Wednesday, August 31, 2011

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

Monday, August 29, 2011

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!

Sunday, August 28, 2011

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!

Saturday, August 27, 2011

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!

Thursday, August 25, 2011

August 18th


I haven't really been expecting any changes in Cooper since he's only had one stem cell treatment, but he did a little something he's never done before. Last night he began making sounds in his sleep. It struck me because I listen to him sleep at home on a monitor every night and never noticed these sounds. I checked him to see if he was awake and he was sound asleep. I thought "He's talking in his sleep!" The doctors always ask us each morning to tell them if we see anything at all so I mentioned it to them. I thought it was nothing, but they seemed encouraged. They said if he does it again it could be something, if not.. it was probably a fluke. We shall see!

Chinese Wedding







One of the things I had in my mind that I wanted to see in China was a Chinese Dragon dance. Seems like that's what I've seen on TV?! I was told they only do it at New Year's so I was bummed. But, today I walked out of our hotel with Sarah (Jeff stayed with Cooper in the hospital) to see a big set-up for some sort of celebration. Come to find out it was a wedding reception and the Bride and Groom were just about to arrive. We saw some men standing there with costumes on next to Chinese dragon heads. I was so excited! When the Bride and Groom arrived some other men held up poles with several hundred firecrackers hanging from them and they began exploding all over the place. They may have been M-80's - they were super loud! They also had actual cannons shooting confetti constantly. Once a big wad of confetti hit me so hard in my chest it made a big thud! The dragons escorted the Bride and Groom over to an archway and proceeded to perform for them to a drum beat performed by a group of women. It was sort of a dance-off. One would perform and then the other would try to outdo them. They were super funny and talented. For the finale they did this crazy spin thing together. Sarah and I loved it - what a treat! Of course, the whole time Chinese children came over to Super-Star Sarah to get their picture taken with her. So cute!