Sunday, 10 April 2016

Good Days!

It's Sunday evening and it feels like the weekend should just be starting. Matt and I were saying the other day that the weekends feel like ten working days rolled up in to two days.... so much driving and running around that has to be done! I love doing it though because I know before I know it, these days will be over!
Update on Anna. She has had a really good last few days...yay! I get so excited when she gets to do normal things and feel half decent. It brings a sense of normalcy to our lives even if it is short lived. We spent Saturday at high street mall just walking around and enjoying the sunshine. She spent Saturday night with friends and is now visiting another friend at her house. Anna definitely takes full advantage of feeling well and enjoys her time as much as she can! She's a superstar!
If you read my last post, you know that Anna has not been well at all. It is very hard to watch and we are doing everything that we can to try and help her. One night last week, Anna was so sick. I went downstairs to check on her and she was laying on her bed. I crawled in beside her and asked how she was. She just mumbled an answer and closed her eyes. I asked her if she wanted a drink. She nodded her head so I went and got her her Gatorade. I passed it to her and she could not even lift her arms. She had no strength. I went back upstairs and got a straw. I held it to her mouth, lifted her head, and she took a few sips. She rolled over and her body jerked and trembled. I gave her a kiss on the forehead, hugged her, and left her to rest. I walked upstairs with tears running down my face. I want to take this illness. I want to be the one that has to suffer. I want to be the one that can't move. I just want to take it all away from her. I know I can't though, so I'll just keep researching and fighting for her.
You may know that I had called Children's Hospital and left a message to speak with her cardiologist. I heard back from someone Friday morning. I explained how sick Anna has been and how we really don't know what steps to take. Through my own research, I have heard that many people who suffer from this illness, receive saline IV treatment. Some people receive it weekly, bi-weekly, daily and some people actually have a port where there is a constant flow of saline.I told the person at Children's that this is an option that we want to try for Anna. It may not cure her, but it just might give her a better quality of life. I want to try anything that might help. The lady said that she would send the message to the Dr and get back to me this week. I am so anxious waiting for the call. I am hoping and praying that he is open to trying this treatment plan. I am so scared that he won't let Anna do this. I have read that some doctors are not comfortable trying things that may be outside of the box a bit. If he says no, I will have to keep trying and I will keep fighting until I find a Doctor who is ok with this. The IV treatment may not even work for Anna, but I will not stop until we have tried everything!