Saturday, August 29, 2009

Coming Home!

Well we leave today to head home. We will be home Monday morning. WHOO HOO! Joey has been excellent this whole trip. Please pray for a safe and quick trip home for us.

We have had so many people ask us if we have seen results. I have noticed little things, but as each day goes by, I continue to question myself if it is just me imagining them or is Joey just having a really good day. Patience, that is my biggest lesson learned through this journey. It will take up to 6 months to really see what type of results we have gotten from the SCT. I always said that I would be more than happy with the smallest results, but I REALLY want the big ones. Once we get home and others see Joey that is when I will know if I am imagining anything or not.

In two weeks we will start Joey's 3 week intensive NeuroSuit session. This will really challenge Joey physically. I can't wait. My sister will have Faith there and my friend from Colorado will also be there with her daughter Makenzie (Joey's Girlfriend). I am hoping to also start HBOT in about 4 months. I just have to save up the monies for that. OH yeah, Joey will also do Tomatis again while at NAPA where he will have the NeuroSuit. After all this I am planning on starting Joey on G-therapy. This is a Homeopathic therapy he will take. He will be on this for years.

Ok, time for me to finish packing and to get us some food before we head out.

Thank you to everyone for keeping up on Joey and our journey to China.


Tuesday, August 25, 2009

What Do We See...........................

It has been 20 days since we left on our journey. We have 5 days to go until we head home. Joey has received 2 IV injections and 3 spinal injections so far. He has one more spinal on Friday. The big question asked is "Have you seen any improvements?' It will take 3-6 months to see the complete results from the Stem Cell therapy. However we have seen some small improvements. Joey seems to be focusing more. He has actually tracked our fingers a dozen times or so. His legs are also looser. He seems to have more control of them. He bends his knees and keeps them bent while relaxing. He also now uses his feet to push off the ground to move him around. Also this morning when he was waking up and stretching, he brought his arms over his head to stretch. He has never purposefully lifted his arms over his head. I didn't think his body was capable of even do that. So these are the improvements we have seen so far. I can now only imagine what we will see in 6 months from now.

Two weeks after we get home, Joey starts a three week intensive neuro suit session at the NAPA Center. This will really test Joey's physical improvements. 

I am very excited about what is to come. I already can't wait to come back again to China. BUT, for right now, it is time to come home. 5 more days to go.

Bye for now.

Sunday, August 23, 2009

The World We Live In

The world we live in, not your world, but my world. The world I am talking about where special needs kids and disabled people are normal. 

The world where no one is looked at with a crooked smile or squinted eyes or with a look on there face of sympathy. 

A world where you are not explaining to everyone the difficulties of your life or trying to make other people understand and feel better about your situation. 

The world where only we can make jokes about our lives and it be funny to only us, were you might take offense. 

The world where feeding tubes, drooling, falling, slumping over, changing diapers, special diets, wheelchairs and walkers, are normal and not even looked at twice. 

Where helping another is just second nature. Where the smallest physical or cognitive improvement is like winning the lottery. Where you take nothing for granted. Where you appreciate your abilities more and more each day. 

A world where your disability is not a bad thing. 

In this world you don't compare what one can do and the other can't. You celebrate what everyone is capable of doing all the time. 

It is not a bad world or a world of unhappiness. 

Our world is not worse than your world. 

Our world is just different then your world and unless you have lived in both worlds you would NEVER understand. You can only imagine. 

The world where I pray you would NEVER have to be a part of. The World I Live In.

Saturday, August 22, 2009

Side Effects to Stem Cell Therapy

Joey has had 4 Stem Cell injections so far. He still has 2 more next week and then he is done and we come home.

I have had many people ask what type of side effects could Joey experience from the procedures. Well during all my research, no one had any negative side effects to report. I still don't have any negative side effects to report either. 

Amongst all the people here we have agreed that there are side effects. 

1) Everyones appetite has increased (including non patients, LOL!). Joey eats 3x the amount of breakfast he normally eats and then continues to eat every 2 hours after that. He is going to gain 10lbs from this trip. 

2) Another side effect is after the injections all the patients seem to have increased energy. No one can sleep that night after the injection. So that keeps the rest of us awake. We then play Ping Pong throughout the night.

3) Also after the spinals, they have sore backs. Nothing Motrin can't cure.

Well that's all to report today.


Wednesday, August 19, 2009

Update After Spinal

Playing the Wii with Grandma and Braden

Back from his spinal.
Monkeying around.
Standing around

Joey did really good yesterday after his spinal. He did much better than the first time. They gave him more drugs to knock him out during the procedure, so he slept longer after. I then gave him some Valium after 4 hours, but I don't think I gave him enough, because he didn't relax at all.  

He is being such a good boy during this whole trip. He has therapy today then we are going shopping tomorrow and an IV injection tomorrow afternoon. Then therapy on Saturday and a day off to shop and hang out on Sunday.

We only have 12 more days to go and then back to the grind.

Thanks to everyone for all your thoughts and prayers.
Here are some pictures of our trip. More pics and videos are on

3rd Injection Done

Today Joey had his 3rd injection. This one was a spinal. He is doing really great. Still waking up from the procedure. 

The last couple days have been slow. Yesterday we were stuck inside due to a small storm, however, we were able to go to dinner.  Today we were also stuck inside because of the injection, Joey can't go out. I got a small stomach bug, nothing to bad. Joey has been working hard at his therapy and me and my mom have been going a little stir crazy.

We have meet a lot of great people and have heard a lot of amazing stories. WOW, stem cells really do work. Joey has had some small improvements already. Over the next six months is when we will really see what these stem cells have done for Joey. I'm very excited and nervous to see what they bring.

Jeremy, Jessica and Jack are all doing fine at home. My in-laws and step mom and dad have be invaluable to our family during our adventure. A big hug and kiss and thank you goes out to them.

Also a big HUGE thank you to my mom who has come on this adventure with me. I couldn't have done it without her.

Whatever it takes, No matter what! 

Sunday, August 16, 2009

Our 2nd Week's Schedule

Today we had a day off from the doctors and therapist and treatment altogether. So we took a trip to Downtown Qingdao. We went to the Polar Express (kind of like a Sea World). It was super hot, but fun. We then drove around downtown Qingdao and had the best dinner buffet I have ever had. Our interpreter Michael and friends Aaron and Braden went with us. We had a fun day. Tomorrow we start a new week.

Our week is similar to last, except we have therapy all day on Monday and a spinal on Wednesday. He also has an IV injection on Friday, but that is not until the afternoon, so we are going to go back downtown to do a little shopping.

I think Grandma Marleen and Joey are really bonding here. He sits so quietly on her lap all the time.

Overall the trip is good, no complaints. I would do it again.

Friday, August 14, 2009

Joey's 1st Lumbar Injection

Joey and his new friend Braden

First I have to say Joey has been great this whole trip. He hardly fusses and he will sit in his chair and just hang out for a long time.

Yesterday (Friday for us) Joey had his first lumbar injection. He was not allowed to eat or drink for 6 hrs before and 4 hours after. He also had to stay on his back for 6 hours after. That was the tough part. The nurses took him in at 3:30 and he was done by 3:50. As he was waking up from the procedure he was talking up a storm (yep it runs in the family). He stayed calm for about 2 hrs (he was wide awake but calm) after. Then he got tired of laying on his back and began to get really fussy, with 4 hours of bed rest to go. It took the Dr. about an hour later to bring Joey some Valium. When they inject the Valium it burns and hurts so of course Joey screamed, but as soon as it was in he was fine. He literally knock out in 20 seconds, but that only lasted for about 3 minutes and then he was wide awake again. So to say the least the Valium didn't really work. I had to lay with him the rest of the time. My poor achy back. Joey didn't get sick or have any issues with the procedure.  So all in all the procedure wasn't to bad. I'm not sure of our schedule for next week, but Joey will have 1 or 2 more lumbars.

Now we pray that the stem cells hit the parts of the brain that need healing. Go Stem Cells Go!

Today, Saturday we are going to go down to Century Park where they held the Olympic ceremonies. We are also going to the Holiday Inn (fancy hotel here) to have some American food. We can only eat so much Chinese food.

Well that's it for today. Please send some extra prayers out to Joey's friend Santana and his mommy who are in the hospital again. Hurry up and get better Santana. We love you guys.

Tuesday, August 11, 2009

First Day of Therapy

Today was Joey's first day of therapy. Boy did he need it. He has been so tight. He is much looser now, but still has a way to go. He did PT  twice, standing therapy, Electric Wave therapy and Acupressure today. I think by the end of the week he will be back to normal. 

We went to Pizza Hut for dinner. This Pizza Hut is not like home. It is a fancy restaurant. They service you and the pizza is better than at home. We will be going there again.

We are adapting fairly quickly here. Joey actually went to sleep at his normal bedtime hour. Hopefully he doesn't wake up at 3am.

Everything is very inexpensive here, except for American food and supplies. One of our friends bought a can of AW Root Beer and it cost him $9. They do not have to go boxes. Everything is just put in plastic bags. Cars have the right of way and kids don't wear diapers, they pee and poop in the streets. Although the streets are very clean, go figure. Locust buzz in the trees and it sounds like live electricity. People stare like crazy at us. Many have never seen Americans before. The hospital staff is super nice and helpful. Everyone wants to help always.

Well that's about it for now. Joey has more therapy the next 2  1/2 days and then a Spinal injection on Friday.

I have posted videos and some pics on

Sunday, August 9, 2009

Schedule for the Week

We just received Joey's schedule for the week. It looks like the following:

Monday - IV Injection 4pm
Tuesday, Wednesday and Thursday - 8:30 - 10 Dr. visits
                                                                       10:15-11 PT
11-11:30 Standing Therapy
1:30-2:15 PT
4-4:20 Electric Wave Therapy (OT)
4:25-4:45 Acupressure (OT)
Friday- 8:30-10 Dr. Visits
               10:15-11 PT
                11-11:30 Standing Therapy
1:30 - Spinal Injection ( he can't eat 6 hrs before and 4 hrs after and has to lay on his back for 6 hrs after, I                                                                         don't know how I'm going to manage that)

Saturday and Sunday are our free days to sight see.

I'm very excited about our schedule. We will get a new schedule every week.

Bye for now.

Made it to China

Wow what an adventure so far. It took us about 17 hrs of flight time to get to China. We flew on three different plans. Joey was great the whole time. He only had fits going through security, which actually made it easier for us because we got pulled aside and made it through security with help and not having to rush. Finally after the second day we made it to our final destination. It is 15 hours ahead of CA time here. When we got here we got settled in our room and of course we are all off on our sleeping. Joey has been falling asleep early and waking up early. Our room has two beds a mini fridge, microwave, tv and dvd. It is an average size room.

We will find out today our course of treatment. On the first day they came and took blood from Joey, he had and x-ray and EEG. Boy are there medical instruments old school. Joey will get more blood taken this morning and then at 4:00 will have his first IV injection. We are going to see if we can add in another injection before the end of the trip, so we might do 6 not 5 injections. We will see later if this is possible. We were told that we will have two days off a week to go and sight see. 

There is a huge mall, target like store and market right across the street. The hospital will take our lunch and dinner order and order food for us, or we can go to KFC across the way or the mall. I ordered noodles soup at the mall to go the other day and they dumped the soup in a plastic bag. It was funny. Everything is fish here, NO BEEF. ha ha ha The people here stare at you. They are not subtle here. They stare and follow you with their eyes until you are far out of sight.

We have meet a lot of people here. There are many people from California. One gentleman actually lives only 15 minutes away in Northridge, another in Calabasas and another in San Jose. Small world. Most people are her for 5-6 weeks doing as much therapy as they can. Many people are here with their whole families. We have been hanging out with a gentleman and his son who are here for 40 days. the boy starts his treatment the same time as Joey. The boys name is Braden and has CP like Joey. He is 6 yrs old. Looks just like Joey.

I have ichat on my computer, so anyone that has a mac computer and want to talk, my email is It is very cool.

I am going to post videos and pics on Joeys dropshot site. The site is
I will also try and post some here. Well thats all for now. The internet is controlled by the government here so they can shut it down whenever and many sites are blocked, so bare with me when sending emails or wanting to talk.

Bye for now.