Despite the Current Feeding Challenges, Bella is Sweeter Than Ever

ugh.

It's taking Bella over an hour to drink a bottle. Her mouth is sooo beat up inside right now. She either screams in pain, rejecting the bottle, or, if we put in the pacifier, she falls asleep instantly, and doesn't generate enough force to suck even through the Haberman nipple...supposedly the softest, easiest flow nipple out there. Please pray that her mouth heals enough for her to simply eat.

Second, we got our list of to-do's from University of Minnesota to get the ball rolling for the BMT clinical trial. It's quite a laundry list, but that's okay. It's gonna take a few days to get it all together. Starting Monday, I scale back to only 2 hours a week of direct service so all things Bella can take center stage.

However, the whole BMT eligibility hinges on whether or not Ali is a sibling match with Bella. Again, I can't see, given the Providence through this whole journey, how they couldn't be, but please focus your prayers on:

1) healing the mouth
2) perfect sibling match (think 10 out of 10)
3) more milk

Ang's milk continues to dry up despite trying every suggestion and supplement known to womankind. The only bright side is that we use pure alkaline water with the Nestle Good Start formula, so it's as good as a substitute could be, but it's really no substitute at all for the real thing.

Bless her heart, despite the current feeding challenges, Bella is sweeter than ever and pretty much sleeps through the night for the most part. She is in sleeping with Ali every night now, and we usually have to get up maybe once to re-wrap her or occasionally feed her, but it's getting better in the night time! YAY! Thank GOD for little victories!

If you are still here, just type a quick note letting us know. We have the feeling (which is both understandable and natural) that most have left this site. We're usually pretty strong, but today really sapped us. At one point, I watched as Bella's top lip lifted off her mouth and peeled away with the bottle as I was gently pulling it out during a scream. I don't care who you are, that leaves a mark.

Last thought should be a good one, so here goes: :)

Yesterday, when I was on the phone with Tim Krepski at U of M, he winced when he heard we had Cigna for insurance because they have had trouble getting Cigna to play nicely in this trial. Just a couple of weeks earlier, we found out the Ang's employer is switching from Cigna to Blue Cross Blue Shield during the next open enrollment. At first, we were scared, so much of Bella's care has been covered so well up to this point. How could BC/BS be any better? or so we thought. Tim said BC/BS works much better with U of M...who knew?

God, baby, God.

Good night and God bless.

My daughter has 100% POTENTIAL!!

Hi everyone!

Just some quick stories to share before bed:

Bella gets new blisters, and heals old ones.

Mommy and Daddy get better and better at dressing changes.

Nanny (my mom) is helping around the house and we're all still beat at the end of the day!

Ali is regressing on potty training...heard that might happen, but figured it would have happened closer to Bella's birth.

Tonight, we have to start making formula as a backup...sugar is the first ingredient in formula and Bella and Ang have been sugar free since week 2...not sure what effect that will have. Say a prayer that tomorrow, Ang's Doc calls back. There is a prescription Ang can take that will hopefully stimulate more breast milk production.

Ang has a sinus infection. Say a prayer for her immediate healing, please!

Mommy and Daddy got to see Coldplay live on Ang's birthday on Saturday night!

Tim was 22 rows up from seeing David Beckham and Ronaldinho on Sunday at the Galaxy v. AC Milan match!

Now for today's revelation:

I was talking to a friend who was remarking how impressive Sean Stephenson's story is and how nice it was for him to spend 45 minutes on the phone with me. My friend said, "It's amazing; he's this little guy in a wheelchair, but he's so powerful!"

Then, it hit me.

Sean Stephenson's power comes from his mind and his spirit, not his 3'2" frame, though that frame was the catalyst that led to him honing his mind and spirit into the powerful entity that it is today.

And, so, too, may it be with Bella.

All through my adult life, I have been honing my mind and spirit, because I believe that I leave my body behind, but not my consciousness. I figure it's an investment that will pay returns even after I die.

However, I have been relating to Bella like the quality of her life will be determined by her body.

NOT TRUE! I take responsibility for that fact that I made that up on my own. The quality of her life may be informed by her body, but it is not the source. That will come from within. Her source of quality will be her mind and spirit, and THOSE ARE PERFECT IN EVERY WAY AND IMPERVIOUS TO EB! She is free to create her life as powerfully as she chooses, despite what her skin says.

My daughter has 100% POTENTIAL!!!!!!!!!!!!!

Many times, I have thought about what Bella can't do, and have missed out on what she CAN DO! After all, Sean served in President Clinton's CABINET!!! Oh the things you will be able to do, sweet Bella! The world is truly your oyster!

Good stuff. Good stuff. God is good. ALL THE TIME.

Your homework today is the following:

SEE just one thing God has blessed you with specifically today. Once you recognize it, post it briefly on the message board for everyone else to read, then, you can come back later and read how God blesses us all with just what we need every day. Just remember, the blessings are already around you, you just need to believe they are in order to see them.

The Following is in reference to the Care Pages Site set up for Anabella:
Oh, and tell two friends to sign up to this page! We have 198 guests! Let's share Bella's story with 2 more to break 200! (who - me - counting?)

Also, for your computer-challenged friends, this site is maintained also at www.careforanabella.com. You can also hear music, link to youtube, and make a donation on that page if you feel moved to. Pass it on to those who you know can't get through the registration screen without getting frustrated or confused! (you know who they are!)

Good night and God bless you all.

Grandma's Ray of Sunshine

Has it been a week since the last post already? Was I really that traumatized by last Thursday? Were you?

Actually, things have been smooth since then for the most part, but we are as busy as ever. I am working a little part time right now, and while it's only 11 hours over 3 days, I feel like I'm working way more. Maybe because we are still sleeping way less?

My mom is in town for ten days helping out, which has been just great. She is the brightest ray of sunshine in any room. No matter what kind of day she is having, when you interact with her, you get nothing but genuine happiness to be with you. She is so present, and has such a JOY and zest for everything life has to offer. She is and has always been an amazing role model. She is teaching Ali to swim and helping straighten and organize the mess that is our house. Man, I love my mom.

Bella's acne is gone! No scabs on her face, save a few on her left ear. The baby acne actually did a number on her ear for some reason, but it is all healing, as it always does. She just has the most beautiful face. I am mesmerized by her beauty (when she's not screaming at me).

Her foot is healing well after "the bath episode." We are using a new product called Elasto-gel on it and we like the results. You wouldn't believe the extent of the damage, though. Frankly, it is a bit intimidating how much damage she did with one heel strike. She kicked the inside of her instep, and the wound extended all the way around to the bottom of the inside of the arch in one direction, and out to the 5th toe in the other direction. All the skin just sluffed off. She hasn't slept much in the past two days and we wonder if it is because of the discomfort from the wound going through its motions.

She still eats like a champ and is up to 3 oz per feed. Mommy has been struggling to keep up her milk supply, so would you please take 30 seconds and visualize an abundance of milk filling the fridge? I remind Ang that she has provided all the milk Bella has ever needed, but we have to dip into the reserves in the freezer almost daily right now, and I can see it must be stressful being responsible for feeding your daughter, but not feeling in control of how much milk you produce. As the guy, all I can do and stand beside and support her and encourage her to take her fenugreek (and eat her oatmeal in the am). Visualize milk, please! Thanks!

I recently purchased "The Secret" on audio CD. I owned the movie a few years ago and loaned it out permanently, then got the book as a graduation present, but who has time to read? So, while I'm driving, I get a good dose of inspiration and coaching. Like anything, there are parts that are just awesome, and parts that I find a little cheesy/fluffy (like the reason all overweight people are fat is because they think fat thoughts). There are two main points that have really helped this week: Thoughts are creative, so manage your thoughts. and Visualize what you want.

Here's my little "Secret Story for the week:"

I needed to pick up my mom at the airport on Tuesday night, but was running late. I live about 5 miles away from the freeway, and the street that gets me there is a busy, main drag full of lights. It can take 6 minutes or 12 minutes to get to the freeway depending on how you hit the traffic lights. I told my mom I would meet her at the baggage claim and really intended on keeping my word, so I visualized green lights all the way to the freeway...and got them! Then, I visualized me being there at the bottom of the escalator and saw my mom coming down the escalator in my mind's eye. Finally, I visualized the exact parking space at the airport that would be closest...I've been there enough times to know exactly where that is. I saw it waiting for me, so I could deliver on my intention. Well, at the last second, I made a wrong turn pulling into the airport and went up to the roof of the parking structure by accident. I found a good spot (not THE spot) and went down the stairs and walked into the terminal. I walked right up to where everyone waits, and didn't even have to count to TEN before I saw my mom coming down the escalator EXACTLY as I saw it my mind while in the car. The best part? As we were walking out to the elevator, I looked at the very parking spot I visualized...and it was vacant! I just laughed, and told my mom the story. I have caused parking spots to be available at airports before, but not in a while. It's been nice to get my mind focused again on CREATING life, not REACTING to it.

Last but not least, I want to take this opportunity to acknowledge I had a loss of faith for a little while. You may have noticed I stopped generating the vision I created for Bella's future. Truth be told, I gave up. However, after listening to The Secret and being reminded that every single thing in existence made by humans was first a thought, then a word, I realized that I have a choice. I can choose to continue to generate a miracle in the face of reason, or I can be reasonable and give in and take what I get.

I choose to generate a miracle by declaring that 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."

Please REJOICE in GRATITUDE with me that this miracle HAS ALREADY HAPPENED, and we are just simply waiting for time to catch up!

THANK YOU for participating in the miraculous healing of Bella! We are honored to be your partners in her transformation.

May God bless you with abundance in all things this very day. Good night!