Good evening/morning wherever/whenever you are when you're reading this!
Well, we went to the lab to get Bella's blood drawn this morning to find out if her version of DEB is Dominant or Recessive. The test costs (somebody) $6,000.00 and will take 12 WEEKS to come back. I say (somebody) because while we like to think that everything is covered by insurance, we know that this is not always the case. So, with every new bill, we just wait to find out how it all gets ironed out. For example, the Clinical Psychologist in the NICU met with me for 1 hour, then dropped by one day for about 10 minutes, then we chatted one other time in the hallway for about 10 minutes. The bill? $3,900.00. I still can't figure that one out. I wouldn't blame our insurance if they didn't cover such a ridiculous fee!
Okay, okay, sorry for the venting.
Wanna hear just how STRONG Bella is? Guess how many of us it took to hold her down to draw her blood...guess...guess...
5
Yeah, there were 10 HANDS on her. She was practically levitating off the table. Luckily, the phlebotomist got it on the first stick, so it really didn't go that bad...oh, and that was in the morning when Bella sleeps, and she was sedated with Tylenol with Codeine.
Tough kid!
Other news...
Unfortunately, Bella has broken out with a strange rash on her face and torso that is turning into what look like hundreds of tiny blisters. And yet, her demeanor continues to improve. This disease is so confounding. We can't figure out what we did wrong to cause this breakout. We are just left with the fact that this disease, once again, is NOT IN OUR CONTROL. It is SO HARD as parents to be with that. We just want to overpower anything that comes her way with love, nurturing, and smart, informed care. Yet, even with all that, this thing will run its own course, and I realized that just because I surrendered to EB a few weeks ago, I have to continually surrender to it. That has been tiring lately.
Thank you all for your continued prayers and support. Again, we are maxed out physically, emotionally, mentally, and spiritually right now, and just don't have the strength at the end or beginning of the day to generate the intentions we would, so you are doing that for us and we thank you. We also realize that by caring for Bella in the hands-on way that we are IS generating the best for her...it just never feels like enough, ya know?
May God bless and keep each one of you today, and may God's abundance shower you with love and grace. In return, may you walk through today filled with love and gratitude for what you give and what you receive. If you keep love and gratitude in each moment today, not only will your day be increased, but mine will as well, knowing that you walk in the Light by doing so.
Good night.
