Ch-ch-ch-ch-changes

Time to face the change...  wait wait, just looked that up - its actually "turn and face the strain" which actually may be more fitting.

Next week Sue goes in for g-tube surgery. There are so many many "what ifs" about what doctors call a "routine" procedure.

We understand that there is a possibility that she will not be able to swallow on her own after the surgery. Well, that's what the tube is for any way.  That's ok, I guess.  What I'm not clear on is if not being able to swallow also means not to being able to speak.  As parents, Rob and I are somewhat out of the practice with baby needs, and Cori's communication has become helpful and necessary.  When she was young it was so easy to anticipate...  now, not so much.  And her sweet sweet joyful smile and sense of humor that accompanies every spoken word is such a precious gift. A true treat.  I keep reminding myself to record the few words she can still muster. I will miss her sweet sweet voice so very much.

What if they are unable to remove the breathing tube after the surgery and she has to go in to ICU? They say this is rare, but that word means nothing to us any more.  The chances of MLD are rare - 1:100,000.  Please don't talk to me about rare. Edie had a 1:13 chance of being born with downs syndrome and she didn't. Don't give me your statistics, just tell me what can and cant happen and let fate be fate. I don't want your probabilities.

What if my employers aren't OK with me working from home?  I honestly never thought I would be a stay at home mom. I really never wanted to be. Now my heart aches to be with my girls and to be a work from home mom.

I don't know if its the medication that calms me or knowing that we have no control and whatever will be will be calms me.  All we can do is love our daughters, snuggle them, explore every option to provide for them and trust that the right path will be put before us. If we turn to face the strain with the confidence that we will make it through alright, it will be. It make suck and be dreadful and completely change and turn our worlds upside down, but in the end, by His grace, we can embrace whatever it is we have been called to be on the other side.

Sock Hop

The night Rob and I received the phone call confirming the diagnosis, the first thing we both thought of and agreed on doing was to take the sisters to Disney. We had talked about taking them when big sister was maybe seven and Sue about 5, thinking at that age they'd fully understand and remember the experience. And we could save for it....

When we began telling the family about Cori's diagnosis and prognosis, we always mentioned Disney  and really just thought we'd wait till some point in the year after our tax return. 

A little before Christmas the planning got pushed a little and it was determined the sooner the better. We really had no idea how fast she would progress, so let's go ASAP while she still can react to most of what's going on and enjoy it!! 

The more we began planning, we knew it should be a surprise and really, you can only spell D I S N E Y so many times when 15 people are traveling and planning together. So Rob, our infamous name giver... ie paci's called Hermann... and 50's nostalgia lover, dubbed the trip the Sock Hop. The kids literally have no idea! 

FF>> 1.9.14

The girls did SO unbelievable great on the flight. So great!!! 

The airline did leave our one checked bag in Houston, but hey, the car seats made it and we should have our luggage by the end of the day!! 

Cori had a super hard time going down for her nap, but big beds kind of freak her out. Finally got a crib and she should get some great rest!! 

Jury is still out on how to surprise the kiddos with why exactly were in Florida and not going to the beach... 

Hopefully we'll have a video to post later!!! 

And can not think all of our wonderfully kind and generous family and friends and Give Kids the World for making this happen!!! Looking forward to making some incredible memories in the gloriously old-people filled, sun shiny state!

Super Productive Day Today!!

Today's Accomplishments!

> finally got double confirmation that I will receive my work laptop tomorrow so that I will be able to work from home when needed. A little bribery never hurt anyone... Well, let's call it a motivational treat ;) 

> started printing docs to track and understand all the different terms and words used to see if there is wiggle room in tests and results for different diagnoses... or prognosis if were being totally honest

> received the first call from our case worker today who is very kind and Irish and sweet and gave us some very very very helpful and comforting and supportive information and resources. 

> started calling foundation-suggested docs to get more information and guidance. Finally landed a conversation with a real person and was directed to the number one expert (left a voice mail for that person...)! 

> got an appointment with a new dr for December 5th. Sinterklaas. I hope I have time to make it to the little Dutch girl for treats to share with our new family that day!! 

Kid quote of the day

Edie, this morning as I'm literally about to walk out the door, yells "mommy, mommy!" from our room, which is in close proximity to her sleeping sister. Headed back to our room as her father and I both "sssh" her...  I sit down on my bed beside her and ask "yes, love?"  She reaches over and touches her pillow ... "Mommy, this pillow is bigger. It's bigger."  Bigger than what I do not know, but it was breaking news at the moment that couldn't be held... 

When I get Cori dressed for bed she requests songs. 9.9 times out of 10 it's twinkle twinkle little star. (All stars are referred to as twinkle twinkles now. Living in Texas, Cori says twinkle twinkle a lot).  Tonight she requested " h i j k!"  "ABCD?" I asked. Yesh, she nodded. (That's "yes" as spoken through a Hermann). And sure enough she sang all the letters right along with me and smiled so big when we got to H I J K. Apparently this kid has an official favorite part of the alphabet! 

Gotta love these littles and their -ism's! 

Road Trip Randoms

--4:00am up and at em

-4:40am rolled out of driveway 

- feeling like an adult with a family, making  those memories that will be told to future generations! First road trip, first twilight exit, first family vacation!!  What's even more amazing to me is how quickly you can get out of the house when you actually take time to plan ahead and prepare and pack early... Which also leads to over packing and a very full car!

- there is a giant We {heart} Houston sign off of I-10 in the heights!!! Must go back to take pics... Feeling kinda silly because I pass that intersection twice a day, every day on the bus to and from work, but am always on my phone wasting time instead of looking out the window! Must pay more attention... There is way too much development going on right now!

- it takes about 30 minutes flat with no traffic to cross Houston (from beltway W to beltway E)! Wondering how that compares to other cities?! - update: and about a full hour from grand parkway w to grand parkway E! Dang!

- haven't seen the east side of Houston in a very long time. Last time I remember being out this way was around 1997 or 98 going to Beaumont for the BFF Amanda's catholic confirmation!! 

- thought for sure leaving before 5am the girls would go back to sleep... Cori started talking the second I put her in the car and as of an hour later is still up and asking for snacks! Daddy quote about C: "F-it, I'm up!" Edie asked questions non-stop for the first 40 minutes until we told her it was time to rest... then fell right back asleep! 

- 6:03am Beaumont! Cori finally back asleep after 3 mini muffins! Dusky- looking forward to the sunrise soon!

- 6:18am both girls awake :/ Edie asks "is it morning?! Can I have my snack now? Are we there yet?!" ... Ha! No.

-6:33am Louisiana!! First movie: strawberry shortcake berry merry christmas- not my favorite... 

-6:40am first peek at the sun!

-7:25am first pit stop Jennings,La, second movie meet the robinsons, switched drivers... My turn!

-10:30am second pit stop + gas this time in Slidell,LA! Wiggle and play time at McDs! Finished movie #3: Lady and the Tramp II! Beautiful, peaceful drive through the swamp (everyone was sleeping!) and lot of big, cool bridges!  

- 12:00pm Biloxi, MS! Rob and I have been singing Biloxi Parish by Gaslight all day! Movie #4 Aristocats! E's favorite!! She's finally starting to sing along to the songs too!! Post lunch everyone is full and happy and will hopefully be napping soon!  "Amelia!" (My fav line from uncle Waldo in Aristocats!) Hehe

-12:34pm! My favorite time! Only 3 hours left!! 

-1:11pm Mobile, AL! Did you know?-Greenbow, AL is not a real town :/ Rob and I big kinda bummed about that! Movie #87 Cinderelllllah! High 5 to Mobile for a pretty cool looking downtown and an awesome tunnel!!

- around 2:something we made it to Pensacola and against some good advice to stay on 10, I persuaded Rob Togo south so we could enjoy the coast and thought E would like it too. E was asleep about 3 minutes before we saw the water, and then it took us 2 hours to go 80 miles :/ will listen next time! 

- 3:45pm Made It!! The second we got there E was whisked away in the golf cart with gparents aunt uncle and cousins for sno cones!  Later we went down to the beach and E was fearless in the surf with her lifevest and Daddy!! Cori and I put our toes in sand, but she wasn't a huge fan. Then after a big family spaghetti dinner with all 13 of us and the girls both making happy plates, the three big cousins are sleeping in the fold out sofa together! 

Very much looking forward to spending the next few days with this big house full of family and celebrating my father in laws 50th birthday with family portraits on the beach tomorrow!!

Dear Blog,

I think about you all the time.

I very much enjoy reading other friends blogs, and I'm guessing there are perhaps a handful of people out there that might enjoy updates to this one! 

There are so many fun things that happen during our days that would be so fun to document and remember! Behind the scenes of Facebook posts, and the many exciting documentable things that don't make their way beyond my eyes and mind. 

That was the whole point of this blogging adventure- to remember and to share with our global village. 

This is the wake up call, the reminder, the motivator!! 

See you again very soon! 

buff

as in "In the...

this beauty has been hanging above my bed since I was a freshman in College. i found her at an art fair and couldnt leave without her. she's damn near life size.

edie thinks this is ariel, the singing mermaid princess.

since she was a baby, this gal has always had her attention.

first it was the difference in texture from the wall to the poster when edie was able to stand on our pillows and reach above the head board.

then it was her hair as she learned her colors - e would say "she has hair like edie!"

enter the 3 year old observation:

"i think ariel needs to get dressed" 

...  nah, not today ;)