Tuesday, May 26, 2009
Can I just tell you, I hate seizures? They really have to stop sometime soon. They were really bad today. Kendall has been sleeping better, but when she wakes up or is eating, she almost always has more. I can't handle it. They make me absolutely crazy. Seriously, it either makes or breaks my day. When they are mild, she does great. She eats, laughs, holds her head up, plays, looks around. When they are bad, it takes it all out of her. I mean completely wipes her out. We increase her Vigabatrin tomorrow for the last time. This is it. Please keep her in your prayers this week.
Our nutritionist was here today. Not surprising, Kendall has lost weight. We figured she would with the surgery. Fortunately she had gained weight a few weeks ago. She also grew a half an inch! Oh, and her head circumference grew too. We're now at 16.5 inches! Still making a curve...just waaaayyyy below normal... ( I don't know why, but I obsess over her head size, every time we get a new measurement I run home to plot it!)
Justin and I met with the attorney today to set up the Special Needs Trust and change our will. It is really difficult to think about how your kids will survive without you. Especially Kendall. We put a lot of thought into plans for her. But both of us feel like we can breathe a sigh of relief that we've taken care of it. It was definitely money well spent.
Justin's traveling this week again, so Kamden will be the man of the house. Good thing he knows Karate. (he asked me to write that)
Posted by jocalyn at 4:57 PM