My hero!

I am not a person that is easily impressed. I don't get excited easily. I don't jump up and down when I am excited. I don't know when that changed because when I was little I would get so excited on Christmas Eve that I would go to bed at 5pm and lay in bed all night waiting for 4am when we would go wake our parents up so we could open gifts. Since Molly has come into our lives I'm starting to feel that level of excitement again. Well, maybe not the first year. I think I was too scared to get excited about anything because we were always waiting for the bad to follow the good. Each day since Molly has come home she has gotten healthier and stronger. We don't see it from day to day but we can see it looking back. I don't even have to look back very far. Recently each day brings new things. New foods, new developmental milestones. We could not be prouder.

Molly recently started crawling. When early intervention started coming about a year and a half ago the woman that was coming at the time told us that Molly was probably going to need a wheelchair. I don't know what she was basing that on but I was devastated that she even thought that. I don't know if it was because she was 1 and wasn't walking or what her reason was. To make a long story short, she no longer comes to our house. I wish I could find that woman now and show her all that Molly does. She acts like a normal little girl. Does she act like she's 2? No, more like a year but every day she does something that gets her one step closer to where she should be. She crawls all around. She gets up on her knees and is co close to pulling herself to standing. We have been working on standing a lot more with early intervention. They suggested to me back in May that she may need braces for her ankles. They no longer think that. I wish when I said "she just needs time" that people will start listening to me. She stands for pretty long periods of time and plays while standing up. She gets into things that she's not supposed to. She is just like a kid that has never been through any medical procedure.

Our biggest challenge so far...feeding. Of course this would make sense because she never learned to drink from a bottle. She was never fed any type of baby food. When we were in the hospital we only cared about getting her the proper nutrition and we didn't care how she got it as long as it was making her healthy. Now we are focusing on the "how she's getting it". She has been eating the same thing for awhile now...baby food, yogurt, baby food yogurt. I keep asking the Nutritionist and early intervention what the next step is and how do we get there. They don't have the answers so I'm just doing it myself. We offer her everything we have and for the most part she will try anything. Usually it's a few licks and that's it. Well, this week I offered her mac and cheese and she loved it!!! I almost couldn't believe that she ate the whole thing after eating a yogurt. That was fantastic and I was so excited but it's not good enough. Why stop there? The next day I tried chicken nuggets dipped in bbq sauce and she ate every one of those too. Today she had lobster, more mac & cheese and a whole piece of birthday cake! We are so amazed by all that she has done just in this week alone. After this week I AM EXCITED! All of our hard work is finally paying off. I hope she continues with her eating. I'm hoping at our next growth & nutrition appointment in August that they will stop her g tube feeds all together. Our biggest hurdle before getting her gtube removed is getting her to drink enough fluids. If she can't drink enough she won't poop and if she doesn't poop that means we don't get any sleep because a constipated Molly is a very unhappy Molly. So we're not rushing it but we are enjoying all of this new found normal kiddo stuff. To sit back and watch her play and babble makes us so happy and we are enjoying every second of her! She truly is our hero!