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 being made and administered. We made a new plan and we were awaiting her labs to increase so we could resume with a better plan. I was hopeful that she would not drop again and we could get this medication in her body. I had the pharmacist on board and connected to the Chicago doctor so that the meds would be perfect and administered appropriately. We have worked hard to get Demi’s insurance to cover the meds as well, but that is still a work in progress.
Remember, the meds for toxoplasmosis are proven to help benefit these children if given in the first year of life. Demi is approaching 5 months of age and we have yet to restart her meds. It makes me ill to think about missing time. I can’t stand it. As mom, all I want to do is get these meds on board to give her better outcomes.
Our new problem is that her labs are dropping yet again and we haven’t even started treatment again. So what does this mean? I don’t know right now. I don’t have that answer, but of course actions have been taken to find out. I have contacted the Chicago doctor and Demi’s doctor in Baton Rouge has even left her a message as well. Demi’s doctor will speak with a hematologist about what we can do for Demi to get these labs up so we can resume her very, very important medications.
The Chicago doctor did mention some risks in the medication (often prescribed by a hematologist in this situation) needed to increase Demi’s labs. So we will have to discuss that risk further to determine what we will need to do. Which is why I urged Demi’s doctor to reach out to the Chicago doc concerning this specific part of the puzzle. I’m fully expecting to hear more by the end of the day today and plan to be sure to follow up before that time if not. Extremely persistent mom, remember? After all, Demi is not the typical neutropenic baby but has a very specific diagnosis as well so she can’t be treated just as all others would be but instead what is best for her considering all pieces of the puzzle.
At this current moment, everything is out of my hands. So I’m focusing on working with Demi on tummy time, what vision she does have, loving on her and spending time with Beau. Today we built a fort and played in there for a bit.
I’m praying that God knows exactly where we are and where we are going. I trust that he has wonderful plans for us. I know throughout Demi’s life there will be many moment like this one. Moments where I must lean on my faith alone because all other options are totally out of my control. Letting go of “control” because I don’t have any at this point and totally surrendering my plans to our Lord and believing in His plan.