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