Last Day at NJH!

We had one more appointment at National Jewish before we headed out of town. The appointment wasn't until 2:30 so I decided to take Julia for a little fun! Before the fun came a little work...loading the car. Man, I missed Jeff right at this moment. And of course when I had the car 1/3 of the way loaded Julia announced she needed to go pee. Of course.

I just love driving around Denver. The mountains are so beautiful.

Yep, took this one just for Darryl.

And we made it! Julia had so much fun at the Aquarium in Houston that I took her to the one in Denver, they do have one different attraction....MERMAIDS!!

 

   

Playing in the bubbles waiting for The Aquarium to open.

So excited to see everything!

This was my favorite thing. It was amazing!!

You could see the little baby sharks moving in them!

You can't tell from this photo, but this guy was huge! So amazing!

And finally, the mermaid show!

Of course we had to feed the sting rays.

And get an airbrush tattoo.

And then we went and ate lunch where we got to see the mermaids one more time.

Julia waving while the mermaid is making a heart shape at her.

And of course we rode the carousel.

And played on the huge fish.

 

And before we left we got our photos taken with the mermaids.

And this is Julia finally discharged from NJH. Our last appointment proved to be very beneficial. Evidently Julia is low in a type of Iron that promotes sleep. They are going to start her on supplements and take more blood in 3 months to see how she is. They are hoping it really improves her energy level. Again, I am so glad that we went!

Julia made it about 10 minutes in the car before she zonked out.

And this is the photo of a kid who is so happy to be out of the car. I just wish we were home, not in Colby. Oh well, we will wrap up the trip tomorrow.

Again, I can't say thank you enough for all the support, prayers and love. It was an amazing journey and Julia and I are both better because of it.

Day Six at NJH

Today was a great day. We started the day with our meeting with all her docs. We talked about her diagnosis and her treatments, we were all very comfortable and decided that it was time for us to head to discharge of the day program! I was so excited. We do have an appointment tomorrow, but after that we are heading home.

In a nutshell, here were our original goals, along with what we ended up with.

1. Make Julia's quality of life the best it can be by:
    

- Understanding her allergies (both food and environmental) and coming up with a plan

They have determined that Julia's peanut allergy is severe. She does have a contact reaction if she is exposed. For school her classmates will need to wash their hands before entering class and out in public we need to make an effort to avoid exposure. It is good to know now that a contact exposure will not end in anaphylaxis, but it will make her uncomfortable and overall feeling yucky. If Julia were to eat a peanut it would be a life threatening situation. As far as her environmental allergies, we have some things we are going to change at the house to try and help her there, but mostly we are just going to avoid. The docs said that environmental allergies as themselves not life threatening, but because she does have asthma, if she was to have a mild reaction that involved her airways, it could end up in an emergency situation.

- Testing her immune system for any deficiencies

The doctors here have thoroughly tested her immune system and have found it to be functioning as well as any other child suffering from allergy disease. Some of the incidences we were worried about, they made a direct correlation to either her asthma or environmental allergies. They did tell me that kids that have asthma just get sick more and to brace myself for a long winter.

- Determining the severity of her asthma

The doctors did determine that she had asthma. I attended some education classes on it and I feel ready to handle it now. They do think that some of her tiredness and such can be related to the asthma.I was really glad that they were able to tell me one way or the other.

- Controlling her eczema 

I have never felt better about knowing what I need to do for Julia's skin. I have a plan to help keep her from itching and breaking out. I may not be able to prevent all her break outs, but I do know how to treat them now! We also learned that Julia has super sensitive skin. Any little thing and she is blotchy and read, which contributes to her skin trouble. You will be seeing the unicorn a lot at my house, so don't be startled if you come by!

2. Leave with her on as few as medications as possible.

I am now very confident and understand each medication we are giving her. I believe that each one is important and will increase her quality of life. That was my goal.

The things that I can't take with me are what I am going to miss the most. I enjoyed our support group meetings and talking to other moms. There isn't any other feeling than talking to someone who is walking in your shoes. I pray that these women find the answers that they need to move forward and that their beautiful kiddos are happy and healthy!

Her is my girl at art therapy.

And here is Julia and her doc. Notice her distance, I am not sure she trusts him...lol. But she did let him hold two of her horses, so he can't be all that bad.

To celebrate our dismissal we headed over to the zoo! On the way there Julia took a quick nap.

 We enjoyed seeing the polar bear as we don't have that exhibit at home!

There is this beautiful sculpture at the entrance of the zoo. We took the photo for Natalie because giraffes are her very favorite!

These next photos are just random sleeping ones. Most nights I found Julia in my bed, or at the end of her blow up bed trying to look into the hall to see the TV. Silly girl.

 

Tomorrow we are headed to the aquarium, our appointment and then to Colby, KS, where we are going to stay and then take out again in the morning! Thank you so much for all the prayers and support, this trip has been life changing.

Day Four at NJH

It was back to work for Julia today. This morning at 10:30 they applied a little bit of peanut butter to a gauze bandage and left it against her skin for 2 minutes.

Two minutes later we had this:

Yep, one big hive and a red mark. It evident that she does react when she comes into contact with the peanut protien.

10 minutes later we had this:

My cutie in the ER!

Now we were having a pretty bad skin reaction so we were sent to the ER part of the unit to be monitored to make sure nothing else happened. The hives started to go away on their own and we were released from the ER part.

At 12:45 we were eating lunch and Julia started scratching her arm. I mean really scratching. I lifted her shirt and saw that the hives were back and they didn't look happy.

So, it was back to the ER to be monitored for a while.

After all was said and done, the docs said that while she might be uncomfortable if she comes into contact with peanut butter or peanuts, it will not be life threatening. What they worry about with someone her age, is that they would come into contact and then touch their mouths or eyes and then she would have a life threatening situation. So, back to avoid, avoid, avoid.

After the contact test they did an inhaling test. They had her take 5 deep breaths of peanut butter and then she sat in a room with an open container of it for 5 minutes. They watched her for an hour. Her face turned a little pink, but she didn't have any significant reaction.

The docs said that when she is older she can sit next to someone eating PB and be fine, as long as she doesn't come into contact with it. They said that they would not recommend having her around peanuts that are being shelled. She is super sensitive to the protein and when a peanut is shelled it actually releases some protein in the air. So no Texas Roadhouse or Logans Steakhouse for us.

After a long day of testing, we headed back to the hotel. Julia fell asleep in the car so I sat in the parking lot for a while so she could catch a quick nap. After her nap we headed to park the car. The garage at our hotel has this lighted disc's above each spot. They are green and then when you pull into them they turn red. Julia loves to stand under them and watch them turn red. She wanted me to take a video of it changing, so I did, and here it is.

And we ended the night at dinner with my cousins. It was so great to see them!

 

We have our first and hopefully last meeting with our doc team tomorrow. I don't think there is much left to do. Hopefully we can head home sooner than we though!

Sunday Funday!

Julia and I headed off to Red Rock this morning with my cousin Shawn and her two girls, McKayla and Emma. It was raining of course, but we made the best of it!

On the way home Emma had had enough of being in the car and was letting us all know about it! Julia decided putting her jacket on her head was the best way to deal with it.

After our Red Rock adventure we decided to watch a movie that we got at American Girl. Julia thought her new horses needed a front row seat!

After the show we headed to another mall just to get out of the hotel for a while! We found somewhere to eat!

 Julia loves candles so I got her these three before dinner and she was so excited!

I got a surprise deliver to the hotel from my good friend's the Simmon's! It was so sweet!!

Julia has been sleeping on a blow up bed next to mine in the bedroom. I went to check on her tonight and this is what I found. All comfy in my bed, her water on the nightstand and everything. Now, the Mommy question do I try to move her or do I just sleep on the blowup bed!

We are supposed to be at the hospital at 9 tomorrow. I am hoping to learn about what the tests from last week mean and what we are doing now!