Cooper Progresses at Polfit!

For years we've been intensely working on stretching Cooper's arms out. With all of his spasticity (tight muscles) it seems the arms were the toughest to combat. About 4 years ago he got an internal pump placed that releases muscle relaxing medication and we positioned it so that it would affect the arms as much as possible, but they still became contracted (lost range of motion). About 2 years ago Cooper had an additional surgery where his nerves to his biceps were cut so that his arms could be stretched out. This was a difficult decision because this is a permanent procedure, but in the end we felt that he needed something drastic to occur if he ever had any hope of using his arms. Contractures can also be permanent and not doing something would be just as limiting, after all... who could use their arms with their hands stuck up by her face? By cutting the nerves it would take away a large part of the pain associated with stretching his arms out and we were told his other arm muscles would pick up the functions of the biceps once they were strengthened so we went ahead with the surgery. We spent the next year following the surgery stretching and bracing his arms with no improvement.

Then a wonderful combination of therapies proved successful. Following Cooper's stem cell treatment he began receiving Hyperbaric Oxygen Treatments at Advanced Hyperbarics and a month of intensive physical therapy at Polfit. Among other goals, Polfit worked intently on stretching Cooper's arms. Heating, massaging, stretching and bracing. Measurements were taken at the beginning of the month of therapy and at the end. Cooper had a 10 degree improvement in each leg (as they are also slightly contracted), but the real improvement was in his arms. Cooper's left arm - the tighter arm - had a 25 DEGREE IMPROVEMENT in range! Cooper's right arm had a 45 DEGREE IMPROVEMENT! 4 years of surgeries and therapy had produced nothing and then this! It has to be this combination... The cells gave him the building blocks, the HBOT enhanced their effect and POLFIT did the work to produce results!

Cooper continues to attend maintenance therapy at Polfit and show progress. Just this week he was on the Gazelle at Polfit in their Body Weight Assisted Support System. His arms and hands were so relaxed he was able to lightly grasp the handles on his own... this was never possible before. His legs were moved through exercises at the same time and he smiled throughout the workout. He enjoys moving and is becoming more and more involved in his rehabilitation. Polfit says this is the trend they see among their patients: cognitive improvements come along with the physical and patients are able to do more to help in the recovery process.

Cooper also goes through therapy on his home program. With help from his wonderful nurse, Lyly, Cooper's arms are massaged and stretched throughout the day, braces are applied and he continues to ride his Quadriciser. He is schedule to attend another month of intensive therapy at Polfit in the new year!

1-Month Post Stem Cells Update

We began to notice changes in Cooper in China and though they were subtle, they seemed to be noticeable to many others since we got home. He began making different and more sounds in China and that has continued at home. As a little bonus, Cooper has been super happy! He squeals with delight often and even his laughs sound different and sounds seem more complex and multifaceted. More and more we feel like he's trying to talk. The other night we went out to dinner with Coop and he was laughing so much and so loud that we had to move our table!

In China he also began holding his arms down more and they seem much looser. Before they were often tight and he held them bent up. His arms have gotten even looser since then and we've even been able to decrease his muscle relaxer dose. Since then he's also sometimes held his hands in mid-line, which is something he's never done before and a sign of normal brain development.

His vision has improved a lot! I thought he was seeing OK before, but the way he looks at things now it's as if he's seeing them for the first time. He looks around with big, wide eyes, makes eye-contact more quickly and holds the gaze longer. He smiles at familiar faces or when he arrives at a familiar place. He used to only do that when he would come home or hear his mom and dad. He is looking up and around more at his environment and that's also aiding in his head control. His muscle relaxing dose is so high that it effects some things he can control, like his head. We hope to keep lowering his dose so he can continue to regain some control of that.

Cooper is much more alert and cognitive of what's going on around him. He watches and listens to people, TV, music, etc. and responds by turning to the sound, making noises, smiling or laughing. We talk to him differently now as a result because we feel like he understands us more. He's a part of what's going on and enjoys stimulation. These pictures show him riding his in Quadriciser at home looking up at his fish toy that has fishies swimming by and plays music. He watches this toy with more interest now as well.

Since China, Cooper has begun attending hyperbaric oxygen treatments (HBOT) at Advanced Hyperbarics and intensive physical therapy at Polfit Wellness. HBOT has been shows to mobilize stem cells so we feel that the work done at Polfit in conjunction with that will help to continue to draw out improvements in Cooper. Research has shown stem cell treatments have an ongoing affect on patients for 6-9 months and brain injuries tend to take longer to see results. We will continue to send updates and are so thankful for everyone's continued prayers and support!

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!

Cooper's Schedule for week of 9/5

The finish line is in sight!

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!

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, 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!

Saturday, August 27th

Jeff and Sarah left early this morning. I put on a brave face for Sarah, but it was hard to have them go. Since it was super early I went back to bed and then later woke up to Cooper babbling. I said "Good Morning Cooper" and kept talking back to him when I'd hear him make sounds. He usually starts "talking" like this when he wakes up. I finally got up to discover he was babbling in his sleep again! Maybe not a fluke after all? I don't know if it means increased brain activity or anything, but definitely something new! I'm wondering if he's dreaming - and if so, has he not been dreaming before? Maybe not a coincidence either that it was the day after another injection of cells?!
Heard later from Jeff that the travel home was tough, but they made it safely. Our dear friend, Peggy, picked them up, and our dog, Sonny, cried and cried when they walked in.

Fun Times with Sarah

In the few days before Jeff and Sarah left for home, Jeff offered to stay back at the hospital with Cooper so Sarah and I could have some mother-daughter time. There's a gigantic mall across the street from the hospital complete with a theme park! The only problem is most of the stores inside have closed down, but Sarah and I made a day of it anyway. First we checked out the House of Mirrors. They gave us little foam wands so we could poke those out in front of us instead of running into mirrors and breaking our noses. How many Sarahs do you see?
Then, we decided to brave the indoor roller coaster. Sarah was so nervous, but she ended up loving it and wanted to do it again!
Sarah and Jeff had moved from the hotel to the hospital since the hospital had an extra room and it was much more inexpensive than the hotel. Jeff and I had been taking turns at the hotel up til then. The last couple nights Sarah and I roomed together and enjoyed movies and some painting crafts we'd found.
The next day we reserved Charlie the driver again to take us downtown to visit the Qingdao Zoo and famous TV Tower. I couldn't believe how many exotic animals they had right in the heart of the downtown area! My favorite was the Lion and Tiger - they were roaring really loud over and over. Sarah liked so many she couldn't choose, but she especially like the sea lion that she got to have her picture taken with. I think the bear thought she looked tasty?! Unfortunately, the Qingdao Zoo doesn't have any of the famous Chinese Pandas... maybe next year?!
After that we drove up to the TV Tower. It's mainly just a Tower that you can go up and view the whole city. At the top they had a series of mind bender games we enjoyed playing.
That was the day that Cooper had his 3rd stem cell injection. Jeff and Sarah were scheduled to leave early the next morning.

OWEN!

Owen is Cooper's therapist at Beike. He performs Cooper's acupuncture, electric wave therapy and physical therapy. He doesn't speak much English, but we seem to communicate well when working with Coop. So far Cooper's PT consists mostly of massaging and stretching. For the first few sessions I noticed Owen was slowly pushing Cooper a little more each time. He massages and stretches Cooper's limbs first and then moves to his back. Sometimes I assist him by holding Cooper's upper body still while Owen pulls or twists his lower body a little providing some traction. Owen will also hold Cooper in a sitting position, with his legs criss-cross while he reaches under his arms to lift him and twist him back and forth. Lately he's been having Cooper kneel with his arms up on a wedge. He has me hold his arms while he holds his back and pelvis in alignment.
I told him I'd like to work on rolling, too, as Cooper has shown some ability in this area. I think from our time at Polfit I've been a little more aggressive in PT and Owen is hesitant to push him too hard. He did ask if he could put Cooper in a Quadraped position (on all 4's) and I said DEFINITELY! I think he's working up to that with the kneeling.
Owen is very sweet and accommodating, especially when Cooper's sleeping or eating schedule cuts into his lunch break or overtime. He thinks it's a crack up when I copy his Chinese. He says "OH! VERY GOOD!"

The Dresses

Sarah and I headed back to Jimo Road to pick up our special souvenirs, our custom made Chinese dresses. They were made perfectly! We negotiated some prices so the grand total for our new beautiful dresses... $25 each! Gotta love it! We shopped around a little more with another friend from the center, Chani, and found Chinese hair accessories to match our dresses. After a few lessons on how to put them in we think we've got it down. Now we just need somewhere special to wear them! Picked up a few more goodies for friends and family too!

Dr. Yin and Translator Joyce

Cooper with his attending physician at Beike, Dr. Yin, and translator Joyce

Cooper's Acupuncture

Cooper gets acupuncture every day that he doesn't get stem cells. They do a consistent pattern across his head with 11 needles: 3 in the top, 6 along the sides and 2 in the back. They explained to me that the needles on the top of the head are to stimulate his consciousness, the needles along each side are to stimulate his speech and the 2 in the back are to stimulate motor function. They have large charts in the acupuncture room of the various meridians used in acupuncture that run throughout the body. Along the meridians they show points and their corresponding function. I noticed on the charts there are many areas where Cooper needs help that they are not using for acupuncture. I inquired about this and they said that using needles in his limbs would increase spasticity (tightness) in his muscles.
Cooper continues to flinch when the needles are first inserted, but he's fine after that. The needles stay in for 30 minutes. The therapists said that there is no benefit past that time limit. They remove them by placing a Q-tip over the insertion point first and then quickly pulling it out - checking for any bleeding. He usually doesn't really bleed - once in a while he'll have a little blood, but they press on it for a moment and it stops. Cooper is such a tough guy!

Cooper's 2nd Injection - 8/22

This post is very medically related, but I thought many of you may be interested in the science behind the decisions about Cooper's treatment.
Each Sunday evening we receive a schedule for the week. Cooper's 2nd injection was scheduled for Monday the 22nd. Cooper's attending physician in China is Dr. Yin. Dr. Yin came to see us the morning of the 22nd and informed us that after discussing Cooper's case the doctors feel there are too many risk factors to inject the cells any other way than through IV. As they explained their reasoning there seemed to be some discrepancies from what I understand about Cooper and what they were telling me. I proceeded to ask them the exact reasons and risks involved. I wanted to make sure that they were basing their decision off of accurate information. As we continued to discuss this, there were disagreements about Cooper on which they were basing their decision, but ultimately it came down to this:
#1 Direct Brain Injections are not advised at this time mainly because of Cooper's seizure disorder. They feel this method could trigger a major seizure that could kill him. The fact that his injury is global and the seizures come from all over his brain, it would be impossible to determine a safe injection site.
#2 Injecting cells higher up in Cooper's spine, above his scoliosis, would present with a high risk of causing paralysis. There are many nerves there and that is why lumbar punctures are done lower so that nerves are avoided.
Though I understood their reasoning and agreed with their decision, it was still upsetting. I couldn't help but cry. I was still carrying on the conversation through my tears with the doctor and the interpreter when I noticed the doctor started to cry too. In all the years I've been taking Cooper to see doctors, crying to them to help my baby boy, I have NEVER had a doctor empathize to the point that they cried. Maybe they feel it's unprofessional... I found it deeply endearing. The doctor told the interpreter she is a mother and can't imagine what I'm going through. I respected her and her decisions regarding Cooper even more at that point. She had considered it from the perspective of what she'd want for her own child and that meant the world to me.
Many patients here and stories I've heard in the past have had much success with IV injection. The research shows more effect from the lumbar delivery, but improvements are still gained in both IV and lumbar. Of course I wanted the most effective method, but if that's all we can do, then we'll take what we can get.
Jeff took Cooper for his stem cell treatment that afternoon so he could see it for the first time. All went well and we are praying for success!

Sunday, August 21st

Beike has a driver you can hire for the day to take you around named Charlie. Us and another family decided to reserve Charlie for the day and do some sight-seeing/ souvenir shopping. First stop was ZhanShan Temple in downtown Qingdao. Qingdao is sort of a newer city and the temple is not very old. Still, it is a working temple with authentic Chinese architecture... beautiful! There were several buildings with Buddhas inside where you could make an offering or kneel and pray with incense. We saw many people doing this. One building housed a giant bell called "The Prayer Bell." For 5 Yuan (.75 cents) you can ring the bell 3 times as you pray. Sarah and Bridget each took a turn at it.
From there, Charlie took us to the main shopping area, a sort of indoor swap meet known as Jimo Road. We found some neat stuff and then asked Charlie if he knew where we could find Chinese dresses. Charlie took us through 2 buildings, down 2 flights and make twists and turns later we came to a dressmaker's shop. We tried on dresses, but nothing really fit right and Sarah and I couldn't agree on a pattern. Sarah was insistent on dragons and I wanted a darker jewel color. Finally, we found some awesome material (deep red with gold and rainbow colored dragons) and the dressmaker measured us for custom, matching dresses. Even though Charlie speaks limited English he was able to interpret all our wishes to the seamstress - it was sort of a funny process since he's a guy and we had to play charades with our body parts most of the time :o) Our dresses will be ready on Tuesday!
We finished up the day with lunch at an American restaurant called "The Diner" - complete with cheeseburgers and coke!
(still can't find any diet soda in this country though)

Saturday, August 20th

Behind our hotel is an Olympic Sculptural Park. It always looks neat when we go by so we decided to take a walk through it on our day off of therapy and it was amazing! So beautiful, complete with Willow trees, streams, bridges and many sculptures of Olympic athletes. We all took turns posing with various athletes and Sarah and Bridget did cartwheels with the gymnastics team. As we walked through we also found rides for children and a lake with paddle boats. People repeatedly stopped us to take their picture with Sarah. One group of girls were so giddy about Sarah that they kept following us around like paparazzi.
We decided to take a paddle boat out on the lake. Jeff held Cooper, Sarah steered and Bridget peddled. We paddled around and other boats began driving over to us to take pictures of the Americans! We went near a beautiful bridge with 1,000's of flowers and lily pads and even drove under another bridge. As we came around the ben the group of girls were waiting along the shoreline to wave to Sarah. They kept shouting "BEAUTIFUL" to her :o)
We also saw many wedding couples taking their pictures in the park - such a beautiful setting!