I Interrupt Today's Trip Report...

to share with you some wonderful...

amazing...

NEWS!

We had our appointment with the new orthopedic surgeon today. Brady had a series of XRAYs to check the degree of his scoliosis (side to side spinal curve) and kyphosis (front to back spinal curve). If you remember, at our January appointment, his XRAYs showed that both curves had increased significantly in 3 months time. We approached today's appointment with trepidation because we feared his curves would be even greater. In recent months we have researched several options for treating this type of problem, all of which are either quite invasive (surgery) or very restricting for Brady (casting).

Brady had both standing and laying down XRAYs. By comparing the two, the doctor was able to assess if the curves were flexible or fixed. A fixed curve would be very similar in both a standing and laying XRAY. A flexible curve shows improvement when you lay down.

I didn't realize this was even possible, although Matt and I have been asking God to do this for our Brady for a while...Brady's scoliosis has actually DECREASED! His previous scan went from 15 degrees to 5!!! There is a margin of error with these XRAYs, but the doctor assured us that the improvement shown is outside of the margin of error, meaning that Brady's spine actually straightened out a little bit in the last month or so. His kyphosis curve went from around 47 degrees to 44. With the margin of error, this means that this curve pretty much stayed the same!

Another great piece of news is that his laying down XRAYs show that his curve is pretty flexible--the curve improved by about 20 degrees. A flexible spine is still able to be molded and changed. Of course the doctor told us that we are in no way out of the woods. We still need to follow up on this quite frequently and Brady is at risk for significant increases in either curve, especially during times of growth spurts. It is likely that some form of intense treatment or surgery could be in his future. Typically, growth slows down a lot by age 4 and 5, and then increases during puberty.

We are totally overjoyed by today's news. Remember what I was saying about God yesterday? Nothing, absolutely nothing, is beyond His reach. He can move the mountains, why did I ever doubt that He could bend my little Brady's spine back ever-so-slightly in the right direction and give us so much hope for his future!?!?!

Thank you for your prayers friends! I read about many cancer families who worry that after their child is done with treatment that people will stop praying. I worry about this too, but am constantly reassured by your comments and emails that we aren't walking along, even though our battles seem to be easier:) To God be the glory...

Trip Report: Day 4

Before I get on with our trip report, I wanted to ask you if you would keep our family in your prayers. Tomorrow Matt and I will take Brady for our long-awaited appointment with the orthopedic surgeon. If you remember, we are seeing a new doctor hoping to get a more “hopeful” 2nd opinion. Although we are praying that there are options available to intervene and fight against Brady’s spinal deformity, we are nonetheless sad and afraid that we may have to interrupt Brady’s life once again with some form of treatment. We have read about several different approaches, all of which are quite ground-breaking, and they each come with their own risks and discomforts for Brady. Of course our greatest prayer would be that the XRAYs tomorrow would show no further progression in his spinal curve. Our God has shown us many miracles along this journey, and we trust that nothing is outside of His reach. Thank you for continuing to pray for precious Brady:)

We are already on to Day 4! That means that reliving my vacation is almost over too:(

Before I share what we did on Wednesday, here are a few pictures from my mom’s camera from our first 3 days.

Inside the main building at the Grand Floridian.

Daddy and the boys enjoying a break in front of the castle.

Toddlers in rain ponchos…too cute! They look like little E.T.s! By Wednesday we had been at the parks for two straight days and we were ready for a break day. At the beginning of our trip report, I told you a little about Give Kids the World Village.

It is a little confusing to understand how the Make a Wish process happens, but I’ll do my best. The Make a Wish Foundation of Western New York and Give Kids the World Village of Kissimmee Florida partnered together to make Brady’s wish come true. Give Kids the World village is a not-for-profit resort where families who are on Make a Wish Trips to the Disney-area can stay. The provide free food, lodging, and transportation to the families staying there. Even though we opted to stay on Disney property, we were invited to visit Give Kids the World as often as we wanted during our week. They are also the ones who provide Wish Families with tickets to Disney and other parks.

Matt and I went the first night of our trip for orientation and then brought the whole family back for the day on Wednesday. The moment we arrived, we knew it was a special place that we would never forget.

Give Kids the World Village has areas of villas were guests stay that look like a pretty neighborhood with curved streets and lovely landscaping. The common buildings of the Village are all themed for children and are simply amazing.

Here is the Gingerbread House Restaurant. We went here first to enjoy a free (and very delicious) breakfast. The Restaurant is staffed by volunteers, most of whom were retired men and women who were so sweet and accommodating. They served your food cafeteria style and then one of them would carry your tray for you back to your table.

Brady was such a goofball! Did I mention that he never stopped talking throughout the entire trip? When everyone else fell asleep in the car? Brady was chatting…While we were dead-tired on our way back to the resort? Brady was chatting…blah-blah-blah-blah!

Next the kids took rides on the Enchanted Carousel. There were no other kids on it that morning, so the Williams 3 got as many rides as they wanted! Allie of course sat that one out!

Our next stop was the Castle of Miracles. This place was full of interesting places for the kids to explore. When you walk in, you instantly notice the ceiling which looks like this…

The ceiling is covered with thousands and thousands of individual stars. Each star represents a child who has been a guest at Give Kids the World. I couldn’t help but be humbled knowing I was standing where so many families had stood before, each facing their own child’s illness, many of them knowing this is the last vacation they will ever take with their child. It was a special place…

When we arrived, Brady and I got to write his name on his star. Then he put in in a magic box and the Star Fairy came (via a few cleverly set up TV screens) and took his star and promised to fly up to the ceiling that night and place it among all the others. In a few weeks we will receive a certificate letting us know where his star was placed.

Here we are writing his name on his star. Look at his sweet little hand on top of mine.

The kids each also got to use the Magic Pillow machine. This was the most clever and adorable thing! The kids pushed a button to choose what type of pillow they wanted. The machine started shaking and making chicken noises (indicating that the “chickens” inside were busy stuffing the pillow with their feathers!). Then bubbles came pouring out of the machine! Finally a toddler-sized pillow dropped out of the bottom of the machine. SO super cute!

The castle was filled with all sorts of surprises for the kids. Here is Brady opening drawers and doors that covered one of the walls. Each time he did, he heard a silly noise!

Here are Cara, Grandma Kathy, Eli, and Matt on the way to the Amberville Train Station.

On the way there we stopped at a fish pond and got some great pictures!

This is one of my favorite pictures of the trip. I love how it really captures a spontaneous moment in time.

Always time for a hug!

“WAIT! Don’t move…I’ve almost got the picture….Oh forget it!”

At the train station, there was an incredible model train display!

I love taking pictures of my kids’ feet!

This monkey was showing us the way to the train rides. There were volunteers waiting there to give just us a ride (as many as the kids wanted!)

It had been drizzling all morning, but we were happy to find out that the mini gold course opened up after being closed due to the rain. Matt, who loves to golf, took the job of teaching our kids putt putt pretty seriously!

The kids of course don’t take anything that seriously!

It was time to eat again, this time we enjoyed food from Boston Market who sponsors a food stand inside Give Kids the World. Afterwards we enjoyed ice cream that the kids at the village can have for breakfast, lunch, and dinner!

We said goodbye to Give Kids the World Village in the early afternoon, but we knew we would be back someday! The Village welcomes all former Wish Families to stop back and visit for a day when they are in the area again. I will never, ever forget this place and we are so grateful for their generosity and love.

Even Brady was tired out. Notice he is snuggling up with his new pillow!

I must have put away my camera for the rest of Wednesday as I have no pictures to show! During naptime mom and I went to the Main Building at the Grand and asked a concierge to help us find a dinner reservation. Grandma Sandy and Grandpa Ron had reservations at Kona Cafe at the Polynesian Resort. We were able to get a dinner reservation for mom, the kids, Matt, and I at the Wilderness Lodge Campground. This campground area is part of the Wilderness Lodge Resort. By this point in the week, the weather was starting to change. Temperatures were dropping and it was a dark, rainy night. We got on the monorail and headed to the Magic Kingdom. From there we boarded a boat that took us to the Campground, which was about 10-15 minute ride in the cold rain! We docked and had to run into the woods and to the Trail’s End Restaurant.

Matt and I had been in this area on our honeymoon, but we had the pleasure of going to see the Hoop Dee Doo Review which was one of our best memories! That dinner show is right next door to where we had dinner. (By the way, I give the Hoop Dee Doo Review 4 very enthusiastic stars!)

The Trails End Restaurant was a rustic buffet with good country-style food. I’m giving it 3 stars (***) for good service and satisfying food. I’m not much of a country girl, so the rustic atmosphere didn’t do much for me:)

After dinner we headed back to the resort the same way we had come. This time it was just a bit colder and windier. We huddled together with the kids and told them that we were on a big adventure!

I want to take a minute to brag about my kids. Each of them really exceeded our expectations with their behavior throughout the trip. They were so much fun, so enjoyable, and truly well behaved. There were very few tears, I can’t remember any tantrums, and it reaffirmed what I already know…

I have four great kids!

Successful Day

Another busy snowy day here in Western New York. It was a day of laundry, Brady's physical, oh yes, and those 4 wild monkeys!

I had to drag sweet Brady out of his crib right in the middle of nap time to get on the road to Rochester. The roads were snowy, but we got there and back by going slowly. Being home most days, I'm not that used to driving in the snow. I'm even less used to wiping the snow off of my car. I was quite glad that my dear husband remembered to put a snowbrush in the van! Brady did great during his appointment. He was far less reserved than ever before and even giggled with our pediatrician a little bit. It is amazing to see him sort of "healing" as he learns to become more and more comfortable around people.
The pediatrician and I discussed Brady's back deformity that is starting and she agreed that perhaps we may want to switch orthopedic doctors to one who deals primarily with pediatric patients. There is another doctor who is affiliated with Strong that we could go see. Our plan is to keep our appointment next week with the doctor we saw a few months ago. I'm interested to see his opinions of things now that something does seem to be happening with Brady's spine. His original thought was that it most likely would happen during adolescence. We'll see what he has to say, and in the meantime make an appointment with the other doctor.
So, here we are. As you all know, Matt and I are willing to go anywhere, see anyone who has the most experience with this type of problem. We have scoured the internet and it is tough to find much of anything related to toddlers who have had 5 level laminectomies. This is an area for prayer right now! We are praying for God's wisdom and direction as we take on this next challenge.