String of Days with my Chronically Ill Child

Do I ever write anything exciting? The last few days are like the long string of days before it. Maizie wakes up, Maizie is pale, sickly, tired, she sleeps or does not sleep, her moods are up and down and up and down, she works a puzzle, I do some cleaning, read some blogs, make phone calls, play with the dogs, walk the dogs, take a nap, give Maizie her medications, debate if she needs her CVS medications and ponder if we will be able to leave the house, Maizie gets emotional again and begins to yell, the dogs go crazy, Joe comes up from his office looking at me like I need to take control of the situation and all I want to do is go back to sleep on the couch and forget about this day...this string of long days that never seem to change.

We made it to Susie's house on Wednesday. Maizie brought a book all about baby animals and before I knew it she was sitting all cozy next to Susie. Together they read the book,page by page. You can see Chloe examining her nails next to Susie. I am sure Chloe was thinking, "Hello! I thought Maizie came to play with me?!" After Maizie had her cuddle time with Chloe's dog, Boomer they went off to play Barbies.Last night I went to the mall with Janeen. I began to feel frenzied. I was out of the house! I was shopping! It was as if my brain was saying, "Must keep shopping while you can!" If I had the money and the time I probably would have purchased a whole new wardrobe, new shoes and whatever caught my eye. But, I did not. Instead I bought a Build A Bear Karate outfit, glasses and bear diapers for Maizie that will be from the Easter Bunny. Now that she can finally manipulate the clothing to dress her animals she is obsessed with doing so. I love watching her dress up the animals in cute outfits and parade them around proudly. I especially love it because for most of the time she is sitting in her chair looking comatose.

We are at a complete stand still with raising the Topomax. It is clear the Topomax is causing major aggression and depression. I called the neurologist and we are raising her Lamictal back up and keeping the Topomax the same until we see her next week. Argh. My instinct is the Topomax is not going to work. Considering how few migraine medications we have to choose from the neurologist is insistent we try it longer.

A few minutes ago Joe approached Maizie with a hair brush, encouraging her to comb through her wild unbrushed mane. He wants Maizie to be up and around, doing something...anything. Joe says, 'I thought maybe if you brush your hair you might feel better." Maizie began to scream and push the brush away. Sigh. Some battles are not worth fighting. I took this picture just a second ago as she was insisting, "Don't look at me! I want to do a puzzle." Puzzles seem to be the only thing she can focus on right now. At least that is a good brain exercise.On Wednesday we managed to go for a walk around the neighborhood. Maizie loves walking the dogs with the coupler. I see dog training in her future.So...la de da, here I sit with Darwin. Blogging another blog as Maizie quietly works on her fourth puzzle for the day. Sigh. I have been getting out more with friends which is nice. I would really like a weekend away. I sense one will be in my future soon. Easier said than done when you consider the anxiety Maizie experiences whenever I leave the house. Some days you have to judge whether or not time away is even worth it. Any one who has a child with a very rare chromosome disorder (Duplication of Chromosome 6 at sub-band 6p25.3),Autism and severe anxiety that is followed by bouts of cyclical vomiting syndrome knows exactly what I mean.