2 years later and still improving!

Hi all! I know it's been a long time since my mom has shared any updates but boy have there been lots of changes! I now am 5 years old, can move around in a walker, have quite the personality and have begun the process of self-feeding! I think all those stem cells really helped me out! My parents want to take me back to get some more in the next few years, but for now are just enjoying the person I'm becoming!

Unfortunately I still have seizures every once in a while, but my strength isn't diminished. I work hard on a daily basis to get myself around...the military, arm crawl is what I'm beginning to master now! As I said before, I also work sometimes on my walking, and I spend lots of time sitting up, playing with my toys, the favorite of which is my sister Soraya!

I still get lots of therapy and an occasional botox injection to help my tight hamstrings, but through it all I remain a happy guy! I'll do my best to make sure my mom gets on here more often to give updates, but for now that's all we've got! Hope everyone is well and we'll see you back here soon!

All finished!

Well the time to start packing up to head home has finally arrived! Yesterday I received my last stem cell treatment, and I'm feeling wonderful! Actually stood on my own today, unsupported even by a table, for about 10 seconds! I'm happy that I'm making improvements, even if they are small for now! The doctors here say that the next 3-6 months are crucial for the most gain. They've told my parents to get me into an intensive therapy program, and I should really take off! My mom is looking into Crawl, Walk, Jump for now, but is interested in any suggestions people back home may have for me! She's also looking into hyperbaric oxygen treatments, but the doctors here said that those should be after the first six months as too much oxygen like that could actually render the new stem cells useless. Mom is also considering purchasing an electro wave machine to use with me at home. They only cost about $400 here and are not readily available back home, but she's still not sure about that! So besides deciding about that, all we really have left to do is pack up and say goodbye.
Today we snuck out to Laoshan Mountain for a beautiful excursion to the home of Taoism (Ying/Yang philosophy) and some of the original Buddhist texts translated to Chinese from India. This area of the country really is the historical base for spirituality in China as Confucius did his thing not too far away from here as well. It was absolutely beautiful! We even took a chair lift up the side of the mountain and back down again! I rode with mom and Soraya, and dad rode with a friend who came along with us....it was breathtaking! We also visited the Buddhist and Taoist shrines and a tea house in a small village where we drank like 4 different kinds of mountain teas! It was a lot of fun! Nice to finally be outside in China breathing relatively clean air, instead of the usual contaminated sort! We went on this trip with a guy named Marcus from Tennessee who has been living here for 2 years and knows all about this area. I wasn't really supposed to leave the hospital the day after a treatment, but since I was doing so well and the weather was actually nice, my parents decided to break free for the day! We got back by 3, and so I only ended up missing one therapy session....it was all definitely worth it!
Tomorrow will be my last day with the therapists and doctors. Although hard to say goodbye, I am happy that I've had the chance to meet these people who have helped me so much! Actually, everyone here has been great...doctors, nurses, translators, camera crews, other families, etc. Saturday is my free day, and we will spend it doing last minutes things (dad will shop; mom will get a pedicure and massage, and Soraya and I will...well we'll have to tag along with them! Such is the life of a little kid!) Sunday we leave here for Shanghai, and then we leave for Detroit on Monday morning! We also get home Monday morning as well due to the time change. I can't believe my time here is drawing to an end! It really has gone faster than I thought it would, and I'm feeling much better than expected! So, even though it will be sad to say goodbye to all these great people, Qingdao, Beike Biotech and China in general, I must say that we are all very excited to get home...'cause just like Dorothy says in the Wizard of Oz..."there's no place like home!" See you all soon!

5 down, 1 to go & standing on my own 2 feet!

Hello everyone! I had my 5th stem cell treatment today via IV and I am feeling amazing! After my treatment I was hanging out in the lobby while my parents were talking to the other families who are here! My dad stood me up and then got into this conversation about movies and forgot about me...you know why? I stood at the table on my own and actually tried to play with toys for at least 10-15 minutes without falling once or getting wobbly! Although my mom has been seeing me progress like this during my time here, this was the first time that my dad actually saw it, and he was AMAZED! He picked me up and hugged me and then stood me back up at the table where I continued to play on my own! I turned my trunk around to look at him without falling and even grabbed his hand! I'm glad he finally saw me like that!
But he's not the only one I surprised today! While I was in electric wave therapy this morning I was making all sorts of noises and my mom was filming me. Being clever as I am I waited for her to stop the camera and then started saying.."mama...mama...mama" She nearly fell over! Not so sure I can do it again on command right now, but I'll get there! Glad I could thrill my parents like that today...like I said...I'm feeling great!
As far as our time here goes, we will be leaving soon and still want to do some things! I have my last treatment on Wednesday and that will be a spinal injection. Hopefully I will do well, and we can get out before we leave. We never made it to the mountain the other day because it was threatening rain so we are going to try again this Thursday. My parents also need to grab some last minute souvenirs, and figure out what we are going to do with our day in Shanghai on Sunday. We leave here Sunday morning and leave Shanghai on Monday morning. Because of the time change we actually arrive to Detroit Monday morning as well! Kinda crazy!
So with such little time remaining I'm going to keep this entry nice and short! I'll probably check in again at least one more time before we leave, so until then I send lots of love to all! Bye!

4 down 2 to go!

I just received my fourth stem cell treatment, another spinal injection, and now I only have 2 left...one next Monday and one next Wednesday! Our time here is quickly drawing to an end! We leave here on the 19th and will be home on the 20th! I know I can't wait, but my parents and sister are just as anxious to get back! Nevertheless, we are all trying to make the most of our time here and enjoy what we can! Since I'm doing so well with the treatments ( I have not had any negative side effects at all), my family is trying to take in as much of China as possible between therapy sessions and treatment days!
A couple of days ago my dad went shopping with the daughter of another patient here who happens to be Chinese. She really helped him out but also introduced him to the fine art of eating food on the street! Besides some amazing grilled squid on a stick my dad also ate BUGS....yuk! Glad I didn't have to partake in that meal! Mom and Soraya hang out here with me most days, but they are venturing out tomorrow while dad sticks behind with me! They are going to a Buddhist temple, to sea the seashore, and then to a shopping center. On Sunday we're all venturing out on a tour to Mount Laoshan, where one of the most sacred Daoist temples in China is located. We are excited about getting out and seeing the countryside..a nice alternative to these hospital walls!
As far as my progress is concerned, I think the most noticeable change is how interested I am in toys and playing with whatever is put in front of me! I think I might be a bit stronger as well, but I think most of my changes will come slowly over the next 6 months or so! I'm glad we came here, and that I am responding well to these new cells in my body. I hope that I will continue to grow and become stronger with each passing day! I know that we all would be excited about that outcome! So, with only about 1 week left, I'm going to do my best to get all I can out of the electric wave therapy, the PT/OT, and the acupuncture so that my progress will continue forward!
I love all of you very much and can't wait to see each one of you when we get back! Lots of love...

2 weeks down, 2 to go!

Well today I received my 3rd treatment (2nd spinal) and all is going well! I think I can see more now, and my family notices me more involved in following voices, conversations and movement. I love reaching out for things now, and I constantly trying to put my spoon in my mouth if it's in arm's reach! I think my mom has figured out that all these new stem cells have my body working overtime, and I'm hungry! The nurses actually weighed me today and I was almost 29 pounds, which means I've put on like a 1 1/2 since I've been here...may not sound like a lot, but that's quite a feat for me!
My mom also is trying new foods with me here in China. I'm doing well with yogurt (kiwi yogurt...mmm, yummy!), and I have also tried cheese and ice cream without any problems. For those of you who don't know, I have a ton of food allergies but they seem to be disappearing slowly but surely! My dad is my new sleeping buddy....we cuddle up together every night and my mom and sister do the same thing! Soraya is very excited about going home in 2 weeks...she, well all of us really, misses home a lot! She's made some friends here, but she can't wait to see our "big" family as she calls it...Sittee, aunts and uncles, cousins, etc. I miss my bed more than anything else...well maybe not as much as my Sittee, but pretty close!
We went to go see the zoo and botanical gardens this weekend. The zoo was very sad because all of the animals were caged without any room to roam. They weren't well cared for either. My mom and dad were very disappointed by the whole experience. The botanical gardens were ok, and Soraya had lots of fun going on some amusement park rides inside of the gardens. We hope to make it to the beach next weekend for some good old fashioned relaxation in the sun! I have another spinal treatment on Friday, so if all goes well we should be beach bound on Sunday! I will get 2 more treatments next week...one spinal and one IV, and then we'll head home on the 19th, arriving to Detroit on the 20th, so the 2 week countdown has begun!
Well, I guess I'll sign off for now. Hope everyone had a happy 4th of July! See you soon!

Spinal Success

Well I guess I should let everyone know that my first spinal injection of stem cells on July 1st was a big success! I took well to being put under and have had no bad side effects from the procedure....seems that me and these stem cells were meant for each other! I have been tired all day though...and very hungry too! I couldn't eat for 6 hours before or after the injection, so today I made up for it! I also have finally adapted to the time schedule here and my parents are VERY happy about that! Hopefully we can all start sleeping until at least 6 or 7 in the morning instead of our 3 or 4 am wake up calls we've been having!
My dad and sister have been doing a lot of sight seeing over the last couple of days while my mom has been hanging out with me! Tomorrow we all have the day off together and might make an excursion to some underwater parks they have here...should be fun. Sunday we're going to try and make it to the zoo and botanical gardens since we were rained out last week! Hope we can enjoy these days off because next week, Monday and Friday, I will have 2 spinal injections, so it will be quite an intense week coming up.
I think I can start feeling these stem cells buzz around in my brain. I'm very alert now all the time and really seem much more aware of everything around me. I've also figured out how to grab my spoon and reach for things out of my grasp! When I woke up this morning, I inched my way to the edge of the bed and grabbed my bowl and spoon from the night stand and dropped them on the floor. I was so hungry I wanted to see if I could get some food that way. It worked! My mom was so startled by the stuff falling on the floor that she got up and gave me breakfast! She's been so happy all day watching me do small things like that....just my way of showing her that all of the hard work to get me here was well worth it!
Ok, so I'll sign off for now. Hope everyone has a great July 4th! See you soon!

Success so far...

Hi everyone! Since my last entry I have had my first treatment of stem cells, and I must say it was easier than I thought it would be! On Friday, I got my first IV treatment and it took about one hour for the bag to drain into my system! After that I was a bit tired, but then I got hyper...kept my dad up most of the night! I'm still adjusting to this time schedule, but I think I'm starting to feel some effects of the treatment. I had no bad side effects...no throwing up, no fever, no headaches, but today I think I really surprised my mom. We were getting ready to go on a tour of the city and we were in the lobby playing at a table. My mom stood me up beside the table and I stood on my own for like 10-15 minutes and played on my own with the toys on the table! My mom was amazed but couldn't go get the camera to film me...but I'm sure I'll do it again soon for everyone to see!
So we went on a tour of the city that ended up being wonderful. Yesterday my family ventured out on our own and took a taxi to the shopping district but the experience was a bit surreal, and my sister and I really didn't want to be with all those people in the hot, sticky weather. Today, however, it rained and so the weather wasn't that hot or humid! So we returned to that shopping district on a bus that we rented with 4 other families. My parents bought almost all the gifts that they needed to get plus a couple of things for themselves as well! After shopping we went to check out the coast, the public beach and the main pier...all very beautiful. Downtown Qingdao is gorgeous...very modern, very manicured, very hip...even saw a few Starbucks....they are EVERYWHERE! My mom is going to post some pictures on here when she can so that you can all see what it's like! After all the touring we went to a fabulous Italian restaurant. It was so good for my parents to relax , enjoy the food, and get to know the other families a bit more!
So now we're back at the hospital and my parents just got the schedule for this week. From now on I will have 2-3 hours of therapy a day...PT, OT and Acupuncture! My next treatment (and all the rest too!) will be a lumbar injection on Wednesday, July 1st. I will have to be put under with a local anesthetic and then lay still for 6 hours after the procedure is done. These treatments are much more intense so I could have some side effects, but hopefully I won't! I can't leave the hospital the day before, the day of, or the day after, so we'll be around here a lot! I have Friday off and next Sunday too, but the treatment schedule for the following week will include two lumbar treatments, so we're going to have to lay low or split up...Soraya and dad or Soraya and mom will have to go out while someone sticks behind with me!
Ok...well I'm going to sign off for now. Hopefully I will have more to share soon! Thanks for joining me on this journey! See you later!