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

Denver Day 7

This pic is in the large park near downtown. It is from the area where the Museum and the zoo are located. Think of it like a smaller central Park. Love the snowy mountains in the background!

Well, today once again started out bright and early at the hospital. We got there a couple minutes before 8am and went straight to our room. We ordered breakfast for Bailey and got the bath process going. He did a bleach bath today to make sure any germs are gone and soaked for almost 45 minutes. After his soak, we got him all wrapped up and in the bed for 2 hours. While he was wrapped, I used that time to feed him breakfast and we worked on school. I was his hands for both, of course, and we managed to get all caught up for the upcoming week on his school (he got a day behind at the beginning of the week when we first got to the hospital).
After he was out of his wrap, I carried some of his laundry down and got it in the washer so we would have plenty for the next wraps of the day. His nurse came in to look at him and is pleased with his progress. She said we could skip the midday bath as long as he applied some lotion at the museum...this please him to have the whole afternoon. She also thinks there is a possibility of staying longer, but I will have to talk to the Dr. in the AM.
We headed out a little before lunch and went over to the Denver Museum of Nature and Science for the afternoon. We had a wonderful time looking through the museum. They have beautiful exhibits there. I took a ton of pictures (and so did Bailey), but the camera is in the trunk of the car.  Bailey refuses to let me go back down and get it. He is super sleepy and doesn't want to walk down there or stay alone in the room. I will post a few of our pictures on tomorrows post. :) Bailey said his favorite part was the dinosaurs and the mummies (even though they totally creeped him out).
For dinner, a Korean group of ladies came to the RMH and cooked a yummy supper. Bailey said that it was no where near as good as aunt Linli's food. I tried to explain that Korean and Chinese are a little different, but to him, Asian is all Chinese I think. ;) He said even Linli's rice is better. They were very sweet ladies and they made a spread. They had Korean beef, a vegetarian stir-fry with vermicelli noodles and veggies, a beautiful salad with a sesame dressing they made, and fruit. I appreciated a nice meal tonight. I feel like I have either skipped a lot of meals or eaten junk or granola the whole time. I think in the last week we might have had 2 really yummy meals.
After dinner, me and Bailey took a ride into downtown and I drove slow and let him take pictures of buildings and things he found interesting. Denver is such a different place, he found lots of things to take pictures of. We also found a couple of places that we would like to visit. They have a really nice aquarium that we hope we might can squeeze in maybe just an hour or two to try to visit one evening before they close, and we also heard about an area just outside of town near the mountains that has a natural hot springs. He is wanting to ask his dr. if we could go there one day. I told him we will see. We are starting to run out of time. We should leave on Saturday unless our dr. tells us we need more time tomorrow.
Overall, today was a great day. He laughed, played and danced around all day. He told me several times how good he felt and he was in a really good mood. Tonight when he laid down, there was no pacing the room, no crying and no needing massaging. This is a first this week. He is usually itching and hurting because of the wraps he has to sleep in. He says they itch his skin. I am guessing it is probably the strong meds inside that give him the itchy, painful feeling. Tonight, he actually fell asleep while I was typing this out. Watching him sleep makes me so happy. He is peaceful tonight and not in pain. I am so thankful to each and every person who has made this trip possible for us. I can never repay this gift. Even if we don't get everything we were (and still are) hoping for, know that you gave him hope and some ways of managing this horrible illness. That makes it worth it to me. I still pray that we get more answers and come away with clear skin and no more pain. On that note....I wish you all goodnight! Love and Hugs to everyone!

Denver Day 6

Today I was determined to squeeze in something fun. We went to the hospital first thing and checked in and did our first soak and wet wrap for 2 hours. While he was wrapped we worked on school work and then got him dressed to head to the Denver Zoo. It is really close (actually only a few blocks) from our hospital. So it really didn't take us but a minute to head over there. We had a blast. He did get a tad too hot in the sweat suit since it was 74 degrees, but his skin is about the texture of wet toilet paper when he gets out of the long wrap and it tears really easy. He likes the soft insides of the sweats because they don't rub his places and they look much better than cotton PJs. :) As soon as we were done at the zoo...he was ready for bath number 2 and some dinner. We found a nice place called Noodles and Co. where we were able to get him some gluten free noodles. We both enjoyed dinner and had a fun time together. We have been blessed with lots of bonding time.

We did go back to the hospital for soak number 3 and wet wraps a little while ago and I already have him in the bed and asleep.  Here are some the pics from the day. I am hoping tomorrow to take him to a museum or something fun again, since Monday all of the extra appointments will be mixed in to the soaks and wraps.

 

 

Bailey was our photographer today...All of the animal pics were taken by him, except the ones that he is in, of course.

He loved the monkeys..his favorite part was watching one poop in its hand...lol

He waited most of the day to get to the penguins...he wants to see if he can have one as a pet...lol.

The Hyena is Bailey's favorite thing at the zoo..he bought a stuffed one to take home. He named him "Denny".

Denver Day 5

Bailey finally got a halfway decent nights sleep last night. We put 400MG of Ibuprofen with the sleeping aid to help him rest and not hurt. They say when we sleep, our body heals, so they want him to have as much sleep as possible. This is how I found him when I got out of the shower this morning....Doesn't even look comfortable.

Most of today was all about the wet wraps. We didn't have any appts today other than the Dr and lots of wrapping. We worked on some school during the time we would normally be doing art, psychiatry, or classes. The Drs were very excited about his skin today, but they want to see him over the weekend instead of waiting until Monday. They said they would love to monitor him, so we will definitely go over early in the morning for first wrap, then they are letting me take him to the zoo until late afternoon. He is really excited about going to the zoo! We get in free thanks to the RMH...so that makes it even better if we can't make it to stay a long time. The only other major news today is they have him off of any milk (includes cheese, butter, etc.) He tested high in the prick test, the puddle test and his blood work. They said hold off until next week when we can do the food challenge to make sure. They want to quadruple check to make sure it doesn't flare his skin or cause any reactions. He was NOT excited about this at all. His diet is so limited and he has a hard time eating as it is. I told him to be patient. I think some of his food problems will be gone by next week. They seem pretty hopeful that they may can give him wheat next week. We shall see. Tonight we were spared from another meal off of the hospital tray or taco bell (what I have ate almost every night) and we went to Udi's over near the hospital. It was delicious and the have lots of gluten free options for him.

 Today they also let us go outside again after lunch as long as he was rubbed down with tons of cream. While we were outside, Bailey found a friend....or two.

It kept trying to get closer to him...lol

 Not too long after, another came to join in the fun. They were making me nervous. I could just see one jumping up on him.  :)

 He was in a really good mood, and let me snap a few pics of him...which is rare. Usually all I hear is "MOMMA! STOP!"

His hair is pretty crazy. He refuses to let me cut it at all. He wants it long. So I say, LET IT GO...I am not gonna stress anymore about it. One thing this visit has taught me is let go of those small things. It's really not important. Am I gonna still probably ask him every once in awhile if I can cut it??? Yea, probably so. ;)

He REALLY wanted his picture with this statue...for 3 reasons he said: 1 because its cool, 2 because of the sign behind it that says, "we never say never" (he finds that encouraging) and 3 because the entire family in the statue is naked and he found it incredibly funny. I spared you all by taking a shot from the "backside"...lol.....YOU ARE WELCOME!

Denver Day 4

We got a little more sleep last night after hours of pacing, massaging his legs, and holding him. He managed to stay in the wraps until around 1:30am. We woke a little earlier this morning and went straight to the hospital to get started on the days routine. This morning we met our new nurse for the next 3 days and we also met Dr. Naomi our other PA that job shares with Dr. Elizabeth. They came in to examine Bailey and get caught up on our visit and Bailey's progress. Dr. B came in while Bailey was in his first bath and examined him... and I cornered him about my visit with Dr. Abbott yesterday. He apologized for the confusion and said that they did talk yesterday and decided that what the immunologist told me was a little incorrect. He was hoping for that second opinion, but he said immunologists often want to get to the source without helping what is ailing the child. He feels there is no danger of a major heart condition because he had been in hospital several times, in and out of drs all his life and nothing ...that would be of concern. He said they could monitor his heart if it made them feel better. His pulmonology tests all look good and no signs of breathing issues other than his history with anaphylaxis. For now...they are going with nummular Dermatitis which is what his the biopsies at Vanderbilt concluded, but they didn't believe because it looks so different. He thinks it is much more severe due to his immune responses...he says your skin is your first defense against things your immune system can fight....if his immune system is going overboard, it could be causing a larger reaction with the skin barrier. This is not official yet, but this is his initial thoughts before all the tests come back. His hope is to repair the skin "barrier" and in turn decrease his immune responses.The last few days have been very painful for Bailey and we aren't so sure why. His skin is looking better, but he is hurting worse. Maybe from the healing or maybe not knowing how to feel good. They said kids with chronic pain can sometimes get confused when they start to feel better all of the sudden. He went with the Psychologist this afternoon and did some biofeedback exercises to cope with the pain and calm himself when he is hurting or anxious about the pain. She said she will continue these until he can master them over our stay. Art therapy brought lots more activities and movies for him to watch while he is wrapped and we went for a walk outside the hospital to get some sunlight and fresh air.

Later in the afternoon, Nurse Lauren came in and did his skin prick tests to environmental allergens and lots were positive allergies. Most we already knew. Much to his dismay, he is still allergic to cats (sorry Todd the cat, no chances of you coming inside...that is what he was hoping for). They said we need to really make sure everything is allergy proofed in our house. We have always done this, so this isn't new either. The only thing that we might need to work on is getting rid of carpet. They also got back blood work today from food tests that were done yesterday and said even though most of his pricks were negative, his blood result to milk was very high. They will be challenging this next week to see if it is a real allergy or a fake response due to the over-active immune system. He also will challenge peanuts and sesame seeds along with wheat.

Bailey working on art while his test is finishing

His back at the beginning of the test...some whelped up quickly

Nurse Lauren getting his test started while he played his DS

We finished our day with bath 2 and lots of meds and a trip to the prize closet for a new toy as a reward for all of his hard work. We came to the RMH for a couple of hours to work on some art projects and eat some dinner. We are packing up as I speak to run and do the night soak and wet wrap back at the hospital. Pray for sleeping meds to work tonight, sleep for both of us, and healing for his little body. Love and miss you all!!! (especially my Kirsten and Chris!!! <3>

Trip to the prize closet for a toy and $110 for helping with a study on kids with severe skin problems.