So Mr. Isaiah was starting to Finally come out of his cycle. I honestly believe it was that and not some type of virus. Just yrs. of experience with it. I was just soo very sadden that after 6 months of no cycles, here we are again and it was worse than ever. It is just not fair. This poor kid just suffers. I am so sick I watching my kids suffer. I tell ya, I must have been a serial killer in my previous life.

There was a whole lot of drama though about Isaiah's meds and an oncall dr. last night will I was out. My nurse was working and called the dr. to get a refill on his diastat and this woman(dr.) who had NO clue of Isaiah's care plan accused her/us of drugging up my kid. Oh when I found out I was fit to be tied. She refused to fill the script until she talked to my mito dr. Well I guess homegirl got a talking to b/c she had a completely different tune with me in the am. You know I had to set her straight and she was quite apologetic saying she did not have his file in front of her when she spoke to my nurse. You know that was bull. She ended the conversation by saying "Are there any scripts you'd like me to call in". Hmmmm.

Avery's day however, was HORRIBLE. ARGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGG
I just don't know what to do anymore. He is either so very junky and sounds like hell or is sooo irritiable and dystonic and spasy (if that's even a word). Just HIGH maintenence and miserable in general. I just feel so bad b/c he does actually have a great disposition about him but just Always feels like crap that you never see it. Again, not fair.

Telling you, last night I had a complete breakdown (well not crying or anything) but a me breakdown. So of course I just blast out my IPOD(good audiologist, huh) and sing my 2 fav. songs (Golden by Jill Scott and My Life by MJB). Hey, whatever works.....

But I did accomplish something today. I painted the guestroom/computer room today and(with the help of my nurse/friend and we are going to try to change the ceiling fan ourselves, Yikes. But it looks so cute. Thanks to the CoQ10 supplement I have been taking for energy. Debbie, you are going to like your new room. LOL.