Wednesday, April 29, 2009

Spring is in the Air

I just realized how long it's been since I updated Brandon's Blog. I always thought that once we returned from China that I would keep it current and update regularly. Guess I was fooling myself. Brandon is great. Not visually but over all he's doing quite well. I would say visually we haven't seen much changes (if any) since the last update. I am disappointed in that aspect because I thought we would continue to see improvements for a year after being in China. However his bad days are less frequent than before. Before treatment he would have days where he couldn't see anything. He still has those days but it happens less often than before. He's still experiencing severe headache's and for that I'm a bit concerned. He has suffered from headaches for most of his life and they don't seem to be slowing down. We are thinking about taking him back to the neurologist but we know what he'll say. They want to check his cranial pressure by placing these bolt like things under his scalp in order to monitor the pressure for 48 hours. We really don't want to put Brandon through that but our options are limited. I'm sure we'll make a decision in the next few weeks. Other than that, Brandon is growing really fast. I think he's going through a growth spurt. He's looking forward to school being out next month and for his birthday in July. It's hard to believe he's going to be 9. Time really has been slipping by us. It still doesn't seem like it's been 8 months since we were in China. 8 MONTHS. Still doesn't seem possible.

Wednesday, January 21, 2009

Happy New Year!

I can't believe it's 2009 already!! 2008 was filled with excitement, disappointment, pride, heartache, and above all....hope. I can't believe that in one year we discovered that there was hope for Brandon in China, raised the money AND spent 6 weeks in a Chinese hospital. Through it all, Brandon was such a trooper and for that, I am very proud to be called his mother.

First Christmas "AC" (After China). Brandon loved Christmas this year. He enjoyed looking at all the Christmas decorations and even helped decorate. (He was even disappointed when it was time to box everything up for the year). For Christmas he received....TOYS TOYS AND MORE TOYS! He got a new XBox and some other video games. He also got a glow in the dark drawing board. The list is endless and for the moment my mind is blank but he received several items to help stimulate his vision. Oh and he received a stack of books.......IN PRINT!! A couple of weeks before Christmas he received a CCTV which has been a wonderful aid. He can look at his books without straining with the CCTV.

New Year.... Now that that chapter in our life is over, we look towards the future with great optimism. We will always be grateful for everyone who helped Brandon. Now as we focus ahead towards a new life, we know that it can only get better for our family. Brandon has been thriving and we are so happy. Did the treatment make a huge difference? Maybe not a huge difference but it did help Brandon. He will never have perfect vision and we have accepted that. Over the next few years, we'll be able to understand more about what he can see and how we can help to make his life a productive one. He is able to navigate for the most part without a cane. In fact he does not use one outside of school. He is able to see steps where before he could not. For us that is a great improvement because it further helps him to navigate in his surroundings. The sky is the limit for him.

What's Next....We are currently trying to decide what is best for our family now. We are looking at relocating so John will be able to work closer to home without being gone for weeks at a time. We'll keep you informed on our decision!! Happy New Year!!

Friday, November 21, 2008

Brandon's update on Channel 13 News

This past month has been CRAZY!! However we did manage to meet with Jennifer Brown from Channel 13 news to do an update. As always, she did a wonderful job! Here's the link: http://www.krdo.com/Global/story.asp?S=9378995

On another positive note, Brandon received a scholarship which will pay 90% for a CCTV. Our cost is $200. The new CCTV will allow Brandon to see printed books by zooming into the images. Hopefully his new learning tool will be in by Christmas!

Saturday, October 4, 2008

Horses, Bulls & Rodeo Clowns

Brandon & Nick with a fellow Kansan, LJ Geist. LJ is originally from Scott City, Kansas - like Brandon. He was the rodeo clown for the event. What a coincidence!! He's parents, who know Brandon's dad & his parents, were in town for the rodeo also. They had no idea the rodeo was being put on for Brandon!!



We took Brandon to a rodeo that was put together in his honor. The weather tried to hold up but at the end, it began to sprinkle. Brandon got to see a bull for the first time. He said "oohh that's big.....can I ride it?" He did get to ride a horse which made his day.



Brandon got to ride a horse!! Thanks for the ride Cody!!