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.
