stories, which will help spread the good word so that others can get the help they need!

Stem Cell Use and Research

According to The New York Times on October 28, 2009, the state of California has awarded universities and businesses $230 million in grants to develop therapies for the use of nonembryonic stem cells. This is a big plus for everyone! The controversy is well known and goes way back. However, without the use of adult stem cells; we might not have the opportunity to try something like this for Riley.

Knowledge is Powerful

We would like to thank Daniel and Ruth Faiella for allowing us to use their son's (Matthew) photos here on our blog for Riley. As you can see, on the right, there are three sets of pictures. These pictures depict what Matthew goes through (hence, what Riley will be going through) during each stem cell transplant procedure. Click on the picture and you will see the photo gallery for that particular trip. They have been interviewed by the media many times for their choice of this "invasive" treatment for their son. As parents of a child with autism, you will go to any length to bring out all that child has inside for the world to see. Amazing!!! - Thank you again Daniel and Ruth for all the knowledge you have shared. Your information has shed much light in this somewhat dark tunnel. Many blessings for Matthew's fourth treatment next month. If you wish to visit their website, feel free!

Costa Rica - Trip #1

There are so many things for which to prepare. We are really looking forward to our first treatment. Each treatment consists of four sessions during the week we are in Costa Rica. Day one drawing blood, taking vitals, preparing for the procedure, etc. They will place a catheter in Riley's arm, which will be the method of transplanting the stem cells into Riley's body. This catheter will either be wrapped onto his arm or have a temporary cast placed over it. The catheter will be used for each of the four treatments during this week. He will not be allowed to get it wet, take it out or off. We're going to try our darndest to keep him busy! Luckily, we have another family, one of only 60 who have had this procedure performed on a child with autism in Costa Rica, will be there the same week we will be. Hopefully, it will make our first trip easier to have a family who can show is the ropes. You can see pictures of their son's, Matthew, first three stem cell treatments on the right side of this blog.