Donation to Najib Puerto-Khalil Medical Fund

A video from Stem Cells China about Najib's experience

http://vimeo.com/8118026

Thursday, July 16, 2009

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!

Monday, July 13, 2009

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!

Friday, July 10, 2009

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...

Monday, July 6, 2009

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!

Thursday, July 2, 2009

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!

Sunday, June 28, 2009

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!

Wednesday, June 24, 2009

And so the adventure begins!

Well after months of preparation, planning and fundraising, I am happy to report to all of you that I am in China! Yes, that's right! We arrived on June 23rd after a looooooooooong flight to Shanghai and then a transfer to Qingdao. The flights were good, relatively comfortable, and both my sister and I slept most of the way. My parents were very happy about that! The food was even decent, and I got special meals with lots of fruit, meat and veggies that I could eat! When we were in Shanghai waiting for our connection we met another family traveling from Louisiana to the hospital in Qingdao as well for stem cell treatments. They are really nice and their room is just down the hall from us. There are lots of families here from all over....Australia, England, the US and even from the United Arab Emirates. Everyone talks a lot and helps each other out! We're like a giant family...all here with the hope of improving our lives....I'm the only one with Cerebral Palsy....lots of people are here with degenerative diseases and eye problems but no matter what the reason, we all have the common goal of getting better to some degree.

My dad and I can't seem to adjust to the time schedule here, so we sleep most of the time and then get up at like 2 in the morning! My mom and Soraya have adapted better, but we are all still out of synch! We are 12 hours ahead of home and so our sleep patterns and eating patterns are backwards! Yesterday the doctor, Dr. Tony, and the PT, Owen, evaluated me for treatment. They have decided that the first treatment will be this Friday, June 26 and therapy will start today, June 25th. I will get PT, OT and acupuncture 5 days a week. The first treatment will be by IV and the rest, if I do ok will be spinal treatments. My mom is thinking about adding a 6th treatment for an extra $3500 if they can fit it in and I respond well....the more I get, the better my chances for improvement. Some people here are getting 9 treatments! They've been here forever and still have a long way ago. My mom has spent a lot of time talking with the other families and making plans to get out a bit and see the country. I still don't have my schedule for the whole time here, but they told my parents that I will get 5 days of therapy, 1-2 treatments a week, and then have 2 days free. I know mom and dad want to take us to Beijing, but who knows what we'll end up doing! Soraya is being pretty good, but she is very hyper! She is anxious to get back home to see her friends and family.

My parents have had funny adventures in Chinese society. My dad went to the bank with our interpreter, Sweetie, and then my mom went with her to the supermarket. Both think she is a bit crazy and almost impossible to understand....and she's our interpreter! Soraya has charmed her and all the other interpreters so we actually get lots of help! They think I'm adorable too! Actually, they are so excited about the changes I might undergo that they've asked my mom for filming rights to highlight my story on their website when I'm all done! Yesterday they started filming me for "before" footage....kinda crazy because I'm sooooooo tired that all I do is sleep, eat and laugh a lot! I hope I can figure this time change out a bit so that I can be more of myself for them to see!

I'll try and do more updates as I get treatments and as we all have more funny stories to share! Thanks to everyone for your love and support! Lots of love to all!

Monday, May 18, 2009

5 Weeks...

Well, 5 weeks and counting! That's right...we will be leaving soon for China and things are really moving fast now! My parents are still accepting donations, but have finished with all the formal fundraisers. Thanks to all of your generosity, we are going to make it! Each one of you will have a part in the miracle that is my life from China forward, and I will be forever grateful for your love!

We'll be leaving Detroit on June 22 so we can make it to the hospital in Qingdao on June 24th. We come back on July 18th, and my mom will make sure to give everyone updates so that you can all follow my progress. I am very excited about how my life is about to change....my cousin was very funny last night and said that my first words will probably be "stop Soraya!" as my sister feels the extreme need to smother me at all times! I love it and her so much, but I think my cousin might be right!

Please know that my family and I really appreciate the outpouring of love and support that we have received along this journey so far, and we hope that it continues as we truly prepare for these travels. Lots of love to all!

Wednesday, April 22, 2009

Starting to get excited!

Well today is only 2 months away from when I'll be arriving to China! I can't believe after all of this time we'll soon be going to get those treatments! I found out this weekend that a friend of mine, Arjay, will also be in China when I'm there, and I'm so excited about meeting him in person. His mom and my mom have been helping each other throughout this process and being there together will truly be wonderful!

I know there is still so much to do! We are just over 1/2 way to meeting our fundraising goals, and hopefully the events planned for May will be successful. We also still need to finalize our travel plans, prepare my food and medicine for the trip, as well as figure out what we're going to take as gifts/tokens of appreciation for the staff in China. So much to do and with only 2 months left, I'm sure my parents will be busy, busy, busy!

So that leaves me to soak up all the love I can from my extended family and friends before we take off. Thanks to all of you who support my family and me...whether it's with love, money, time, or just an ear/shoulder for my parents to use...every little bit helps and is much needed during this huge transition in our lives! Talk to you all again soon!

Najib

Wednesday, April 1, 2009

Starting to Chew!


After 2 1/2 years of sucking my food back, I have spent the last 2 or 3 days actually beginning to chew! May seem like a small accomplishment to most of you, but for it's HUGE for me--this could be the beginning of better mouth control, possible speech patterns, not to mention the ability to actually enjoy textures and flavors of food in a whole new way! I know that after my trip to China so much will improve, and I hope that eating is one of them! I have a ton of food allergies....dairy, soy, egg, nuts, peaches, plums, peas, etc., and frankly I am sick of eating mashed meat, carrots, zucchini, pears, apples, kiwi ad banana....no wonder I don't gain much weight....that's what eating healthy will do!


We celebrated my sister's 5th birthday this weekend! I love her sooooooo much! I was laughing a lot with her, and I was very happy to see her so happy! She's my favorite person in the whole world! I can't wait for the day to come when I can run around with her, and even get her back for all the "love pats" she gives me! Prepare yourself, Soraya, life after China will never be the same for you!


My mom and dad are quite busy getting everything ready for the next fundraisers (another day out at the gym on April 18th and a dinner/dance on May 2nd), so things around the house have been a bit crazed! Hopefully with the good weather around the corner we'll be able to sneak in some family walks here and there! I love going outside and feeling the wind against my face as we walk! I even get excited when I see my coat or shoes because I know what's coming next!


Ok, well that's all I have for now! Hopefully the next fundraisers will be a huge success and my family can focus on enjoying life to its fullest!

Friday, March 13, 2009

A little bit of history...

HI! My name is Najib Puerto-Khalil, and I am the proud son of Felipe and Naomi, and brother to Soraya. I arrived to this great family on January 21, 2006 and was happy to join such a great bunch of people, not to mention my 13 cousins, many aunts and uncles, and my loving, devoted sitoo, Christine!

Although I am a very happy, gentle 3 year old, I face many health challenges that have limited my quality of life. I have suffered from seizures since I was 4 months old, have MANY severe food allergies, terrible acid-reflux and digestive issues, not to mention a cerebral palsy diagnosis that reflects my inability to move independently or form any type of speech pattern. I do get my point across, however! My parents know when I am hungry, happy, sad, frustrated, mad, etc! The rest will come in time!

My mom and dad do all they can to help me out and to improve my quality of life. We go to tons of doctors, receive therapies, and take meds and alternative supplements to assist with my healing so that I can enjoy life! My favorite thing to do is to play with my sister, Soraya, but I long to be able to tackle her, run after her and give her all the loving she gives to me! So to that end, my parents, sister and I will be traveling to China this summer so that I can receive 5 umbilical cord stem cell transplants. It will be quite an adventure and undertaking, so we need everyone's help and support. My parents have been fundraising to make the trip a reality, and soon we will be prepping for our long journey to China!

I would like to invite you along on this journey...a road paved with hope! Stay tuned because we'll be departing soon!