Friday, March 25, 2011


Evie stood up today by herself, for the first time. Its odd, because even though she has been through SO much, she is very determined and very strong. She is right on track, according to her milestones. It would be easy for both of us to give up on each other, but we both keep striving to do better: to reach those milestones and beat the odds, no matter the circumstances. Evie just got out of a 2.5 week long stint in the hospital, that resulted in a big change for our family- getting the GJ Tube. And the day after she gets home, she decides to stand up. Maybe it doesn't mean much to normal families, with normal babies. But to me, after all she has been through, (getting a central line, vomiting daily along with many other GI issues, and being stuck in a baby cage for a crib, for 2.5 weeks) it is a big deal. It did not stop her from regaining the ground she had lost. Lets just say, tonight, I am a proud mommy.

Evie is different. Not because of all her medical issues, although that certainly makes her different from most kids, but because of her sheer determination. Perhaps she gets that from me. I strive to make her life better. I urge her to always be pursuing the next goal. We, together, work very hard to ensure that she stays on track.

That being said, our lives are much different after this last procedure- the GJ Tube. She currently eats 21 hours out of the day. I would have to imagine after eating that much, that she will not want to eat by mouth. She is getting to the point where i ask her to take a bite, and she will shake her head no. Not just move her head adversely away from the food/spoon, but she says "no". Too, not only is she "eating" constantly, but she is always attached to an IV pole. I feel so bad for her because she cannot move around like she needs to be able to do. Its hard for me as a parent, of such an amazing little girl, to watch her get frustrated because of cords that are wrapped around her body. The backpack the company sent to us is the smallest that they have and it is wayyy too big for her, so I am going to have to find something else to work, so that she can learn to wear it comfortably, and proudly at the same time.

We usually just let her explore her environment, and watch with pride as she discovers new things, but because of her leash (the feeding pump) I had to put her in a pack and play today, just so that she can play without me having to be right there supervising her every move, following her around with her IV pole. It worked for a bit, but I have a feeling that she will get bored pretty quickly. I pray that we can find a solution that works for both me and her.

She is tough. She has been through so much and to see her feeling so much better, makes my eyes water. I honestly never thought we'd make it here. I am hoping that with this tube, she can learn to like food, keep up with those milestones, and, perhaps most importantly, learn how to be proud of who she is.