I managed to talk to our home infusion company today and ask AGAIN if they had a smaller pump. Ky spends 4 hours a day literally chained to an IV pole in her room. Yes her pump is “technically portable” for an ADULT… but definitely not for a 23 lb baby! I felt really sad for her when she wanted to chase her brothers down the hallway and they were yelling for her to come and she was stuck and trying to pull her pump behind her. (sniff sniff)

So today we were talking about supply refills and low and behold they had a ZEVEX!!!!!!!!!! OMG I jumped up and down and told them YES we want it! Can I pick it up? How soon can I get it?

So the nice man who always delivers our supplies in his little teal green station wagon pulled up and today he pulled in the driveway backward. I KNEW that he was unloading! YAY!!!!! That is a good feeling! While standing at the door and signing for the package he say to me “Well they moved her to a new pump and I haven’t delivered here in a while … I guess that means it won’t be long now?” I looked at him rather perplexed and he went on… “usually they move people to this pump right before they are done with their feeding tubes…” I smiled and tried to nicely say… “not really for us…” but he kept on. Finally I just blurted out… “no we changed the pump because my tiny, barely walking 23 lber cannot haul around an IV pole with her. This is a long term thing for her. Its not fair that she has to eat through a tube so the least we can do for her is try to give her some way to be a little more normal… ” He looked at me and could tell that I was trying to be nice… so he smiled and asked if there was anything else he could get for us. I quietly said no and as he was walking away he said… “well I hope NOT to see you next month”….

I shut the door and sat down on the stairs and for a single moment tears came to my eyes. I don’t find myself feeling bitter very often but truly- it is not fair that my princess has to deal with this. Its not right that our supply delivery man hopes not to see us next month when I know all too well that he will see us for many months and even years to come. It kind of makes me sad when Ky is hungry she goes to her room and starts yelling “ooook up……….. ooook up” (translation: hook up) which means she wants us to hook her tube up and start her feed. Now, a normal almost two year old would be wanting a cup or a snack… but not Ky… she wants her feeding tube. Since her newest round of throwing up she is refusing food again. I guess if every time I ate something I threw it up I wouldn’t want to eat either.

I keep telling myself that it won’t always be this way. I am realizing that people are starting to notice more that things are “not right”. I have Ross whose constipation is making him near impossible to potty train… and Ky – and we ALL know how that goes… I notice the gap between my kids and other kids starting to widen and I think is hard for me. I always wonder… is THIS as good as it gets for her? She is already starting to show an interest in the potty and I wonder… will she ever be ABLE to be potty trained. Physiologically will it ever happen for her? Sigh… then I realize that I just borrowing worries from tomorrow…

So I look over and there is the new TINY pump and the TINY little backpack for it and I think… YAY! Its very small high tech and pretty darn CUTE! (If a feeding pump can BE cute…) It super quiet and REALLY much easier than the other pump, it even PRIMES itself!!! For today we will just be happy about our new pump and the fact that now will not have to be restricted by her IV pole and pump. For today I will be satisfied that I have found one more small way of helping Ky be just a little closer to normal.

PS… the pic is an iphone pic… I refuse to be a professional photog everyday of my life!!!!

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