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Latest News

It’s hard to believe that more than a year has gone by without a single update to Brett’s website. The lack of updates is certainly no reflection on what Brett has been doing for the past year. We’re excited to report that he continues to do well with his overall health and has been making improvements in many areas.

This past September Brett started a new chapter in his life - kindergarten. He is now attending Key Center which is about 15 minutes from our house. It’s a wonderful school that is geared towards special children from kindergarten age through early adulthood. From the very beginning we have been impressed with all of the resources this school has to offer - from their indoor pool to the wheelchair accessible playground. And even more impressive is the staff who works there. Brett has the most incredible teachers, aides, assistants, therapists, administrators and school staff. They are all hands-on with him and do so with the most loving spirit. We couldn’t imagine Brett being in a better place. He is attending school 5 days per week and really does love going.

Brett has also shown improvement in his overall strength. He has much more control with his head and is moving his arms more frequently. While we’re still working towards him using his hands in a functional way, he has shown some progress in using them to press switches which typically activate a toy of some nature. At school he’s had the opportunity to use a gait trainer - this is a device that helps support him while he takes steps. Brett had previously used a gait trainer at home and had taken a few steps, but had never really been able to move the device. Recently at school he shocked everyone by not only taking steps in the gait trainer, but actually walking 50+ feet unassisted. Of course we wish we could have been there to see it for ourselves...but those who saw it were thrilled. On another occasion, the physical therapist was able to capture Brett walking in the gait trainer on video...it was truly amazing to watch. We couldn’t be happier about his progress!

Over the past year Brett has started eating pureed food by mouth. While he still receives the majority of his calories through his feeding tube, he does eat at least one pureed meal each day. The school offers pureed lunches, which Brett orders about once or twice each week. He’s been eating spaghetti, ravioli, chicken, macaroni and cheese - he’s even had chili and beef/bean burritos! This is definitely a new accomplishment for Brett and we’re very proud of him. We can’t wait for him to have his first steak and corn-on-the-cob!

Just recently Brett was granted a wish from the Make-A-Wish foundation. One of his nurses had nominated him a while ago and we were notified last month that the wish would be granted. He has since received a state-of-the-art communication system that he can activate through head switches. This will give Brett the ability to communicate his needs with us, as well as make some of his own choices. For example, he will be able to not only tell us that he wants to hear a particular song from one of his favorite CD’s, he’ll actually be able to play the CD! (we might have to turn that feature "off" at bedtime!) We were fortunate enough to have Andrew from Motivaid, the company that created this communication system, come visit us a couple of months ago to get Brett set up on the system. During his training session, we were overwhelmed by all that Brett could eventually do with this one device. It is something that can truly make a difference in Brett’s life. What was equally impressive was the time that Andrew spent with us - he was incredibly patient with our family and spent many hours going over everything we needed to know. We are so grateful to Make-A-Wish and Andrew!

It’s been over a year and a half now since Brett’s little sister, Natalie, arrived and they get along wonderfully. Natalie thinks Brett is the greatest - in fact "Brett" was one of the first words she said that we could understand. Brett tolerates Natalie climbing all over him and identifying each of his body parts... eyes, nose, mouth, ears, etc. He did, however, once express his displeasure of her sticking her fingers in his mouth one too many times...he chomped down and bit her finger pretty good. Needless to say, it’s something Natalie has not yet forgotten - nor repeated! Natalie likes to ‘read’ books to Brett and hold his hand while dancing. The other day they were even ‘singing’ to each other as Natalie kept mimicing the sounds Brett was making. It is so incredible to see how their relationship is forming and the way Natalie loves her brother.

We are thoroughly enjoying our new found freedom with the conversion van. We’ve been out and about more in the past year than all of the first five years of Brett’s life combined. We’ve ventured down to visit Aunt Suzie, Uncle Chris, Katie and Kelly several times in Richmond, VA, taken countless trips to grandparent’s houses and most recently headed down to Duke University for a fundraiser at the Brain Tumor Center. The best part about these outings is that Brett truly seems to enjoy the experiences. It really is a great feeling to be able to just wheel him into the van and go out as a family. Speaking of doing things better as a family, we are in the midst of planning some major changes to our house that will make life better and easier for all of us. We are going to build a garage in front of our house so we can then renovate the old one into a new bedroom for Brett. This will be exciting for many reasons. First, it will keep Brett on the main level of the house and we will no longer have to carry him (and all of his equipment) up and down the steps on a daily basis. This has proven to be more and more difficult as Brett has gotten bigger - he and Dave actually tumbled down the steps just a few weeks ago! Second, the room will be more spacious, have its own accessible shower area, ceiling track system for transporting Brett as he gets heavier and have a mount for a swing! This part of the project alone will make a huge difference in our daily lives. To cap off the outside changes, a front porch will be built so that we can sit outside with Brett and include him more in the many neighborhood activities that are always going on.

On the inside, we are basically going to transform our first level into one fairly open space. The lowered-floor in the living room will be raised to be uniform with the kitchen, foyer, etc. so that everything will be level for Brett’s wheelchair. Elimination of walls and hallways will make the main level of our house totally accessible for Brett. We hope to create counter space in the kitchen low enough for Brett to come in and help make dinner. A good sized dining table with plenty of room surrounding it will allow for Brett to join our large extended family for special dinners and celebrations. We are not really adding any extra room to our living space, just transforming what already exists into something more functional.

We continue to be blessed with amazing support from nurses, doctors, family, friends, therapists, etc. When we sit down to write these updates and reflect back on the past few months (or year in this case), it really hits home just how far Brett has come - and the many people who have been there to support him. What an incredible journey we’re on...

Click on the link to view previous "Latest News" updates.
Spring 2002 News
Fall 2002 News
Spring 2003 News
Winter 2004 News
Summer 2004 News
Winter 2005 News