He cares!

"Best Sisters!"


This poem was sent to me by one of Ava's loyal supporters and I want to share it with all of you.

God Cares

By Mickey Rogers

When I think of God's mercy
And I think of his Love.
Such a wonderful God
Looking down from above.

How He watches His children
While He sits on His thrown
Oh how He loves us
And cares for His own.

He cares for the weak.
He cares for the bold.
He cares for the young.
He cares for the old.

No laughter or smile does
He miss when you're glad.
No tear does he miss
When you're feeling so sad.

He knows what to do
And His timing is great.
He's never too busy
and He's never too late.

So, when you think He's not listening
Or you think He's not there,
Just remember He is watching
And He hears every prayer.

© by Mickey Rogers

Words like that keep my faith and hope alive. We truly serve and amazing God. I sat in bed this morning thinking about how far little Ava has come. As I sit here today and look at some of her pictures, I am just shocked at what she survived. I was telling Lisa our nurse, that at the time you just "skim by the seat of you pants" and "do what you have to do!" Now though as the clouds are parting I really am in awe of God's handy work. I do have some issues with leaving people. I look at them like it will be the very last time I see them again. I'm not sure when that will leave me but it is from coming so close to losing Ava. I still am not certain she is here to stay with us, in my mind......I just pray that we can keep her. It is terrifying to stare death in the eyes and holler, "You can't have my daughter." It is something that will fade over time, I think. I do know that it has made me appreciate my whole life and all that God has given me. I don't wake up and worry and ponder on what I don't have. I rise with a "thank you" mentality and am excited about what the day might bring. As long as I have my family and we are all healthy I am as good as a gold. The little things fall by the wayside. I've learned to not only smell the flowers but pick them and appreciate them in all their glory!

Bath time this morning. Ava feels a regular bath tub is too big so we have resorted to a shelf in a storage drawer! It works.


ATTENTION: BIG NEWS, Ava peed in the potty chair 7 times today. She finally gets it! The best part is I wasn't expecting it at all. I figured we'd go at her pace. I just put her big girl Elmo undies on this morning and about every half an hour I just tell her to try to go potty....SHE DOES IT! Then with Emeline's help (she adores Emme) she goes even more often. It is so precious. We all scream and holler, "You did it! You did it!" I am so proud of her. For me to see this mild stone it makes me happier beyond words. How blessed we are. Who knew pee could cause so much happiness? It is nice to finally go through the "normal" kid things after her being so sick for so long! It is just wonderful!


Okay on with the fabulous news. Ava hit our goal of 500 ml's in a 24 hour period. Actually she went over and took in 532.5 ml's! I was so happy when I figured out her total last night. She eats only a bite of this an that, really nothing more than just to re taste things. I think she really wants to get back to eating but is petrified of the "consequences." She does great with the g-tube. I was worried that she would mess with it. Occasionally it will fall out then she screams, "Ahhhh" and then I just know it has come out. I'm the only one that knows how to run the feed thing so far. I've debated on showing the girls because I want to keep a close eye on it myself. Brian hasn't learned yet because poor guy is always working. He will be first though!

I cancelled her appointment with Dr. Shilyansky tomorrow because she is doing so well. Why expose her to unnecessary germs? Josh, her nurse practitioner agreed. So the new plan is to lower her TPN to 8 hours a day! ;0) AND our new g-tube goal is 1000 ml's a day. (I thought our ultimate goal was 500 ml's :( but oh well this is okay too. So up, up, up we will go! I'm confident that she will do fine. Hey hasn't she already shocked us all. On the 28th it was only a "month" since her closure surgery. "She's come a long way baby!"

I took Ava to a dermatologist today. (They accommodated our need for a room fast. First office to readily hear my concerns without having to tell a million people!) As soon as we got into our room she started crying. I felt so bad. She just knows that doctors generally hurt her so she instantly becomes afraid. He says she has Alopecia Areata. Normally this affects people that are healthy. It is thought to be an antoimmune condition, meaning the body makes anitbodies to it's own hair. It can have something to do with the thyroid so we will run a thyroid check next week when Lisa draws blood. In some cases the person can loss all their hair but that is very rare. He thinks her hair will grow back soon. If not there is a gel we can get to stimulate hair growth. At this point I think we will just wait.....like we need anything more to add to our daily regimen! The most likely cause of her hair loss....stress! Huh just what I thought.

Playing with big sissy!


God bless you all and thanks again for adding our family to your prayers. Day by day, each step of the way life seems to get easier.

~Terri