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 do as a mom though. I find myself worried about all kinds of things and I just work through it. I have an inner dialogue with myself, I pray, I lean on my husband and all of that keeps me right. I think a lot of what we have experienced with Demi is because of what we expect. Some may call me silly for that, but I like the results so I’ll just keep on with this frame of mind!
Today we saw her hematologist for the last time! We loved her! She was amazing to us. She called me after hours more than once to discuss Demi’s lab values with me. She would listen to my opinion not just as a mom but as a nurse as well. I felt like she always heard what I had to say but I also respected her knowledge as she knows far more than I do.
St. Jude is where everything began for us and is an amazing, amazing place. I can’t think about how slow her diagnosis would have been without them! I’ll never forget our experience with them. While it’s been the most difficult part of the journey it’s also been a blessing.
We will not need to get lab work drawn on Demi for a few months and after that, likely not unless there is another reason. Demi’s neutrophil count is rebounding beautifully and she has still never had a fever or been ill at all. We are praying she continues to be healthy, especially since Beau is about to start school.
Demi is finally over some teething moodiness and she is so happy! I love this phase she is in right now! She is giggling so hard at Beau and just a mess!! She is whispering and it’s precious. The whispering cracks us up! She had an amazing OT session today and that’s always the best. Telehealth therapy is really not enjoyable for me. I’m so ready to have our therapist back in the house.