Sure, the visit tired him out, but being in the morning -- when he has the most energy -- helped out a lot. He wasn't as dead-tired for the rest of day like the first visit. Praise God for these blessings!
As far as the medical side of things, Daniel needed another dose of the pamidronate for the hypercalcemia, but hasn't needed another transfusion, despite several small bleeds. He did need a new lancing today on the other side of his throat. It seems the area is still swelling larger very slowly. This is discouraging, but God knows what is going on on the tiniest molecular level. We choose to trust Him!
We had a particularly meaningful conversation with Daniel's nurse yesterday evening. I've spoken with her before at length about Daniel's care and treatment plan, what with all of its unconventionality. She was adamant that everyone who has a g-tube should be on what Daniel is eating, and everyone in general should be given fresh food, not canned and processed remnants. That's when they need the best food the most, she said.
She said in her 14 years as a nurse, she has never seen someone like Daniel and I take responsibility and advocate for ourselves. No, our plan certainly does not come cheap, but by God's grace and amazing provision, we have no worries right now. And the nurse said how much better Daniel is doing than others on the ward who don't have such a serious condition, and who won't or can't walk because of the pharmaceutical pain meds and lack of nutritious food.
I'm not casting blame here -- please don't misunderstand me; all I'm saying is that the healthcare system, when it really comes down to it, is all about economics. The individuals, however, the doctors and nurses, etc., are the wonderful personal side of that system. They do their jobs amazingly, by and large. And we are so very thankful to have universal healthcare and not have to pay a fortune for all of the care Daniel needs. But the underlying bureaucracy is the impersonal numbers game.
That's why you'll never see the things Daniel and I are using covered by medical. We spend over $100 a day on his meds, food, and supplements. I hate having to spend that kind of money (as we're both so frugal) but it's so very worth it -- look how well he's otherwise doing. I told the nurse that we have been so blessed by God through friends, family, and strangers, and are striving to be diligent with the wisdom and funds God has given us to make the best choices. The results, I said, are up to God, because the point of life isn't to be happy and healthy, necessarily, but to bring glory to God. And that is what we're trying to do.
The nurse started to get choked up when she reflected on how Daniel's situation is affecting the nurses. Given our situation, our young age and young kids, and the severity of Daniel's illness, it's hard on them, though she said, granted it's nowhere near the same intensity as it is for us. But we got a window into what God is doing in the care team. Please pray that God's purposes would be seen in those individuals who do all of the work to care for Daniel day by day. We only have this ministry opportunity because Daniel is so sick.
Our prayer is that God would display His power in an amazing, unmistakeable, miraculous way by healing Daniel, and in doing so would confront the individuals on the care team with His existence and His claim on their lives too; building the faith of those who know Him already, and breaking down barriers built by those who don't truly know God.
We are thankful for what we see God doing in our own lives and in others. That gives us joy despite all of the pain. All the same, we cry out to God that He would finish with His purposes in this season soon and bring healing and restoration. Please continue to join with us in prayer. Thank you so much.
May God be glorified.
Hi Evelyn, I am so incredibly in awe of you two. How you see Gods work in all of this is just amazing. We as a family moved to Alberta a year and a half ago and you are always in our prayers. We have a family in our church who is in similar situation as you two are just a couple of years ahead of you guys. I see also how God is using this in her family to further his kingdom, my friends grace and ultimate faith in God has brought them through many storms and continues to keep them wrapped in his arms. I pray for you all to feel Gods loving presence and being wrapped in his arms and sense of comfort and peace.
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