After Gideon began having seizures several weeks ago, we started him on steroids with the hopes that if we treated his emerging adrenal insufficiency then we would see a decrease in his seizure activity. When that didn’t happen, we tried different doses. Then a couple of weeks ago we decided to start him on a CBD oil made by Charlotte’s Web. With that, we have seen some changes in his seizure activity. Instead of happening every day, we’ve noticed they tend to happen about every other day. Therefore, we are still working on finding the right dose of CBD oil with the hopes that will do the trick for his seizures.

Unfortunately, since the seizures began we’ve noticed more bruising on his legs. Gideon has always bruised like a peach, but not this much. Since he doesn’t walk or crawl, this excessive bruising seemed very unusual to us. At first we assumed he was just being rough with toys, but last week they looked so bad we decided to take him to the pediatrician.

The doctor said she was concerned that the bruising was due to low platelets. She did a Complete Blood Count (CBC) test and his results came back at 135K. (I was told normal for Gideon would be around 250K). Then yesterday we went back for a follow-up and his CBC results were at 107K. Because the numbers went down again the pediatrician referred us to a hematologist at Medical City Dallas. And that is where we went this morning.

We saw Dr. Goldman in the pediatric oncology department. (We absolutely LOVE him by the way!) He looked Gideon over and drew some blood for his own testing. His CBC results came back even lower at 82K; however, the test showed that there could have been an error due to platelet clumping. He told us that he had some more tests to run and that his office would get back with us as soon as they had his results. Needless to say, we are still waiting. I’m guessing we won’t know anything until next week.

Dr. Goldman did say he was encouraged because Gideon’s other numbers looked normal, which suggested to him that Gideon might be dealing with something called Thrombocytopenia. That’s a fancy word for low platelets and that’s pretty much all we know at this point. We aren’t entirely sure what is causing Gideon to have a low platelet count yet; hopefully we’ll know more by next week.

In the mean time, we aren’t getting caught up in the “what if” game. My husband loves to call me chicken little and remind me that we’ll cross any scary bridges if and when we get there. For now our little boy is happy and mostly healthy (given his terminal diagnosis).

If Gideon can be happy in the midst of all this, then I can as well.

https://www.youtube.com/watch?v=9ETnvyY1dRM

Rejoice in the Lord always. I will say it again: Rejoice!  Let your gentleness be evident to all. The Lord is near.  Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God.  And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. Philippians 4:4-8