September 29: Day +89

It began with a little hug while off the circuit...

Which turned into this moment...

and ended up here... Upright. First time since July 4th.

Heaveno!

I won't string it along... I know this is the first thing you want to know...

IT WORKED!

GOD BE PRAISED!

A reader sent us this pic from their garden this summer...

Bella's blood pressure is ROCKING, and as of 9pm tonight, she is OFF PHENYLEPHRINE and her vasopressin is at .0003, the tiniest dose you can be on. We are a little fluid up for the day, but they have been pulling fluid all evening, and Bella's BP is GOING STRONG.

We don't expect pee since she is on continuous dialysis. Because it is always running, it doesn't give the kidneys the chance to kick into gear; basically, they are not needed. So, no pee yet, but that is okay. First things first. We really really REALLY wanted that blood pressure locked tight!

Folks, we may have just discovered "Fix-a-flat" for leaky vessels!

Having said all the above, part of me has not yet jumped for joy, because at one point today, Bella's blood pressure dropped way down during a nap, but came back and is rocking strong. We had good blood pressure over the weekend, then it went away yesterday, so I confess that I am afraid to get my hopes up too high. I am also just so phenomenally exhausted by this roller coaster of faith, strength, and endurance, that I just can't get too high or low in the face of anything along the way, otherwise, I would have worn myself out by now.

Angelique and I were talking on the way to pick up Ali tonight about the fact that we haven't cried tears of joy like many of you have. I know that I have cried only maybe once or twice since I came here. We confessed this to each other and talked about the fact that we just have to dampen our emotions a little in order to not get to up or down, so that we can keep moving, day in and day out. It is our responsibility to our family to "keep it together" through it all, so we take good care of ourselves and practice some serious emotional regulation and discipline, so that we remain strong for each other, and for our kids. So, our happy moments out exploring MN and measured, and our sadness, fear, frustration is also measured.

I want to make a point about the difference between regulation and repression. One is healthy and one is not. It is one thing to acknowledge feelings, it is another not to. On the other side of the coin, it is also one thing to acknowledge feelings, and another letting them dictate your actions. Feelings aren't reasons. They are just transient, ephemeral energy moving in and out of existence. So, we do not act on our feelings, and we don't let our feelings run the show. We pay attention to them, listen to them, process them, experience them, then release them. Stale air and water do not possess the same freshness as moving air and water. Feelings are the same way. So, we let them flow in, and we let them flow out.

Remember the phrase "This too shall pass?" The biggest mistake is only applying it when faced with a bad feeling. The second biggest mistake is thinking, "I hope things stay like this forever" when things are good. This is not pessimism, it is very much within the very basic laws of nature. Emotions are Energy in Motion ( E - Motion... I know you're smiling, mom, I got that from you!:) ) All energy exists in motion, and it can never be created or destroyed. This leaves the universe and everything in it in a state of "permanent impermanence." Practicing this impermanence, well THAT is what makes life worth getting up and playing, day in and day out.

Okay, okay, back to matters at hand. Sorry, but even we wonder how we are not only still standing at this point, but generating so powerfully in the face of everything our family has endured. Figured I would try to articulate a little of the "how," and if it makes sense to you, feel free to try it out in your own games of life! If not, just read on... I'll get back to Bella now! :)

When I walked through the door this morning, it was like the moment of truth. All the prayers were going to be either answered or not when I looked at that monitor and read Bella's blood pressure.

Well, no sooner than I open the door, and our nurse looks at me with DAGGERS in her eyes, and says, "Prisma is crashing. Like right now."

"Okay," I think to myself. I still haven't seen the monitor yet.

I turn into the room and look up at the monitor...

100's over 80's.

"Have you rinsed back yet?" I ask? When we switch the circuit, there is a large volume of blood in the tubes and filter... essentially "in the circuit." So, when we know we are changing out a circuit, we give back the blood in the circuit to help with Bella's blood pressure, hence "rinse back." When this happens, it causes Bella's blood pressure to surge for a little while because we have just crammed an extra volume of blood back into her internal circuit, thus increasing the pressure within it.

"No."

"That's all I needed to know." I respond, smiling at the monitor.

It worked.

I should really say THEY worked. The drug, combined with your avalanche of round the clock prayers, intentions, thoughts, wishes... ENERGY. Isn't it inspiring to see the two working in harmony? They DON'T have to be mutually exclusive!

We used to debate when we would have generous blood pressure, should we wean pressers or pull fluid? Well, we're pretty much out of pressers, so there isn't any debate anymore! Now the debate will be how much to test the waters to see how effective this drug was. Bella had generous pressures for 5 straight days... before we gave the drug... but we could only pull fluid at a tiny amount, and the day after we ended up negative 100+ for the day, her pressure tanked. What is the test to determine if this new drug worked at all, or any better than the sedation wean (and your prayers) over the past week? We sincerely want to know if it is the drug, because if it is, man, that DOUBLES the number of successful times this drug has been used in the pediatric BMT population, and may well open the door to more widespread use at the U of M... essentially the birthplace of BMT!

What service we would be if that was the case. What more can you ever ask for than to be of service to your fellow man and womenkind? Is there a better cause? Is there a more fundamental point to it all?

Not to me.

I have written about the following equation before:

E (Events in life) + R (your Response) = O (the Outcome)

E: Bella is born with EB

+

R: Live life to the fullest, and, in the process of trying to save our daughter's future from one of pain, suffering and an early death, she inspires thousands across the globe, is part of a study to find a cure for an incurable disease, and potentially unlocks a new treatment for a potentially fatal side effect in bone marrow transplantation that previously has not had an effective treatment for it.

=

O: Leave inspiration and healing in our wake. Go to sleep at night with no regrets, and a spirit of genuine gratitude.

Once you realize you have influence over any outcome you are facing, you are no longer a victim. No are not in control, either. That is the lesson I learned from Bella's birth. However, you are always the author of your response to anything life throws at you.

What story will you write?

Here's the one we're writing: "One day, Bella will look back and say, "Yeah, I was born with this rare skin condition, but when they brought me home from the hospital, it went away.""

God night.

Ali playing in the bounce house at RMH after dinner. If you are over the age of 10, don't play in a bounce house after dinner. Not a good idea. Just sayin'...

We received this in the mail today. Have you ever seen anything funnier?

We were treated to an absolute FEAST at RMH tonight! It was AMAZING! Thanks to all who helped make it happen!