Sunday, September 11, 2011

Goodbye China! Zai Jian!


Well, our time in China has come to an end. We have met some wonderful people from all over the world and learned a lot about this country. It's been an adventure to say the least! We will never forget the special bond we shared with other patients and their families - all coming together here out of hope!
We are so grateful to Beike for being a leader in stem cell treatment and offering hope for Cooper! The staff has treated us wonderfully and we couldn't have gotten through this month without all of their help. Everyone cares so much for Cooper and wants to best for him. We may have starved without the translators!
Cooper wore his new Chinese outfit for his last day in Qingdao. He is here with his lovely nurses, Lucy and Melody. Melody taught us how to sing "Twinkle Twinkle Little Star" in Chinese. We return home to begin attending more therapy to see if we can put Cooper's new cells to work. We will continue to post his journey on the blog. Thank you to everyone for your support!

Tuesday, September 6, 2011

PT



Cooper continues to get massaged and stretched at PT twice a day. He particularly seems to like when Owen rolls his shoulder around. You can see the grin he's giving Owen in the picture.
He's doing a little better with head control too!

Increasing Acupuncture


Cooper's up to 14 needles in his head now. I guess they were working up to it? It's difficult to know the goals or reasonings sometimes with the therapies here because the therapists speak very little english. Translators always accompany the doctors when we are discussing things, but I have to go find an interpreter if I have any questions during the therapies. Cooper continues to only flinch when the needles are first put in and then he relaxes - often even goes to sleep after!

Injection #4


Cooper had his 4th stem cell injection today - he only has one scheduled this week. Typically, the day of the injection the nurses come in a few hours before and start an IV on him. They've had trouble a couple times, which is understandable, but today was the worst. They had to stick him 4 times before they got it right. I know from experience with Cooper he's not that hard to stick. They were very apologetic and felt bad - I told them it was OK, but I was still upset. When we went in for the infusion the IV line wasn't working and they had to do it AGAIN! I asked them to call someone that was really good at IV's and they called the Head Nurse, Linda. She started it right away no problem.
They say with these treatments you aren't likely to see anything until after you return home, yet some people begin to notice little improvements after the 4th or 5th treatment. I haven't really noticed anything significant yet, but we'll see. I've noticed some little things that may or may not be associated like he seems more relaxed, he's eating a little better, he's making more sounds... stuff like that. I remember one mom I spoke to a while ago said they didn't really see any changes except that it made their daughter's seizures go away. If we could just have that I'd be grateful! Please keep up the prayers!

Monday, September 5, 2011

Fezia's Visit




Some new friends left and an old friend arrived. Fezia and I met online about 13 years ago. Both of our sons were going through a home program called Brain Net and both of us were in a yahoo email group called Parents of Near Drowns. Fezia's son, Amir, and Cooper are about the same age and both suffered a similar brain injury as a result of a near drowning around the same time. Through the years we've shared stories and information we discover in the journey to help our son's recover. Fezia lives in Malaysia with Amir and her husband and also has 2 older sons. Since Amir's accident Fezia has worked tirelessly to help Amir recover and has been an inspiration to me in so many ways. She has become trained in special needs Yoga and Cranial Sacrel Therapy and treats children throughout Malaysia and its neighboring countries.
After hearing that Cooper and I were going to be in China, she flew over from a nearby province where she was working to visit us. It was the first time we had actually ever met in person! Fezia showed up with several gifts and food items for us. She brought Cooper some therapeutic items, hot cereals and yummy treats for me! She also used some of her wonderful knowledge on Cooper and showed me some new massage techniques. Cooper smiled when he met her and often laughed when she worked with him. I was able to get her a room at the hospital so we could spend every possible moment she had together. It was such a treat to have my dear friend meet up with us in China!

Sunday, September 4, 2011

Sunday, August 28th


Today was sort of a sad day. Jeff and Sarah left yesterday and my new friends, The Elams, left today. Matt and Chani Elam were here from Hawaii. They became good friends in a short amount of time and Matt's story is truly inspirational. Though he's been legally blind his entire life, Matt managed to become a professional football player. He went on to play some Arena football as well. Now at 35, he's seeking stem cell treatment to repair his vision. It was great to have Matt here as someone going through the treatment and able to relay his experiences. I felt like he sort of gave a voice to Cooper in that respect. He was also able to provide perspective of someone seeking this alternative treatment themselves out of desperation. He was able to convey how much he wished for improvement - of course many of us wish that for Cooper, but again - hearing HIM say it made me feel like I could understand Cooper's desperation for recovery. Along the way here in China, I often spoke to Matt and Chani about the ins and outs of the treatment: how he was feeling after the treatment, when did he notice improvements, how it was affecting him emotionally, etc. When I was let down that Cooper would not be able to undergo treatments via lumbar puncture, Matt and Chani reminded me of all the positives: that he was still getting the cells, that many people have improvements from IV treatments, and that Matt himself was having improvements after only IV treatments. Matt did end up getting one lumbar and another treatment in his eye, but felt he had dramatic improvements during his time here. His vision increased including seeing colors and contrasts like never before. I also watched Matt become an inspiration to many other patients here including one teenage boy with his same condition. Peyton is also vision impaired, but still wants to play football. I overheard him and Matt having many discussions about how to make the game work within the disability they shared. The Elams and I shared some wonderful heart-to-hearts and I'll miss them during the rest of my stay here with Cooper tremendously!