Archive for August, 2009
We are to the beginning of another busy week in therapies. Since Nathan did well from his spinal injection last week Dr Wang has agreed to do another spinal this week instead of an IV injection. That is scheduled for Wednesday. You get your week’s schedule on Sunday. Today marks half way for Nathan’s and my stay in China so we can begin our countdown for coming home. I really appreciate all the comments about the blog. It is so good to hear from friends at home!!!!
This blog is dedicated to all the men who are still boys at heart reading our story. I made Ken go to Century Park just down from the hospital this evening for a picnic dinner from Kentucky Fried Chicken. Century Park is beautiful and very relaxing. Soft Chinese music is playing and the flowers are gorgeous. On our way there Ken had to keep taking pictures of the construction vehicles and cranes. When Dr Wells was here he was amazed by all the cranes also. It is not unusual to see 4 or 5 cranes atop a building under construction. You literally cannot go one block without seeing something being built.
August 31st, 2009
Viewer discretion is advised!!!!!!!!
Below are pictures from The Qingdao International Beer Festival this weekend. It is somewhat like a state fair Chinese style with rides and food, however, no cotton candy or funnel cakes. I would have to be intoxicated to eat bugs, beetles, scorpions, etc.
August 29th, 2009
Do you think the nurses like Nathan? He flirts in China just as much as he does in the U.S. All the females in the world are the same. They look into his eyes and they are hooked. I am hesitant to say this, but Nathan seems much looser today…almost like he had botox injections. We call that floppy. His hands are the biggest noticeable difference. They are not fisted, but relaxed and open. I am praying these are signs of good things to come. I was extremely happy today when his physical therapist mentioned about his hands without me saying anything about it. It was not my imagination!!!
August 28th, 2009
Nathan did great today for the spinal. Dr Wang let me feed him until 1 hour prior to the injection, but he had to lay flat for 4 hours following the spinal. They gave him Valium to calm him and it never fazed him at all so they had to give him something a little stronger through his IV. The procedure took around 20 minutes. I was a nervous wreck. One of the Brazilian moms that does not speak English came over and gave me a hug because I will admit I got a little teary when they rolled him in the procedure room. Moms simply don’t have to speak the same language when it comes to their babies. When they wheeled Nathan out of the procedure room he looked up at me and grinned. The stem cells now need to go swimming through the spinal fluid and find a damage area of the brain to attach and grow as Nathan’s brain grows. Who knows what his future might hold!?! At least I feel good knowing we are trying to do something proactive to make his quality of life better. He is such a sweet boy. Will says he gets the sweetness all from him.
It amazes me to witness how much these parents love their children and are willing to travel so far seeking help. I know some with typical/normal kids think it is desperation, but I say it is the love of your child. Everyone here has a story to tell, but the goal is always the same no matter the nationality. Everyone is hoping for quality of life improvements. Ken & I have had the extraordinary opportunity to already meet people from all around the world. We are on the 8th floor of the hospital. This floor has 2 wings and a common area with sofas in the middle where everyone congregates. I have no doubt in my mind that we will travel the pathways of life with some of our new friends. Ken says it is like going to college and living in a dormitory again. The moms might not agree. The dads enjoy meeting late at night in the common area to talk about their days (hopefully progress) and about the life they have been given.
Meet some of our friends!
Seated on the left are Joey and his mom, Julie from California. Joey is 4 years old. When Joey was approximately 18 months old he climbed through not 1, but 2 dog doors to get out of their house and garage. Pretty talented little booger, isn’t he? Joey then decided to go swimming in the pool and unfortunately drowned.
On the right is Braden from Nebraska. His mom had an allergic reaction to Potosum during his delivery. He and his mom both almost died. Braden suffered lack of oxygen. He beat Will Zeller playing Wii games.
August 27th, 2009
We talked to the doctor this morning about administering stem cells on Nathan by spinal transfusion. Stem cells injected into the spinal fluid travel directly to the brain. Some patients prefer all IV injections and some want a combination of IV and spinal for the full effect of opportunity. He was supposed to have had a bone marrow aspiration during our first week, which after cultured, would have later been given back to him as 2 spinal injections. Since his acid reflux was an hindrance the doctors did not want to do it. Normally, you are not allowed to eat 3 hours before a spinal and 4 hours after a spinal due to being put to sleep. The patient also has to lie flat for the 4 hours following the spinal to prevent a headache. Lying flat and reflux do not go hand in hand. Spitting up leading to vomiting is guaranteed. Nathan is always elevated on a pillow to prevent it. The doctor told us they sometimes do spinal injections under local sedation if the patients are cooperative, but most of the time they used general anesthesia for the kids to make it simple. We negotiated with Dr Wang and he said he would let me feed Nathan up to 1 hour before the spinal and slightly elevate his head after the spinal. Dr Wang is willing to try one spinal and see how it goes. Patients have 1 injection the first week and 2 injections the next week. You rotate 1 injection weekly and 2 injections the next week thereafter. This a 2 injection week for us so tomorrow we will try a spinal. Although I cut his head half off, below is Nathan’s doctor, Dr. Wang. Of course, Nathan is flirting with a nurse.
August 26th, 2009
Nathan had stem cells today through an IV and tolerated it well. I took his pillow and some books to read and he actually fell asleep while the IV was running. I had requested after the last injection that he be placed with adults rather than children. During his last IV one of the little girls pulled her IV out and the nurses were having a hard time getting it back in. Naturally, she was crying and that upset Nathan. The pucker lip was in full force. I am going to attach a picture of the pucker lip Ken caught while I was holding one of our buddies, Braden, for those of you that have never seen the pucker. It’s a killer! Braden is here with his dad because mom is at home with a new 4 month old baby sister. Braden has taken a liking to me and wants to snuggle with me at night time when he is missing his mommy. Nathan was not amused about sharing his mommy! I have been thinking a lot about Will today. He started school and I feel guilty not being there. My sister, Jan, has adopted him and I don’t know if I get him back when I return or not. I will never be able to repay Jan or Mike for all the help with Will!
August 25th, 2009
Wow…check out Ken’s foot. It is huge and badly bruised. Although he had an x-ray and nothing was broken I think it is safe to say he will be visiting an orthopaedic surgeon when he gets home. One of the other parents took these pictures for me to be able to show you. Nathan did well today during his therapies.
August 24th, 2009
Nathan’s diarrhea is still a huge problem so I wanted to visit a grocery store that is larger about 3/4 of a mile down the street in search of milk. Ken insisted on going although I tried to discourage him. His ankle is getting bigger and more bruised. Normally, the taxi drivers are great about helping you get in and out of taxis with wheelchairs and special needs chairs. Our taxi driver that particular day never got out of the car to help us at all and was rushing us to get out of the car at the grocery store. I had Nathan in my lap trying to slide out the door and not drop him. Ken did not have change and the driver did not want a big bill so I put my camera down in the seat to try to see if I had a smaller bill while still holding Nathan. Long story short…I left my camera in the back seat of the taxi and he drove off before I could wave him down. There probably won’t be any pictures until I can get it replaced with something cheap here. Luckily, I had been uploading my pictures daily to my laptop. This has not been the best weekend between Ken’s ankle and my camera. Hopefully, this coming week will go better.
Since I am talking about Nathan riding in my lap it seems like a good time to tell you that kids here don’t have to ride in car seats nor with helmets on. When I questioned one of the interpreters about if there were any laws she said no. She said that moped accidents were the leading cause of child injury.
August 23rd, 2009
Nathan has the weekend free so we decided to schedule one of the hospital’s drivers to take us to downtown Qingdao to Ocean Polar World. Charlie, an interpreter, went with us to make our day easier. The staff here is wonderful in making your stay as comfortable as possible. Nathan enjoyed watching all fish, turtles, whales, seals, polar bears, etc. The shows were fabulous and entertaining. Tragedy struck when going downstairs to one of the aquariums that was not handicap accessible. Ken carried Nathan down the steps while Charlie and I lugged the stroller down the steps. Ken accidentally missed the last step and twisted his ankle with Nathan in his arms. Luckily, there was a wall in front of him or he would have fallen completely. A huge knot instantly popped out. It looked liked he had 2 ankles. Fortunately, it happened at the end of our day so we headed back to the hospital. The next day the therapists recommended acupuncture to Ken to help relieve some of the pressure from swelling. This is one of the other reasons why my blog is so late at getting up and running. My help while in China suddenly because a second patient for me. Anybody want to come to China?
August 22nd, 2009
Nathan and I introduced Ken to everyone today and took him to all of Nathan’s therapies. Jet lag has set in for him. He was pretty tired by the end of the day, but we still took him to the local grocery store called Lotte Mart. The grocery stores are very different from home. The fruits are much more exciting to look at and the meat department is totally open with the fresh meat lying on ice. Folks can pick the meat up to examine it and lay it back down if they decide to purchase a different selection. It was only unusual to us as all the local folks are very accustomed to this ritual. One other thing that I am having a hard time with is none of the Chinese toddlers wear diapers. They wear pants with a hole cut out of the crotch. You can buy toddler clothing already made like this to allow the kids to go to the bathroom. The toddlers just squat to go to the bathroom anywhere inside or outside. Will thought it was shocking at first. I have seen it much more since he went home. I explained to one of the interpreters that in America going to the potty was usually a private affair whether you were a child or an adult.
August 21st, 2009
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