Posts filed under 'cp'
Hi,
Austin is doing well. He is moving his body more and I feel that he is seeing slightly better. He also makes more faces than he used to. He is getting more of a personality. About 2 weeks ago, Austin was sitting in his squiggle chair and I walked over to him and he looked up at me and smiled. I had two witnesses. He had this moment of clarity. I know he saw me. That was the first time in his four years of life that he smiled in response to someone smiling at him. My heart soared. It has been heartbreaking for me that my son could not smile in response to a smile. He just hasn’t had that ability. Then last week, Austin was doing OT with Kim and she was having him work on bearing weight on his arms. Darrin walked over to Austin and started to talk to him. Austin turned his head toward Darrin and got a huge smile on his face. So we all got excited and Austin even laughed! We could not believe it – for that moment we had peace. Our son responded to us like never before. It was so wonderful. He is still not able to respond every time someone talks to him but he is definitely more aware. It is like he has more moments of clarity. We just have to try and catch those moments. I will treasure those responsive smiles. They make this journey of trying to make him the best he can be worth it.
Austin started back with preschool this fall. He loves his teacher Ms. Christy. Someone from the schools comes 4 days per week for 45 min. We were also blessed to start back with therapeutic riding. Austin seems to love riding and the fresh air. He often squels when the horse gets to trot! He just loves movement. Then he also has PT/OT each twice a week. His schedule keeps us very busy plus his sisters schedule.
We are leaving next week to see Dr. Hammesfhar in FL. His treatment is supposed to help with the stem cells and I have been told by other parents that it has helped their child’s seizures. I am praying that it will help Austin’s as well. If we could stop his seizures it will help him so much. We had about 2 weeks of no seizures and it was so wonderful. That was when Austin had more moments of clairity. Anyway please pray for our trip. I will let you know what happens with the treatment.
God Bless and I hope this finds you well. Thanks for your prayers for Austin!
Jenny
October 1st, 2008
Sorry it has taken me a while to post. This jet-lag thing has been very hard on Austin and I. For some reason it was easier to adjust to the time in China and harder for us at home. Go figure. Our flights were very long and we had more minor trouble this time. One of the planes had Austin and I booked a few seats apart. He can’t even sit up and they want to put him separate from me! They had us fill out a 5 page report on Austin so I did not understand why they did not understand. A child should never be separated from his parent on the plane even if they are totally healthy. They took care of it but could not put us in bulk seating like I requested so we were very cramped. Oh.. well we are home safe and sound. I was so happy to see my girls and Darrin. I missed my family and friends. Sometimes going away for a while makes you realize how important the people in your life are.
I want to thank everyone for their support, love and prayers. It means so much that so many care. Thanks for all your comments they help give me a boost to carry on. It means a lot to hear from you. I will update this blog about every month for a while to tell you what is happening for Austin. Well, I will definitely try!
So far I do think it was a worth while trip. People have told me that Austin’s eyes look better. They are more open – alert like. I think he is holding his head slightly better and his right hand (his bad tight hand) appears to be a little looser. One thing is for sure is Austin has much more of a personality. He wants to sit up and often balks when I lay him down. He is also refusing all his baby food. He wants big people food now. Darrin thinks he is chewing better. He is also developed an attitude about his medicine. We are in trouble now. He refuses to take it and will leave it in his mouth and try to spit it out and or gag! Austin is currently on three seizure medicines. But he still has small seizures. The hard thing about him wanting big people food is I do not know how I will be able to get his supplements in him. He is on quite a few but they keep him very healthy. We upped his Reliv products in November and he did not even get a cold all winter. And his head started growing for the first time in over 2 years. I just don’t want to loose the gains that we have made. I am going to have to get more creative. Any healthy food ideas would be much appreciated!
Thanks so much for following our journey – please check back periodically for updates! Please pray for more improvements for Austin. Most people see the biggest results 2 to 6 months post treatment. Please specifically pray for his brain to understand what his eyes see. If he could really see it would help open the world for him.
Love The Wades
(Jenny, Darrin, Abby, Amber, Austin and Raven too)
www.austinwade.net
Sorry I have not posted pics – I am not sure how to do that. I had help with the one pic I posted. So if you want to see our China pics you will have to come over and visit!
July 18th, 2008
Hi Everyone,
Austin just had his miracle cells. He had an IV treatment for his last one. They are so easy. It did take 3 tries to get the IV in. The nurses are great – it is just that Austin has veins that are hard to get to. It is so amazing to watch the stem cells go into the IV. He slept most of the time.
Austin has been showing more emotion lately. He cries when he is upset. He lets me know if something is bothering him. Now he often cries when I lay him down. It is good that he is letting me know things more. It makes things a little more trickier but I think it means he is more aware. He seems to be somewhat more alert. I feel like he is seeing slightly better (for those you don’t know – Austin has cortical vision impairment. His eyes are fine but his brain is so damaged that it is not able to understand what he is seeing.)
I feel like this has been a good trip. It has opened my eyes to many things. I have really enjoyed getting to know some of the Chinese people and learning about their culture. They are amazing people. Some things are so advanced here but some places it is like stepping back 30 years or more. China is changing and growing so fast. We have one more full day here and then we leave for home. I am so excited to get home but will miss many of the people here.
It was been a wonderful experience. The next time I write will probably be from home. Please wish us well for our long flight home. Prayers are so welcome!
Thanks for following our journey. I will update soon after we arrive home and will try to update every month.
Thanks again for being Austin’s Angels!!
www.austinwade.net
July 11th, 2008
Austin had his 5th stem cell treatment on Monday. He did great again. No fever and has been very perky. He did sleep some this time and did not mind the oxygen cannula as much. He is such a trooper. It is hard to lay down for 6 hours but it went fast and he is so good.
He seemed great so we went on a walk after dinner. There is a beautiful park right next to the hospital. It has many light up fixtures displaying statues for the Olympics. It is so pretty. They have dancing in the park and many people just walk and look around. It is very beautiful. We were having a great time when I stopped to watch some of the dancers and saw blood all over Austin. I freaked. Luckily a few of us from the hospital were together and this guy David from Alabama was there and he helped me. Austin did something to his IV. It just really scared me. David got a cab and we went straight to the hospital. The cab driver was so kind he did not allow us to pay him. We ran to the elevators and people there helped. We got him to the nurse and he had just pulled his IV out of his arm. They cleaned him up and he was fine. One lady who was in the elevator stayed with us until we knew Austin was fine. It just scared me. I freak out easily. You would think that with all the trauma Austin has been through that I would be better at handling it but I am not. He has had so much pain in his little life and I just can’t stand for him to have more. Anyway Austin did not cry until we layed him on the table. So it did not hurt him just freaked me out. He has been crying some when I lay him down. He is a big boy now and wants to be upright! All ended well and Austin is good. I was shaky for a while but am good now.
Yesterday I had the caregiver come again so I could have a day out. My friend Tonya (she is from Flordia) and I went to an antique market and had lunch and then walked along the beach. I really wanted to see the beach somewhat close before we leave. It was so good to have a break from the hospital. The people here are so nice but I need to get out some.
Today was Austin’s last full day of therapy. Tomorrow is is last stem cell treatment. This treatment will be via IV so it is easy and only takes about 40 minutes. Then we have our last day on Saturday and we leave on Sunday. I am going to miss the people here but I can’t wait to see my family and friends back home. I miss my two daughters terribly. It is really starting to get to me. There was a couple here with their son who has autism and they had to leave their 6 month old daughter at home. She learned to crawl while they were away. They would be very difficult. I can talk to Abby and Amber and hear about their day. We talk pretty much every day.
Please pray for great improvements for Austin. I feel like something is happening but I am not sure. The doctors say it takes time. Most people start seeing improvements about 2-3 months after treatment. Many report benefits up to one year later. My little guy has so far to go. I just pray that he is able to really see me. I love him so much. He has taught me so much. He is my angel.
God Bless. Hope to hear from you. It really lifts me up when people write. I am sorry if I have not gotten back with some of you. I am so busy here.
July 10th, 2008
Hi,
All is well here. We leave one week from tomorrow. The time here is starting to go fast. Austin’s fourth treatment went well. He will have his last spinal treatment on Monday and his last IV treatment on Friday and then we leave next Sunday. Yesterday we had the day off and went with some of our friends here around the downtown area. We stopped by the local Qingdao Harley Shop. It was still being built but had the signs up. Then we went to a Walmart. I got a pink bag for carrying items from Walmart that says Walmart in Chinese and English. And then we ate at McDonalds. Their cheeseburgers taste better here – maybe they use better beef! Who knows. Then we were going to go the beach but it rained. So we went again to the GMO market. It is a place that you can haggle with the prices. It is really neat.
Sat. July 5 – Austin had another full day of therapy. He gets such good therapy here. He has PT in the morning. Tom is his therapist. He is so good with Austin. He works him hard but also loves on him a lot. Austin’s body always feels so good and loose when he is done. After PT Austin goes in the stander for 30 minutes. Then we get a 2 hour break for lunch and Austin often takes his nap. Then he gets electric stimulation therapy. After that he gets acupuncture. Austin no longer cries for acupuncture. At first it seemed so weird but we are used to it now. I do think it is doing something. I know it has been around for 3,000 years or more. Then in the evenings we sometimes go out for diner or eat here and hang out with friends in the lobby. Some of our friends have already left and new ones are coming in. It seems so busy for us here. I thought I would have a lot of time to catch up on things but I have not. I am too busy with treatments, therapy and taking care of Austin’s daily needs.
Thanks for being Austin’s Angels. www.austinwade.net
July 7th, 2008
Austin had his fourth treatment today. It went well. I have not noticed a fever. He has been very happy and making lots of noises. Right after he got back from the treatment, he started moving his right hand and making noises like he was a little frustrated. They put oxygen (they just do it as a precaution after the anesthesia) on him and he did not like the cannula going up his nose. It made him mad. It is good to see him having more emotion. Some of the older patients have told me that often have more energy right after the treatment. Maybe Austin felt that. He had to lie down for 6 hours. I was able to give him some water after 2 hours and some food after 4 hours. I just feed him some applesauce and he ate just fine laying down. We had lots of friends visiting our room which helped make the time pass quickly. A new family is here also from Missouri. It has been good to meet them. Their boy Brayden has ONH. He has some limited vision and gets around wonderfully. He is amazing. He really likes Austin and comes in to visit and talk to him. Austin seems to brighten up when kids talk to him. I feel like Austin is able to grab things with his left hand better than before. Last night during his bath he seemed to really understand the word splash. I always try to get him to splash in the bathtub at home. The bathroom here has a handicap shower so I bought a baby tub at the local market and I sit him in it with a towel around him. It works fairly well. His legs hang over the tub when I wash his hair. Anyway, he started splashing and I got excited and said splash splash and he did it about 10 more times. Then he put his hand back into his mouth - sucking is such a strong need for him. Then I took his hand out of his mouth and he did another round of splashing. At home the most he has splashed at once is about 3 to 4 times. So I do not know if it is because of him being able to somewhat sit in the tub or if something is happening. I would like to think it is the latter. He got me all wet! It was well worth it. So cute. It made us both happy. Tonight he was very happy and talkative.
Please keep the prayers coming. We love to hear from you!
July 3rd, 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
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