Happily Ever After...

 In pre-op with her new IPAD to keep her company.  Kisses from Mommy and Daddy to send her off to surgery.  Not happy..... It was a rough first day for our little princess. Pain control issues, her oxygen sats kept tanking and she did not tolerate the first meds put in her g-tube. We are praying that's not a pattern, but her tummy has to "wake up" and so far it has shown it's still fast asleep. Kids like her can have GI motility issues which can go from bad to worse. We are praying that her tummy is just sluggish, but will tolerate the Pedialyte that they will try tonight. Until she can tolerate that, she cannot progress to formula. Since we are stopping all oral feeds for at least two weeks, we really need her to get that tummy going so she can get some nutrition.  Her new Mic-Key button. She had her stomach stitched to the opening in her skin, so that if she has leakage, it won't be into her abdominal cavity. OUCH. Mito kids can only tolerate ...

I like to compartmentalize.  I am getting really, really good at it. Situations go in a box on the shelf  and stay there until I am ready to deal with them. So instead of stressing  thinking about surgery tomorrow for Miss Celia, I am reviewing thousands of wedding pictures. And I thought I'd share...... It was a magical, fabulous day.

 My sister bought Celia this SUPER HUGE pillow pet to recover on after surgery. She thinks he's pretty awesome, and she even willingly tolerates "tummy time" because she likes to grab his ears. SCORE!  Gianna got the tape off her back, which means two things: It's been four weeks and she is infection free- Halleujah!! and, We eat ice cream to celebrate. (Oh, and we did a little jumping on a giant pillow for good measure) Speaking of giant pillow.... Celia STILL wants a giant $10,000 pillow in her back yard. Hmmmm...... Sofia wasn't overly thrilled with the wobbly pony ride, she has more refined tastes and likes the real version, but Celia was all in to petting him. In the tricycle race, Gianna led the pack! She had a blast. My long-legged girl humored her sister by playing along, but her knees just kept hitting the handlebars. THIS is what Celia thought of the hayride. ZZZZZZZ..... I think she's dreaming of giant pillows :) ...

We have had another amazing week with God revealing His love for Celia over and over... ~A story that I don't ever want to forget, but didn't want to embarrass my boys to share. I decided that I'd risk their embarrassment for this precious story: When Celia got her Ipad, I immediately texted the boys to share her good news. Justin called me, and says with a trembling voice, "Mom, we didn't want to say anything but Ryan and I have been trying to get Celia an Ipad for a few weeks now. We just didn't have enough money, so I told Ryan I was shipping mine to her tomorrow." Two 20-something age boys who tried to pool their resources to get their three year old sister such an expensive gift. And when that failed, being willing to so freely give away what he saved up to buy and needs for his work. Can I tell you how much that blesses my heart?!? What a precious gift that all the girls have been given in those big brothers of theirs! I love you both boy...

You know how things can be SO HARD sometimes, and life seems dark, gray and blah? Well, to be honest, that has been our life since we got Celia's diagnosis on September 20th. Lots of tears, lots of questions, and frankly, some frustration that God allowed our little girl to be sentenced with this horrible disease. Keepin' it real folks. It. hurts. Getting her swallow study reports and stopping her feeds, looking for a GI guy and firing her school for neglect have just compounded our rainy day feelings. And to be gut-level honest we feel alone in this most of the time. It is one thing for folks to "say" they are there for you, and a totally different other thing for them to stop what they are doing in their own busy lives to cry with you, help, and do whatever is needed to lighten the load. This past week, God has really used people in a BIG WAY to show us that we really aren't alone. ~Our big kids (aka the grown ones) who are the only ones who ...

Remember I mentioned the squirrel family who was relocating to our attic?? Apparently, the move went well. They were SO HAPPY about their new digs, that they were too excited to sleep. So they scratched, and chewed and partied all night long OVER OUR BED. Let me repeat that: ALL. NIGHT. LONG. OVER. OUR. BED. Yep. And, since we weren't really thrilled with THAT idea, a "WAR of the RODENTS" ensued. In the "Battle of the Bed Phase One" there was: Lots of banging on the ceiling. Lots of scratching, chewing and running back and forth ignoring the banging. A few stomping trips to the attic at 4 AM for Man vs. Rodent stare-downs. There may or may not have been peals of laughter from said rodents as the attic door slammed shut. "Phase Two" consisted of putting a radio in the attic for the noise to scare them away. It gave us YET ANOTHER reason not to sleep. Who knew squirrels could chew and scratch and scamper to a beat??? Suffice it t...

 We went to our FIRST EVER corn maze with the kids. We had such a blast! We split up into teams and it was amazing how quickly you could get lost.  Sweet Celia kisses for Mommy.  Jumping on a giant pillow on the ground. Shhhh.... Don't tell Gianna's Dr that she did this at all, let alone 2 weeks post-op.  Celia wants a giant pillow for Christmas.  I want to get her one, so I can see her belly laugh like this everyday. Except I checked and they are $10k. Soooo... Maybe not. Beautiful Biggies Delicious Twinnies. "Do I really have to sit on all this scratchy stuff?"   "Why am I posing with a vegetable?!?" HA! Gotta love a girly girl!!  Our attempt at a family photo. Two are missing- Love you Yo and Regina! And yes, I realize(now) that Celia's flashing her tummy. Wardrobe malfunction. Mom's fault. It was a SUPER FUN DAY! And much needed after all this medical stuff. ...