Can't believe it is already October in a few days.  Where does the time go?  This past month has come and gone so fast my head is spinning.  I guess Megan being sick all month on and off , mostly on - has made it a bit more blurry than usual.  Hoping we are on the mend now finally.  She went through Rocephin shots (3), 10 days of Levaquin and has about 4 more days of Tobi Nebs left.  If this doesn't do the trick I guess we will talk to infectious disease about an admit for IV a/biotics.  Yuck - makes me sick to even think about a hospital stay!!  Ryan and James are taking turns with their stuff - who is sick, who hates school - who lost a binder with all of their work.  My patience for this stuff is very short these days.  Some of the stuff that is coming home from school is just absolutely riduculous. 

Still feeling kind of out of sorts with everything.  I am in a spot I don't really recongnize.  Not miserable - not happy - not anything.  Maybe just here....

I know what my responsibilities are - who and what I am responsible for and I am getting the job done.  I wish I could say I was getting it done with more UMPH though instead of just getting it done.. My get up and go got up and went???  That is what it feels like.  I don't like it so I have to fix this.  I want to feel connected to everything instead of just existing FOR everything. 

The next couple of weeks are more follow up visits, blah, blah, blah.

Ryan starts soccer this coming Monday - that is exciting - it will be his first team and I can't wait to see him play.  James is in a Boston Brace - dont know if I said that before.  He fractured his spine between L4 and L5 - probably in football but who really knows.  He hates it.  It looks like a medieval torture vest!!

That's all I've got!!!

Tragic Widnes tot Leoni's short life may lead to cure of rare condition - Runcorn and Widnes Weekly News

Tragic Widnes tot Leoni's short life may lead to cure of rare condition - Runcorn and Widnes Weekly News

Another one gone from a mitochondrial disease - two days shy of her fourth birthday. Crying for another lost little girl .

????

I dont even know what to write anymore. I dont even know what to say when people say - I hear Megan is doing great. It is one of the hardest things to answer without sounding like I am wallowing in her disease or a totally negative unhappy, unappreciative person. You would think this should be one of the easiest things to respond to....Great is not a word I would use to describe how Megan is doing...and I feel like an ass for even saying that. While I KNOW that she has made huge progress from last year with coming off the vent and having her trach removed, there is so much still going on every day. Seizures just plain suck. I am not even counting them through the day anymore. It is too sad because I know they are peeling away at her and we have tried everything to stop them. And we have the muscle spasms where she is stiff as a board and crooked all at the same time. It is getting very difficult to hold her and comfort her through these because of her size and her strength. She has a very strong right fist..I have great bruises to prove it. The crying fits from pain are also very painful, for all of us. I am so angry that nobody can stop her pain. It is so unfair to watch this. Yes - I am asking myself quite often why, why, why? And the disgusting stoma that wont close is driving her crazy - and me - it is an oozing snot hole that gets clogged up - so gross. I think she feels like her air is stifled at times because of it and it stresses her out, which then leads to the muscle spasm, which then leads to a seizure, and crying, and on and on - every day - all day - throughout the day. God help her if she does not go to the bathroom in the morning - we just add the stomach discomfort in for some extra fun. I probably sound like an insane person but it is how I feel. It's one of those days that I have had it with all of this and dont know what to do anymore which then makes me feel guilty because in other aspects of my life I know I have so much. Guess I might kind of be feeling like I'll be punished someway for feeling so pissed off. I really feel like punching my fist through a wall and screaming until I have no voice left. Ryan was trying to read Ripleys Believe It or Not to me tonight but couldn't because of Megan's screaming - what else is new. He takes the backseat again.....which I'm noticing is starting to wear on him. He feels unimportant. Sandwiched between James who is the oldest, in high school - funny, and between Megan who is so pretty and so sick and needs so much. I guess I would feel that way too - middle child and 4 years of this.

We do have some nursing and I get to sleep at night now. Huge bonus. It is helping me to feel more human. Day nursing is not so great I find. They have NOOOO clue what to do with Megan. The nurses that are here for a few hours a day seem to think if we just keep pumping drugs into her and request more and more, stronger and stronger it will help her. So what - drug her up like a patient in a mental hospital???? Would they drug their kid up that way? I think not. She is cognitive of her surroundings and loves, loves, loves me. So lets take that away from her too....they are callous and ignorant mostly. But I am in a catch 22 - I can not do this without people that can work a gtube, feeding pump, nebs, meds....a second person to help carry all of her crap to ALLof her 10,000 appts a week...it is exhausting. And it is stressful to have to manage all of their personalities - they are all women so lets face it - it gets interesting. Of course there is always the sunny disposition I am always supposed to have with them or else I am a bitch. It is hard to always have the sunny face for everyone around me - my kids, my husband, my mom and mother in law, nurses, doctors, therapists...........AAAAAAAHHHHHHHH! I just want to be left alone.

Ill figure it out - probably by tomorrow morning, and hopefully I'll deal well for another while...

I absolutely love Pat and all of my children and the rest of my family and would die for any of them- it all just is a bit much sometimes, thats all.