Gianna

 Feminine.
Sweet.
Snuggly.
Tender-hearted.

Gentle. 
Thoughtful.
Precious.
Compassionate.
Beautiful.

Brave.

Surgery number 7 is on Friday.
(Because we don't have anything else going on....)
This time, I am taking her and Daddy is staying home with the other 3.

We usually wait until we are close to tell her we are going.
So basically, we stall until the day before the trip.
To keep her anxiety level down.
And mine.

Yesterday, out of the blue she asks, 
"Mommy, how many sleeps until my next surgery?"

Without ever being told, she knew.
And is okay with it.

Amazing.



Comments

  1. KSeptember 25, 2011 at 2:48 AM

    Have you shared what condition Gianna has in a past post? I'm not sure what she's dealing with, but she's in my prayers and I think she's very brave to have already undergone 6 surgeries and be facing even more.

    It's easy to read a file and see a picture and tell ourselves, "We can handle that." Then we meet our children and hold them in our hearts and arms and then the reality hits and our hearts are torn out as we learn the full ramification of it all means for them and us and our families.

    I'm praying for healthy cells, brave little girls and skilled doctors and surgeons!

    ReplyDelete
  2. Lee AnnSeptember 25, 2011 at 8:23 AM

    I had no idea it was time for Gianna to have another surgery. Bless her precious heart and yours. We are praying for your sweet family. Gianna is so strong and approaches life with such grace. You have amazing girls and your amazing girls have amazing parents. Hang in there. His grace is sufficient! His mercies are new every morning ( Praise God, right! Glad He doesn't give a week at a time- I'd use it all up on day 1) ;) You are in our prayers!!

    ReplyDelete
  3. NavhelowifeSeptember 25, 2011 at 9:22 AM

    Wisdom comes in many shapes and sizes, doesn't it? What a splendid little girl she is!

    ReplyDelete
  4. KSeptember 26, 2011 at 4:06 AM

    I've been racking my brain, trying to come up with anything that might help Celia. A thought came to my mind: Her immune system must be phenomenal since she grew up in an orphanage. My own daughter gets over colds much faster than my daycare kids and doesn't catch as many either. However, since mito disease is progressive, perhaps she hasn't been put to the test yet and she's at a level where she can cope with normal childhood ailments.

    That said, it sounds like every single thing that Celia ingests counts. Do you have a Vitamix blender? Or something equivalent? I know from reading another blog that if you contact the company, you can get a refurbished one greatly disounted. What interests me about this blender is that it breaks food down to a cellular level. I understand that it's within the cells that the mitochondria don't do their job, but if food is easier to absorb, them more can be absorbed and, of that, perhaps Celia's cells can have more to work with.

    So, instead of plain milk and water, or whatever else you give her to drink, add a handful of raw veggies and fruits. Learn what foods work synergistically for maximum absorption of nutrients. For example, iron isn't absorbed without Vit. C. I boosted my daughter's caloric intake this way without diminishing her appetite for meals. Only then, did she gain any weight.

    Now, Celia has gained quite a bit of weight since you brought her home, has this continued?

    After thinking about the movie Lorenzo's Oil, I can't help but think that there is an equally simple solution. How to heal mitochondria? How to make a body make cells with healthy mito? How to create a nutrient that unhealthy mito can "digest?" How to trigger unhealthy mito to create a more simple fuel, something within their limited capability...?

    Part of me feels riduculous for thinking I can out-think the educated specialists in this field, but, again, when I think of Lorenzo's dad and the lives he saved, I know that it can happen to anyone. Sometimes those trained to the highest degree overlook the most simple solution.

    Can healthy organ cells from an identical twin (if the girls are identical) trigger the growth of healthy cells within that organ?

    Could this possibly be caused by a virus or bacteria yet unfound? Remember the breakthough in Australia with h.Pylori, the bacteria that gave people ulcers?

    Is there an enzyme that triggers the mito to make "fuel" that isn't working right? I wonder what the mechanism of exchange from fuel to energy is. In what form is the energy? Can electricty or something else be used to stimulate the healthy mito to compensate?

    So many questions and unknowns...

    ReplyDelete
  5. Grandma and GrandpaSeptember 26, 2011 at 2:24 PM

    What a beautiful, brave, smart, precious young lady she is. It is hard to believe that this is surgery number 7. She has been down an amazing path, a path that that few have trod, and one that continues to prepare her for a future that God will use mightily for His purposes. Our prayers are with you as you travel.

    ReplyDelete
  6. ChelseaSeptember 29, 2011 at 9:23 PM

    Since when did Gianna start modeling??? We love you! Love the Marrieds!

    ReplyDelete

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