The Date is Set

They are admitting Bella into the hospital for her stem cell transplant next Tuesday, June 22. They will start her immediately on an anti-seizure drug called keppra, then begin busulfan on Wednesday. One of the possible side effects of busulfan is seizures, so the keppra will be good and flowin' in her system already when the busulfan arrives.

Bella's transplant date is set for July 2nd.

I will go into greater detail as we roll through each day. Now we have a timeline. We can all start to focus our intentions and prayers into time.

We finished a barrage of tests and labs today. Ali was a CHAMP this morning. A steady combination of benedryl, lydocaine, Barbi DVD, and mommy kept Ali as relaxed as we needed her to finally get her labs done.

Bella was a champ through her CT scan, chest x-ray, and Echocardiagram as well! She is just so sweet. She is charming everyone that works with her.

Unfortunately, her Hickman Line is not working properly and has become a little bit of a pain in the ass, pardon my french. It is really difficult to draw blood from it. They can fluch liquids into it just fine, but pulling the good red stuff out... that's another matter. Seems that it is a pretty big line in a pretty small kid, so it is probably resting up against the wall of the vein.

However, the pouch that holds the line is AWESOME! you cannot see any of the line exposed when not in use. That makes my anxiety nice and LOW.

Bandage changes went really well today, except that we can't get the Hickman wet. So, back to sponge baths. Boooo! We brought her super cute inflatable tub and we got all of one use from it before it has been relegated to unfit for use. Waaahh! Love that little tub. Bella greatly prefers bath time these days over lying on her back time. Oh well. Life is change, life is change.

Ali starred in her first musical today! The kids at RMH had a 3 day drama camp that culminated in them putting on excerpts from "Annie." Oh man, it was CUTE! We were proud parents as we watched her first dramatic production! She does it at home almost every day, so why not in front of strangers?

Tomorrow, we (I) move (us) into our new suite! It is basically an apartment. There is a main living room that has a pullout couch and a glider, a dining area/table and small kitchenette. Then, the bed room has a built in desk, two queen sized beds and built in bunk beds with TONS of closet space and storage! I'll get some pics up once we're moved in.

We got our "Parent Handbook" on BMT today. Woof. It's a textbook. We got a lot of reading to do. Luckily, thanks to Marybeth Sheridan and Brett Kopelan, we have followed closely two of the recent BMT patients with Epidermolysis Bullosa over the internet, so we feel like we have a sense of what is to come. When they sat me down and explained the entire procedure today, I felt like most of it was review from reading it on the net. Now it is time to internalize it.

Onward we go! Thanks for being here with us. Please, keep the comments coming. Even just a "Hi, we're here with you." is really all we want to know. The biggest drawback of using a public site like this is that while we can track that over 200 people come to Bella's blog every week, we don't know who 99% of them are. That makes us sad, because it's the personal relationships through a few sentences that keep us going, and when we get 0-5 comments when 200 or more read the post, well, we just miss hearing from you, too! you just hear from me, now we'd like to hear from you! Let's see just how many people we can get to comment on one post. C'mon! Chime in! Hook us up!

Love and Gratitude.

Placing a Hickman Line, Pulsoximeter, & EKG Lead for EB kids

Check out the Zombie at 6:30 am...

Well, The big procedure of work up is complete. Bella had her CVC, or Hickman Line, placed in her chest today. This will be kind of like a permanent IV where the doctors and nurses will be able to easily draw blood, and administer medicine and nutrients. The line has two different valves that connect to one "tube" that is divided into the two "lanes" of traffic. This one tube goes into the main coronary vein and sits practically in the heart itself. It is a large apparatus, and due to its proximity to the heart, risk of infection at this site needs to be closely managed.

Let me break the day into the Good and the Bad like I used to, since there was both. That way, I don't concentrate on only one.

Somebody does NOT like to be up at early thirty in the am!

First, The Good:

We met Dr. Jakub Tolar today! YAY! For those that don't know Dr. Tolar, he is the chief transplant doctor working with Dr. Wagner on this study. We did not meet him during our original consult, but have consistently heard glowing praise from every other EB BMT family that has gone ahead of us. He visited us in the preop room and I had the opportunity to work with him in the O.R. (I'll get to that) It was a real treat. He is incredibly professional, detailed, and yet completely invested in you the parent, open, and approachable. He wants to hear from me via email EVERY NIGHT for a status on not just how Bella is doing, but how we are doing as well. That ROCKS. The biopsies and blister tests went extremely well under his direction, and while everyone was hanging on his every THOUGHT in the O.R., there was not a trace of ego in the room. He appeared to just be a man in scrubs among other men and women in scrubs.

The Treatment Team of Ringgold and Ringgold...

Throughout the following, Bella was sweet and adorable, though a little sleepy. The anesthesiologist said this was one of his "Top 3" experiences with an Epidermolysis Bullosa baby and her family. I'm sure he says that to every family.

Two particular items of note for EB families:

1) In case you didn't already know this, there is a relatively easy way to get an EKG without having the leads pull skin off. First cut the adhesive portion of the leads off. Then, use a dollup (you know I'm in the midwest now) of 1% Hydrocortisone cream on the lead to connect to the body. then use a piece of mepitac to secure to the skin over the top of the lead.

2) If you need a pulsoximeter attached yo your baby or small child's hand, have them put duoderm on the inside of the bracelet facing inward to cover the adhesive material. Leave 1 centimeter at the end exposed so the pulsox can adhere to itself once wrapped around the finger.

Ali hanging out with the RMH dog Jerry is definitely good...

Ronald McDonald House goes in the good column today for sure. Today, Ali had Acting/Drama Camp from 1-4. (I know, I know, as if she needs any instruction in this area...wonder who she gets THAT from) Then, we played games and she wanted to exercise, so she asked me to take her to the exercise room. She walked on the treadmill, rowed the rowing machine, basically asked to try every machine in there to get out the rest of her energy. She really looks up to mommy and how dedicated she is to exercise. Then, after the dinner the was made for us, there was a therapy dog, Murphy, that came by, then there was a craft time for making cards, followed by open play in the playground till bath time. Man, she went down EASY tonight! Thanks Grandma for watching her so we could be in the hospital with Bella!

The Bad:

I wrote recently about the lesson I learned from Bella's birth. The lesson was that you can create and generate your future as much as you like, but in the end, you cannot control it.

Well, let's just say that today, I had a bunch of opportunities to practice owning what I learned.

Without going into a laundry list of "what went wrong today," We had several things either happen that were directly opposite of what was planned, or several things that didn't happen that WERE planned.

In San Diego, Ang and I were able to go into the O.R. and do dressing changes. Here, despite my repeated efforts to the contrary, only one of us was allowed into the O.R. Ang and I generate some serious synergy when we work together. It's not that we can't do the work alone, it's that it's more than doubly good when our teamwork and creativity is allowed to combine.

This was especially important today as we were going to have to wrap Bella's Hickman ourselves, and spent a chunk of yesterday in training and on the phone with other BMT parents about best practices for this. Well, after all that, it was just me in there. The dressings went fine, but it took some second and third tries in the recovery areas before we were happy with the initial strategy for managing this giant tentacle sticking out of Bella's chest.

In addition, the way the line was placed left no room for a particular technique the doc who placed the line, Dr. Acton, encouraged us to employ, which was to coil the extra slack in the line before covering it so that if it gets tugged, the slack takes the trauma, not the delicate umbrella holding the line in under the skin. Well, when I walked into the O.R. after he was done, he left me exactly NO SLACK whatsoever in the line. I now had nothing to work with to ease potentially "unplanned exits" of the line. Not only is there no slack, but it was placed so close to her left armpit that the line just hung down between her arm and torso. No big deal except it has two really sharp clamps sticking out of it that will just shred her upper arm and torso unless it just gets tugged out the first time she reaches across her torso with her left arm.

On top of that, the dressings we ordered in advance to cover the line were not present, so we had to gerry-rig the dressing with leftovers. NOT part of the plan.

Then, the line got a clot in it. It took another 3 hours of trouble shooting and drug administering before it got cleared. They told us it was a 2 hour procedure, but that we should really plan on more like 3 or 4. Well, we checked in at 6 and walked out a 4 this afternoon. 2 went to 4 went to 10 hours just like that.

All's well that ends well, because we got our hands on a catheter pouch that wraps around Bella's torso and velcro's safely in the back. In the front there is a small pouch with another piece of velcro to help keep the catheter protected inside it. I'll take a pic tomorrow and show you what I'm talking about. Bella is out cold and I don't want to disturb her. So, the line is safe, and she is safe sleeping with it for now.

Wiped after 10 hours in scrubs...

Providence Story of the Day:

Remember these? :)

This is really two stories, one of which I forgot to share a few weeks ago. It is perfect that I forgot because when combined with what happened today, its power is exponentially increased.

Okay. First story: For those of you that don't know, I am a huge soccer fan, and still play as much as time will allow me to. It is the diversion that my brain needs to switch off for 2 hours at a time and take a break from the enormity of caring for Bella. For the 2 hours that I play or watch, I am totally focused on the game, in the zone, whatever phrase you want to use. When I finish, I feel totally relieved of any stress I brought into the experience. This is the true meaning and purpose of recreation, or re-CREATION. I feel alive, renewed, rejuvenated, even if I pick up a knock, strain, or "boo-boo," as Ali says, along the way.

I play soccer with a group of Persian men in Irvine on Sunday afternoons. I started playing with them a month or so before Bella was born at a particular field at a particular time. Then, due to dealing with Bella, it took several months to get back out there. Well, when I finally returned, they were gone! I was crushed because I never bothered to get anyone's phone number, so I lost the group. This really bummed me out because Sunday afternoon is the perfect time for me to play with my schedule, and it's pick-up, not league, so if I miss a week, which I frequently do due to travel and work, nobody ends up in an uproar. Anyhow, I returned home dejected. About 8 months later, I ran into one friend who I used to play with and one of the guys from that group! They had moved to a new field only a mile away, but you cannot see the field from the main street so when I went looking for them, they were hidden! I resumed playing with them this spring much to my delight.

Then, it happened again. A few weeks ago, I showed up at the field, and they were gone. Again! I just shook my head because of how long it took to find the group last time. I started driving to the old field where I first met them, and on the way, I said to God, "Please? Please let me find them. I really don't want to lose these guys; they are the medicine I need!" I drove to the original field. At the 4-way stop sign next to the field, I could see plainly they weren't there. I looked to the car at the stop sign waiting to cross from my right. Then, I looked again, completely amazed, because in the driver seat is one of the guys from the group! In fact, he and I played side by side as central defenders just two weeks prior! I rolled my car into the intersection, and rolled down my window and took off my sunglasses so he would recognize me. He did, and rolled down his window as well.

"Where are we playing?" I ask.

"Oh hey! What's up dude? We are at IVC, bro! (Irvine Valley College)"

I remember that this was the back up field HE told me about just 2 weeks ago that completely slipped my mind. However, he was driving northbound, away from the field.

Here's where it gets really interesting...

"Well, where are you going then?" I ask quizzically.

"Bro, I'm not even playing today, I was just on my way home!"

Over 200,000 peeps call Irvine home. It spans about 65 miles. What are the odds of bumping into THAT guy on THAT corner at THAT time? Someone ask Richard Dawkins to get back to me on that one.

Story Two:

On Saturday, my friend Logan accompanied me to a local brew pub to watch the USA play England in the World Cup. The bar hosted a big outdoor BBQ complete with beer tents, burger tents, a stage with bands, and a huge jumbo-tron to watch the game. Never mind the inside of the pub was packed tighter than a general admission rock concert. As we were in the burger line, I struck up a conversation with a guy next to me in line. One of the prayers/intentions I put out there before going was that since I would be in a tight mix of like-minded peeps, perhaps I might "bump into" someone who might lead me to some local soccer playing here. (Better believe I brought all my gear to MN) Anyhow, I start talking to this guy and he asks me if I play.

I say, "Yup. Goalie and central defense." (most guys HATE playing these two spots and feel penalized if they have to... me, on the other hand, I love these two positions.)

He looks at me a little shocked and says, "Me too! Wow, that's weird." I thought so, too. Anyhow, we shoot the breeze for a few more minutes and then split off on our own ways.

Fast forward to today. At the end of the day, as we are walking out the lobby, I told Ang I NEEDED Starbucks and that we are making a much needed detour before walking home. She asks me to pause as she stows her jacket, and in doing so, we slow down our trot enough for me to spy, around the corner, a milk thermos, much like the stainless steel ones you see adorning the condiment bar at Starbucks. Immediately, I realize there must be some lobby coffee bar, so I round the corner thinking I'll just get my coffee there, and who is standing there next in line?

Yup. The guy. Today, he's all decked out looking all professional. He turns and looks at me and we stare for a second knowing we know each other. I walk up and say, "Were you at Nomad (the pub name) on Saturday?"

"Yeah man, wow! Hey, how's it goin'? What are YOU doing HERE?"

I break it down for him and give him my card. I tell him about Bella and that I am seriously in need of hooking up with some soccer to keep me balanced through the journey. He tells me his name, Maurizio, and says he'll ask his coach if I can come practice with them at least, and if nothing less, we can hook up to kick the ball around.

Now, I don't even know how to do the numbers of probability on this one.

Anyone get the sense that God is listening?

I am unapologetic in my love for this mostly foreign game to fellow Americans because I know that it is good for my physical and mental health. God literally knows this and knows my heart. He knows I don't ask for much, but to be able to run and cheer like a kid once or twice a week. This, he can do. I know it just makes him smile to see me so happy. I know it just makes him smile when he sees ANY of us happy. Joy comes in many shapes and sizes.

What brings you joy? Please share with us in the comments box!

The Night Before Work Up...

...and all through the house,

not a creature was stirring,
not even Ali.

She was successfully run into the ground this afternoon at my friend Logan's house. For those that may not remember, one of my good childhood friends from little Redding, CT (home of 7,000 when we lived there) relocated out here and is a researcher at U of M and actually works with Dr. Wagner. Logan invited us over to his house for a BBQ to welcome us back and give us some good midwestern lovin' (read: lots of food) before "it" all begins tomorrow. He also invited another friend of his and his family. Logan's friend Mark is also a guitarist and songwriter, and is a prolific songwriter for Songs Of Love (www.songsoflove.org).

I happen to be on their newsletter list after meeting the founder, John Belzer, over email a few years back at the end of my music therapy degree. Essentially, his mission and mine are the same. I say, "Heal the Planet with Music." He says, "Give a Song today, Change a Life Forever." Think we're on the same wavelength? I can't remember who introduced us, but we are kindred spirits, and Mark is one of the early and more prolific songwriters for Songs Of Love. To date, he has written over 40 songs for kids or teens going through intense physical or emotional times. The healing power of music comes in many shapes and sizes.

Anyhow, it was a wonderful day, there were 5 kids running around playing and having a ball, 7 adults enjoying each other's company, and 1 baby discovering her talents on the keyboard....

Man, she took to that thing like a fish to water. It was AWESOME. By the end of the day, we "borrowed" the princess keyboard from Ellory, Erin and Logan's little girl, then hit Target looking for our own. Well, we found something even better...

wait for it...

wait for it...

That's right (Sara, eat your heart out), it's a Plex Keytar from Yo Gabba Gabba and it is AWESOME.

What a great way to go into this week. Totally connected to Family, totally connected to Friends, totally connected to Faith. Thank all of you who have emailed and commented in the past couple of days with your prayers and intentions. You KNOW they made all the difference a year ago. You continue to hold us up and keep us strong as we enter this strange bubble of BMT. We know we do not travel into this alone. We have our Three F's; (Friends, Family, Faith) they literally have all shown up this weekend to send us into the clinic tomorrow morning feeling totally supported. Thank you.

Epidermolysis Bullosa can be looked at as a cruel disease, but when I look at it, I see so much love, faith, and generosity from near and far, from old friend to new acquaintance, I CANNOT see anything but blessings all around us. This is not to say there isn't pain, stress, grief, anxiety, fear, exhaustion, and everything else that comes along with this debilitating disease. TRUST ME, the cost is ever-present. However, if that is all I looked at, I'd miss the gifts. The real gift? Having the choice to choose what to look at in the first place. For that, I am most grateful.

Tomorrow begins Day 1 in the clinic. Labs, consultations, tests, etc. from 9-3. We'll share much more tomorrow night. We go in your hands, in God's hands, and in each other's hands. I've never felt more proud to be the husband to my wife and the father to my children than tonight. Why? We are ready. We are as ready as we can be for this, whatever it may bring. We are ready, and we are not alone. What else could we ask for? Life is Good. God is Good. Amen, and Amen.



Good Night.

The Sienna has landed... in Minnesota!

I see you!

I want THIS one!

Well, I have to tell ya, I just took the most beautiful little drive...

It was so beautiful, I just kept on goin'.

and goin', and goin' and goin'.

Through endless dirt, and rock, and grass, and mountain,

The highway unraveled in front of me.

Above it all,

God's smile washed over me

in the form of an unending sky

so beautiful; like his love, it was endless.

Everywhere I looked, there he was.

I was never alone.

I saw hardly a car for hours at a time,

And still, I was never alone.

I took lots of pictures of him,

He smiled for every one.

God can't ruin a picture!

The ones that weren't so good?

Had too much of man in them:

The glare from a newspaper stuffed in my bag,

the side-view mirror, or roadside fence;

all useful for manly things,

but useless in a portrait of God.

And yet, it was the strokes of man's brush on God's canvas that made for some of the most compelling images. The juxtaposition of small amidst LARGE... We take up such little space in reality. We are so small. Yet we dream, we love, we live like we are gods ourselves.

I drove by a 70's porsche that was alone in a field in Idaho. Grass grown up through it, around it, over it. I thought of the self importance its owner might have felt as he pulled off the lot for the first time in it, or when he or she drove it down "the main drag," or pulled up to work in it.

Where am I going with all this? No where.

The girls playing in their room together the day before I left.

It was simply a nice reminder that though we are entering perhaps the most stress-FULL experience of our lives here in Minneapolis, we are but one family of over a half a million families that have come to this very hospital for this very procedure. Now, true, we are only the 11th family at this hospital with this disease to go through this procedure, but spending 3 days in God's glory reminded me that while we narrow our focus - the lense of our camera - for these next 4-5 months to a single hospital bed, God is smiling overhead of Minneapolis, and overhead of Fargo, and Bismark, and Butte, and Idaho Falls, and Salt Lake City, and Mesquite, and Las Vegas, and Baker, and Barstow, and all the way back to Orange. I realized that no matter where I went, there he was smiling over me. That was very comforting, since we are heading into unkown waters. I just spent 3 days in unknown waters, and he never left me for a minute. I know where he'll be for the next 4-5 months.

(Lot of masculine gender above - no disrespect - that's just the way it fell out of my head)

I took a deep breath as I walked toward the entrance of the Ronald MacDonald House (hereby called RMH), like a freshman about to walk into his freshman dorm for the first time. I wasn't even through the front door when I saw McKensie and her mom, Missy standing in the foyer. Immediately, I felt at home. For those of you that don't know, McKensie is a 9 year old girl with epidermolysis bullosa. They leave tomorrow morning back to PA to rest up and recover from a long, grueling, double attempt at BMT. It was an honor to meet them before they left; we are a small tribe, us EB families, so it's nice to connect physically, if only for a day. McKensie is such a trooper. What a journey she's on. That girl and her mom and dad have strength like you don't even know is possible. I saw it in all their eyes tonight. Much love and respect to you, Grays!

There are TWO NEW videos up on youtube for your pleasure by the way. One is a photo montage of my journey here and the other is a new video montage of Bella's first year that we showed at her birthday party!

P.S. If you didn't know, DebRA is our FEATURED PARTNER for the month of June! If you have been procrastinating buying Bella's book, wait no longer! 50% of proceeds regardless of how many or few books we sell this month go straight to DebRA!

Also, if you HAVE read the book, THANK YOU! I have received a lot of positive feedback. Thank you very much. I have a favor to ask anyone who has read the book. Would you go onto the lulu.com page and leave a review? It'll only take you maybe 2-3 minutes, really! Just click on the book on the right and follow the instructions on their page. It's really easy, and you don't have to write a book of your own, short and sweet is good, too!

I will be posting on a daily basis from here on out, so stay tuned!

Many blessings,

Tim

This was just too adorable NOT to include!

Happy Mother's Day!

Happy Mother's Day to all you moms out there!

Today, we shared the morning in a beautiful park in Huntington Beach with Ang's mom, brother, his wife, her mom and their two kids. It was a lovely morning filled with good food, kite flying, playground playing, and gifts. Ang is off shoe shopping, one of her favorite things to do if given a hall pass, while we watch "Yo Gabba Gabba" and "Miss Spider's Sunny Patch Friends." Ali and Bella can't get enough of Nick Jr. these days. I love giving Ang hall passes on the weekend to get out and just be. She gets so little free time; she's either working full time to keep the home fire burning, or cooking or bandages or laundry... it's nice to just switch out of 7th gear once in a while, right?

What is most amazing about Angelique is how well she manages moving between corporate guru by day, working out 5/6 days a week, then getting home and switching gears into cooking a wonderful, healthy meal for the whole family, giving Ali a bath, and putting Bella to bed every night. In addition to the fact that she does all that, it's how easy going she is moving between roles and how present she is in each situation she's in that is what is so beautiful about my wife. Ang and I really blur the lines of traditional gender roles of husband and wife (as do more and more couples of our generation), and this takes a lot of partnership, trust, respect, and communication. Ang brings all of that to the family with ease and a smile.

Angelique, it is a privilege to be your husband. I love you honey. You are AWESOME in everything you do.

I love you, too, mommy!

Here's an update from the Ringgold Clan...

This weekend Bella moved into Ali's old crib, and Ali got a loft, completely 'princessed out'. Thanks to the Thomases for letting us use their crib for Bella for the past year! It's really nice seeing Bella in Ali's old crib. It brings back a lot of fond memories. Ali's new loft is pretty cool, if I may say so myself. It took quite a lot of effort to transform it from the bare bones, blue, white, and raw pine loft from IKEA into the princess kitchen and tree house that it is now. Pimp my loft called earlier today to ask if they could feature it on their show. Just kidding.

Thursday, Bella, Ali, and daddy ventured to the San Diego Zoo for fun, discovery, adventure, and... MOUNTAIN CLIMBING! I say mountain climbing because the city of San Diego built this world class zoo in the steepest ravine known to mankind. The hills are pretty amazingly steep and big. So big and steep in fact that there are several "Watch out for runaway wheelchairs" signs posted on the hills. (Just kidding... not really. The words were different but that was the gist of it.) Now, tack on the double stroller full of a toddler and giant baby, and a diaper bag full of provisions, and lots of water and juice, and you get about 60 pounds of extra exercise!

The best part of the day (and there were MANY) was when Bella started crying and the GIANT panther looked up from his perch high above on the hill and licked his chops. The family standing next to us and I had a good laugh (mixed with nervous laugh) over it. I told them I wasn't above using my daughter as bait to get the lazy cats off their duff. It was right about then that they stopped laughing and awkwardly turned away.

What? What did I say? Oh well, can't take a joke, I guess.

Bella the mad scientist villain with her death ray stare... DON'T LOOK!

Friday, Ali had her 3rd swim lesson and Bella was SO ANIMATED the whole time. She loves when the bath is running and really loves being poolside for Ali's lessons. I think she's gonna really take to the water once her skin heals. Ali LOVES her lessons and is having tons of fun and progressing well.

Just imagining Bella in swim lessons doing what Ali was doing is so very surreal. Frankly, it's a mental chess match trying to measure ambition and hope for this clinical trial to be miraculous with the intense reality of the disease she has. How does one be ambitious AND content at the same time? Ambitious enough to dare to declare that "One day, Bella will look back on this and say, "Yeah, when I was born, I had this rare skin condition, but when they brought me home from the hospital, it just went away,"" and yet content in knowing that this present moment is all we really have, and that since we've already chosen to see her life and condition as a blessing, seeing her happy and animated NOT in the pool is okay, too?

Life can be a conundrum, huh?

The first Partner of the month check I got to write was to P.U.C.K. All from Bella's book sales!

Last but not least, Bella's birthday approaches! We are thrilled and blessed to be reaching this milestone. We recognize every day with EB is a gift, and some haven't gotten as many days as we have with their EB babies, so we are grateful. In lieu of gifts for Bella (we have already been given so many this entire year) we are asking people make a donation to a special program we have created.

We are giving away a copy of Bella's Blessings: a Humble Story of Providence to every family DebRA learns of who has a baby with EB here in the US for roughly the next 4 years. We are donating 100 copies of the book, and DebRA learns about approximately 25 new babies a year. They send out a "New Family Box" full of supplies and info to assist new families, and through this program a copy of the book will be included in that box! We received so much positive feedback from EB parents that we realized we wanted new families to have the info and experience and hope of our journey to support theirs.

We are also giving away a lot of great prizes (including free books) to those who donate at certain levels! Fun fun fun! Go to www.ebhope.com to read our funny entry levels and prizes!

Thanks to all of you who have supported us throughout this past year; our lives are enriched by your presence in it. We are blessed by you. Thank you.

Gotta love this sequence from Physical Therapy the other day... Bella's first High 5's!

Ronald McDonald House, Here we come!

Quite the little airline traveler, stole my seat AND my hat!

Well, we're back from another trip to MN.

This time, it was to scout out lodging for the rest of the family Bella's BMT this summer. We flew in Friday evening, looked at 5 different properties Sat, and flew out Sunday morning. Oh, and we even planned a dinner party at the Mooreland's (founders of PUCK) on Saturday night! WHEW! Ali hung at out grandma's and Bella, mommy, and daddy made the trip. This was Bella's 4th airplane trip in her first 10 months! She's pretty easy to handle, but she is SO BIG that we can't do the lap thing any more! Holy cow, you should have seen her stretched out while napping. Our arms nearly fell off from the weight alone! Never again.

We checked out all different shapes and sizes of living arrangements. We saw brand new lofts downtown, an extended stay Marriott, the RMH (Ronald McDonald House), and two apt. complexes in St. Anthony, the town adjacent to the University just to the north. Like anything, there were pros and cons to all of them. RMH, though made it on both of our top 2 finalist lists immediately, and then from there is was an easy pick.

What's funny is that neither of us at 9 am were thinking about RMH as an option. That changed the moment we parked in front of the house.

First of all, it is across the street from a quaint little park and walking distance to the hospital. This means, that when we have to go back and forth for tests after discharge, we won't need to ride a shuttle or public transportation, which is a good thing, since Bella's immune system will be next to nothing.

Then ,we walked in through the front door and Ann, the weekend manager greets us, takes one look at Bella, and says, "Now let me guess, EB." Then she proceeded to speak personally of her affinity for each other EB child that has stayed there during this clinical trial by name. No explaining to do here.

After brunch, we toured the house... I mean HOUSES. Technically, this RMH is 4 houses connected by one massive first floor. Yet, every inch is cozy and comfy feeling. This is the complete opposite of the DORM we stayed in in San Diego atop the parking garage for Bella's G-Tube insertion. Night and day, folks. We were amazed by how different (and better!) this RMH was compared to San Diego.

I could go on and on, but suffice to say that this property is like a mini Disneyland for Ali. Also, the kindercare Ali is going to go to is also within walking distance of the house! Ang is going to work from home 4 days a week, which means she can walk Ali to kindercare, walk back, and work from our special, giant BMT suite we'll be staying in, and she can cruise over to the hospital to bring me real food (are you reading this, Angelique? wink wink) for lunch, then walk over to pick up Ali, and have dinner prepared every night of the week with Brunch on the weekends as well. Aoh, and Ali gets movie night twice a week complete with free popcorn in their own in-house theater room! KILLER. Good stuff all around.

Bella knows she can always lean on her big sister...

We are really excited, and quite frankly, I am ready to pack the minivan today and go. We are waiting till June so Bella can have her first birthday here with so many of the friends and family and faith community that helped her reach this milestone. Frankly, most first birthdays are for the parents for surviving the first year, but this one truly is for Bella. She's the one who's done the surviving. She is as strong as an ox and while she deals with blisters and teething, she is still sweet as a peach...

...until bed time... she reallllllly doesn't like the sleep thing. Someone actually called the front desk to complain at the hotel because she was WAILING at midnight for so long, that a neighbor thought she had been abandoned. No, really. The girl at the front desk said when I answered the phone, "Oh. there IS someone there with the baby. Okay, thank you." and hung up. Really. Not joking.

Get the coffee in the pot! Daddy's a grumpy bear without it!

We also want to close by saying thanks to the following people: Grandma and Grandpa, Joe Polish, Paul Ringgold, Jackie Gardella, members of the Disciple's Women's Group at church, and the anonymous donor from Harbor Christian Church. These people all donated cash or frequent flyer/rewards miles/friends & family rates to help us on our two trips to MN and one to NYC. Each trip we took, someone or ones stepped up and volunteered to help us along the way. There have been COUNTLESS examples of this generosity these past 10 months, but we just wanted to publicly acknowledge that these trips were made possible through the love and generosity of these folks. It really does take a village to raise a special needs child, and thank GOD, we have that village. What's really cool is that this village is stretched across the map, and thanks to the internet and email, we can be connected and reach out into each others' lives to lend a hand when a hand is needed. Thanks again. We promise to pay it forward.

Last but not least, if this series of shots doesn't melt your heart, nothing will...

Picture Essay from Bella's G-tube Insertion

Hi all!

Tonight's post is a little unusual. I am posting all the pictures from Bella's G-Tube insertion back in October. There is another EB Baby having one placed at the end of the month, and the family is not as lucky as we were in that their hospital doesn't have 30 years of experience operating on EB babies. So, we took tons of pics during Bella's procedure to share with the community. Originally, we took them to share with our local hospital, CHOC (Children's Hospital of Orange County), so CHOC could develop an EB surgical team, but then I got busy. At least all this work can now be used THIS MONTH somewhere else in the country, so it wasn't all for naught! Here we go:

Items to assist in securing intubation to face. I believe that is vaseline infused gauze.



Front of their EB cart that resides in the O.R.

How awesome is is that they have a dedicated cart???

Top of cart had supplies prepped for surgery. Here's a sneak peak at what was underneath... First up, bottom right corner.



Top right corner



Top left corner

Bottom left corner

Bottom Drawer... EXPOSED!



Specialty Dressings... UNDRESSED!

Dressings Drawer... what would be witty right here?

Wound Care Team. We convinced them to let us do Bella's bandages while she was under sedation. They were a little hesitant at first, but we apparently appeared "on it" enough to get access to the O.R. It was AWESOME. Ang and I make a really good team. The O.R. team was really impressed. That made us feel really good. That's a pretty qualified opinion!

Bella going under. Mask was covered in aquaphor before placing on her face. I sang to her during the process her Birth Song, and I didn't even get to the chorus before she was OUT.

Close-up of intubation set-up. There were no injuries to her head, face, mouth, or esophagus as a result of the procedure. Good job, docs!

Different view of head dressing. You can see the foam pad and air pillow better from this angle.

Close-up of surgical site. Incision was made for G-tube as well as second incision to anchor it about two inches to the center. Mepitel was glued over surgical incision and stayed on for several days. No harm done, scar healing nicely. We now use mepilex lite under button to protect against friction and absorb any drainage as the opening healed. It oozed stomach juice for several months at a slowly declining pace until now where it hardly oozes at all. We still clean the site daily with a Q-tip dipped in 50% water 50% hydrogen peroxide. the dark spot to the outside right of the button was a blister she had going in to surgery that was totally unrelated and ended up healing fine with no scar.

Little cherub out cold after surgery back in her room. Notice the IV placement was in the right foot, and yes it is a bitch for EB kids and yes they deliberated long and hard over where to do the IV. They did not use sutures to secure the IV, although (pardon my french here) an ASSLOAD of that gummy wrap you see above was used over a CRAPLOAD of rolled gauze to try to keep it in place for as long as possible. We had to do a cranial IV the week prior at CHOC (had to do three different placements as it kept coming out due to Bella being a squirmy (read: normal) baby. That SUCKED. Each placement took like 4 of us and never got done in less than 2 hours. Ugh. THIS was MUCH better. It stayed in till it could be D/C'd . How did it NOT get yanked out, you ask? ...

...because the poor girl was tied down for the next 3 days practically! No joke. Look at how each appendage is secured so that she won't a) wreck her IV and b) wreck her new button. She was a trooper through it all. Didn't hurt that we kept the happy drugs FLOWIN'. No time to be puritan about pain meds as discomfort causes maximum squirmitude. Yes. That's a word. No. you can't use it in scrabble.

Here's the little trooper recovering well enough to have her arms released! (how nice of us, I know) I recommend lite under the button rather than mepitel as it often (as was the case here) got stuck to itself and would bunch up easily. Double sided tape will do that to ya!

Alright, I hope this helps those of you who are either considering this procedure or preparing for it. It was the BEST THING we've done for Bella to date. As Dr. Eichenfield, the eminent Pediatric Dermatologist in San Diego and resident expert on EB said to us,

"The key to EB is nutrition, and the key to nutrition it the feeding tube."

Before the tube, we STRUGGLED to get 20-24 oz a day into Bella, and I mean STRUGGLED. It was awful. Feeds frequently took 90-120 minutes and had to be timed so that Bella was dozing in order to tolerate the bottle. If she was too alert, no deal, and if we waited too long and she fell asleep at the beginning of the bottle, no deal.

After the tube, we got 30-36 oz a day into Bella without so much as a whiff of trouble. Any time she couldn't or wouldn't tolerate a bottle, NO PROBLEM, snap that tube into place and go! Late night feeds were done without having to wake her. That was awesome in and of itself! But most importantly, we got her caloric intake up above what her GI doc and nutritionist wanted, and feeding became fun again! No more knock-down, drag-out bottles.

Now, 6 months later, Bella is 90th percentile in height and weight and 110% Weight to Height ratio, which is RIGHT ON for a typical child at her age. In other words...

SHE IS THRIVING!

We are extremely blessed that all is going so well, and that all went so well with this procedure. We recognize and give thanks that we have walked through the Valley of EB with a lot of success to date, and do so humbly in the memory and in the face of so many other EB kids who haven't fared as well. We take our successes with thanks and humility with full understanding that at any moment it could all change for the worse. EB is like that. Every day is a gift. Period. Thank you all for walking the journey with us. If you are reading this, you are walking this journey whether you realized it or not. We see you there, we feel you there, and we give thanks that you are there. You lift us up when we are too tired. Thanks for that.

Blessings,

Tim