Wednesday, April 30, 2014

Denver Day 9

 Treatment went well this morning and his skin is making more and more progress. Today we saw Dr. B again and Dr. Elizabeth and they both are happy with the progress. They said to keep up the good work and hopefully the redness will fade soon. As soon as everyone laid eyes on him, we started the first soak and wet wrap. I also used this time to work on school since he is all wrapped up and can't do much. :) The photographer came in today and made some pictures of his skin and said that she will come again on Friday to do the final ones. During the day today, Bailey also got to try to challenge his allergy to wheat. He has tested allergic several times and this time his reaction to the tests were small...but they wanted to challenge to see if it was a false positive. We agreed because opening up wheat for us would make life so much easier. We started by taking his vitals and having the kitchen send up a small slice of wheat bread and he took one bite. We waited 20 minutes and then they took his vitals and a breath tests to see how strong he could breathe. He passed with flying colors, so they had him finish the slice and wait another 20 minutes. Again, they took his vitals and repeated the breathing tests. PASSED AGAIN! After and hour they let him eat a plain donut to see if there were any reactions...we patiently waited and he was prepared for throwing up and nervous a little too. The nurse came in and said he was all clear and we waited an hour to make sure for any delayed reactions. He is still doing 2 long soaks, wet wraps and the strongest steroid ointment. They said when they see a total clearing, they will step him down to a lower medication. He is almost there. Some of his sores were so deep, they still have an open place about the size of a pin head. They said they should close soon. Around 4pm they let us leave for a few hours and we had reservations at the Downtown Aquarium. Bailey had a great time, but it was the tiniest aquarium I have ever been to. It took us only about 40 minutes from start to finish. Chattanooga had us spoiled. It was free for Ronald McDonald guests, however, so we enjoyed it!





The aquarium had a family of tigers..not sure why, but they were pretty.


this tank had nemo fish and dori fish :)


The floor had holes so the fish could swim under you!

After the aquarium, we went next door to Bailey's favorite kind of store....the REI store. He loves any outdoor places, so this is one place that was on his list of things to do. Denver is their "flag ship" store, so it was huge! 3 stories to be exact. We spent quite a while looking around.
After our purchase of a boomerang and some gummy bears....we went driving towards 16th street mall (which is a street closed off to traffic with lots of stores downtown) and found the Elitch Gardens Theme Park. He had found this online before we came, so it was neat to see it in person. Unfortunately, it was closed. Of course, we cracked a few National Lampoon's Jokes as we turned around in the empty parking lot.
Downtown is so busy and pretty hard to drive around. None of the roads are normal, they have weird turning lanes, and you share with the trains, buses and taxis. It is definitely an experience. (Bailey says scary too)


By the time we made our lap through downtown, it was time for dinner. He was craving the noodles we had from Noodles and Co. the other night, so we drove back towards Colfax Ave. He loves the Pasta Fresca with chicken and for $4.49....where else can you get a healthy dinner? We finished the night off by heading back to the hospital and taking a soaking bath and getting in his wet wrap for the night. We bundled up and headed back to the RMH for some sleep. It was a long, tiring day, but we had a great time. I have decided to do my writing at the hospital during the day, instead of staying up late at night at the RMH. It already feels like we aren't sleeping, we are waking up at the equivalent of 5am our time and staying up later is making it worse. I got an extra hour of sleep by writing this the next day :) I usually have a little extra time when he is in his first soak. For the next few days, that is probably what I will do. Have a great day!! Rejoice in what the Lord has made!
Until tomorrow........
Julie

Tuesday, April 29, 2014

Denver Day 8


Bailey and his new prize
Yesterday was a weird day here in Colorado. It was much cooler than the other days we have had here and nothing went like we were really expecting. We started off in our morning bath and wet wrap, did a little school work, saw the doctors and had our lunch. A little after lunch, Dr. B and Dr. Elizabeth came in to look at Bailey's skin and they were so happy with his skin, they decided he could have the day off until the bedtime soak and wrap. As a prize for doing so well over the weekend and being faithful to his wraps and his skin, they brought in some big prizes for Bailey to pick through. He picked a remote control car. He was so excited...he had to open it immediately and play awhile. 

Since we had the afternoon off, I let him choose what we did. He was dying to go to the Buffalo Bill museum and grave up at Lookout Moutain, so we took off in search of an adventure.
working our way out of town..bailey was snapping pics






We headed out on 70 towards the west and asceded into the mountains not too far out of town. We quickly found the exit onto the winding roads up into the hills and went to the Lookout Mountain overlook and Nature Center (which was closed on Monday...of course).

Working our way up into the MTNS



Nature Center at Lookout Mtn.














Homeschool moment..we have been talking about faulting, folding, layers, etc.








We looked around and snapped a few pictures from high atop the mountain, then wound around to the area where Buffalo Bill is buried. The spot for his grave is amazing, with views for miles from high atop the mountains. I can see why he requested that he be laid to rest there. It was amazing. Denver looked like just a little blot.









There at the gravesite is the museum and gift shop with café. We enjoyed some lunch in the café. They conveniently had veggie burgers and grilled chicken with plain ruffle chips. I think they must have known we were coming. We both finished it off while watching out the window with the most spectacular view. The gift shop there at the museum had Buffalo Bill hats and Bailey fell in love with them. He just had to have one of course.




















Checking out Buffalo Bill's gravesite
Buffalo Bill and his wife are buried under the rock


















This makes me laugh everytime















In the café we enjoyed lunch and a new hat :)





He had to hold the hat the whole time


still holding the hat!

















yep...still holding




The wind was about 60mph~yep...still holding














Playing with the camera
















Bailey took pics out his window as we drove into the Mtns



















After the lunch, we heard of a place with natural hot springs, so we took off to see if we could find them. They are in a tiny mining town of Idaho Springs.


Idaho Springs, CO gold mine
This was the cutest little town. Exactly what I imagine when I think of "old Colorado". The tiny main street and cute miner homes were adoreable. I snapped a few pics of the city hall, downtown, and the old gold mine. We also enjoyed the little visitors center that had a tiny museum inside of local artifacts. Lots of beautiful gems (and of course GOLD) have been found in the hills there.


Cute little main street in Idaho Springs
City Hall
Miner St. (notice the waterfall behind it)





























Just as we found the hot springs, which actually has a small hotel/motel built around it, we turned in and looked up into the mountains and snow was coming down! It was a little blizzard! Since we had traveled over 30 miles through the mountain, we decided it might be time to head back towards Denver before we were stuck for the night. Everything was covered in just a matter of minutes. Down in Denver it was only 54 degrees, but the mountains were around 34 and we weren't really that high up. I can't imagine if we had went into the "big" mountains.

We drove as fast as we could out of the mountains and made it back into Denver within just a few minutes. The snow followed us most of the way until we descended the mountain just outside of town. By this point, it was already supper time so we headed to the RMH to eat a little dinner.

A sweet group of people had made chili and veggie pizzas (using my favorite pampered chef recipe!) YUMM...it was good and we were able to go play outside on the play equipment before heading back to the hospital for our evening bath and wet wrap. It was a great day and we made lots of fun memories on our adventure.
Love to everyone! 
Julie
Playing at the RMH playground
Jumping on the hamburger








My silly man






















 

Monday, April 28, 2014

Day 7 Pics

Here are all the pictures from yesterday as promised. These are from the Denver Nature and Science Museum and of downtown. Most were taken by Bailey himself.  :)
 
 
 
 
 
 
 
He loved all of the animal exhibits
 
The wax people looked so real!
 
Bailey in front of some of the huge dinosaurs
 
You know he loves his penguins!
 
Bailey's library and archives!! LOL
 
We loved driving around last night looking at the buildings
 
This area downtown has a whole street blocked off for shopping. We hope to go back and look a little. They had an "I <3 cool.="" denver="" looks="" store="" td="" that="">
 
There are not a lot of churches. I can tell we aren't in the Bible belt. The ones that are here are beautiful though.
 
 
Starbucks!
 
 
 
 
 
 
He loved this Nightmare Before Christmas art in the alley
 
Sally!
 
 
This is a cool little diner. If his food tests come back where he can eat a little more normal, we may try this place.

Things are going well so far today. We are in a wet wrap, so I will post more tonight. :)



Julie