New Record!

73 days! New record for days out of the hospital! The last record was 58 days, and it seems as if he's still going strong. He's doing so well, in fact, that the new record sort of snuck up on me. Very thankful, though!

 It was a beautiful day on the Hill!

Wednesday March 23 I took Brett to clinic for a routine scheduled visit with his nutritionist, pulmonologist, and gastroenterologist. It was a good visit - although he didn't gain any weight, at least he didn't lose, and that's a small victory in and of itself.

We talked about adding more salt to his diet now that the weather is warmer and he will be sweating more. The GI doc increased his Prilosec dose in hopes of making him feel better in his tummy and maybe eat more. She also prescribed a substance called a "binder" that is supposed to help his stool not burn his bottom so bad. It was complicated the way she described it - as well as gross - so I'll leave it at that. She took a culture on his bottom to test it for strep. Also his stool will be tested again for c. diff., even though there's no real reason to suspect he has that again. I guess since he's had c. diff once now, they will test almost every time for that in order to catch it and treat it before it begins causing him to lose weight. His last culture was negative.

No changes on his feed - still tube fed for 20 hours a day, while eating and drinking whatever he can on top of that. Still over 2000 calories a day for our little guy and no weight gain. Frustrating.

The good news is that he is healthy right now, with no lung infection. He is not scheduled to go back for four weeks - yay, with a weight check in 2 weeks on infusion day, April 8. 

The beautiful daytime weather turned into a hailstorm that evening!

Brett's pulmonologist decreased his Flovent dose from 110 mcg to 44 mcg. (This is the dose Mark takes for managing his mild asthma). Oh and he started on Zyrtec this week to hopefully help with his eczema that is under control only when I use the heavy steroid ointment. His eyes are all eczema-looking, so maybe it's allergies. Nobody really knows, but it's not a bad idea since the pollen season is again upon us.

No changes on his feed - still tube fed for 20 hours a day, while eating and drinking whatever he can on top of that. Still over 2000 calories a day for our little guy and no weight gain. Frustrating.

The good news is that he is healthy right now, with no lung infection. He is not scheduled to go back for four weeks - yay, with a weight check in 2 weeks on infusion day, April 8.

Keystone Day 3

Bridge to the village

Ok, so day #3. We slept in again, and took our boots down to get adjusted again once the guy said he'd be coming in at 11. Then we had lunch while we waited on the adjustments. But in between that we had to make a stop at the little grocery store for BENADRYL because what I haven't said yet is that for the past few days I'd been enduring an itchy skin rash. Over Thursday evening and Friday morning, however, it spread like wildfire from head to toe and the itch was extremely intense!! It was as if the itch was actually under my skin, so rubbing/scratching the skin still didn't even bring temporary relief. 

The village

I took the Benadryl right away to get it in my system ASAP. After lunch Rob went to ski some more challenging runs that I wasn't going to do anyway while I took the shuttle up to the medical center and saw a doctor. I will spare you the photos of the rash. At this point it was visible on my ears and on my forehead, but the worst parts were my torso, back, and feet. It looked horrible and I thought for sure my skin would be scarred. The doctor told me to keep on taking the Benadryl and the steroids would make me more comfortable in about 24 hours. After dealing with all that, I had no desire to do any more skiing, so we relaxed for the remainder of the day. 

But we enjoyed our last day of rest and had great food that night!

I had Alaskan halibut

And Rob tried elk for the first time

As promised, the steroids did their job and the itch completely stopped. By the time we made it home late Saturday night the spots were almost gone. Amazing. I took the pills, tapering off for 7 days. The doctor there chalked it up to uticaria, but one doctor here at home said it could've been a virus since it came on slowly and not suddenly like an allergy would. I pray it never happens again.

They adjusted our boots one more time before we left the next day. The adjustments have to be made a tiny little bit at a time, so this is evidently a common thing, having to go back to the shop again. But they are devoted to getting it right at Surefoot, as many times as it takes. So, most of our time there ended up being spent right in the boot shop. And I didn't even get a picture of it!! But I think it will be worth it next time we go skiing. The shop is franchised and the boots are guaranteed so we don't have to pay for adjustments, ever. Another skiier told us that the warming bags they sell are great. You put the boots the bag and plug in the bag, and it heats your boots all night. In the morning, the hard plastic and foam becomes soft and pliable, and your foot supposedly slides right in comfortably. We hope to try again next season!

Goodbye, Colorado!

Keystone Day 2

There was a Surefoot store there in the village, so we decided to have the custom boots made. WOW what a painful experience that was! First of all, our feet were already hurting pretty bad because of the run we had just done on rental boots. It's interesting how these are custom made.

First they measure your foot all kinds of different ways with different high-tech machines that record how you put pressure on your foot. Then they make an orthotic (corrective shoe inserts) for your foot. For mine they had to build up the insoles since I have such a high arch. 

This is the guy putting tape on Rob's feet and getting them ready for the boots. His face sort of says it all.

Here he is getting my feet ready for the boot. There was significant padding already put around my bunions, that's why my sock is poking out so much on the side.

Then they put the boots on you with tubes connected that go inside the boot shell (but outside where your foot is).

After that you have to stand on the swivel pedestal contraption. The handlebars are not just there to keep balance. At several different points you have to pull down really hard for 30 seconds or so. It hurts really bad, so you're actually having to add to your own pain.

The way the boots come is just a shell. Not much padding - this is so they can put the padding where you need it for your particular foot. The squeeze bottle in the middle of my feet is actually liquid foam. It shoots up through the tubes and into the boot. This is where it gets tight and painful. It molds around your calf, ankle, and toes. And this is where you have to push down until it "sets" and gets hard. You have to stand there for several minutes with that painful pressure.

This whole process took a few hours. We had lunch, then hit the slopes again. We knew the boots had to be broken in and therefore would still be pretty tight, and might need more adjustments, but they were SO tight and painful that I was having to stop every few minutes to try and relieve the pain. We were still only on a green slope! But the even the green slopes are obviously a lot steeper out in Colorado compared to the slopes in West Virginia. You are forced to ski a lot more athletically - there is no just being lazy or sitting back a bit (the way I like to do!)

By that time the sun had set and we were night skiing. I kept trying to make it, although I was crying the whole time and my feet were in terrible pain. Rob said he could hear me the whole time even though we weren't skiing very closely. He kept asking me if I could make it, and I really wanted to. I tried to. But I didn't know if I could make it, because I didn't really know how far it was. We finally stopped at a phone and I just collapsed while Rob called the ski patrol. I was just crying and crying. It hurt, but I also felt bad.

When the ski patrol girl got there she helped me get the boots off. It was tough to do. But we got it done, and the she skied me down to the bottom pulling me on a sled! She told me to cover my face as much as possible because the snow kicks up high. She was right about that! I had goggles but had to try to cover my face with my coat. She was going pretty fast and it still took awhile, so at that point I knew there is no way I could've made it. I was so glad we called!

I walked back to the lodge in sock feet. I didn't care how cold it was, I was just glad to have those boots off! Rob's feet were hurting pretty badly as well. We got into the hot tub for awhile. It was neat because snow was falling fairly heavily from the black sky while we were in soaking in the tub. When we felt ready, we went down to the village for dinner. The guy that fit us happened to be in the same restaurant so we told him about our problems. He said it should not have been that bad, and told us to bring the boots into the shop the next day. The dinner was at a restaurant called Kickapoo, and it was great food. Certainly hit the spot after all that ordeal! Although it wasn't funny at all at the time, I can't tell the story to anyone without laughing!

Even if I can't ski in them, I will still look great because these are some really pretty ski boots! Hopefully I'll be able to sport them next winter.

Keystone Day 1

Despite the inspiration, fun, education, and updates on what's happening in the company, it can be a tiring few days attending Seminar. The schedule is physically demanding and mentally taxing. That's why if Mom and Dad are able to stay a few extra days, we take advantage of it and go somewhere else for a few days to recuperate!

Ahhh, Colorado

This year we chose to go to Keystone Ski Resort. We had general session at Chick-fil-A Wednesday morning, had lunch, then brought our luggage down and rode a shuttle to the San Antonio airport. After a 2 hour flight to Denver and a 2 hour shuttle van ride, we made it to Keystone about 8:30pm. We slept in the next day (I think I talked to my mom around 10am and said we were heading to breakfast), got our rental boots and skis, then set off to conquer the mountain.

Just kidding. After only one run down the mountain on the green slopes (a 3 1/2 mile run), our rental boots were killing us! There was a Surefoot store there in the village, so we decided to have custom ski boots made in because we were thinking that they would instantly feel better and we'd be able to ski more comfortably. We had another think coming. Check in tomorrow for details on that "adventure"...

This was about the best photo I got from the top of the mountain since it was snowing that day

Happy 90th Birthday, Truett!

One last highlight of Seminar I will share is that this year Truett Cathy, the founder of Chick-fil-A, turned 90. What a wonderful life! He is quite a remarkable man, and has made such a difference in the lives of others. After all, can you imagine a world without Chick-fil-A?  :)

Truett and Jeanette with Rob and Dick (Rob's dad)

At seminar they had a birthday party for him, where several veteran operators got on stage and told him how much they appreciated what he had done for them over the years. Then we sang "Happy Birthday" and let all the balloons drop! The music began, and many danced to songs they played from each decade.

 Several weeks later on March 10, there was a black tie event to celebrate his 90 years of life. Rob and his dad were able to attend this celebration in Atlanta. Entertainment included Diana DeGarmo, Jeff Foxworthy and Michael W. Smith! Definitely a good time celebrating!