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!