I didn’t mean for that to take such an emotional turn. Because at the same time that we are contemplating all those things for Philip, our hope is growing for Joyanna. We are within the month of a hopeful FDA approval. We made 3 medicine changes for her in the last 2 weeks and they have helped. We also had our consultation appointment with the neurosurgeon. She has definitely given the situation some thought and actually suggested an alternate procedure to accomplish the infusions. As of last week, we were expecting to have a shunt reservoir placed under the skin near her skull. Then she would be hooked to some kind of equipment to receive a 4-hour infusion every other week. The neurosurgeon suggested at the outset of our appointment that instead they contact the clinical trial doctor to see if an intrathecal infusion pump would be appropriate. This would be a pump surgically implanted under the skin similar to pumps used for pain or spasticity management. It would be implanted in the abdomen with a catheter running to the brain. This can be programmed and injected with the medicine every other week. In between infusions, it would run saline at a slow rate to keep it open. This would be more expensive at the outset (and harder to justify to insurance because it’s new) but would eliminate pricey equipment and extra staff/ time it seems. We quickly agreed that we were open to pursuing it. The infusion doctor was emailing the clinical trial doctor to get her input. The neurosurgeon doesn’t think she’ll need any scans besides maybe a CT scan and she can get that just before the surgery easily. Each piece of the puzzle that seems to be placed is a small new ray of hope. Please continue to pray with us that this will lead to deliverance for Joyanna. I know many of you want to know what you can do but there really is nothing right now except to pray, which is most important. We have seen our faith grow with our hands tied because we see that God is not limited! He’s working on our behalf.
I was able to sing this song at church last night and I love the chorus. It fits this situation perfectly. Hopefully, one day Joyanna can say this in the truest sense of the meaning.
By Your Grace and For Your Glory
By Your grace and for Your glory,
I am here to tell the story
Of all the doors You’ve opened for me
That I might give, I might love, I MIGHT LIVE
By Your grace and for Your glory.