Headed Home

Demi did so well! When they took her to the OR she never woke up from her nap. They were able to sedate her from her nap so no crying or fear for her! The doctor was able to see what he wanted. He said that her eyes are definitely better than when we started,…

Demi is in the OR

Demi is in the back with her team. They will put her to sleep then give her an IV. She was sleeping in our room before she left. So she actually didn’t know she left us. Oh and Brandon was allowed back with me! About an hour in to waiting, I found out he was…

Back in Houston: EUA on Monday

We are in Houston! Demi had to be here today to have a covid test done prior to her procedure on Monday. It was a drive through and as much as she didn’t care for it, she was over it pretty quickly. She did amazing on the ride here! We are just keeping her busy…

Pregnancy and Infant Loss Day: Sawyer Grace

Today is Pregnancy and Infant Loss Day. I feel like I can’t let the day pass without saying something. I always share in hope that I can help just one person with their grief. Today Sawyer would be right over 5 and a half years old. How is that? How does that much time pass?…

Our Miracle Girl: Pig Tails and Ice Cream

Demi has been enjoying the cooler days and missing Beau while he is at school! Our last visit with her retinal surgeon went well! He is happy with the health of her eyes at this point. Her surgical eye is still looking strong, but vision in that eye is hard to understand. The retina is…

Our Gymnast: Wild Girl

Demi started gymnastics today! It took her a minute to warm up but she loved it!! I can’t wait for her to go back again!! She loved the trampoline just like she does at home! I really think this is going to be so much fun for her! We are headed to Beaumont tomorrow to…

Little Gymnast: Flipping Wild

We have been busy but happy! We are grateful we are all healthy and our home and community escaped the wrath of hurricane Laura. I have been and will continue to pray for those who have been affected. Demi has been experiencing some attachment difficulties lately in regards to me. Who can blame her? She…

Goodbye St. Jude: Neutropenia No More

Demi has been doing amazing since coming off of her toxo medication! I was hopeful and expected the best but still a little scared here and there. I always try to think positive and expect the best because that’s exactly what I was always told to do by my dad. It can be hard to…

Risk Vs Benefit: Right Eye

Demi has been doing well since coming off of her toxo medication! Her immune system is rebounding on its own, slowly, but in the right direction! We haven’t given her any shots since stopping toxo meds. She hasn’t been anemic either which is also great! She’s so happy and literally all over the place! She…

One Year of Meds Completed

Today is the day!! We waited an entire year to finish Demi’s toxo medications!! I’m so thrilled. This medication journey started out so rough, had some very difficult challenges with her immune system and now we are finally done with the meds that have been causing that! Her labs were low again today but since…