Archive for June, 2008
Hi. Sorry I have not updated in a few days. I am much more busy than I thought I would be here. On Thursday, I had a caregiver for Austin and was able to go out for the day with some friends. I did not think I would be comfortable with a caregiver but another child in the hospital has one and she is wonderful with the child. So I decided that I deserved a break and should give it a try. I also thought that with Austin being busy with therapies and feedings that he would do well. My friend Bonnie and a few others checked on him throughout the day. They said she seemed very attentive to him. It probably gave him a nice break as well. It was only about $20 for the day. I also felt safe because there are many people here plus Austin’s therapists. It all went well and I had a fabulous day! Six of us hired a van for the day. It ended up costing less than $10 a piece. The driver waits for you and you tell him what time to pick you up. One of the ladies (Shelia) who went with me actually lives here. Her husband designs golf courses and they have lived in different parts of Asia for about 25 years. They have lived in Qingdao since Oct. It was great having her around. We went to a market where you can buy all kinds of goods. I got a few gifts for family members. It is neat you are able to deal with them. They always tell Americans higher prices because they think we are rich. So you tell you will pay about half as much. Then they try to work a deal with you. Most of them if you walk away will come back and say ok. It is fun. One of the ladies who went with us was so good at that. Some of the people here are really missing American food so Shelia took us to a little place that carries imported foods. It was very expensive. I decided I could do without. I am really enjoying the Chinese food. But I have learned I have to be careful because they put MSG in lots of foods. Anyway, a couple of the ladies bought stuff to make tacos so on Friday night we had Mexican Night for all the families here. That was fun. That day we also got to glimpse the ocean. It is beautiful. Hopefully next weekend I will get to the beach. All these places are about 40 minutes from where we are staying but can be longer depending on traffic.
Austin is doing well and seems very happy. The other night I put him to bed and went out to the family room. It is just a few feet from our room. We had a small ladies night. When I walked back in the room, I noticed that Austin had his right hand above his head and he was sleeping soundly. His right hand is his bad hand and he does not ever put it above his head. It was so good to see. He looked so healthy. I wanted to take a pic but was afraid the flash would wake him. I am just so happy about his hand. Hopefully he will do that more. It is the simple things that are so easy for most but when they happen for Austin make his life much better. We just want the simple things.
Austin had his 3rd stem cell treatment yesterday (Sat.). We had a harder time with this one. The docs decided that it would be best for him to have anesthesia and go to the operating room for his spinal treatments. So now he has to go without food and water for 6 hours before the treatment. He was supposed to have treatment on Friday so he did his 6 hours and we were waiting for him to be called and a doctor came to me and told me that his stem cell package had been damaged in transport so they could not do the procedure. That was so upsetting. It is just one of those things and I am so glad that they are careful and did not use the cells. To make a long story short he ended up having his treatment done on Sat. This time the nurses had trouble getting an IV in him. I now think it was because he did not have food or water for 6 hours two days in a row. My friend Tonya (she is here for treatment for her husband who was in a motorcycle accident and now is paralyzed) came up with that hypothesis. That makes the most since to me. It was a very hard day but it is over now and Austin is doing good. He has done well this time with just a very slight fever for a few hours. We went for a walk this afternoon and out to dinner this evening. Quit a big group of us from the hospital went to eat at a Korean restaurant. It was different but good. I had big shrimp that were very delicious.
Thanks so much for being Austin’s Angels. Sending blessings your way!
June 30th, 2008
Today Austin had his 2nd treatment but it was his first IV stem cell treatment. This morning he had Pt and standing therapy. He still cries when Tom (PT) works his arms. He does not like that. But when Tom is done working with Austin his body feels so good and it is easy to lift his arms up. The stem cell treatment was after lunch. Austin fell asleep right after they put the IV in his foot. That part is hard but the nurses here are very careful and they only had to stick him once. He is very hard to get blood or an IV in him but they have done a good job so far. I saw the stem cells arrive in a small cooler box. Each patient has his/her own box already with their name on it. It is a small white box and it contains the amazing cells. It is so neat to watch. They put a clear IV bag through Austin’s IV first. Then come the stem cells. They look a yellowish color. When they are done going through the IV, they put another bag of clear liquid through his IV. I think the whole process took about 40 minutes. I laid down with Austin throughout the process. He woke up and I had to make sure he did not move his leg. I kept falling asleep with my hand on his leg. The whole process was very easy and it was amazing to watch that fluid go through his IV. It is amazing to sit there and think that stem cells are right now going into my son! I just pray that they really help him. He was in good spirits the rest of the day and evening. He did seem slightly more tired than normal. We just hung around the hospital this evening. Well it is late again and I must sleep. It is my evening but your morning. Have a good one! My friend Beth’s son Matthew said that when he is sleeping I am borrowing the sun and when I am sleeping it is his turn for the sun! Quite a neat thought!
June 25th, 2008
Hi – Sorry it has taken me awhile to update. Not a lot to report with treatment but we seem to be so busy. Austin had a slight fever after his first stem cell treatment. So they cancelled his next treatment last Friday. He will have his 2nd treatment tomorrow via IV.
The weekend was pretty quiet but went very fast. I have made some great friends and have been busy doing the daily care of Austin and trying to get out of this hospital some. The other night we went out to a real fancy Chinese restaurant. It was amazing and weird at the same time. Some of the things they eat are very surprising. At this restaurant you walk in and choose your meal from about 100 different plates of food. They had live fish and you pick. After we ordered our meal, they took us upstairs to a private dinning room. We had a room all to our selves. It was amazing. We felt like royalty. I have been eating many vegetables and lots of rice! My meal cost about $15.
Saturday we went to a local market. It was neat. A little Chinese girl, her mom signed that she was 2 years old, was fascinated with Austin. She also really liked my calculator (my US friends make fun of me because I bring it with me to figure out the cost of things in US $). Some of the people here are so nice. Others like to stare a lot. I just like to think we are movie stars! The men here love on babies more than I have ever seen anywhere. It is so cool. I have a hard time explaining to them why Austin does not respond back. I often show people our hospital card and hope they get the idea.
Sunday a group of us walked to a local Qingdao park. It was so beautiful but very hot that day. The Chinese take such care in their parks and many of the roads have beautiful flower beds growing in the grass nearby. They take a lot of pride in grooming and caring of plants and parks. Then we ate at a Korean restaurant. The food was very interesting but good. They served amazing small bit size cuts of beef and lots of vegetables. One thing that I have noticed is that here in China I get full during a meal but I do not feel bad afterward. The food is so healthy. We could learn a lot from the Chinese. They are also all skinny! The usually have watermelon for desert.
Today Austin had another full day of therapy. He did well but cries when they work his hands well. It is hard to hear him cry but good that he is letting us know when he doesn’t like something. He is getting much more opinionated. He does 30 minutes every therapy day in the stander! Gertie and Kim (Austin’s therapist back home) would be proud! His body feels so good when he is done with therapy.
I need to get to bed! Another busy day tomorrow! God Bless. Love Jenny and Austin
June 24th, 2008
Not much to report today. Austin has had a slight fever so we have not done his PT therapies. I am bummed about that because the one day he had the therapy his body felt so good. He still had accupunture and e-stem. Austin was in fairly good spirits today. He has decided he does not want much of his foods and he has learned to spit things out! Not quite the improvement I was hoping for. He is starting to really fight me when I give him his medicine. It makes me so sad that I have to force the stuff into his mouth – and now he is spitting it back out! I just wish he could get off all seizure meds – maybe someday! I have not seen any seizures since Monday before the stem cells. And usually when he has a fever he has more seizures. So maybe something is happening.
I am getting stir crazy – I have not left the hospital since Monday. Hopefully tomorrow Austin will be at the top of his game and we can get out some. I bought a baby size tub and gave him his first bath in it today. He did not cry. He was a little cramped but it worked well and then I washed my underwear in the tub! They have a laundry service but they don’t seem to get the clothes quite as clean so I am going to try and wash my clothes myself. I sent some of Austin’s off to the laundry they come back tomorrow so hopefully they will be good.
I met a guy today – I think his name is Gabby. He is from Romania. He was paralyzed from the neck down and this is his 4th visit to China. He is now able to move his neck and arms and has feeling in his thighs! I am amazed with him. He said he was totally paralyzed from the neck down for over 10 years. He speaks Romanian, English and is learning Chinese. He helped me communicate with Tom (Austin’s therapist) today. He said that a very wealthy man in Romania is helping to fund his visits and others like him. He said the man wants to run for president of Romania. Sounds like a great man! I talked to him about some concerns. He is very knowledgeable about the stem cell process and with being able to speak Chinese understands more than most. It was neat to meet him. I have met so many neat people. There is a little girl here named Alli. She is much like Austin. We are hoping they will be great friends. Austin is about 7 months older.
Thanks for your support and prayers. God Bless.
June 18th, 2008
Austin had his first stem cell treatment via lumbar puncture late last night. Once they brought him into the room it went very fast. He did good. He slept most of the night. He woke around 2 am and I changed his diaper and then he cried out about 2:40 am. I went over to him and just loved on him and he went back to sleep. He awoke around 9 am when the doctors came to check on him. He seemed upset so I gave him some Tylenol and then he slept until late morning. He finally ate his breakfast - more of a brunch and then played for a while and fell back asleep. His tone in his legs seems better today. It is probably from the growth factors that they give with the stem cells. Please pray for big things for Austin. He is such a sweet boy and deserves to have a better quality of life. I cancelled his therapy for today since he is so tired and probably a little sore. We are just chilling out in our room. The nice thing is we get lots of visits from the other families who are staying here. My Aunt Judy and her two children arrived yesterday. Her son Zachery is going to get stem cells also. He is able to walk and talk and I am anxious to see what the therapy will do for him. He can tell us how it feels and what his body feels.
It is a little later now.. and Austin is doing well. He has perked up and seems like his old self. Thanks for being Austin’s angels!
June 17th, 2008
Hi,
Things have been busy here. I have been to the market 3 times now. We had Saturday and Sunday off. We mostly rested and tried to regroup from our jet lag. Austin has been very tired. He has been waking at 5 a.m. It gets bright here about 4:30 a.m. Last night a a friend named Chantel (she is here with her daughter), Austin and I went out to eat. It was our first Chinese dinning out experience. We went to a place called Paradise. It was really nice. It is hard for us though because people smoke everywhere. The restraunt is in a beautiful park that is decorated for the Olympics. It felt so good to get out of the hospital.
Austin was supposed to get his first stem cell treatment this afternoon but due to the weather the plane was delayed for flying. So we went to the Rt mart with some friends – Bonnie and Tonya. They had to do some grocery shopping so I went and had my toe nails done. It was about $10. My toes feel so much better. It had been over a year since my last pedicure. They would not accept a tip. It is nice that when you get a service you don’t have to factor in a tip – it also seems weird. There are a few places that accept tips but not many.
Right now we are waiting for Austin’s stem cell treatment. The stem cells have arrived but they are running later than first thought. I am excited but nervous. Austin really cried when they gave him the IV. For those you know Austin well you know that is rare. But he has been crying more lately – he just got off of a seizure med and is now able to express himself more. It is like a fog is somewhat gone. Please pray for big things for Austin! He is such a trooper and the bravest little guy I know.
I am missing my girls and Darrin so much. There is no place like home but it is good to be here with so many wonderful people. Everyone supports each other and the spirit of the people here is amazing.
Have a good day. It is night now for us and hopefully Austin will be getting his treatment any moment and we will hopefully get some rest! He has to lay on his back for 6 hours after the treatment. So it is rather a blessing that it is during the night.
God Bless. We would really like to hear from you. Your thoughts and prayers mean so much.
www.austinwade.net
June 16th, 2008
Hi Everyone,
We are busy getting settled in here in China. It it quite the time difference and has taken some time to adjust. Austin is doing well. He has been very happy. He has recently started crying for different things. Yesterday he cried when he was hungery that is a first for quite a while. Today he cried during his bath and he sometimes cries when I set him down. He has not had stem cells yet. I think that maybe he is more expressive is because we just weaned him off of phenobarbital. I am glad he is starting to tell me more things. Yesterday Austin had his first day of therapy. He had e-stim on his legs and his arms. Then he had 30 minutes of acupuncture. I was excited for him to try it. I have heard so many positives about it. But it was hard to watch them put these tiny needles in his head. He tried to get them out. They put 4 on his head. Once they were in he seemed ok. He feel asleep about 3 minutes after they inserted them. I have heard that it is relaxing. Then he had PT. His therapist Tom worked with his arms and legs repeatedly and then he had Austin roll back and forth for quite a while. After a while Austin was trying to help roll. It seemed like something was clicking in his brain. I am anxious to see what might happen after days of this therapy. After that Tom put Austin in a stander. His arms felt wonderful. They were not as tight as usual. Austin is not as tight as most brain injured persons but he still is tighter than the average person. He felt so good and then he feel asleep in the stander. So we got him out. Today was a free day and he slept more than usual. I think he was worn out. We got to hang out with our friends. My friend Bonnie is here with her daughter Lauren. If it weren’t for Bonnie coming here I do not think I would be here today. She was here last year and saw some good improvements for her daughter. You can check out her story at: http://www.caringbridge.org/visit/laurenashley
It is so good to be here with friends. My Aunt Judy and her son Zachery should arrive tomorrow. Zachery has very mild brain injury. So we will have lots of friends. We have also meet some wonderful people here. I will try to tell more later.
I went to the RT mart for the second time today. For us today is Saturday and the store was packed. A friend named Chantel (she is friends with Bonnie, and they came together) and I walked about 40 minutes to get to the market. It is quite interesting to cross the street here. The Rt mart has an escalator without steps. The shopping cart connects to it. It is really neat. Many things are cheap but some are about the same as it would be for us. I actually bought a 6 pack of Corona beer for less than $2. I was shocked. The US must have a major mark up. I get Chinese dinner for less than $2 but if I want American style food it is closer to $10. A taxi ride anywhere locally is less than $2. A good thing is that they don’t expect tips. You only pay what something is worth. There are of course exceptions to that. I was a little freaked out that the children go around with a hole in their pants. They don’t use diapers. Babies just go when they need to. I saw a couple of young children with their butts hanging out. Luckily I did not see one that had to go!
Tomorrow – Sunday is another free day for us. Then on Monday Austin will get his first stem cells via lumbar puncture. He will get 4 total lumbar and 2 via IVs. Please keep him in your prayers.
Thanks, Jenny and Austin!
P.S. My e-mail is now working and I would love to hear from you!
June 14th, 2008
We finally arrived in China yesterday! What a trip! I am so tired but we are here safe and sound. Sorry I have not posted sooner. This is the first chance I have had at the computer. The system has been down here so I do not have Internet in my room yet. It is supposed to be fixed tomorrow. I do not have access to my e-mail. I hope I will tomorrow. I need to be able to communicate! The phones cost more than anticipated so I will only be calling my immediate family. I met some wonderful people on the planes. I tearfully left my daughters and husband at the St. Louis airport. My sister Amy was flying out on another flight at the same time. So after we went through security we were able to have a small meal together. That made it easier for me. It was so neat to see her and she really helped me through security! I love you Amy! It was just so neat that we got to see each other and our flights were leaving about the same time. Whats the chance of that! I flew into LA and had to make my own way to another ticket counter. The women took pity on me and gave me a pass to the Korean sky lounge. That was so wonderful. It is normally for first class and business class. I felt privileged to be there. They had free food and drinks and the bathrooms were amazing. I was able to change Austin into his pjs and give him his medicine while talking on my cell to Darrin and my girls. The long 12.5 hour flight to Korea was good except I hardly slept. Everyone was so nice. Many people offered to help me at the airports and the plane. Some people can be so kind and caring. Korean Airlines was amazing. Each seat had its own tv with movies/shows to choose from. The flight attendants were very service oriented and helped me alot. We were fed two meals and unlimited juice and water. They even handed out socks and eye masks and hot hand towels. It was great! And the Koren airlines people took me through security and customs. They put me in front of the lines so that I did not have to wait. In Qingdao, two attendants helped me get my bags and rushed me through customs and then I was immediately picked up and taken to the hospital. The ride was about 10 minutes. When I arrived our room was ready. It is not fancy it is like a regular room in a hospital. I do have a queen size bed and Austin has a single bed with sides. There is a small fridge and microwave in the room. I was given a tour and Austin had evaluations from the doctors and therapist. Then we had to go to the local police station and sign in. That took more than an hour. Last night there was a big dinner and I got to meet some very nice people. I was going on less than 3 hours of sleep for over 2 days. I am so tired now. I big time jet lag. I will turn in. I will try to write more soon and tell you about Austin’s therapy. Take care.
June 13th, 2008
Wow! We leave tomorrow. I can hardly believe it. I don’t feel ready yet. So much to do. How do you pack for a whole month? Especially with all the things that Austin needs. I feel so over whelmed. We will be traveling for about 28.5 hours total! I ordered some Chinese currency almost 2 weeks ago and it is still not here. The bank is having it overnight-ed from K.C. It is supposed to be here in the morning. I still don’t have one of his meds. Hopefully everything will come together before we leave! I just can’t believe we are going to get on a plane. I think Austin senses some excitement. Today he started just laughing again which makes my heart sing. The next time I post it will be from China. Wish us well for our long plane rides. Thanks so much for all your love, support and prayers. They mean so much to us. Please keep in touch by e-mail. It helps to hear from everyone! God Bless.
Jenny and Austin
(Darrin and the girls say Hi too!)
www.austinwade.net
June 10th, 2008
Hi,
The time to leave is coming up so quickly. I am so worried about getting everything done. So much to prepare for. Please pray that Austin’s medicine arrives in time to take with us. One of his meds we have to get from Canada. We need it before we leave. We also need prayers that I am able to bring everything we need. I am not sure how the airlines will handle all of Austin’s food. I have talked with them but don’t feel it is well covered. I am going to miss my girls so much. I think they will have a great time here with school and family. We plan to talk everyday.
Austin had a good day except he slept too much and now it is 12:30 a.m. and he is wide awake and cooing! This morning he just started laughing while I was trying to feed him. It was so great to hear his laugh. It did not last long but oh what joy when he does laugh!! It was a real belly laugh! Then late this evening he was laying on the floor and really kicking his legs and I put him on his side and he rolled to his stomach! I was so excited. He has not done that in so long. I hope these are good signs of more to come. I just want him to really be alive and happy! When he just lays around and is lethargic I get depressed but when he is happy and moving his body I do so much better. It is amazing how the health of ones child effects a mother so much.
Have a good night! I will try to post once more before our big day!
Love Jenny and Austin
www.austinwade.net
June 7th, 2008
