February 11th, 2010 | 
Author: Today was clinic for Ginger and it was a good day, because her lungs were clear. They upped her enzymes because she eats everything and went from the 75th percentile down to the 49th. We will be working hard to bring that back up. They did a throat culture so please keep the results of that in your prayers. This is how we know if any bad bacteria is growing in her lungs. They also did a CBC to check her iron. I asked if while they were doing the blood work if they would check her potassium because that was why we were in the hospital five months ago. It was really low and they had a hard time bringing it up. I do bananas twice a day everyday now, but still worry why that happened. They never knew why it was low. Well, they wouldn’t test that. The RN we have to deal with for EVERYTHING got really rude with me for asking and trying to tell her why I wanted it. Sometimes she is so nice but most of the time she’s just not that friendly and acts annoyed when we call or like our question is stupid. All the questions we had about the Verex drugs they didn’t know and some had never even heard of it!! They just acted like don’t really get you hopes up. The people you’re talking to online don’t even know if they’re on it… I left feeling really upset and hopeless. I think that is terrible! I feel like hope is so important in this fight and to douse it like that is mean. I have been so happy lately and really feeling like I can make a difference and a cure is on the way etc but left feeling like there was not much to fight for. I hate that feeling. We decided to go talk to people about selling the paper roses for a dollar because Derek said we are fighting for something and we aren’t giving up. He was right and I pulled myself out of my funk and we did really well. 8 business’ on State St in Redlands said yes. It was hard to say over and over, our daughter has Cystic Fibrosis and this is what it is… I had to tell Derek to stop saying the average age because I can’t hear it one more time. It’s too real and overwhelming for me. It was a bit of a hard day when it should have been happy. She is healthy and people want to help us. That is what I have to focus on.
My big girl holding her own nebbie
This is one of the fliers I made to tell what CF is for the business’ selling the paper roses for a dollar.
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Wow..this post brought me to tears. You are amazing Sarah. I felt sad reading that the nurse you are dealing with seems to be so jaded. In the long run though, its not a single nurse that is going to find a cure, it all comes down to all of the people who TRUELY care about the babies, children and adults with Cystic Fibrosis. It is people like you who make a difference Sarah. Parents that find the bravery to go from store to store, even though rejection is quite a reality, and ask them to sell these paper flowers so that your child can look to a healthy future. I have never known someone that has fought for their child like you are fighting for her every single day of your life. It amazes me when I see how much you are Derek fight so hard every day. God went above and beyond when he led Virginia to your loving arms.
Rosie, what a beautiful, beautiful response. These are my thoughts exactly; and you wrote it so well. Thank you.
I’m glad her appointment went great health wise! I am so sorry to hear about your experience with the nurse. Don’t let one negative person make you lose hope. She probably just goes unhappily to her job everyday and obviously doesn’t have her heart invested in these drugs or the cure because she doesn’t have a child that has CF. You are so strong and such a good mother. I can see that and I only know you from talking online for a week! Keep your head up. We can’t let anyone get us down. xo
…and I was sitting here thinking some more. You know what else?? I have learned with what I’ve been going through, that medical professionals aren’t always up to date on the newest research and information out there. That is why it really is up to US to keep up on information like that. You start to feel like you are an expert on it more than the actual nurses or doctors. You google and google and google information that could in some way help you or at least make you wiser. Knowledge is power, and as an obviously educated parent, maybe this is something you can bring to their attention and may give hope to others who attend that clinic.
I was searching for more information on this topic this morning when I came upon your really interesting blog post…thanks a ton for writing this. I will definitely be keeping an eye on your blog and coming back for more.By the way how long have you been keeping a blog?
The enemy is out there to rob you of your hope and joy. BUT, thankfully, God reminds you of His plan for Virginia. What is this nurses opinion compared to God’s. The information she recevies on CF is only what is fed to her. She takes no time or effort to be up on the recent development twards CF’s cure because it holds no matter to her. Well it matters to us. You are seeking, praying and fighting for your cure and it is those who fight who will make this cure a reality. And when that day comes that nurse will feel ashamed for the defeat she brought to fighting mommies. Hold you head up high, new drugs are being developed to cure CF and you are keeping your babies lungs clear, that is a reason to rejoice!!!
love and prayers, nicole
Hi there! Many prayers for you and Ginger.
I’d love to know more about the paper roses for business.
My sister found out that Sierra and Maddie have the more common gene mutation with CF. And that they both carry the same one. (We’re like you, no history in either side of the family we know of.)
I put your walk information on the blog I’m doing with my family for the girl’s, with a bit of info on you guys. If you have a moment take a look. I would like permission to post a picture of her. (Although if you’d prefer, since it’s not your blog, I can remove any mention of her.)