Sometimes I wonder how Demi’s care would be handled if I sat back and waited for everything? I would like to assume her physicians would all do great but no way in crap I’ll ever wait on anyone. So I’ll continue to be the annoying mom! It is what it is!
Demi’s labs are doing well. Her neutrophils look great and total white blood cell count look good. They are both a little higher at times than I would like but not in a severe range, so I’m happy. However, I still feel like we can do a little better.
Demi is due to refill her meds which means one month down back on meds and she is doing great!! I called our Infectious disease doc and left a message about refilling the meds… I was told by the nurse there are refills on them. This is correct, but these meds are weight dependent and an infant gains weight rapidly so they likely need to be adjusted for the next month. I have called the pharmacies that we use and prepped them for a refill coming and also let them know we will likely have a dose change. I’m praying my insurance moves quickly and we don’t have to submit more and more paperwork due to the dose increase.
I have spoken to our insurance company and they are aware that Demi’s dosage will continue to change for the next years. It took nearly 2 months to get her meds covered so I’m hoping each month and each dose change is easy. I know I mentioned it before, but Demi is the first patient to have an insurance plan other than Medicaid cover the tablet form of one of her meds and I believe it is due to the work of the pharmacist I have been dealing with! She is an angel!
Demi has a newly set appointment with her infectious disease doctor Thursday am for a weight check so we can adjust her dosage on her meds. Again, I think it’s because I called. Otherwise, I think our med refill would be the same as last month. It’s changes just the slightest bit, but with insurance and all, it seems easier to handle this before a refill instead of after.
I left a message with Demi’s hematologist about Demi’s labs being a little high and one of her oral meds that could potentially be decreased to help with that some. When we first started meds, Demi took that specific med 3 times a week and now it’s every day. I wonder if we backed off a little of that would help some. So I suggested it as a possibility. Demi’s hematologist and infectious disease doctor will have to discuss that to make a decision so I also plan to bring this up on Thursday.
My girl is so strong! She is doing amazing with therapy! She impresses me daily! I’m curious as to what her neurologist will say about her come next Monday. I just know that whatever any text book has to say about Demi’s future isn’t really necessarily how Demi will do. I firmly believe she is an outlier to all of the statistics thrown at us. I firmly believe she will do amazing things. I expect nothing but the very best of her! I just have a gut feeling that my girl is going to defy the odds. I love that feeling. I’m beyond confident in that. Likely in a way that may appear naive – as I have stated before. That’s faith! That’s believing in something more than what we are and what we can do! It’s believing in Gods will over Demi being something unimaginable! He can provide and I believe he will!