Where we are...

I was 100% certain and convinced (faith) that Mic would gain her oral skills through the therapy we did with her and that soon...very, very soon we would be kissing that g-tube a sweet goodbye! I had an open mind as to how and when that would all happen, but I knew it would be soon and did have a time cap in mind.
In the process in some ways the tube became the enemy. Something to be shaken off and freed from.
There is an ever working, ever changing battle in my mind and emotions as I deal with different aspects of Mic's eating impediment. So here I am, trying to put the latest round into words...
...I cannot, I will not let that faith, that belief die. The certainty that someday she WILL sustain her life just as you and I do, 100% oral.
The latest adjustments in me concern time, expectations and perception. I find myself in a spot that I never visualized or planned for. Accepting the progress gained as good and valid, even if it was not the progress I had planned for. Letting go of the time restraints in my head. Backing down from "fight" mode. And entering into "rest" mode. Where the g-tube must be my friend, causing life to sustain and THRIVE, until the miracle comes. My allowing and enabling it to happen...in its own time.
This is not simple, nor easy. But necessary and good. A continued process.

To be less abstract and more concrete, her actual oral calorie intake is not increasing in the stair step pattern we had hopped to see post therapy. She is managing between 150 and 350 oral calories on any given day. We are working hard to sustain that number and trusting that somehow, sometime, it will begin to increase.

...and...that's where we are at!

Life is Precious

I am a part of an online support group for moms who feed their children real food through the g-tube.
...its odd...how close I have become with this group of women. We have never meet one another in person. We are spread out literally all over the world. But we have a common battle to fight, and it seems that is all it takes for us to develop a deep "virtual" but very real friendship. We share humor, joys, despairs, fights and victories with the doctors, medical supplies...in fact, my blender was a gift from a member of the group.
Yesterday a sweet sweet little girl, whose mommy is a part of this circle of friends, quite suddenly and unexpectedly, went home to Jesus.
I am so sad.
Of course I know that sweet little Jordan is whole now, she has no more limitations. ...But it still hurts.
And most of all, I am reminded once again of just how precious life is. Its, Oh, so easy to take it for granted. To count on tomorrow. To forget that we have no promise of the future. To put off our children in order to attend to the temporal and urgent again and again. ...So my little soap box directed to myself and the rest of the world for today is this, "Take time for those that you love! The moments we are living right now are what count!"

Muddled Mind

Ever feel like SO MUCH is happening that you have nothing to say? I think that is the basic sum of my life for the moment. And my mind is just cluttered with it all...
...Bullet points! Mike W. always said that bullet points were great for organizing your thoughts...so here is my partial bullet point list of recent significant and mostly insignificant happenings in my life.

• I am planning on officially starting to homeschool this fall and trying to organize all that that entails...
• Friday night was girls' night out. We took deserts to a friends place and just had fun being girls. I didn't realize just how much I needed something like this until we started doing it. It fills an invisible hole in my life in a delicious sort of way.
• I finally got around to making more granola bars for Mic. These babies have 4.5calories PER GRAM and are YUMMMMMMMMY! Great for her, not so great for the rest of the household, but we all dig in anyway.
• My storage hole is an utter hopeless disaster that I desperately need to overhaul and I just can't manage to get to it. Such important things as my address book and my son's tennis shoes are lost somewhere in there.
• The tarp shading my back patio is rent in two. We need a mini-roof before my washmachine gets rained on. (Luckily it shouldn't start raining for another couple months)
• I am having a hard time keeping my mind off of the global situation, Revelations and the end times...
• Oral feeding for Mic is definitely stuck where we are at for now. No matter how positive I try to be the truth is that the cal counts are not budging. If I let it its gonna break my heart.
• Sunday evening we popped popcorn and took it to a little park nearby. The four of us played with a ball and a frisbee and ate "acorns" (as Mic calls them). Did you ever feel like you got to live a storybook moment that surly must belong to someone else's much more organized and romantic life? That's kind of how I felt...in a warm fuzzy sort of way.
• I am in some sort of mini-crisis concerning the proper way to go about Mic's BD and it is driving me crazy that I can't just make up my own mind. I want someone to tell me what to do, but I want to know beyond the shadow of a doubt that that someone isn't mistaken.
• We have been going through about 2 1/2 kilos of bananas a week! ...Bananas are expensive right now and its starting to hurt.
• My son has some sort of weird dry skin rash on the backs of his hands and its not going away on it own. I need to figure out what I am going to do about it.
• And the rest is just a little to personal to blurt out on a bullet point list on the internet. So, you'll just have to wait until when and if I am ready to share the rest of whats on my mind! : )

About Talking

My son is 1yr. 7mo. old. I have noticed that he is talking...a lot! So, I decided last week to try and write down everything that I heard him say. This is what I heard,
No
Mama
Papa
Hi
Hola
More
Stop
Ball
Hat
Voy
Fish
Moo
Boy
Milk
Brush
Jump
Stool
Baby
Bebe
Water
Agua
Down
Sock
Apple
Banana
Cookie
Bye-bye
Gracias
All Done
Coche
A Book
Ketchup
Hot Dog
Up-up
Abre
Backpack
Baa Baa
Meow
Tostada
Watch Dora
I Know

And this is not an exhaustive list of his vocabulary! I am very happy to see that while he definitely understands both, English is dominating his expressive communication so far.
...Even though I know that his big sister is not a fair point of comparison I cannot help but compare their development and just laugh in amazement at this kid. Its so fun to listen to him talk! He also talks in running sentences, but I usually don't understand a word of it yet. Its so much fun. Oh, and get this, his favorite song,...every single time I ask him what he would like me to sing for him next, he requests the backpack song from Dora. ...Hee, hee...don't ask!
I will say that we are definitely in the market for some boyish cartoons on DVD! : )

Happiness is...

...a load of fresh, clean diapers hung up neatly on the line to dry!!!

O.K., of course that is not my complete and exhaustive definition of happiness! It is just one little drop in the bucket. But, I do love the feeling of satisfaction that sight brings to me, all mingled together with the sweet smell of clean and the freshness of my back patio and the beauty of my huge potted fern that resides there... ahhhhhhh!

And speaking of "ahhhhhhhh"

I decided it was high time to make some strawberry jam before the season is past and they get expensive again... (Yes, I know its an odd time for berries, I have no idea why, but they are super cheap here from about the middle of December to between the middle and end of March. I have no idea if they are local, and my plant never gave me a single berry, any time of year, so I am none the wiser!)

They are one of my favorite fruits and this was an exceptionally beautiful batch of berries!

I'd never actually made this exact recipe before, but how hard can it be!?

O.K. so I messed up a bit with the thickener and it turned out all runny, but its still good.

Later on a did another batch and it turned out even better--nice and thick! I think I'll leave it at that for this year, but now I can't wait for next year to get here so I can continue to improve on my little production!!!!

"When you've nothing good to say...just post pictures!"

We have a little Sunday evening tradition of having popcorn. When I was a little girl we often had popcorn on Sunday evening after church--A memory I associate strongly with my dad. And well...we are creatures of habit! There's just something about Sunday evening that makes me feel like eating popcorn, so we often do! The kiddos LOVE it.

As for the title to my blog entry, that is pretty much pointed towards Mic's oral feeding and all the frustrations thereof. I was all relaxed and loosy goosy about it. Not loving where we were at, but willing to bide my time. Then we had to go see the RD yesterday. She totally upset my world. I am trying to shuffle it all back into perspective, but its going to take some time and prayer. In the meantime...I am feeling... ...RUFFLED.