Requests

I actually think this may be a fairly short post. Not a whole lot has changed as far as knowledge on what we know is going on with Baylor, but we do have confidence in the direction God is leading us right now. The only thing is we are in a waiting period. Aren't those fun?

Where the update comes in is that we have two specific prayer requests for her and I will give you the Cliff's notes of why and it will explain what we need.

We received her results from all her labs and her doctor says he has never seen anyone with numbers as high as hers in his 30 years in practice in the viral category. So, we give a prescription for over a year that has been shown to greatly help the viral load she has. This in turn helps rid her body of the viruses that are being linked to psychological problems. Sounds straight forward enough. Super high titers (markers) are not good and really do a number on organs. Especially the brain and spine. Specific prayer request number one is for this prescription to help her in tremendous ways. We are waiting in anticipation of great things. He promises to give to those who ask (Matthew 7:7-11). It is just on His time table. So here we go, or wait, or whatever. Always moving forward in this marathon. We go from super high numbers to some super low numbers. Nothing like extremes.

Her labs for her immune system function are extremely low. So low that our doctor believes she needs infusions called IVIG. Bay is missing an immune protein in her blood that helps her fight illness and disease. This protein is missing in people with autoimmune diseases, cancer, HIV, MS, etc. She obviously has some but not nearly what she should have. This is why she is sick all of the time and I am super psycho about germs. Well, part of the reason I am psycho on germs. I am sure this is what opened her up to the PANS. And how she came upon a horrible immune system in the first place? That is a whole different blog post I will get to when the time is right. Anyway, she would have this infusion once a month and it would take quite a few hours. That sounds like a piece of cake but we know she needs it. Teensy problem. Our insurance is likely to deny because this is a $5k-$10k an infusion bill. She needs a year or two. We have the labs but insurance hates to pay. Surprised? I did not think so. There is specific prayer request number two. For now, just prayers for approval if it is God's will. We know that if He wills for her to have this it will happen. He listens to our prayers, make no mistake about it. His will is always going to happen but His means of getting there can change. There are lots of Biblical examples and if you want them, shoot me an email. Once we get approval we will pray for how to hold that baby still with a needle in her arm for three hours. Medical weed, maybe?! Haha. No, seriously. I have no idea how that would work. That request is for later.

Well, she is a happy love who is singing more and engaging more in school and therapy. She hates a change in school schedule and will straight up scream and lay out in the hallway if it is not to her plan. I love a strong spirit! I hate she needs it to be so strict. We are about to start a new church (well, our old one we love so much) and pray she handles this change! We have a long way to go in her healing but our Healer, Jehova Rapha is good. He is always good. Thank you for following her journey. To Him be the glory.

Thank you for your prayers. He'll answer. Just watch.

Team Baylor