I feel like we are going in the right direction and I’m so grateful. We met with Demi’s hematologist for the first time today and in one visit, the doctor was able to make this momma so happy with her plan! That’s a great feeling and I think somewhat hard to accomplish concerning my feelings…

We have been waiting for Demi’s labs to increase to resume her medication for nearly 4 weeks. To say I’m frustrated is the nicest way to put this. After contacting the physician in Chicago, we were leaning towards the idea that the medication was causing Demi’s labs to drop. And specially how the medication was…

Brandon and I have remained so optimistic in reference to Demi’s needs and future for the most part. Obviously there are many moments when I feel very overwhelmed and scared concerning all of this, but I truly hang on to the fact that nothing is impossible. The eye doctor told us that she would likely…

If you know much about me whether personally or from reading my blog, you will know I am extremely thorough. I’m certain to the point of annoyance too. I asked my mom the other day if I was hard to raise because I knew I was a sassy little thing! She said, “No. People would…

Chicago is home to a toxoplasmosis treatment center and some amazing doctors who have studied this illness for years and years. I reached out to the facility a few times for an appointment but I haven’t heard anything. I asked our infectious disease doctor about this at our second appointment (About 4 weeks ago) and…

I have been asked so many times, “How are YOU?” Often I don’t know how to answer this. I’m nervous to answer honestly sometimes. Usually I’m a little bit of everything I think. I’ll dive in to this in a bit but let’s do a quick rewind of my past almost 32 years. My first…

I have been working hard to get a schedule of some sort going for us and I feel like I’m finally getting somewhere. I’m a momma who likes her babies on a schedule. I guess it gives me a feeling of control, which I definitely desire. I also feel like Beau responds well to a…

Every week since Demi started the Medication regimen for CT we have been drawing a CBC with differential (complete blood count to tell us specific information on how she is doing). We have been watching her neutrophil (The cells that fight off germs) count drop each week and even changing her medications to hopefully stop…

It’s taken me a few days to process my own emotions about our appointment and Demi’s future. I have had to work very hard to “get my mind right.” I know some people may not understand that and may feel “oh just let yourself feel the way you want” and things of that nature. That’s…

Today is a big day. We meet with the eye surgeon from Houston to discuss Demi’s eyes. I’m not really sure what to expect to be honest. We have emailed a little back and forth but I’m still so unsure of what we can potentially offer us. So big prayers that either Demi’s vision is…