Four and a half years ago…. hard to believe so much time has passed. That’s the day I held our first born in my arms as her soul was already in heaven. I don’t have much to say tonight and I’m writing this on a whim. Not one day passes that I don’t think of…

Let’s talk specific prayers for Demi. I think in order to explain that you first need to understand her eye and the point of the surgery. In Demi’s left eye there is scar tissue through the center of her eye (central vision) that connects to the front (lens) and the back (retina) of the eye….

Today was Demi’s pre-op appointment with her retinal surgeon. It was the usual.. 10.5 hours there and back, eye drops, ultrasound of the eyes and then the exam, with crying throughout. Sweet girl doesn’t cry for long though. She is so tough. The doctor said nothing has changed for her eyes and even though we…

I was talking with a friend the other day in depth about Demi and her needs. In that conversation a light bulb went off. I even told her how that conversation helped me realize so much about myself and Demi. I didn’t see it coming, it just happened. God puts people in your life for…

Sometimes I wonder how Demi’s care would be handled if I sat back and waited for everything? I would like to assume her physicians would all do great but no way in crap I’ll ever wait on anyone. So I’ll continue to be the annoying mom! It is what it is! Demi’s labs are doing…

Last week I missed Demi’s Neurologist appointment. It just simply slipped my mind the day of. I knew about it, it was on the calendar, I talked about it multiple times yet somehow I forgot!! I also missed one dose of medicine the following day as well as almost give Demi and injection on the…

I finally feel like we have a grip on Demi’s labs and I’m extremely happy and grateful for her hematologist!! This week we gave her an injection Sunday, ran her labs Monday and then again Thursday prior to the next injection. This allowed us to see her high and low! Her high level was a…

Demi has been able to restart her toxo meds and has been on them for one week now. On Tuesday we were told she had a significant drop in her neutrophils yet again. I’m a bit frustrated, concerned and still somehow optimistic. I have the utmost faith in Demi’s hematologist. I will continue giving Demi…

We received word last night that we would restart Demi’s medication as soon as possible. This is great news! I’m so happy! It was about 6pm when I received the email and it wasn’t until about 1:30 today that I got clarification that the prescription was sent to the pharmacy we are using. After I…

Praise Jesus! We have good news! Demi’s body has responded to her first injection on Friday! She got another injection just now. I gave it to her and Brandon helped. That was not very fun but she actually did well! She will get another injection on Wednesday and then repeat labs on Thursday! If her…