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.

BELLA IS TEETHING!!!

HAHAHAHAHAHAHA

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 painful...it really was about 90% pretty cool! Guys, don't fear Taylor's pecs! LOL

Okay. Gotta run. Thanks for being there!

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.

More Good News

Enjoy a 2 minute montage of our family's journey so far...it'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

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.

THERE'S NO WAY I CAN CONTROL THIS
THERE'S NO WAY I CAN CONTROL THIS
THERE'S NO WAY I CAN CONTROL THIS
THERE'S NO WAY I CAN CONTROL THIS...

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.

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.
Sincerely,
Tim

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.