Thursday, December 31, 2009

Happy New Year!

Bella's first gift from Santa!

As we all look back on 2009, we can truly see a wide array of events that have occurred to all of us, either individually, as a community, as a nation, or as the planet. As we consider each event, we tend to assign a value to the event i.e. it was "good" or "bad". The news outlets are chock full of articles about "the best" and "the worst... of 2009." I guess some of those valuations could be "objective," (i.e. the stock market went up or down, Bella was born, etc.) or "subjective" (i.e. Bella's condition is a blessing / curse). I am grateful that we can assign those valuations ourselves.

I have seen so many miracles this year.
I have seen trials and tribulations, too.
But what I am most grateful for,
May be different from you.

You may or may not believe
that it's all up to you
either way, you're right
we know this is true.

We each have a choice
each day that we live
to see the good or the bad
to take or to give

We each have a choice
each day we're alive
to truly live
or merely survive

I saw birth and death
happiness, suffering
I saw some dreams come true
while others were vanishing

How do we make sense
out of all of this mess?
What kind kind of compass
Do we use to progress?

We each have a choice
each day that we live
to see the good or the bad
to take or to give

We each have a choice
each day we're alive
to truly live
or merely survive

What does the new year bring
more heartache and pain?
or more promise and hope
more loss or more gain?

Remember the three F's
Friends, Family and Faith
Inside of each you will find
just what you need

For when you are down
and the world's knocked you around
just reach out a hand
and believe in the sound

of the hand reaching back
it will always be there
in one form or another
to help, love, and care

but don't be surprised
if it's not who you think
that comes to your aid
when life makes you blink

just be grateful a hand
is in front of you now
take it with humility
and you will find how

to make it another day
to make it another way
to make it and say
Thank you

We each have a choice
each day that we live
to see the good or the bad
to take or to give

We each have a choice
each day we're alive
to truly live
or merely survive


Well, that just popped out. Sorry for the diversion. When it hits, just gotta flow with it.
Man, I am so grateful I've learned to let God flow whenever God knocks. HAHAHA... wait a minute. Let me rephrase that.

I am so grateful that sometimes I have the presence to listen WHEN God knocks.

Okay... now for the actual update already! Geeeeez....

We had our 7 month appointment with the Early Development Assessment Center on Tuesday. It was over 3 hours long, but it was totally awesome. We met with an RN, PT, SLT, SW, RD, and MD. (Registered Nurse, Physical Therapist, Speech and Language Therapist, Social Worker, Registered Dietician, and Neonatologist). They did a PT/OT/SLT assessment and here's where Bella is at:

Cognitive Skills = 6 months
Receptive Language Skills = 9 months
Expressive Language Skills = 8 months
Gross Motor Skills = 4 months, 10 days
Fine Motor Skills = 4 months, 10 days

Weight = 20 lbs
Height = 27"

The dietician was thrilled with where Bella has come since getting her G-Tube. Bella is 2% above the ideal weight for her height at her age. Remember those 90 minute wrestling matches - I mean bottle feeds - and only 20-24 ounces a day? well, she's been getting 30-36 ounces a day since early October and it brought her from 50th percentile to 75th percentile in weight for her age. The catch is that she is 95th percentile in height, so she needs to have more weight on HER than on a smaller framed kid the same age to be proportional. Factor in the constant need for extra calories for wound healing and the fact that if we do the BMT, we want her as healthy as possible going in, the dietician told us WE ARE RIGHT ON TRACK!!!

That was possibly the best news of the day. I am reminded of Dr. Eichenfield's quote from when we met with him in SD in October...

"The KEY to EB is nutrition, and the key to nutrition is the G-Tube"

Having to endure certain people's repeated questioning of the G-Tube use has frankly been tiring on us, so this validation was well needed and, as it turns out, well deserved.

The other results didn't really surprise us, either. The one stat that looks lower than it probably is is cognitive. The SLT explained that because of Bella's deficiency in fine motor skills, the assessment for cognitive is skewed because what they observe to measure cognitive development relies on use of fine motor skills.

We did learn that Bella has an overall weakness across her entire left side. We didn't realize this. Between the left leg and the placement of the G-Tube (which is placed to the left of midline in the abdomen), her left side has been injured and/or healing since day one (literally).

The cool thing was the PT gave us very specific ideas for exercises to address the global deficits as well as the hemispheric deficits. When the Regional Center PT came out, she was really intimidated by Bella's condition and really didn't offer too much. The PT at CHOC was at the other end of the spectrum, where she was thinking about what Bella could do instead of what she couldn't do.

Other news:

Ali pumping iron with mommy's new hand weights

Christmas was a blast, but perhaps the real holiday miracle was the following Sunday. We drove to my brother's in Phoenix for their baby's baptism. At the party afterward, we watched as his little girl, Liesel, and Bella played together while Paul and I held them. They were both born in May. Watch the video and cry, because this was a LOOOOOOOOONG time coming. My brother and I have had a tenuous relationship over the years (that was very diplomatically put), and for our families to come together like they did on Sunday, it was our Christmas Miracle. It was the type of thing that for many years, just seemed impossible. Cheers to you Paul and Heike, we love you, and Liesel is an angel we are honored to know and help nurture over the many years to come.

Christmas is really about celebrating new life, and with our two little girls sharing their first holiday together, the truest spirit of Christmas was fulfilled on that couch.

Now, what about 2010?

How do YOU say it will go?

After all, it's really up to YOU...

...and God.

Here's how to balance THAT all out:

Pray like it's all up to God, but work like it's all up to you.

YOU are in the work business, GOD is in the results business.

May 2010 bring you everything your heart desires,

The Ringgolds

Monday, December 21, 2009

Weekly Bella Update 122109

Hello everyone!

Ah, the simple things.

Bella has a cold.

It's almost cute.

It's n-o-r-m-a-l.

I keep thinking back to how easy we thought caring for Bella would be (when she was still in the womb), and how our real concern was how to handle Ali. Man, that seems like child's play compared to the hand we were dealt. Talk about a slice of humble pie.

Through the sniffles, and stuffy nose, through the blisters and bloodied closthes, Bella continues to smile and drool the moment after anyone makes eye contact with her. It's as if she forgets about her Self in the presence of another, and instead focuses all of her consciousness "over there" with the other person, rather than on her Self. How easy it would be for her to be Self centered, given her condition. Yet, she abandons Self and spends her time out in the world, full of wonder, full of mystery.

How refreshing to behold.

Her toughest times right now are while falling asleep. She goes through a strange ritual every time she falls asleep where it looks like she is wrestling sleep itself, hoping to keep if from "getting all over her." The way she swats at her head, bends, wiggles, and writhes in bed, you'd think sleep was like molasses, slowly poured over her, eventually encasing her in suspended animation.

This might be viewed with baffled wonder or even a little humorous delight, except during the process, she manages to inflict some serious damage on her head, particularly her right ear. The ear, or area directly behind it, seems to constantly be in some stage of bleeding/bloody/blistering/breaking down. This morning, her entire right shoulder and upper arm were caked with dried blood. The all white "onesie" that she was wearing was soaked and stained like, well, something out of hollywood. It was rough on the eyes, to say the least.

Further complicating the issue is her sweet little head cold, which prevents her from falling asleep with her favorite "binky" in her mouth. Her mouth is currently working double time handling breathing, so sucking on a binky is out. This is a blessing in disguise, though, because while the binky has been helpful, it has also been a crutch that ends up waking us throughout the night when it accidentally slips out. We are hoping that the cold will cure her of the binky dependence at bed time. In the meantime, we have to hold her limbs like a seizure victim until she fully succumbs to sleep. I am partial to doing this in her crib, because often times, when I hold her in my arms/ on my chest till she falls asleep, she awakens when I try to put her down in her crib, and then the whole process starts anew anyhow.

She also likes to dig her right heel into her left knee, and her left toes under her right heel (not at the same time). we think this is because the knee and foot are healing and must itch. The rhythmic writhing that ensues, however, is causing the left knee to stay open despite the amount of bandaging. It's a pickle.

Onto other happier news, we started introducing baby food to Bella. That's been going slowly, but we have had a couple of successful feeds. You should see Ang, Ali and I go crazy when she lets me put the spoon in her mouth... Bella must think we are off our rockers with how excited we get! Ali can barely contain herself from helping out. She is the best big sister ever! The one catch with Bella is that her hand bandages are going to be orange for a few weeks (at least while we feed her carrots and sweet potatoes). Last night, she grabbed the spoon and all of its orange baby food and just smiled as it soaked into the tubifast and rolled gauze. It was a funny moment. I realized that I forgot how messy baby food is for quite a while! Again, these are the fun problems to have. These are the ones we've been through, and know that everything will be okay in the end.
We thank God for the fun problems.

Are your problems fun?

Bet you never put fun and problems together before, huh?

Maybe, this Christmas, those 'problems' with Uncle this or in-law that might be fun after all.

That is my Christmas wish for you.

Merry Christmas, and thanks for still being here, almost 7 months later.


The Ringgolds

Monday, December 14, 2009

The Grind


I love spending 2 and a half hours with my baby, except when those 2 and a half hours are from 2-4:30 in the morning. Such was the start to the week. Riding the caffeine wave long and hard today.

The Good:

Bella, Ali, mommy, and daddy rode "Small World" ride at Disneyland last night! It was Bella's first ride! Her eyes were HUGE! It was really cute. We had a really good time last night. Ali has been really good with her manners of late and was rewarded with a long overdo trip to D-Land.

Regional Center brought a Physical Therapist out on Thursday to do an eval on Bella to see if she is at-risk and eligible for services. Turns out she is. I put it in the good column, because now she will get weekly PT to help get her the physical development she needs and is avoiding due to her leg and G-Tube button.

Despite it all, Bella continues to smile, laugh, and be mostly joyful (especially when medicated).

The Bad:

Bella's foot. 'nuff said. The knee isn't much better. They go through cycles. We had quite a run where the foot was good, and it was just the knee giving us trouble. Now it's both. By the end of last week, the skin had sloughed off the foot completely and it looked pretty much the way it did the day she was born. That was frustrating. The skin just won't "stick" on the foot and knee - where it was missing at birth.

Bella is going through a period where our normal late night soothing techniques are no longer working. Having to hold your infant gently down in her crib while she tires herself out from screaming so she doesn't further injure herself is NOT FUN. Holding her in our arms is just more dangerous when she struggles and harder to protect limbs and head during her screaming fits. In addition to being freakishly big, she is freakishly STRONG as well, and when she writhes in our arms, the possibility of her skin shearing against our body is very scary.

Plus, when she spits her binky into her crib, it's easier to retrieve than when she spits it onto the ground. Never overlook the small stuff, right? :)

We are booked for Minneapolis Jan 6-8 to consult with Dr. Wagner at U of M. We will know a lot more about 2010 after that trip. Now, we just need to convince the new insurance company it is in their best interest if we decide it's in Bella's. Another battle for another day.

Sunday, December 6, 2009

Well, it's Sunday and Bella's foot is going into a tough phase.

We opened her bandages Tuesday and found the largest blister we've ever seen on her. (See video). Through it all, she never made a peep that anything was hurting her. So, we drained it and wrapped it and expected it to start to bother her right away. Well, it took a couple of days for the hood of the blister to start to break down, and now it's really bothering her. We're looking at probably 4 weeks of pain before it heals completely.

We had been very lucky in that for quite some time we didn't need to medicate Bella for dressing changes. Time to reintroduce our friend Mr. Tylenol. We are grateful that she is not allergic to pain meds as our EB hero Sam is. I can't imagine what she's gone through. She is so strong. YOU are an inspiration, Sam! We installed a mobile over Bella's changing counter as well, and she LOVES it. We only wind it up when she gets upset, and you just wouldn't believe (or maybe by now you would) how fast the music returns a smile to her face. We also keep "You are My Sunshine" and "The Belly Button Song" (we like to call her Belly) on hand to sing to her whenever the smile turns south. Thanks to Grandma for getting her hooked on "you are my Sunshine!" She LOVES it!

Also, the other day we lost 3 fingernail/toenails in one dressing change! That was kind of sad. Bella's nails are swiftly falling off her toes, and she's lost her right thumbnail, and the left pinky nail is on its way out. That's kind of a bummer. We didn't expect her to lose them so quickly! We weren't even sure if she would lose them or not. We were hoping that she would go through the BMT (Bone Marrow Transplant) soon enough to avoid any permanent loss of any part of her body. Oh well, losing fingernails is pale in comparison to losing Bella.

Anyhow, Bella also LOVES the Rudolph the Red Nosed Reindeer doll we have. She wrestles with it and is fascinated by his glowing nose. When you squeeze Rudolph's left ear, his nose lights up and he says a couple of different samples. Bella's eyes get all wide and bright. It's sooo cute.

Bella's grip strength is improving as well, which is very encouraging. We keep the mittens off when playing with her as much as possible so she can get used to using them. She loves her little purple maraca and can grip it with both hands and slam it into her torso, thereby actually "playing it." It's really cute! (See Video)

Lastly, enjoy the first Holiday picture of the girls!

Monday, November 30, 2009

What Fresh New Hell is This? :P

The title of this post is taken from a cancer support group saying. It's their way of making light of yet another heavy situation.

What's our new heavy situation? Well, it's really not that heavy. In fact, it's quite...

...normal. God be praised.



Just when we thought we were on top of the EB (for now), along comes the normal developmental milestones!

Anyone sleeping out there through the night?

WE'RE NOT!!!! :)

It's allllllll goooooood. It's quite refreshing and a little bit cute and funny compared to the scary moments that have dominated the landscape these past 6 months. However, it does make for a crabbier-than-usual baby which creates more wounds on the face and head from temper tantrums. Combine that with the fact that the pacifier is the only way she will fall asleep, and if she's teething and mad, sucking on the binky has NOT been making her happy. We're thinking of keeping one in the fridge that's nice and cool when she really loses her cool. Hey EB parents, what successful strategies have you employed?

Outside of that, and the incessant drooling, life rocks. Nanny is making custom bibs so we don't have to change Bella 5 times a day. Man, the laundry is ALWAYS running between the diapers and blankets/clothing etc...

Thanks to Grandma and Grandpa for watching the girls so we could catch a Matinee yesterday! WEEEEE!!! New Moon was AWESOME (compared to Twilight). Seriously. I'm a sensitive guy so those movies aren't too really was about 90% pretty cool! Guys, don't fear Taylor's pecs! LOL

Okay. Gotta run. Thanks for being there!

Wednesday, November 25, 2009

Happy Thanksgiving

Okay, so much for regular posts. Sorry about that!

First things first...

Bella had her 6 month checkup yesterday. Her stats, you ask?

95% Height
75% Weight
97% Head Circumference

Our little bean is SPROUTING!

We are happy and grateful she is thriving so well despite the constant blistering and healing she goes through. We are so thankful for her feeding tube. Before the tube, she was 50% percentile in weight, which isn't necessarily bad, but the PROCESS of keeping her at 50% was GRUELING borderlining on torture for all involved. Now, she drinks when she wants, and if she's crabby or asleep, she gets the tube and all is well. The Doc has her starting on rice for 2-3 weeks, then we're on to pureed veggies.

We are a little dazed by the transition, because given how bad her mouth and throat were early on, we honestly never thought much about the chance of getting to spoon feed her orally. What a gift.

Despite the ongoing challenges with blisters, Bella wakes up every day BEAMING from ear to ear. Her radiant beauty and happiness and JOY make it all worth dealing with.

Daycare has actually been going well in November. In December we are going to scale both kids back to just one day a week, and I will take care of them the rest of the week. We are OUT OF ROOM in our condo and need to get into a house, and saving the HUGE monthly hit on daycare will almost equal our current mortgage payment! I will work from home developing products and services I can deliver from home instead of in front of a client/patient. More on that later.

Ali grows cuter every day and loves her dance class she is in on Saturday mornings. She likes to call Bella her "Cuteheart!" Get it? (cutie + sweetheart!) Too cute.

Mommy and daddy are wiped out from 6 months of sleep deprivation! We snuck away for our anniversary and spent the weekend at Disneyland without the kids. THANKS GRANDMA AND GRANDPA for watching the girls so we could be kids again!

We'll try to be better about posting more often. Thank you for being in our lives. We have SO MUCH to be thankful for this Thanksgiving, and you are a large part of that list!

Blessings to all.

Monday, November 2, 2009

More Good News

Enjoy a 2 minute montage of our family's journey so's a bit cropped so go see it on you tube (see link on right) for full version)

Okay, first good news...

Our new insurance provider covers all wound care supplies! WHEW. We have been extremely blessed in this area because both our current plan and new plan (2 different providers) cover wound care supplies 100%. This is NOT the case for MANY EB families. Many providers consider wound care supplies to be over-the-counter. Unbelievable.

Second, we went to see Dr. Kling, Bella's surgeon, today for our 3 week post-op check-up. We were happy to see her; SHE ROCKS. It was great to check in with her as well because Bella got a blister under her button, and there has been some discharge coming out from around the button as well. We were concerned about it, but Dr. Kling took one look at it and said it was fine, and within normal limits. She said it takes about 6 weeks for everything to heal and set. We will be back in 6 weeks to learn how to remove and replace the button ourselves. Apparently, there are several types, so as she grows, the original may not be the best fit, but it was a good start. Bella had a stitch removed while we were there as well. She did NOT dig that one bit.

Later today, grandma and grandpa came over to get trained on everything. GOD LOVE 'EM; they are watching the girls this weekend so mommy and daddy can sneak off to Disneyland for a long weekend to celebrate our 6 year anniversary! We've never been by ourselves, and we're staying in the Grand Californian Hotel right on the property, so we are really excited to get away and unplug...even though we'll have a cell phone on for stand by the whole time! We are blessed to only be 15 minutes from Disneyland, and we are DOUBLY blessed to have Ang's parents available for the whole weekend! They only live 25 minutes away!

Alright..that's it for now. Thanks for all your continued love and support.

Many blessings,

Tim & Ang

Wednesday, October 28, 2009

The Breeze and the Brook

Check out our little monster!

Sorry for not posting sooner. Guilty as charged. Nice to be back with you.

Well, we're 5/6ths of the way through our 2 week trial with daycare, and it's been a bit of a roller coaster.

Day 1 saw the biggest wound to date appear on Bella's left knee and upper shin. Really, it started on her thigh, went across the entire knee and down the shin. Worse than the bathing incident with the left foot if you remember that one. the upshot is that it is so bad that we now have to treat the left leg in three parts: 1) thigh, knee, foot. The good news is that because the wounds are so big on the knee and foot, they now require their own wrapping and bandaging. Before, we would use one roll of gauze for the entire leg, which meant the whole thing was exposed at once. This made for difficult handling because there was literally no where to hold the leg that wasn't injured. Now, I treat the foot first and wrap it separately. Then, the knee. In this fashion, we can hold on to the shin safely over the previously wrapped part. I hope that made sense. More wounds and stress, but easier to actually treat.

Day 2 saw a big blister in the crook of the neck/left shoulder. Like a collar.

Day 3 was uneventful. YAY!

DAy 4 saw Bella attack her face with her hands and do some serious damage. Poor Joan just couldn't figure out how to stop her from clawing. Bella is now leaving her eyes alone, but is raking her cheeks and ears with her fingertips, causing some nasty open wounds on both sides.

Day 5 (today) we did a half day to minimize the collateral damage. The good news was that we put on Bella's silk mittens over her ABC wrapped hands and this helped minimize further damage. I also taught Joan how to Taquito-wrap Bella (like a swaddle without the feet part) to basically keep her arms and hands immobilized. I showed her how to feed her with the G-Tube and change her this way so if she's sleeping she can remain that way. When I picked her up, things seemed under control.

Day 6 is Friday, then we all collectively decide if we want to go forward. Joan admitted it is very stressful, and that she is glad it is only M-W-F so she has a day off in between each to recover! She said that she thinks she'll get used to it, though. It's really just a non-stop puzzle. Bella presents us with a new problem it seems almost every week or two and we have to solve it as quickly as possible to avoid too much damage.

The gals enjoying some sweets at "The Cupcakery"

I have to admit that this puzzle is really tiring. My brain hurts from being "On guard" 24/7. Right now, I am covering the midnight and 6 am feeds since Ang is back working FT again, and so my brain really never shuts off. Ang and I split up the tween hours; if Bella cries before 2:30, Ang checks on her...after 2:30, I check on her. That's not set in stone, but a guidline to try to give each of us a couple of hours to turn off the internal baby alarm.

Every parent reading this understands the internal baby alarm. What is different between Bella's alarm and, say, Ali's, was that when Ali would cry in the middle of the night, it was usually 2 of the main 3: (hungry, tired, or wet). With Bella, the stakes are raised because if she has busted loose from her swaddle and is flailing while she is crying, she is most likely inflicting a wound on herself. That wound carries the potential of being a portal for infection, and infections can kill EB kids and often does. We've already ended up in the ER and hospital for 5 days last month for a Staph infection. NONE of her wounds at the time showed any signs of infection, so we had no idea, nor did any of the Docs, why or how she got so sick. That left us with a little PTSD because now we are afraid of pretty much every new wound. That sucks. I just didn't realize just how easy it was for her to get an infection, and as I was telling Ang, for better or for worse, I just don't know if I could ever forgive myself if she happened to get an infection and have it be fatal.

Okay. Now, that was all a lot darker than my usual posts, I know. BUT, what I am dealing with now is the reality of this condition. Until now, I have been mostly unafraid of Bella's wounds (That's a lie...I was freaked out during the first couple of weeks doing wound care at home). Right now, I am afraid of her wounds again.

What this is all really pointing to is my need to try to wrestle control of her disease back from God. God being as nice as she is, gave it back to me. Notice how FREAKED OUT I am now that I am thinking her safety and ultimately her life is in MY hands?

This disease is so much bigger than me...there's NO WAY I CAN CONTROL THIS. If I had a chalk board, I'd make myself write that for detention.


Typing this blog is like looking into a mirror. I highly recommend it for everybody and anybody, regardless if anyone else ever reads it. It makes for a good platform to process what's going on inside....some people might even call it "journaling" but since it's online and potentially public, it's called blogging. Whatever. It works!

Check out my son Julian...JUST KIDDING!

PROVIDENCE story of the Day:

Look for God in the whispers and winks of nature, not the shouts and the glares.

What I mean by that is just this...

Today, after a meeting, I walked out of the building and down the steps. At the bottom of the steps ran a brook/water feature; clearly built to create white noise and some serenity. I stopped, and sat down next to it. For the next ten minutes, I did nothing but just be. I allowed the sound of the running water to wash away my pain, exhaustion, stress, worry, and fatigue. It was better than sleep. it reminded me of a quote from one of my favorite characters from The Matrix Trilogy, The Merovigian.

He said, "Who has time? Who has time? But then if we never *take* time, how can we have time?"

Today, I *took* time to be refreshed. How many times a day do YOU *take* time to refresh your Self?

Later, when leaving Joan's with Bella, I opened the minivan to notice a wave of HEAT coming pouring out. I parked in the sun and forgot to crack the windows. Heat and humidity exacerbate EB, so we always try to park in the shade, cover the windshield, and crack all the windows. Well, I forgot to do all of it. I apologized to Bella, left her door open and walked around to the other side of the minivan and opened my door and the driver side sliding door also to get some cross breeze goin'. Problem was, there was NO wind; it was as still as it could be. Oh well. But in the next moment, a gentle, almost imperceptible breeze began to coax its way in over my shoulder. Like a whisper, it snuck into my ear and caressed me with the softest touch of a cool breeze. As I noticed it, I smiled, immediately thinking that God was behind this whisper. As I held that thought, the breeze gently increased, but ever so slightly, like to say, "yes, it's me." but, again, only in a whisper. After enjoying the whisper and feeling it pass through the cabin of the minivan, it drifted away, along with it the heated air trapped within. I looked up at the sky, and whispered back.

"Thank you. That was perfect."

Just some trickling water and the faintest of breeze can nourish the most tired of us, inside and out.

God bless the little things.

God bless you.

Tuesday, October 20, 2009

This Just In!

Well, take the good with the bad, right?

The Bad:

Our new insurance company (beginning in Jan '10) does not cover clinical trials either. The only circumstance is when "death is less than 6 months away..." So, we have to convince them that due to the high risk of secondary infection (like the one she just was in the hospital for 5 days with), she could contract MRSA and die at any time, theoretically. That is morbid, but it is also a reality.

As my friend Trevor said, though, "Save your kid first, pay for it later."

Okay, onto the GOOD NEWS:

I just got an email from the Program Supervisor at U of M Bone Marrow Treatment Center, Tim Krepski. We did the HLA Typing test to see if Bella and Ali were a match about a month ago. All it took were a few swabs on the cheek from each and voila! Well, Here is his email:

Hi Tim,
Just wanted to confirm some good news for you. The tissue typing results are final on Anabella and Alessandra, and they are identical.
I hope that all is well, and we'll wait to hear from you to reschedule your consult here with us.

I think that's a good sign, right?

I am waiting for a call back from Tim to explain it all in further detail. We won't be making plans to go out there till January now since November is already full of travel commitments and Dec is holiday airfare.

Anyhow, we are grateful for this news and feel blessed indeed.

Also, yesterday was Bella's first day at daycare and IT WENT GREAT! They are happy (so far) and we are happy (so far) so, so far so good!

Thanks again for all your prayers and good intentions.

Friday, October 16, 2009

Training Day

Well, today was training day at Joan's house! It went really well. Poor Joan was a wreck when I got there. I could tell she was really nervous. I took her through a diaper change and bottle/tube feed on Wednesday, and did it all again this morning for her. Then, for the noon and 3:00 feeds she did it all on her own with my coaching. She did great. She's gonna be fine. Her biggest concern is accidentally lifting Bella from under her armpits. That's a big no-no...just ask Nanny. DOH! Seriously though, she's been lifting babies 'normally' for over 30 years, so she knows she really needs to pay attention with Bella.

I "Bellafied" (as in modified for Bella) the two swings we bought as well as the outdoor pack and play. Inside, she's starting out in a cradle Joan has, because the pack and plays are just too low to pick Bella up safely from, or I should say the rails are too high. On Monday, I'm bringing an attachment for the pack and play that raises the floor significantly so we can spare Joan's back and give Bella a little more room to move around, because she is AS BIG AS A HOUSE!

WE ARE SO GRATEFUL Joan is willing to take Bella on! We are doing a two week trial 3x a week and then we'll reassess and see if it is just too stressful or time consuming for Joan. I hope it works out; Bella was delighted in all the kids to smile at today! She is perhaps even more social than Ali. For those of you that know Ali, you know that's almost impossible, but she connects with people in a way Ali never did at only 4 months. It's awesome to watch.

Alright, that's enough...just a quick update to let you know how the big day went. Thank you all for reading this, thinking of us, praying for us, and reaching out, offering to help out in some way or donating to the fund. All of these things help keep us afloat. I don't know how we could survive this without YOU. Thank you.

Please include in your prayers for healing the following people:

The Sheridans
The Corradins
NIck on 5D
Chelsea's Dad
Dr. Wagner's mom & family

Good night, and God bless you.

Wednesday, October 14, 2009

What did the world do before plastic and rubber?

Pound that bottle!

I was just thinking about the rubber tubes that connect to the plastic button sticking out of my 4 month old's abdomen.

Dr. Waldman, our AMAZING anesthesiologist, explained the answer bluntly. He said that when he starting treating EB kids 30 YEARS ago, they only lived till they were 6 or 7. By then, the malnutrition was so bad, they couldn't stay healthy and would just die from malnutrition or complications related to malnutrition.

The reason to put a G-Tube in a perfectly plump 4 month old has seemed to escape some people we know recently, so let me just reiterate as Dr. Eichenfield, the senior Pediatric Dermatologist at Rady's, says...

...the KEY to EB is NUTRITION,

and the KEY to nutrition is THE G-TUBE.


his other mantra is...

Once you fall behind nutritionally w/ EB,


Case and point, until the G-TUBE, Bella had never gotten up to the 32 oz a day she required. Now that the tube is in, we are hitting 32 ox every day, and her blisters have decreased in size, severity, and frequency. Her mouth has never looked so good. When she gets fussy over a bottle, NO PROBLEM. try the pacifier for a minute or two, and if she still won't take it....just dump it in the tube and everyone's happy. No more 60-90 minute force-feeds where we are literally squirting formula into Bella's mouth. That was the worst. BUT, all the Docs praised how fat we got her despite her condition, so it was worth it I guess.

Other news. I took Bella to daycare today to assess equipment needs. Joanie, Ali's phenomenal in-home daycare provider has agreed to watch Bella. She has had a child with a feeding tube before, and considers us family. In fact, THREE times this morning while discussing EB with her, I watched her tear up at what I was saying. We are starting out 3x a week, just like with Ali. In fact, Ali went to Joan's at this age part time as well, then transitioned to full-time at 6 months. We are THRILLED with Ali's social development so, we want to provide the same opportunity for Bella.

Today, I trained Joan on bottles, tubes, and diapers. Ang typed up a detailed quick reference guide (QRG to all you Verizoners!) for Joan as well. On Friday, I will spend the day at Joan's. I will do the first feed and diaper, then observe her the rest of the day, providing instruction, training, and coaching on best practices for Bella's care. After Joan's, Bella and I made a trip to Baby's R Us and bought two new plush swings for Joan, one for inside and one for outside...Joan has an awesome giant covered back patio. Tomorrow, I hunt for foam for the two pack and plays as well as plush sheets to go over them.

We have agreed that Joan will watch Bella for 2 weeks mon-wed-fri till the end of the month. Then, we will re-assess to see if everyone is happy, or to what accommodations need to be made. If it doesn't work, hey - at least we tried, and so did Joan. You have to TRY really can't predict what's gonna work and what isn't. Plan B is a nanny that comes to our home....more expensive and less socialization, but better supervision and safer. Plan C is daddy daycare, but my student loan and the past 5 years of schooling and training really are pulling for plan A to work out! :)

Yesterday we got trained on the feeding pump that arrived earlier in the day. Kelly, our home nurse, came out to train us. It was nice to have the same nurse so she could see Bella's progress. She couldn't believe how big and fat Bella got! Now we have an automatic pump set up in Bella's crib that we can set to deliver the midnight and 3 am feeds on a slow drip. "SET IT AND FORGET IT, RIGHT RALPH!?" It's like a crock pot! Anyhow, we are a little hesitant to try out the overnight hook up due to Bella's recent nocturnal activity. Perhaps once she settles back into her routine, it'll be easier on everyone. The two hospitalizations combined with mad amounts of narcotics and antibiotics have thrown her for a loop. She doesn't know which end is up. Last night was better than the night before THANK GOD, so hopefully her circadian rhythm is on the mend.

Next up is to reconvene with Minnesota to reschedule. We were supposed to meet with Dr. Wagner THIS MORNING! We just didn't have it in us to do three hospitals in three cities in three weeks. Gotta pace ourselves. Plus, we're in the middle of a total insurance BUNGLE right now (more on that later) so we can't move too fast with U of M presently anyway. It's ALL GOOD. Dr. Wagner is still relatively in the dark ages of EB BMT (only 16 months into clinical trials with an N=7) so it is FAR from a perfect model, and he seems to be tinkering with his research methods with each successive patient. That drives me nuts on one hand, though I understand his reasoning. He's a little to renagade for non-profits to start sending him $$$, so he has to do his own fundraising, but consequently, he is the cutting edge of a potential cure for RDEB.

Alright, enough for now. I don't fully understand who is allowed to post comments on here and who isn't, I thought I set it up so anyone and everyone could. Either way, please drop us a quick comment and let us know you're still out there whoever you are! Your comments got us through the early days, and we miss them. Thank you to those who have stuck with us. we really appreciate you in our lives.

Please add the following people to your prayers: God knows exactly what they need, so remind him of that, and suffice that if you share their name, SHE'LL know what to send them. ;)

The Sheridan Family (including cousin Chris)
The Corradin Family
Chelsea's Dad
Nick on 5D

Thank you all for your love and generosity.

Sunday, October 11, 2009


So much to share...gonna hit you with a photo essay this time...

We had to strap Bella down after surgery like Sampson so she wouldn't 1) dig out her eyes like she likes to 2) smack into her new button or 3) kick out her IV with her heel.

Ali striking a pose in daddy's chapeau in their room at the new Ronald McDonald House. Please donate to them wherever you are. They saved us $500 in hotel fees over 4 days we were there and fed us, too...not to mention being walking distance to the hospital.

Out to dinner with Ali and Grandma the night before we discharged. Thanks again to Grandma and Grandpa for stepping up and helping us keep the family together through this ordeal. We can't tell you how important that was to us.

Bella's temp ran cold throughout the stay and the room alternated between meat locker and sweat lodge...this shot was taken during meat locker hours.

Check out my new button! (Sweat Lodge hours....)

No words necessary

Something tells me Bella knows more than we think...could it be...HER EYES??? What an old soul as several people have pointed out. We agree. We learn from her daily.

Ahhhh, happy to be back home chillin' in her favorite lounger in the living room. Victory!

The G-Tube is AMAZING! Thank GOD we got it because as soon as we got home, Bella had NO INTEREST in her bottle after 2 feeds. No problem! Pop it in the gravity tube and slide it in! It is sooooo easy to deal with feedings now. And, because of all the fluids she's been getting and all the extra fluid from flushing her tube after every feed and medication, Bella's skin is looking GREAT!

Dr. Eichenfield (Pediatric Dermatologist) and Dr. Waldman (Anesthesiologist) have been at it for over 50 years with EB collectively. They both said that the key to EB is nutrition, and the key to nutrition is the G-Tube. They congratulated us on being so proactive with getting the G-Tube and really flattered us for getting her so fat despite her condition! It really made us feel great to hear that from those two guys...they KNOW EB. We also really appreciate all the support all the EB families gave to us in encouraging us to get the tube early. That really gave us the confidence to put a feeding tube in a 4 month old that is 50th percentile in weight for her age and 75th percentile in height. One thing Dr. E. mentioned that will never be forgotten by mommy or me is that once you fall behind with EB, you never catch up. THAT is why we have been so militant in feeding this little angel. Seems like it's working.

Now, we wait with baited breath for the kangaroo pump that will be arriving early in the week...can you say...



Good night. God be with you all.

Wednesday, October 7, 2009

Surgery Day!

2 of my 3 beauties that I am lucky enough to be a family with!

Hangin' around waiting for the call from the OR

So, the day started peacefully with no real hick-ups except that we couldn't connect with our CHOC NICU nurse in time to get her in to the surgery. No worries, I took lots of pictures of the EB CART they have dedicated for EB patients. Anyhow, we asked that I be allowed to sing Bella to sleep while the anesthesiologist puts her under as well as take pictures of their OR supplies for CHOC. The anesthesiologist (by the way, anyone know a shorter nickname or abbreviation for a-n-e-s-t-h-e-s-i-o-l-o-g-i-s-t? It's such a long word to type repeatedly...maybe I'll just refer to him as Dr. Waldman, after all, the man does have a name...) didn't seem too excited to grant my requests, but he went along with it.

We brought Bella in, and I sang her "Bella's Song" and she was out by the time I got to the first chorus. Then I took pics of the cart and its contents and left. As I was leaving, I reiterated how great it would be if we could do Bella's dressings while she was still out, either in a PACU isolation room (PACU = Post Anesthesia Care Unit...I think) or the PACU itself. Dr. Waldman wanted to wake her up before she left the OR (which I thought was a little weird, but he's the expert) so he again didn't really dig my idea. He asked, "How long does it take?" to which I answered, "If she's OUT, 20 minutes. If she's awake, 90." Then I walked out the door.

We hung out in the waiting room for maybe an hour when we got the call. "They're gonna let you do the dressing changes in the OR!" the volunteer said to us. We went into a prep room and gowned up, and then were led into the OR. WE immediately got to work. The Surgeon, Dr. Kling, Dr. Waldman, and the Surgical Tech ( I'm sorry, I don't remember his name ) were present still, as was a med student from UCSD. Ang started immediately on the left arm and leg while I started prepping bandages. We ignored everyone and dropped into our own surgical mode that we work in. Within seconds the surgical team started talking among themselves about how fast and organized and professional we were. One of them made the comment that we could work there. Ang was doing the ABC wrap on Bella's left leg and the two Docs were audibly impressed with her technique. I think they were a little incredulous that parents of a 4 month old could be so facile so quickly, but that is the way with EB, we need to figure stuff out as fast as possible to ensure the best possible outcome for Bella. That is why we're doing the G-Tube at only 4 months. Nutrition really is the key to staying one step ahead of this - let me remind you - fatal disease.

Anyhow, as the cheerleading and compliments continued, I asked Dr. Kling if she wouldn't mind taking pictures for us. She was into it! She started snapping away. Of course, this was after I got to politely ask her to step aside so I could wrap Bella's right hand. That was really funny. I told her, "I can't believe I'm getting to say this, but, pardon me..." then I moved into her spot and she got out of the way! I was definitely in my element in there though. I've always joked that our wound care procedure resembles surgery in its precision and clinical calm demeanor that we approach it with.

Anyway, we finished time? 20 minutes. NAILED IT!!!!

Dr. Mommy and Dr. Daddy working on Bella simultaneously in the OR

We went back to the waiting room for a short while and then got a message stating would one parent come to the PACU. Ang nominated me, so I went back. Bella had a painful awakening from surgery so they re-medicated her and asked me to help sooth her as she came out of her snooze. I started singing her song again, and a short time later, Bella's nurse came over and said, "The entire team in the OR said that that song you sang to her was a real tear jerker!" Meanwhile, I had explained to Dr. Waldman that, as a music therapist, I use music with Bella to cue a relaxed response from her. He just looked at me flatly while I was explaining that, but once he heard and saw it, it was another story altogether. Music therapy is like love. You can tell someone about it all you want, but its meaningless compared to when you personally witness or experience it for yourself.

Bella striking a pose while recovering back in her room

A chaplain came to visit us shortly after we returned to our room and we talked for a while about the while about our whole journey and how faith had transformed it into an inspirational walk full of abundance and love. The chaplain commented how she couldn't believe how unbelievably calm we were in the moment giving what was going on. We explained that this is a marathon, not a sprint, and that we pace ourselves emotionally so as not to burn out. We also feel genuinely cared for by our friends, our family, the staff here at Radys, but most importantly by our faith. We are also reminded of our family-in-arms The Sheridans who are going through the BMT clinical trial at U of M and how Sam and her mom Marybeth have been in the hospital for almost 2 months straight enduring the most intense life threatening leg of Sam's 14 years with this disease. I can't even wrap my head around their current stay, much less all they have gone through to date, and their faith is every bit as strong and steadfast as ours. We look up to them so much for courage, and perseverance. THANK YOU Marybeth and Sam!

While the Chaplain was in the room, a short while after describing what I do for a living, Bella had a pain episode when we tried to switch who was holding her so I could eat. She "seemed" peaceful and out cold, but when I handed her off, she arched her back, grimmaced, turned red, and let out repeated, tired, pain-filled cries for quite a while. We immediately turned our attention toward her and as Ang got her comfy in her arms, I stroked her forehead, held her hand while Bella held Ang's and I once again sang her her song. This time I had to sing all 3 minutes of the song plus hum it over again before she settled down. It usually works much faster than that, but hey, 6 minutes to calm a 4 month old that just had open abdominal surgery? We'll take it! Anyway, once I stopped, the chaplain quietly whispered, "So that is what you do, isn't it? I just felt the calm and peace in the room, and can see how patients would be so uplifted by that. Wow. Thank you for letting me remain in the room." Really, I was grateful to have her calming, peaceful presence in the room. It gave us the space to completely turn from her and "care for Anabella."

Being loving parents is perhaps one of the greatest ministries available to us all. I am so grateful we are Bella's parents.

This group hug was Ali's idea before we split up on Monday to travel to SD

Thank you for all your prayers and intentions/vibes/ and thoughts. They made this day truly peace-full! Now, please pray that Bella heals w/out infection here in the hospital, but also pray for the following people. We would appreciate it so much:

May Barbara's surgery on the 16th have the positive outcome she is praying for.

May Greg's rehabilitation be swift and complete

May Sam's body heal fast and may her pain be minimized

May Chelsea's dad heal from whatever it is that got him

May my mom recover quickly and fully from a nasty flu that kept her from coming down here with us.

Thank you so much. Bless the positive power available through this amazing thing called the internet.

The Team is introduced

Okay, it's amazing what can happen in 24 hours.

We feel SOOOOO much better about EVERYTHING.

Lot of changes to the plan both in and out of the hospital.


Nanny came down with the flu today and Grandma stepped up on NO NOTICE to come down and help with Ali so we could keep the family together through this hospitalization. We are SO GRATEFUL to her for doing so. She's gonna be a little out of her element, but we hope to revive the adventurous spirit within her by sending her and Ali on all sorts of missions and excursions. Say a prayer for Nanny that she gets better, and for Grandma that she survives and enjoys the journey down here in SD!

Thanks to our friends Pete and Maria who are taking ALi with them to Disneyland tomorrow. Thanks to Mike and T for taking her last weekend. Ali LOVES D-Land, so anytime our friends are going and Bella's in the's a win win for everyone.

Thanks to my friend and esteemed NICU MT colleague Kat for having Starbucks for Ang and I delivered to the front door each morning! Kat, I walked by the meeting room where we presented the research on NICU Music Therapy to the Cardiology team here last fall and smiled fondly of that experience.

Thanks to Susan Hermes and Danial Jones for their strong recommendations to work with Dr. Larry Eichenfield down here. The guy is amazing. He trained our current Pediatric Dermatologist in OC, Dr. Metz (of which he in turn spoke incredibly highly of). The guy has been in EB for decades and is still hip to all the latest research happening at home and abroad. He knows EVERYBODY, but has NO EGO AT the combination!

So, onto business. The surgery is set for 10:10 tomorrow morning. Dr. Cling, our surgeon is AWESOME. She has experience working with EB kids, so this is nothing new to her or the rest of the team. We are trying to get our NICU nurse from CHOC, Tanya, into observe the procedure to see how they prep an EB patient.

They will be putting in a g-tube with a button on it so it is low profile from the start. We'll remain in the hospital till at least Sunday to make sure it works and we have a successful feed strategy in place that gets Bella back up to the calories she needs daily to grow and heal.

Please pray with me...

Dear God, thank you for providing us with such a wonderful, experienced team to make our family's life better by safely implanting this cute little button and feeding tube in Bella. Thank you for keeping her infection free while here in the hospital.

God, thank you for providing our friends in Minnesota the Sheridan Family with continued strength, peace, and healing.

God, thank you for providing a fellow EB dad Greg with a speedy recovery from a stroke he recently suffered.

God, thank you for providing Dr. Wagner's family peace and comfort during their time of mourning the death of his mom.

God, thank you for bring peace, strength, and healing to one my mentors and friend Barbara as she deals with some scary tests and surgery related to Melanoma.

God, thank you for swiftly healing my friend and MT colleague Chelsea's dad from his recent illness.

Thank you so much for praying with me.

Good night.

Monday, October 5, 2009

We have no words... explain what we are doing admitted to a hospital on Monday. Apparently, we weren't on the schedule for surgery. at all. Then, we were told we are on the schedule for Wednesday. So, why did we admit today? No one has an answer.

Not a good start. it started with a call this morning saying Cigna wouldn't cover the procedure. They felt Bella's procedure is an outpatient procedure. It took about 5 hours and several phone calls among doctors, supervisors, etc. before they ok'd 1 NIGHT in the hospital. Great. So much for that night.

Ronald McDonald house is nice, though! Too bad, only one of us gets to stay in it while the other has to stay by Bella's side. We're gonna take shifts alternating each night so neither of us run too low on energy.

On a positive note, I met the CEO of the RMH, Bill Lennart, tonight. Super nice guy. I told him I brought all my instruments to let the kids in the house play at dinner time, but didn't know who to coordinate with. He was blown away and introduced me to the COO. I'm supposed to call her tomorrow to see which night this week is open. They have an awesome little outdoor amphitheater that will be perfect. That'll be cool.

Ali and Nanny are coming down with Grandma and Grandpa tomorrow, and Ali and Nanny will stay at RMH. Good thing they arrive tomorrow as RMH an Rady's go into lockdown on siblings or visitors besides mom and dad. because they get in tomorrow, RMH will let them stay...grandfather them in. We've been telling Ali all weekend that she's going to Sea World this week with Nanny so we're glad they can stay.

Anyway...hurry up and wait. The Doc that admitted us was TOTALLY cool and great to work with. We changed several of the standing orders to accommodate Bella. For example, they wanted to start a TPN due to a "failure to thrive" note in her admissions paperwork. WTF??? She's 50th percentile weight and 75th percentile in height folks. There ain't no failure to thrive goin' on here. Anyway, we explained she is taking her feeds just fine and that and IV is dicey with her due to not being able to use adhesives. He agreed and put off an IV until surgery time and no labs until they start the IV. Those are positives, so we'll take the positives where we can.

Alright. Time for sleep. HOpefully we get some straight answers in the morning. Ah, hospital/insurance red tape. Good times.

Tonight, please say a prayer for the following people: Sam, Greg, Chelsea's dad, and Barbara. Each of these people could use a prayer for healing. It would mean a lot to me if you would add their names to your prayer list. Thank you so much.

3/4 of Team Ringgold wishing you the best!

Sunday, October 4, 2009 GO!

Well, there's room at the inn. There's a room waiting for us at the Ronald McDonald House in San Diego. We can check in any time after 8:30 tomorrow morning, and we'll probably stay thru Thursday if all goes smoothly. Honestly, they haven't given us a clear picture as to how long before Bella can discharge after surgery. Heck, we don't even know for sure what day her g-tube is going in...nothing like uncertainty. If it is Tuesday, we were joking today that we should talk the docs into letting us do her dressing changes while she's still sedated! At least they'd go better than they have lately...

...the good news is, however, that Bella is knocking back her bottles while wide awake! We are back to 5 oz a bottle, but are not fortifying them with any extra formula...just the 1:1 recipe on the box. However, we're spacing the feeds out to q4 hours instead of q3, so she's still not getting the total amount she should be, but we've been ramping that up daily and she's tolerating it...for now....

...the bad news is she is no longer tolerating dressing changes. WE had to stop during the past two wound care days to give her a break because she just LOSES IT on the table and we are unable to calm her down. So, the time we made up not fighting over 60 minute bottle feeds just went into dressing changes, but at least that's only 3 times a week (Tue,thu,sat). It is really rough on the psyche to change her dressings when she is screaming at the top of her lungs and turning three shades of red and purple. It's kind of distracting, and really wears on my concentration...never mind my SOUL. I have to turn off my daddy connection to her while we are wrapping her, and just look at each limb/body part at a time as a puzzle that needs solving. It's my coping mechanism for not being heartbroken at the sight of my very broken-looking baby. I don't know how many times I've punctured my baby's skin with a needle to relive the pressure of a blister, but it's been enough times that I've named her needle "Shirley." No idea why, really...just seemed like a sick and twisted attempt at gallow's humor. Hey, whatever works.

Tonight, Ang busted out some baby pics of Ali to compare just how much they look alike, and while the pics were super cute, my heart just BROKE because I saw Bella with perfect skin, and knew it wasn't her. It was weird. When I saw pics of Ali grabbing her naked hands, I caught my breath thinking she was going to hurt them. I had to remind myself that I wasn't looking at Bella, but the resemblance is amazing in some of the pics. I was in daddy mode when I was looking at the pics, so it got to me.

On a lighter note, I dragged my carcass out of my condo today and got on my mountain bike for the first time in 3 years. I had been playing soccer sporadically over that time to stay in shape, but my back injury has pulled me out of that for a while, and I've been pretty blue of late, so I knew I needed to get outdoors and get my blood pumping again. It was a PERFECT day, clear, sunny. Beautiful. It felt great to get off the concrete again and tear it up on the trails, even if for only a short while. I'm pretty outta shape, so I didn't wanna push it and risk injury.

So, here's the plan. Tomorrow morning at 8am, we call Rady's and talk with the house supervisor to see if we can admit Bella tomorrow and if so, what time. Next, we call Dr. Eichenfield's office to see what time in the pm they want to see Bella. Then, Ang, Bella, and I will drive to SD and check in to the Ronald McDonald House first to set up shop. From there, we'll head over to the hospital and either see the docs or admit Bella, whichever comes first. We think the procedure is going to be Tuesday, but again...none of this is written in stone yet.

Then, on Tuesday, Grandma and Grandpa will pick up Nanny and Ali at our house and all head to SD together. Nanny and Ali will stay for the remainder of the week with us at RMH and take day trips to Sea World and the wild animal park, etc. The cool thing is that currently (knock on wood) Rady's is NOT on H1N1 lockdown like CHOC was last week, so Ali will get to visit Bella. We've been taking Ali out on excursions while Nanny babysits Bella lately so Ali can feel a little more included. It's been great. Now, she can be a part of this next journey, and she is very excited.

Lastly, I just shared this in an email and I thought I'd share it with you all as well... I must admit that I am scared SHITLESS to let Bella out of my sight, even though I know this team has operated on several EB kids...control vs. trust. Last round, I controlled the situation by being in the room 24/7 and not allowing a single human to touch my daughter without my consent...and it seemed to work. Now, I have to turn it over to God and trust that the same outcome is available. Sometimes it’s easier said than done. It’s not that I don’t trust God, it’s that my NEED TO CONTROL is sometimes stronger! I am, and always will be, a work in progress.

See you in San Diego!

Friday, October 2, 2009

Back home...for now

Thank you, mommy & daddy for keeping me safe at CHOC

Well, we're home, and we're EXHAUSTED. 5 days in CHOC for a fever and infection, and we got out without any collateral damage! Those of you that remember the tape on the face incident last trip understand. Bella's back to her old self pretty much, and managed to pretty much not lose any weight despite not eating for several days on end. We think she just needed time for her esophagus to heal. She is still not back to the mega-meal eating schedule we had her on, but we're close.

No time to rest, though. We are ramping up for a week's stay at Rady's Children's Hospital in San Diego starting Monday for the insertion of a feeding tube into Bella's abdomen. She had her 4 month check up this morning and the covering physician was incredulous at how big Bella was despite her diagnosis. She was a little baffled that we were even putting in a G-tube. She just looked down and saw this big, healthy baby (50th % - weight, 75th % height, 90th % head circumference), but she didn't see the shrinking esophagus, or the hours a day it takes to feed Bella. It's all good. I straightened her out. j/k.

Mommy and daddy are beat, though. It was so tiring being "on guard" for so many hours in a row. Ang and I vowed not to leave Bella alone once while we were there and while it paid off, we paid the price, physically, and especially mentally. It takes a consistent active effort to stay so sharp and on the lookout. Thankfully, the staff at CHOC were extremely gracious and did pretty much everything we asked (politely demanded) of them.

Can't say the same for U.S. Airways. I spent over an hour fighting with boneheads at U.S. Airways to get my mom's ticket moved from this Saturday to next without having to pay the $150 change fee. Apathy at its worst. When I called Southwest to change my flight on Friday, the FIRST THING the CSR said to me was, "Oh I'm so sorry to hear that. Let's get you home to your baby." Then, she put me on a new flight and retrobooked the ticket 14 days prior so I wouldn't get killed. Total out of pocket cost to change on Southwest over the phone?


U.S. Airways decided to lecture my mother about "when you hit "I agree" online, you are saying that you are going to follow the rules...." When I took the phone from my mom and the CSR repeated that line to me, I was beyond stunned. Her dupervisor was on the phone in about 30 secondsd after that one, but he was as limp a needle as she was. Then, when I asked for his supervisor, he said, "My supervisor, Keith Dunn, doesn't take calls." I escalated up one level and was at the top of teh food chain at U.S. Airways. SOLID.

I PROMISED Javier (the wet noodle) that I would blog about this poor customer service, so here I am making good on my promise! Time to move on.

Oh, bottom line...they tried to hit my mom for $275 to her on a new flight with the help of the travel company she booked with for $25.00. It took over and hour and 5 people, but we got it. Now mom will be able to travel with us to San Diego to hang out and entertain Ali while we protect Bella.

We are looking into staying at the new Ronald MacDonald House there. I volunteered there as a music therapy intern last summer, and since then, they built a GIGANTIC new facility. I'm hoping for some good karma in that we can all stay there as a family for the week without a hassle. The old house was only 12 beds, so there was a huge waiting list, but this new house has 47 beds, so hopefully they can accommodate us with such short notice.

We head down there Monday, and hope to be home on Friday. Recording Bella's record has had to come to a halt, so has our trip to Minnesota. We're supposed to come home Friday and fly out to Minneapolis on Tues. I don't know about you, but 3 hospitals in 3 different cities in 3 weeks is a bit much, even for us wunderkind! LOL.

Speaking of which...I need a nap...bad. Talk to you all soon. Thank you for your love, prayers, and support!

Sunday, September 27, 2009

The Return to CHOC

I am an Oompa Loompa!...Don’t worry, that weird growth is my IV line

I’ve said it before…what a difference a day makes.

Every day in the hospital is a learning experience for everyone involved, IF they are willing to learn. Some people come to work and think they know everything they need to know and essentially ‘turn off’ their brains and run on autopilot.

How many of you have seen this?

How many of you do this?

Some people come to the hospital thinking they have no say, or no knowledge of how to actually partner with the treatment team taking care of them or their loved ones.

How many of you do this?

Point is, it’s rather easy to shut off the Creator Brain and just operate on Reactor Brain Mode. I’ve been in both situations myself, so I can speak from first hand experience! I’ve been that guy who just shows up and does his job while thinking about something completely different. I’ve been that guy who just follows along, not wanting to make waves.

Thankfully, my beautiful daughter Bella has yet again reinforced my ability to shift from Reactor mode to Creator mode.

Here’s the latest…

For the past couple of weeks, Bella has really developed a hearty aversion to the special Haberman Feeder bottle we’ve been using. We have had to resort to getting her to fall asleep to sneak a bottle in to feed her. She absolutely REFUSES to drink a bottle while awake. It was quite the process: First, we swaddle her, then slip in the binky (clinical term for pacifier), then wait for her to fall asleep. Then, just as she slips into snooze-land, we slip out the bink and slide in the bottle in one smooth motion. Then, she drinks until she realizes what’s going on and gets pissed, or falls asleep totally and stops sucking altogether. It takes usually 30-60 minutes per bottle. However, if Bella happens to be wide awake (some nerve), she might not want to fall asleep, so we sit and fight and cradle and try and before you know it, 90 minutes has gone by, and the bottle has gone bad. So, it’s pretty regular for her not to get in 6 bottles a day this way. In an effort to keep her daily caloric intake up, we fortify those bottles with extra formula, and it seems to keep her weight up. Last week, she landed in the 50th percentile for weight at her Dermatologist check-up.

Her GI Doc is concerned she is developing strictures in her esophagus as a result of recurring blisters. We guessed she was getting blisters in her throat because she tolerates a binky but screams when she swallows. (I don’t know how much I’m repeating myself from my last post…long hours in the hospital and little sleep will do that to ya.) So, she got an esophagram on Wednesday. That’s also called a barium swallow. Bella got strapped onto a board, and they took X-rays of her while she drank a special cocktail that could be seen by the x-ray machine as it passed through her GI tract.

Results came in today that they discovered a stricture at C5, the fifth cervical vertebrae. Dr. Grant, our GI Doc, will be in tomorrow to discuss what our options are.

Meanwhile, there’s this little thing called … fever.

Thursday, Ang noticed Bella’s temperature going up. It spiked Thursday at 103.2. She called the Doctor’s office, and they told her to give her Tylenol and come in the next day. Friday morning, Ang took Bella to the Doctor and they told her to take her to the ER. By 4:30, the Hospital said they needed to admit Bella. They wanted to get fluids into her and get her temperature under control.

Oh brother, here we go again. Time to ward off well-meaning but untrained staff from harming Bella. I mean that in the nicest way possible. It’s just that with EB, many best-practices are actually contraindicated. Ang had to ward off the ER staff for 7 hours before getting up to the unit. In all fairness, the the staff was incredibly accommodating and open to Ang telling them what to do.

From there, it was a matter of professionally and firmly informing almost every staff member from Doctors to Phlebotomists to Nurses about what they can and can’t do to and with Bella. We only had one stand-off with a resident whose comment was, “I read about [EB] in one of our textbooks.”

Who's the bigger cuddler?

So. Here we are. Back at CHOC. At least we’re not in the NICU again. We have a nice big room to ourselves with a pullout chair that Ang and I actually slept together on Friday night. We have a TV with VCR and a library of Disney movies in the play room just down the hall. We saw Beauty and the Beast (FINALLY), Fox and the Hound (not much of an upper after the first 20 minutes), Lady and the Tramp (awesome), Toy Story (good story trumps good animation, Dreamworks…learn a thing or two from Pixar about storytelling!) Hey, there’s not much to do while your standing guard 24 hours a day.

Bella’s temp is back to normal and we are experimenting with a new bottle today. So far, she’s digging it, however, she can only tolerate 2 ounces at a time before wearing out, so slow and steady gets us back home. We are hoping to get outta here by end of the day tomorrow or Tuesday at the latest.

The bigger picture is when are we going to put the feeding tube in. We’re thinking about just combining it into this trip since we’re already here, but we’ll all have a better picture after we meet with Dr. Grant tomorrow to discuss our options. We were hoping we could go through the clinical trial before having to get the G-Tube put in, but if it eases her suffering and ours along the way, that’s a good thing.

Providence stories of the day (yes, there are more than one):

First, who was the ER Doc that treated Bella? Our NICU Fellow Dr. Green. Boy, THAT saved a lot of explaining.

Second, Ang and mom were a little late getting to the hospital this morning, and were a little worried I’d be mad since they had my morning Starbucks (I spent the night last night so Ang could go home and get some rest). As they were walking in to the hospital, Ang spotted our favorite nurse from the NICU, Tanya, walking through the lobby as well. They caught up a little and Tanya explained that she has received a scholarship from CHOC to do a review of literature to create a reference of best practices for patients with EB for CHOC! She has been a nurse less than 2 years, and has already had 3 EB babies, and is passionate about educating her peers so that future EB babies have it easier at CHOC. GO TANYA!

Second, Bella’s I.V. in her head pulled out this morning so we had to put another one in. The second one lasted maybe an hour. The nurse who put it in was on the night shift, so by the time we could get the nurses to put in a third, she had been long gone. So, in walks our newest HERO at CHOC, Cynthia Smith. She has been a nurse for 36 years, and yet was as upbeat and fun as any new graduate we’ve met. She had experience with EB kids and had a clear plan about how to get this done right. We spent over 2 hours getting that puppy back in. It took two tries at 2 locations on her head, but at the end of the procedure, we got a custom-made, cap with chin-strap made to house her I.V. juuuuuuust right.

By the way, Cynthia was in on her day off, and happened to answer a phone she was sitting next to. The caller was our nurse looking for any nurse who could start an I.V. in the scalp. She didn’t even know Cynthia. Cynthia just “happened to answer the phone,” as she explained.

Third, as I moved into the Family Room on the 5th floor of the hospital to write this, I noticed a saying on the wall to the right of where I sat to write. Sound familiar?

It’s the first three words of the chorus to Bella’s Song…just out of order…Live. Love. Laugh. Life is a game to play so that everyone wins.

Remember, God’s in the details…in the little things. It doesn’t have to be clouds parting, choirs of angels singing moments to recognize God at work. It’s just the little paper cups of water along the marathon route that keep the runner going.

Thanks God for the two cups of water today!

P.S. I will be doing a better job posting at least weekly, maybe bi-weekly going forward. We’ve missed you guys!


Tim and Ang

Friday, September 25, 2009

The Roller Coaster Continues

Me, Sean Stephenson, and his dad Gregg Stephenson

Well, up and down. This is the way with EB.


Getting to meet Sean and his dad, Gregg, this week at my good friend Joe Polish's annual conference. I asked Gregg if I could interview him and his wife for The 5 Percent Collective and described my vision. While describing my vision, Sean says, "You could build a MOVEMENT around that." My vision? To empower parents with children with special needs with the qualities that those 5% of married couples who don't split up have and use to stay together and raise successful children.

I want to create a monthly tele-seminar to interview those parents, but I want to create a retreat where families come and meet other families whose children have DIFFERENT special needs and diagnoses so they can see that while their diagnosis may be different, but the journey is NOT.

Left leg is (knock on wood) looking great!


I am in Phoenix while Bella has a fever that has spiked last night at 103.2 and today at 102. Mommy is bringing her to the doctor this morning while I sit in Phoenix. NO fun being so far away.

Bella is getting blisters on her neck, back, torso, and places where she hasn't had them yet.

Pray for Bella.



Thursday, September 17, 2009

Well, sorry it's been a while since posting! I've been at a loss for how to keep you all updated without you having to come to the blog to check, and I've been a little laid up since my accident. NO worries, though. Just wanted to reach out and touch base again. You see, today, I finished "Bella's Blessings: a Humble Story of Providence." Today's task was to finish importing all of YOUR comments. I was really inspired all over again by your generous love. After all, there were over 500 COMMENTS on that page in just 3 months. You guys are AWESOME!

Now, what news to bring to you...

Well, Ang went back to work yesterday. She is happy to get back into a routine again. She was couped up in the condo all summer during the hottest months in SoCal, and since heat and humidity exacerbate Bella's condition, it was tough to get out. I'm back in the home for a month taking care of Bella. No worries, I had a blast with Ali for a month when Ang went back to work the first time, so I'm into it.

Bella's feeding issue is as follows. She will NOT take a bottle awake. We have to give her a pacifier and let her fall "almost" asleep...then slip the pacifier out and slip the bottle in without waking her. However, make sure that bottom lip doesn't get sucked in...when Bella pulls that bottom lip in when she's sleeping, you can forget getting a bottle in there! We are fortifying her bottles with extra formula; still using chlorophyl and Alkaline water (pH 9.5), and still using the culturelle and Zantac 2x a day. Despite her bottle aversion, Bella seems to still be growing every week, so we're blessed.

Regarding Minnesota, we are GO for consult in October, but STOP for anything else. Our insurance doesn't cover clinical trials. We are appealing, but it may be a mute point because Ang's company most likely is changing providers during open enrollment in October. U of M said that the new insurance provider usually works well with them, so keep your fingers crossed that the new plan covers clinical trials!

The best part about reading old posts was that I came across my vision for Bella. "One day, Bella will look back and say, "yeah, when I was born I had this rare skin condition, but when they brought me home from the hospital, it went away."

It dawned on me, that when we go through this trial, and Ali's cells start to completely heal Bella, we'll come home from U of M Hospital, and her condition will go away. When I made that bold statement, I never thought past CHOC, but GOD thinks a lot further ahead! Furthermore, she really will be young enough to where she'll have to read her own book to learn about this whole journey. Our hope and dream and vision and PRAYER is that one day, Bella will just have to take our word for it that life was anything other than typical.

Good to talk to you again. Please comment and tell us you're still here!

We love you, God bless you all.

Friday, September 4, 2009

Pack your bags...anyone have a PARKA?

Well, we're going to Minnesota, folks!

We have a consult with Dr. John Wagner at the University of Minnesota Blood & Marrow Transplant Center on Wednesday, October 15 at 9am (if you're going to be in the twin cities that day - or the night before - let us know! Let's share a meal!).

Things are moving along with the registration, paperwork, gathering of information. We are "in the funnel" as Tim at U of M, who is coordinating our care, put it. He expects that this whole process, including the bone marrow transfer and recovery, will happen within the year. That means, by this time next year, Bella could be potentially free from the clutches of EB.

She'll only be a year old.

I don't remember anything (consciously) from that age, do you?

You guys, let that sink in for a second.

She could grow up having NO MEMORY of this.

No memory of pain.

No memory of suffering.

THAT is an inspiring vision to hold on to.

There is a patient who is BMT +6 (6 days post transplant) right now and her mom is keeping us all updated through facebook. We are praying HARD for her daughter right now. I will ask if I can share her name with you all, but in the mean time...know that a girl is fighting for her life right now and needs EVERY ounce of energy, thought, intention, prayer sent her way TONIGHT. The good news is that there is an UNLIMITED amount of love and abundance available for all of us to channel wherever we choose! So SEND IT TO MINNESOTA RIGHT NOW, whatever time it is you are reading this, just take 10 SECONDS and pause, concentrate, focus on U of M BMT patient. Send light, love, laughter, healing, strength, peace, patience, persistence, FAITH, support, BELIEF, and trust...or any other you feel called to!

Also. I am planting the seed now. Remember PUCK. It is a non-profit being formed to raise $$ for U of M's program. Right now, even with all the various EB non-profits out there, NOT ONE OF THEM is financially supporting Dr. Wagner's trial. I refuse to get into any of the politics of non-profits and competing research teams at competing universities. I will just say that Dr. Wagner's program is on the verge of a massive breakthrough for EB and no one within the community is stepping up to help.

Weird. So, PUCK is being formed by an EB family that has moved to MN to help him out.

Lastly, is up! If you are parents of a child with special needs, or know of one, please go to the site or send your friends or family to the site so we can begin to build a support group that is based on power, optimism, and a desire to be cause in the matter, despite the circumstances.

In other news, we are moving to a mostly formula diet now and will be introducing rice cereal soon. Bella is really struggling with her bottles. We don't know what it is, but she just fights and screams through either the first few minutes, or 30 minutes, then passes out and it takes another 30 minutes to manually squeeze the bottle in one squirt at a time. Average bottle takes an hour to give to her right now. :(

Good news is that we've been using alkaline water for over a week now (pH of 9.5) and her skin looks GREAT. Virtually no open wounds on the outside of her body right now. Just some little stuff on the face, and existing wounds continue to heal wonderfully. Now if we can just get her eating without suffering...

Now, enjoy some wonderfully ridiculous adventures in the girls' room from earlier in the evening...