Archive for July, 2009
Mom went with an American who was here for 4 weeks yesterday so today we decided we would all go out so I could see what it is like. What an experience! As we are walking down the road everyone is staring at us. I mean EVERYONE! We had Dillon and JayDonn both with us and we are the ONLY white people that we saw. Beijing is an international city and has some people from all nationalities. But apparently Shijiazhuang is not. Ok, so there is this tiny little gate you have to go through to get to the market and since there is no way the wheelchair will fit we had to go through a food court. Everything was going fine, we had to lift the wheelchair up the couple of steps but nothing to too bad. We went out and looked at some clothes and bought bananas, a peach, and these little brown balls on twigs that we don’t know what they are but were told they are good. So then we went back into the food court to leave and guess what…. they locked the doors! We had no way to get out. So a nice Chinese lady could tell we didn’t know what to do and pointed for us to go back out side and go around the other way. We did this, only to find the same small gate on the other side. So we were trying to ask police men how to get out. They didn’t understand that we wouldn’t fit with the wheelchair. That lady came out and found us again and showed us where to cut through another building so we could get outside the gate. She was very kind to take her time to walk us all the way out since we clearly were not going to find it on our own! So then as we are walking back we are very aware that everyone stops and watches us, they even follow us a little to watch what we are doing. I stopped to suction Dillon and I glance up to see a man with his camera phone pointed at us! I have never had people stop and take my picture like that before! I have never felt so out of place before! I have never had that many people stare at me! I mean, in the States we get people who stare at us because of Dillon but not the whole population at once! But of course, everyone loved Jay and stopped to talk to him.
That was an experience that I don’t think I will soon forget! It was scary to be trapped and not be able to understand a word of what people were saying to us! Scary to not have a way to tell them what we needed. Next time we will be sure to take the little translator with us!
July 31st, 2009
Dillon had his first acupuncture today. The doctor said it might hurt Dillon a little because the areas she was putting the needles in have more nerves. In adults they leave the needles in longer, in kids they just put them in and take them out right away.
Before she started, Dillon started into one of his clusters of seizures. She pushed on a spot on the upper lip right where the middle of the nose meets the lip. She pushed on it two or three times and the seizures stopped. I don’t know if it would have stopped anyways or not but she showed me how to try it in the future. It was about three hours before he had another seizure. We are trying to do that again ourselves. I think it might be working, his seizures seem to be shorter and not have as many in a row. But we will keep trying it over the next several days and see if it helps or not.
I was holding Dillon for his first treatment. She cleaned the area with iodine and then quick as could be pushed the needle in and out of his throat. Mom K got some priceless photos and movies of MY face as they were doing this. I do not like needles at all so it was hard for me to watch her push these needles into his body. (Sorry I can’t get photos to upload so I am still working on it but photos may not work while I am here. If I can’t get them on here I will get them on the MOMENT we get home!) She did two in the throat, one or two in each of the following areas inside of the elbows, wrists, knees and ankles. These ones are to help with the increased muscle tone.
They will do this everyday except Sundays and any days that he is getting stem cells. She may not do the same points everyday, it will depend. I feel really bad for him because I know I wouldn’t let them do this to me! But I know we are doing it to try to help Dillon. If it can help him it will be less painful in the long run.
Dillon is scheduled for 3 injections via IV and 3 injections via spinal puncture. They do NOT want to do the injection directly into the brain for a few reasons. One being they looked at his MRI and saw that the “black area” (I think they called it a ventricle) is much bigger than it should be and is too big of an area for the direct injection. The stem cells will be spread out to the whole brain better by putting it into the spinal fluid than if they inject it directly. I think that would work more if the brain damage was a single area of the brain rather than the whole brain. They also do not want to put him completely out in order to do this. They feel he is too risky to do this. However, normally with the spinals it is done in the patent’s room. They come in and make it a sterile environment and do it with a local anestesia, but for Dillon they are going to take him to the OR and use mild sedation. They do not want him to have a seizure or move around while they are doing the spinal as that is very dangerous. So they are taking extra care to make sure he is safe.
Thank you for praying, please continue to pray for him and us and the doctors here! Pray God would guide their hands so that everything will go smoothly. We are scheduled for the first IV injection on Monday. We should be starting Physical therapy today sometime. Then every day he will have physical therapy and occupational therapy. They are also going to do electrowave therapy with him at some point. Someone said something about Chinese massage therapy too, so I am not sure if they are going to do that or not.
Will update later when there is new information! Thank you!
July 31st, 2009
Our first full day in China was good. We were all very tired, though. The nurses are all so sweet! They took 5 vials of blood from Dillon and a urine sample and a stool sample. The doctors also had a stomach ultrasound done, and while that was going on there was a lady to do an EKG, and while that was going on there were people to take a chest X-ray. They are looking at the brain MRI we had done right before we left the States and reading about what happened with Dillon’s birth so they will know what they want to do. They had the director of therapy in talking to us and she said they may do accupuncture to help him be able to swallow. Sometimes the needles are in the head, sometimes it is right in the throat so they will have to see how Dillon handles the needles. I told them I would like them to try whatever they can do help Dillon as we have tried everything we can in the US for therapy so what ever they can try would be worth it. They should be telling me today what their plans are for injections and therapy (I think!).
Jay was very fussy yesterday, but if he felt like Mom and I did – no wonder. He is sleeping good now. He went down around 11pm and is still sleeping at 7am so that is good! He has missed SO much sleep – and so have we. Dillon had a rough night last night. He was up so much coughing and coughing. Mom did most of his care for me so that was really sweet. Everyone, except Jay, is in the same room so it is hard to sleep when Dillon is beeping and coughing.
Mom K got to go with an American to the market. She said it was culture shock. She really saw that we are in China when she left the hospital and went out. There are really no other white people and no one speaks English and everyone looks at you because there are so few white people in this city. The prices are good though. She got 4 bananas, 2 apples, 1 peach, 6 eggs, and a small loaf of bread for about $2.05. We ordered food from place in the hospital and it was a little over $3.00 but it fed all three of us. Broccoli with garlic sauce and fried rice. Everything is cooked in some sort of grease, it tastes great, but is hard on the stomach so we want to try to figure out what is best for us to eat.
This American man was a real blessing to us. I believe God was in this – because he leaves today but he was here long enough to be a huge help to us. Our medical machines were not working when we plugged them in. This man showed us how to know what could be plugged in and what couldn’t. My pulse oximeter should be able to be plugged in, but since we did it without flipping the switch it stopped working. He was able to open up the part in the back and look at the fuse. He said we blew a fuse by not flipping the switch and he gave someone from the hospital the fuse and had them go out and get a new one. I have no idea how they were able to find this type of fuse, but they did and now all of our machines are working and we don’t even need adapters! Praise the Lord.
Today will be another exciting day. I am hoping we will find out the plan of action and that I can go out with Dillon so that we can all go to the market and have a look around. One thing that is interesting is McDonald’s and KFC deliver. Now we are little too far so we would have to pay their taxi fee if they came to us, but I thought my sister would find that interesting! There is a Pizza Hut too, but I was told that is a nice restaurant…a place a couple would go to for a nice dinner out together. Oh well, I still can’t wait to try some Pizza Hut in China! 
I will try to update every night so you know what happened that day. (Don’t forget my night is your morning…)
Tiffany
July 31st, 2009
I wanted my first post to be about how God worked to get us to China for stem cells in just six months, but I am not finished writing that and I don’t want to wait to update, so I am going to start with updates. I am just testing to see how this works for now then I will add real information.
July 31st, 2009
