That is the everlasting question. Before I start in on our newest “battle” I have to tell you that for one simple moment Friday evening the house was quiet, the boys were off enjoying a weekend at the farm, Ky was quietly playing in the sandbox and I was sitting on the back porch and it occurred to me. For 5 minutes we were normal. No backpack.. no g-tube… no cathing or medication… she was just an almost two year old playing in a sandbox with a dried out marker because she is not used to getting to USE the sandbox toys – her brothers dominate those… and I thought omg… THAT is normal too. So I had to grab my camera and I forgot about portraits and whether the image was exposed properly or would make a good canvas and I just took some pictures… of my baby in the sandbox and for 6 minutes life was normal.Well currently she is backed up .. again. She ran out of formula on Saturday before we could return from our wedding and my parents fed her… a buffet. Carrots, crackers, mashed potatoes, ranch dressing, salad and ICE CREAM. Fun… this should only take us a week to get fixed. We have to see the Motility specialist on Tuesday and we have to FEED her more then so I am sure she will puke on my car on the way home. But hey… its not like it would be the first time. We have backed off her feeds and her poo today has been nothing but overflow. Sigh… solid food only does TWO things for my kid… makes her puke or backs her up which is sad. I am still holding onto hope that this motility guy will have some answers.

Friday night Ky wanted to be rid of the backpack and she got “gaggy” and tried to puke so I just stopped the feed early. As long as she is maintaining weight I am fine. Which we can now check daily thanks to our trusty scale!!! And yes she is maintaining… not gaining but not loosing… in limbo… she has joined the rest of our life.

So… backpack free she was playing in the sandbox. The boys were gone to the farm already so she didn’t have to fight them off for the toys but you can see how much she misses them when they are gone. She carries their shoes around when they are not home. Shoes are her “thing”. You see the Thomas the Train boot in the sandbox? Ross has decided that he is going to walk around the back yard with his t-shirt, underwear and snow boots in 80 degree weather. I have to get a pic of that soon too.

And our newest thing is the eyes… we have to get to see an ophthalmologist soon. She keeps squinting to watch TV- which she doesn’t do very much of but we do have a 36 inch TV so its not hard to see – she is tripping over things, running into walls, I have seen her eyes shake a couple of times, Troy’s mom noticed some things weird with her eyes and she has started this thing where she will look up at you like this:

So… at least for a few minutes I was able to see what may be ahead and I have to say that I truly appreciate even the smallest glimpses of what is hopefully ahead.

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