Schedules......

Well, the surgery has been postponed to 8/3 as long as the cardiology visit on 7/28 goes well. I was really hoping to get this over with, but what is a couple more days. We didn't have any Dr's visits today, but tomorrow a nurse is coming buy because since we are on our 8th feeding pump, apparently they believe I'm doing something wrong and that why it doesn't alarm when its empty!!! Really doesn't make any sense to me, but if they want to waste someones time to tell me that I'm working the pump correctly and they don't know why they are always breaking that's fine by me.

Anyway, my brother Joey turned 15 today, HAPPY BIRTHDAY!!!!! He is an amazing brother, he always devotes all his attention to Dylan and Lucas when we go over there, and he even cancelled a birthday party so that we could baptise Lucas instead. Hence, why he is the godfather...

As I sit her writing this, I have tons of things going through my head, how do I explain to a 4yr old that his brother is going in for surgery and neither him, nor I will be home for about 5days? Or how is it possible that a child at 11 months will be going in for surgery that will last up to 12hrs?? And how many times can a child be put under anesthesia before it starts to affect him in some way? What will Lucas eat once he is 1yr old if he still has his allergy to dairy and soy? How will we afford to continue to commute to and from Boston for Dr visits and surgeries and follow ups? And amidst all this, how will I maintain a "normal" life for my Dylan???

I guess I'm just alittle on edge recently, I've been told by Steve that his family keeps asking him why I'm so snappy and moody all the time. Don't they realize what I've been going through? Having at least 4 visits a week with Dr's and therapists, raising 2 kids, taking care of the house, dealing with all the issues associated to Lucas and all that in tales, living life on my phone since I'm constantly talking to Dr's and therapists, nurses and insurance companies, I'm sorry I don't find the time to sit a chat with my in laws, but to be perfectly honest, I don't get to pee by myself, the only time I'm totally alone is when I go on a "mini vacation" and check the mail! That's it, I check the mail 6days a week and that is the ONLY time I'm truly by myself, and they wonder why I'm not all about there family and what's on there mind, and making sure that I'm always in a good mood around them, not that we've ever really gotten along in the first place. As I'm writing this I'm realizing that if any of them ever read this $#@t will hit the fan, but I promised myself I would be totally blunt in this blog, since that;s how I usually am in life, I say it as it is and if you don't like it, don't' ask, I think that's why they always ask Steve what's wrong with me and never actually ask me. I probably shouldn't be like that, and maybe its wrong to be rude, but I honestly don't realize that I'm doing it. I'm hanging on to "normal" by a string and I'm just trying to survive, I really don't think anybody truly realizes that.

Well, its almost 9pm and since I have to suction Lucas 2-3 times a night so he doesn't aspirate, I'm going to bed, more later...