Big Update: Believing in Miracles

We received word last night that we would restart Demi’s medication as soon as possible. This is great news! I’m so happy! It was about 6pm when I received the email and it wasn’t until about 1:30 today that I got clarification that the prescription was sent to the pharmacy we are using. After I made lots of phone calls and sent multiple emails, I was relieved to hear that!

I’m still working on getting our insurance to cover her medication. Until this point all meds are paid for at the cash price. Demi’s meds are all compound medication. This is typically very expensive. One of her meds is made by a powder instead of tablets and the doctor in Chicago raised some concerns with the powder. So I have been working hard to get Demi that medication made from tablets instead of powder. The problem is that the tablets are extremely expensive. The pharmacist told me today something like $2,000 and I’m not sure if that’s one week or one month. We have a wonderful team that is helping facilitate this whole process with insurance and I’m so blessed for their help because it is taking a lot of leg work. We also have a sponsorship through a wonderful foundation that is helping cover the cost of Demi’s meds. Demi is so fortunate for that. We would have paid whatever it cost to treat her but that helps a ton!

So hopefully tomorrow is the day we can restart her toxo treatment!!! We have another lab draw in the morning and we are hopeful that our plan doesn’t change! I should be able to pick up Demi’s meds tomorrow and we are super excited about this.

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We also met with her eye surgeon today. The good news is that her eyes haven’t changed. So they aren’t any worse. We are still on target for surgery in October! We are hopeful for wonderful results. Her doctor is confident in his skill but was sure to explain the risk. I’ll explain more on surgery as we get close but the process hasn’t changed since I explained in my previous blog in reference to surgery.

The wildest part of this is that Brandon and I both talked about the fact that we were both expecting the doctor to say “her eyes are totally healed and I can’t explain it!” So serious. We literally both believed that would happen! God is not done! Y’all hang on! I know more is coming!

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I’ll now be taking Demi in twice a week for labs, giving 4 doses of medication by mouth daily to Demi and administering injections as needed. We are working on home health but that is showing to be problematic with our insurance…. where is the eye roll emoji?…🙄 Home health would help decrease our trips to the lab. Demi is continuing with weekly in home visits of PT and OT as well as seeing a visual teacher.

We are praying Demi’s body responds well to the restart of her medication! We are praying that her team of doctors continue to manage her appropriately! We are praying for everyone to maintain good health in our house to give her the best chance to respond well to the meds!

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