Happily Ever After...

That I can do things in random order. So, after getting the camera from Ryan for the Mito walk, I finally swiped our Christmas and Disney pictures. I thought I'd show you our March trip first.  On the ferry over to Magic Kingdom. We brought our very own princesses. :)  Big brother ALWAYS willing to give a ride to a tired sis.  Gianna is ALL ABOUT the fairies. Shhhh..... I have no idea who we are posing with. Please don't tell her. Celia SHRIEKING Mi-ee's name. Minnie to the rescue. She looks stressed but she is really just so excited.  Sorry, but I may or may not be holding  a grudge against Mickey. There. I said it.  Our favorite ride is Toy Story. We rode it as many times as we thought was allowed. We left on a first name basis with the attendant.  Someone still believes in the magic. I love that.

Melts me to the core. Her chubby fingers are delicious. And her dimple is simply scrumptious. She is JOY personified. She is feeling better. We are SO thankful. Thank you for the prayers and concern. We still don't know why she was doing so poorly and her Dr. is concerned. They are watching the video I made, and trying to determine  if she was having clonic seizures  or what was going on and how to help her next time. Still, today.... We have our happy girl back. Thankful. So, so thankful.

Chillin' in style with our jiimmy-rigged umbrella. This is Carol. She made it on my blog because.... I walked up and saw all the families and..... may or may not have started the ugly cry. She was a volunteer who:  A) Saw this. B) Didn't walk away shaking her head at the lunatic. C) Hugged me. D)Kept nonchalantly checking on me  to make sure I held it together. E) Fell in love with Celia. SOOOOO.... We are BFFs now. And I let her hold my child. The end. I wanted  Celia to WALK across the finish line. Problem was, "the mile walk" was just shy of 1/2 mile. So, none of us realized we had crossed the finish line. I am all for recreating moments. We went back and got that girl outta her wheelchair. She proudly WALKED across that finish line. "Daddy I want to grow THIS tall" A late night of slumber-partying with her sister and an early morning. Need I say more? We walked in a "U...

Today was our FIRST annual Energy for Life Walk  to raise funds and awareness for mitochondria diseases. It was a humbling, wonderful experience for us to feel SO LOVED. Here is a group shot of almost all of Celia's Crew. Allow me to introduce the wonderful folks who took time out of their busy lives  to show support for our sweet baby.  Our Maggie, who loves Celia so much. She is family to us and we love her!  "Mr and Mrs D" who are dear, sweet friends of ours and  my favorite blog stalker- haha Rachel!  Truly genuine people who we are privileged to have as our friends.  The entire "A" family and one of our Pastor's son. They are a tremendous blessing to us and everyone who knows them. These folks are LOVE in action.  Mr and Mrs. "S" who are truly the most loving people. They can see past Celia's disability and right straight to the little girl inside. I love that. The fabulous "S...

Celia has not been doing great the last several days. I have a email in to her Dr. to see what we can do to help her, but she just can't seem to catch a break! She is now waking for several hours at night. She loves to wrangle those g-tube cords, so we have to get up and stop her feed until (hopefully) she goes back to sleep.Sometimes she will go back to sleep, and sometimes she is up at 3-4 AM for good.  And then we have to re-start her pump in hopes to get as much of her 10 hour feeding into her, in LESS than 10 hours. Her tummy can only tolerate a certain amount of volume per hour during the day without causing her gastric issues, so we can only replace so much of the lost night feeding. It's a losing battle, really. She is SPASTIC/ATAXIC(involuntary movements) in her arms and legs. Imagine clenching your arms and fists against your chest for hours and hours, or constantly moving/flailing/clenching your arms and legs. Exhausting and painful, right? She has started doi...

Hmmmm..... In the last week (or so) we have: ~Had Grandpa and Grandma come for an early Easter. ~Had an Easter with the Cousins party with crafts, cupcake decorating, and of course, an egg hunt! ~We  have also had another wonderful Geneticist appointment. Sigh... Bottom line is, she still is TOO SEVERE for the type of mito she has, so they know they are missing something and there is more to her story. She also cannot be potty-trained since her internal organs are hypotonic like her outside and her bladder cannot be held. Lastly, she has apraxia which means that she knows what she wants to say, but cannot verbalize the words. She has lost a few words that she used to say already and this will progress until she is non-verbal. They recommended getting a computer based program and begin teaching her to communicate by pressing buttons on her iPad. I can't even talk about it further, except to say. I HATE THIS DISEASE. ~Then we quickly loaded the car after her appointmen...

 I made homemade Reese Easter eggs. They are a bit lopsided, but taste just like the real thing.  Grandma and Grandpa came for a visit and Grandma made the girls these FUN crepe paper bunnies.  Isn't he cute? And the SUPER FUN thing is, as you unroll him, he has toys hidden inside. Celia's VERY BLURRY smile with all her bunny loot! Yes, I specialize in blurry photos. It makes me stand out from the rest. What a fun treat- Thank you Grandma for making these for us! We love you!!

 Celia likes to pester her sister.  They are almost always touching each other.  Or kicking, in Celia's case.  Or lovingly stroking her toes in Sofia's hair.  Or pulling hair when her fingers can get ahold of it.  She's pretty darn proud of herself for being a lil' naughty. It's a little hard to tell this face "No" We do try, however.