Posts filed under 'sma'
It seems there are not enough hours in the day. We have received the Electric Stimulation machine from Brandon’s PT. We have permission to use it for 2 months and then we have to prove it’s been beneficial and they will then sent it thru insurance to see if we can continue to use it. The day we went to see his PT, Brandon shocked us all. We were talking and Brandon crawled over to a small set of stairs that was in the room. The stairs were special made for therapy for children and the steps were about 3 in. in height. He proceeded to pull himself up by using the hand railings on both sides and then he did something that I have NEVER seen him do, he walked up the stairs all by himself, and he did it 3 times. His therapists jaw hit the floor as we was just in the middle of discussing his trip to China. She looked back at me and said, ” What’s all that about?” and I told her, ” that’s China” : ) So needless to say our appointment went a lot longer than it was supposed to. She’s going to try and make a good case for us to get the needed extra PT sessions. Well, I just wanted to give everyone some more good news. We’re still TRYING to work hard with his therapy at home, but he’s four and he gets real tired of it. But as we go we try to get a little more creative about it. Some days it works, others it does not. I want to wish all of you Merry Christmas and have a Happy New Year.
Love to all,
Sharon, Brandon and his entire family
December 22nd, 2008
Hello everyone,
Just wanted to update a little bit about Brandon. Sorry it’s been so long. We’re still just trying hard to do his PT at home right now. Tomorrow we’re going to Univ of WI. to see some new therapists to try and get some more equipment. We’re trying to get something similar to the electric wave machine they used in China. Brandon’s doctor has already spoken to them about getting one that they could program so that we can use it here at home. I’m also going to see if they can prescribe some more PT here in Janesville, other than what he already received thru the school system, which is only 1 hour 2 times p/wk. He needs that everyday. But Brandon is doing well, he’s able to get himself into bed now. Before we left he couldn’t get his legs up into his bed without help and now he’s doing it much better. He’s still pedaling everyday getting ready to ride his bike next summer. His Physical therapist noticed an improvements with his leg muscles, she said he could do more for a longer period of time and noticed his calf muscles are not as stiff and he’s able to keep his feet flat on the floor. So we’re still moving forward hoping and working for more. Hope everyone had a wonderful Thanksgiving and I’ll talk to you later.
Sharon
December 1st, 2008
Hi everyone,
Sorry it’s been so long. We’ve been pretty busy getting settled back in. Brandon is doing great. He’s been doing little things here and there that I’ve noticed. He has been able to stand up with his hands supporting his upper body on his knees, for a much longer amount of time. When we went to China, he was lucky if he could do that for a couple of seconds, now he’s done it for longer than a minute. He’s so proud of himself, he likes to show everyone what he can do. PaPa also had a present for him when he got home-a bike. We’re going to turn it into a stationary bike thru the winter to help him excercise so he can ride it next year and race his sister. : ) He plans on winning. We’re in the process of setting up more therapy sessions, it’s taking a few meetings here and there but it’s getting done. In the mean time, we’re doing what we can with him at home. He has a stander so we use that too. Well, I’ve gotta go, it’s Halloween and we have to get ready. Everyone take care and I’ll talk to you soon.
Sharon & Brandon
November 1st, 2008
Good Morning,
Just wanted to let you all know that Brandon had a final evaluation yesterday. They all said there is nothing with his muscles and he should be able to make them strong again. I also learned that the Stem Cells won’t actually be completely in place to do their job for 8 – 12 weeks after the injections. So like I said, the best is yet to come. So, it’s off to Polar World for our last adventure in China. I want to thank all of you again for keeping in touch and sharing our experience with us. As I said before, I will continue to update Brandon’s blog with all his upcoming progress. : )
Love to all
Brandon, Sharon & Tina
October 24th, 2008
Well, he had his last spinal today. It went well. He was a little more drowsy than his other treatments. Which was actually better, as it made the time go faster until he was allowed to have anything to eat and drink. His PT went very well again today. He rode the stationary bike again, and we pretended he was racing his sister Taylor, and he pedaled his heart out. He actually wore himself out, he just kept going and going. Just like the Energizer Bunny. He will have one more PT tomorrow and then he has Friday off before we leave. We’re going to have a lot of work to do when we get back home. We will have to set up more therapy sessions. His muscles have improved and we can’t loose that. Owen, his therapist, said his hips are not strong enough to hold his weight, but they can be. And that’s a lot more we had than when we left home. He didn’t have that chance when we left. So I know he won’t walk off the plane, but he can go further in his walker, he can lift his legs off the bed, he can walk around the bed with support assistance and he’s learned how to peddle a bike without using his hands to push on his knees, and he tries to stand on his own two feet, with his feet flat on the ground more. Before we came he had lost most of his ability to keep his feet flat on the ground due to his calf muscles tightening up, and I know there will be more to come in the next few months. So, yes, this trip was worth every penny. We want to thank you all again for all your prayers and keeping us in your thoughts and keeping in touch the way you have. It was great to hear from all of you. We are planning a whole day of fun on Friday for Brandon. We’re going to take him to Polar World and hopefully see some Polar Bears and some Dolphins. He’s been excited about going so we figured it would be a great way to end our trip. We leave here Sat. a.m. at 11:45 (10:45 p.m. Fri. back home) and fly to Beijing, we will leave there at 4:10 p.m. and will arrive at 4:14 p.m. in Chicago. I will continue to keep the blog going to report Brandon’s progress after we get home. Talk to you all soon.
Brandon, Sharon & Tina
October 22nd, 2008
Good Morning or Good Evening to everyone else.
The doctors came in on Monday and said that Brandon’s leg muscles were stronger. They did a reflex check and noticed improvement from when he arrived. Also, they just left him this a.m. and they asked him to raise his legs up off the bed while lying flat, and he did it with both legs. It looked like it didn’t take much effort, he just lifted them right up off the bed. Before he had to pull his heels in to bend his knees and then he would pull them up. I can’t even remember the last time I saw him raise his legs straight up off the bed. His muscles seem to be loosening up a little so he’s trying to do more. He walked quite a ways in his walker yesterday, before he was tiring very quickly. He used his walker to go to the 9th floor and rode a stationary bike yesterday. He’s never pedaled before so it took him a little while before he got the hang of it, he kept wanting to go backwards. But he finally got it. So we are really seeing some great improvements. I had to watch the level of my voice when he lifted his legs up, I got so excited. : ) Well, it’s now time for PT and then we are going to try to go shopping downtown. Talk to all of you soon.
Love to all,
Brandon, Sharon & Tina
October 21st, 2008
Hello everyone,
I just heard from someone that they thought Brandon walked along the beach. Sorry about that, I meant Tina and I took him to the Beach and she carried him to the water. It was very hard to get him down to the beach too. They have steps down, which I carried him to a landing and had to hand him down from there, as the remaining steps were very worn away and slippery. A very nice young man offered to take him from me off the landing, I don’t think he was expecting him to be so heavy. He looked very surprised. Again, sorry about that. I did talk to someone today that told me that the fact that his muscles are as sore as they are is a very good sign. It means it’s working. But sometimes you see the biggest advances within the next few months. But we’re still working hard and Brandon is counting down the days till he comes home. Love and miss you all. Thank you again for all your prayers, keep them coming, especially for Brandon to stay strong and get thru his PT sessions. They are so hard on him.
Sharon, Tina & Brandon
October 19th, 2008
Hi everyone,
Everything went well again. He wasn’t as dizzy as the first time. But he didn’t come out of it as fast. He was slurring pretty good when we brought him upstairs. Again, a long afternoon. He hates laying there for that long. His appetite never suffers though, when he was finally allowed to eat he ate 5 pieces of pizza. I don’t know where he puts it. We decided to take him to the beach today. We figured it would be more relaxing than staying at the hospital. He like to play pretty hard with all the kids, and he’s supposed to take it easy. So a day of walking along the beach was great. His back muscles are still a little sore so now we’re all resting in our room. He’s being a little cautious with his legs right now as his muscles are sore. He hasn’t used them in 2 years, so that’s to be expected. I’m excited that they’re sore, but he doesn’t like it at all. We’re going to try to get him to use his walker more now to try and help loosen them up so that they’re not so sore. I’ll continue to keep you posted.
Sharon
October 18th, 2008
Brandon will have his 2nd spinal tomorrow afternoon ( friday) He did some new things in PT today. They took him upstairs and had him try some special stationary bikes. He was a little short for them yet so Owen had to sit behind him so he could reach. He still loves the Stander the best. I’ll let you all know how he does after the Spinal. It probably won’t be until Sat. am which is you Friday p.m. It’s so nice to hear from everyone. Tina and I both get on here and read the blogs, so keep them coming. : ) Right now it’s our only communication because the phone program that we signed up for keeps failing. We think about all of you all the time. We just got online and it says that it’s 40 degrees. It would be 3:00 in the a.m. over there right now. I think the coldest it’s gotten here at night is probably about 55 to 60 degrees. It’s been very warm everyday. Yet everyone is running around in long sleeves, sweaters and coats. Well I gotta go. I think we’re going to order take out tonight. It’s very cheap, and quite the treat, and sometimes very interesting.
Love to all,
Brandon, Sharon & Tina
October 16th, 2008
Good Morning,
Tues. was a good day for Brandon. He was a little dizzy in the am but that went away quickly. You’d never know he had a spinal. He wasn’t tired and had no headaches. Thank God, I know they can be very painful. We just stayed around the hospital and played with friends. Today, he says he doesn’t feel well, says he has a little headache, but only when he turns his head a certain way. We’ve given him something for it but we are cancelling electric wave this am. He will hopefully for PT later. We gave him something about an hour ago and he says it’s already working. It’s a beautiful day today so I hope he feels better later, maybe we can take him for a walk and get some fresh air.
Love to all
Sharon
October 15th, 2008
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