Bella's First Bath

Big Day today! Bella's first bath.

Boy, that didn't go so well, but more on that in a moment.

First, the day started out at the Doctor's office. Of all the diabolical things for Bella to have...she got a mad case of BABY ACNE. It started out as what we thought was a rash, but over the past 24 hours, her face just erupted and began to look REALLY bad. Her pediatrician, Dr. Bindra, took one look at it and said, "Yup, baby acne, and I can see it's gotten infected in several places on her face." He used the "I" word, and we shuddered. Infections are one of the big 3 killers of DEB kids, and we swore we'd keep her infection - clean. It just happened so fast. Bella beats her self up with her hands and scrapes up her face despite the round the clock gloves and socks we put on her. Yesterday evening, her hand snuck out of the glove while she was swaddled, and while she was in my arms, I watched her reach up and gouge a inch long gash in her right cheek. By the time I got my hand to hers, the damage was done. It is INSANE how little effort it takes to peel off her skin.

Anyhow, he wanted to put her on oral antibiotics, but we asked if we could treat it topically first; Dr. Dahr at CHOC warned us that we were in for the long haul with wounds, and to use antibiotics judiciously so as not to create a tolerance for them over time. Dr. Bindra was okay with that idea, but he wanted us to switch the type we're using at home to a little more potent topical ointment for this to catch it off guard. So, we started her on the antibiotic ointment as well as another topical scar treatment, and her face already looks like its getting back under control...a little.

Okay, so we figured the worst was over for the day (Bella screamed just about the whole time at the Dr.), but alas, we were wrong!

We had heard that bath time and wound care are the most stressful times for the EB family due to the pain involved for the patient. We have really been waiting to get the left leg fully closed and healed before attempting any such endeavor. Well, today was the day. We decided there's no way to do it but just do it, so we got prepared (or so we thought) and stripped Bella down. There was a really great moment before the bath began when we took all the bandages off both legs. Diaper was off, and the only dressings were on Bella's hands. To see her two legs in their entirety, and her feet with all those cute toes...oh it was AWESOME!

That happiness was short lived however when we put her in her cute little tub. The moment the warm water hit her skin, she started to kick and swing violently like she did back in the first days home from the hospital. I was holding her arms from beating her face and trying to keep her far enough from the bottom of the tub so she wouldn't kick the tub and Ang turned for a second to grab the warm water when it happened...

With one kick of the right heal, Bella scored a direct hit on her fragile left ankle and tore the skin right off it. She left a hole the size of a nickel, but that was just the tip of the iceberg, The trauma ruptured the skin all the way around the hole another 2 inches in diameter, and it began to fill with fluid, then drain through the wound, then fill with fluid, then drain. It was surreal to watch. As I tried to dab bacitracin on the wound before wrapping it, the bacitracin stuck to my finger and stuck to the loose skin around the wound, and as I pulled my hand upward, a giant section of skin just lifted right off her leg, showing how big the wound really was. It was one part open wound, one part giant blister. To put it in perspective, the wound would be about 6 inches in diameter running up the inside of my shin from my ankle. One kick. What's worse is it happened literally as I was saying, "We gotta isolate that leg before she..."

Again, it just happened so fast. I was brought back to the day where the boot came off on the changing table, and we were out of hands. Today was one of those days. I don't know HOW we got her out of the bath and cleaned up, but we did. Normally, Bella's screams and cries sound like anger, but today, we heard pain like never before. Even after, while asleep, every couple of minutes she let out a cry that just cut straight through.

It took 6 weeks of wound care to close that leg. Now we begin again.

On the bright side, we received a welcome care package from DebRA yesterday that had a host of different wound care products and cloth diapers, all different from what Leslie brought out to us! In it was a product that works 100 times better on her fingers than the one we've been using, so I am really excited and re-energized about healing those fingers. You just gotta take the good with the bad.

I am also reading Sean Stevenson's book called "Get off your 'But'. When I spoke to him, he told me to read the first chapter because it details what it was like for him and his parents dealing with OI (aka brittle bone disease). When he would break a bone, his parents had to immobilize him at the location of the accident for 6 weeks....not the location of the break...of the accident...which means that on Halloween when he was 9 and broke his FEMUR crawling around the corner in the living room, he literally spent the next 6 weeks in that spot on the living room floor healing.

THAT is adversity.

Yesterday, I played classical guitar for a patient of mine who I used to play native american flute for when she would come in and receive her chemotherapy at the outpatient cancer center at the hospital. She was referred to me for "end of life" treatment. I didn't realize it was her until I walked in the room. Her husband was in the room as well, as he always was in the past, but now they both looked so very sick, and just beaten. It had been since mid May since I had seen them, and what a turn for the worse life took them as well. Normally, her husband was strong, but yesterday, he was so tired, weak, and distraught. He cried while I played. My suffering was quieted in the presence of theirs.

I used to think that due to earlier life tragedies I have weathered, that I somehow had 'paid at the office' and was therefore entitled to live out the rest of my life suffering-free. I am humbled by the vastness of the sea of live we swim through. It is so broad, and I am so small. There is comfort in this humility, because if God can pour such endless support over such a tiny being like my daughter, than there truly is grace and peace available to every living creature on the planet. It is our job just to look for it. It's there. In the face of the next person we pass. In the vista of yesterday's summer sunset that I watched with Ali in my arms. In the card from a church member. In the OVER 400 messages of hope and love you all have left us on the Care Pages site, not to mention the separate emails, phone calls, and cards. With all this grace and peace around, it truly is a shame that people go through life missing it. I am blessed not to be one of those people.

I thank God for blessing me with Bella, Ang, and Ali, and I thank you for blessing us with your love.

God bless you.