Our First Visit with Dr. Grant

We saw Dr. Grant, the GI specialist recommended to us from Dr. Metz, yesterday. He was worth the wait. We knew they had moved their schedule around to squeeze us in at the end of the day, so we were prepared to get comfy in our little exam room. He was awesome. Down to earth, frank, and very humble about the trials and tribulations EB parents endure in NICUs. He really got it. He is one of the senior gastrointerologists at CHOC, so he's seen quite a few EB babies in his day, so he was very familiar with everything from the start. It was SO NICE not having to educate him on ANYTHING!

He quelled some of our concerns about esophageal issues, and gave us a 7 step plan for dealing with Bella's reflux and gas issues. Bella is so irritable and crabby, that she is either sleeping or screaming, and that is wearing us out. It also puts her at risk for more blisters, because when she throws a fit, she bangs her hands, face, and legs and gives her self new blisters each day.

The 7 step plan allows us to add/drop out different treatments without having to see him in the office. We can just call in requests, and it will all be in Bella's chart. The guy was like a dream. Most of all, he spent a lot of time with us. We were his last appointment of the day, and he easily could have blown us off, but instead, he got really into her situation, and took his time talking about pros and cons of all different types of treatment options.

We feel a lot more comfortable having Dr. Grant in our treatment team.

Other good news...

Last Tuesday, Bella weighed in at 9 lbs. Yesterday, she weighed in at 9 lbs. 12 oz! She is 70th percentile in weight, which is HUGE, as malnutrition is one of the big three killers of RDEB babies.

Kelly, the home health nurse, called today to see if we needed her to come out and see Bella this week. Ang and I looked at each other and said, "No." Kelly was thrilled to hear that. She could tell that we have come a long way in a short time in terms of caring for Bella on our own.

Next Tuesday, Bella goes in for genetic testing. They will draw her blood (yikes) and then, if need be, they will do testing on Ang and I. We are still in the dark as to whether Bella has the dominant or recessive strain of dystrophic EB. Most likely, it's recessive, but we need to know one way or the other as it informs us as to the possible progression of her condition.

Meanwhile, our church continues to feed us, sending food every couple of days. We are so lucky to be surrounded by such abundance of love and support. I told my minister that I felt a little guilty receiving so much...we're used to being on the giving side, not the receiving side. Part of me feels like we should be able to feed ourselves...we're grown adults...but Dennis put me at ease real quick. He said, "That might be true, except that you deserve it." Then he just smiled at me, and that smile told me everything was okay.

We have been making dietary changes bit by bit, buying all kinds of mysterious things that we have never eaten/used before. Most of it has been strikingly good. There are a couple things that were misses, but for the most part, the transition is going slow and steady, and Ang has really charged ahead trying to cook and eat with new items every day. Today was my last day of 100% caffeine coffee. Tomorrow, I begin weening myself off by drinking half regular half decaf for about two weeks, then....oh man...decaf for two weeks, then....[shudder] off the coffee for good.

Thanks for all your encouragement/feedback/support as we rethink our lives to make the best environment possible for Bella. We know these changes will enhance all our lives ultimately, even if they seem a bit weird at first! We love you all and thank you again from the bottom of our hearts for sticking with us through this journey. Your love passes through us into Bella, and let me tell you, at 4:40 this morning as Bella was yelling at me while I did lap after lap with her in my arms on the stairs to try to calm her down...I needed every ounce of that love! :)

God bless.

What a first month!

Bella turns one month tomorrow. Whew. What a first month! I know the 1st birthday party is more for the parents...can we have a first month party for surviving this past month??? :) I foresee things getting easier in the immediate future, however. God willing, Bella will continue to be stable and relatively calm at home. Developmentally, she won't be doing too much in the next couple of months in terms of walking/crawling/eating/etc. so that should give us time to really get her healed and strong for when she is ready to become more physically active.

What a gift she is. I know that breakthroughs in health and vitality are on our doorstep because of our devotion to creating the optimal nurturing environment for such a fragile being. Dr. Young puts it simply. Think of a fish in a fish bowl. The health of that fish is greatly determined by the cleanliness of the water it lives in. Now think of your body as the fish. Your body is 70% water. Bella's is much higher...closer to 90% water. We (our cells, organs, tissue) live in our own fishbowl. If you don't keep the water clean, the fish's health suffers, right? Same with the fluid in our body. Sounds logical. Sounds simplistic even. Yet, ignorance is BLISS. As I continue to drink acidic beverages daily (soda, coffee) and eat foods my body is not designed to digest (animal protein, sugar, yeast), I wonder why I am exhausted by 3 pm every day, I have chronic pain, and get recurrent headaches, injuries, and soreness.

Thinking of Bella's optimal health has made me think of my own in a new way, and as I learn more each day about nutrition, I am saddened a little by what I am choosing to give up, but yet inspired to finally honor my body as it is designed. I see a healthy family full of vitality and strength: physical, emotional, and spiritual strength. That's worth making some changes for. My affirmation is, " I am restoring the structural integrity of my body, mind, and spirit."

For example, last night, we switched to cloth diapers. WOW, THEY ROCK! They are so vastly superior to disposable...I can't even imagine Bella (or us) suffering one more day in those awful plastic nightmares. Not only are the cloth diapers 100% softer, and more comfortable, Bella's butt looks better today than it has since she popped outta her mommy! No more lathering aquafor all over diapers and bottom every diaper change. No more blisters on her thighs from velcro. No more ripping out inner elastic waistbands 10 times a day. No more cutting oragami shapes outta the velcro closures so they won't cut her legs any more. That stuff was L-A-M-E.

So, I am heartened by this first lifestyle change going so well. I look forward to more of that.

Other news...

Yesterday, I had to pick my first fight for Bella. Nothing like trying to get an appointment to see a referral. The referral was for a GI Doc, an integral part of a DEB patient. The customer service rep who was handling the scheduling tried to explain to me that the Doctor was booked through August, and I would have to see another GI Doc, and that they were all the same. Bella could see one next week. If they are all the same, why is Dr. Grant booked through August and the others available next week? I wouldn't have it. I simply told the gal, "NO. That's NOT how this is going to go. You are going to figure out a way for my daughter to see Dr. Grant. period. " "Well, I'll have to get my supervisor on the line." She quips. "Fine with me." That was 25 minutes into the call. Within 5 minutes, the supervisor understood the situation, said she would email the Doc and see what she could do. She called back today to say they moved their entire Monday schedule up so Bella could get in at the end of the day. Yeah, this Monday.

Pick your battles, folks, and never let ANYONE sitting in a call center tell you how it's gonna go.

So, Monday we go to the GI to check out Bella's reflux issues. Reflux comes on early and often for DEB kids, and she has been having a lot of symptoms, so no time to waste. She doesn't need another day of reflux damaging her esophagus causing any unnecessary scarring.

Still other news...

I got in touch with a woman locally who heads an EB support group who invited us to an EBMRF picnic in Malibu this Sunday! EBMRF is the west coast version of DEBRA, which is based in New York. It's a hike, but it's being thrown by David Arquette and Courtney Cox, so...pack the minivan! We haven't made up our mind yet. Malibu is a hike from Orange and we haven't set out on a trek away from home for that long yet. We'll see. I think it would be cool to plug in...but I'm the networking junkie in the family.

Oh yeah, Bella sat through her dressing change today AWAKE for just about the whole thing! Her foot IS SO CLOSE TO BEING CLOSED!!! Aw man...it's such a victory. Anyhow, her being able to chill out awake was a good sign that since she pretty much has no open wounds, the dressing changes are not as painful for her as they were, say, two weeks ago, or even last week. C'mon, Bella! Heal, baby, heal! Heal, baby, Heal!

Okay. Time to go pass out. Bella is out cold after being up both of the past two nights. I can handle one-all nighter okay, but back to back...I'm not the night owl I once was. This rock star is in retirement!

Best to you all. Thanks for the continued love and support. It is a bit overwhelming...but we LOVE it and welcome the overwhelm! Thank you for contributing to us so generously with your prayers, intentions, thoughts, emails, cards, food, errands, and donations. I learn of a new church EVERY DAY that has added Bella to their prayer list. Literally from coast to coast, people are praying for our Bella. We are so touched and inspired by this. It gives us the strength to stand in the face of DEB and continue to proclaim...say it with me...

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."

May the unending abundance that is God's love be with each of you this weekend.