Its been the best part of 24 hours since I got the news that I had been half expecting.  I told John last night and it went as well as could be expected.  I feel really sick to my stomach today, I’m not sure about him.  My oldest brother, who is out here from KC, MO visiting for a week spent the day working on our large living room (the front room for the people that have been inside this house).  It looks really good and is nice to get that big-ass project nearly completed because I am sure having less on my plate will help me deal. Still haven’t cried.  I’ve spent the day working at home, keeping the kids from doing anything dangerous but not really doing much with them and I have also called and made lots of “next steps” and informed the people that needed to know.  I’m pretty much on “Worst Case Autopilot” because I need to get the right things in place and can’t lose focus because she needs my focus right now.  I will do everything in my power so that she never finds out that she has Batten Disease. Thursday: MRI under(read the rest)

3 hours at the ER later and London’s leg is NOT broken.  He still won’t walk on it, poor little guy. Today I should hear about the EEG and talk to Rachel’s caseworker from the Commission of the Blind. My oldest brother, his wife and 3 daughters are coming out for a week and all of my family is having a BBQ at my place on Sunday. 3 brothers, me, John, 3 brother’s chicks, my parents and all of our kids.  I hope it isn’t too much for Rach.  I think I will have her be my helper to keep her focused on specific tasks, rather than get lost and totally overwhelmed. Tomorrow afternoon, Rachel’s two teachers from last year are coming to take Rachel for a couple of hours.  I have not told her yet.  She is going to be so excited. (This post was written one-handed with a very cuddly 2yo Boston in my other arm and lap.  He might be totally obnoxious but he is still a baby inside.  I love him!) NEW THEME.  Trying to get rid of the commenting problem.  Could those that have been having problems leaving a comment please try it out now?

I had an hour long consult with Dr Darras and Rachel and we went over her history, the notes from the other physicians at Childrens and he did the typical “neuro exam.”  And he looked at her eyes as best he could without dilation.  We agreed upon an MRI with contrast, EEG, Skin Punch *AND* we are testing for Batten Disease.  Batten Disease has been on our minds for a few weeks and I was not really surprised when it came up and I jumped at the chance to have her tested for it.  Watching her decline due to some currently unknown cause is really really difficult. Keeping her, my daughter, separate from her actions is almost impossible.  I am so glad that this stage of testing is happening over the summer because I think that would have sent Rachel and me over the edge. Also, I wanted to post this micro conversation I had with her today. Me:  “Rachel, what did I talk about with the doctor today?” Rachel:  “Because I’m a good daughter.” Her language skills (receptive and expressive) have been problematic for quite some time but I wanted to write this one down because, somehow, it seemed(read the rest)

There is no excerpt because this is a protected post.

There is no excerpt because this is a protected post.

My beautiful little girl is turning 5 in a matter of days and we are having her birthday at Par Tee in the next town over at an indoor miniature golf place. On her actual birthday we are going to take all 4 children Build A Bear. This upcoming outing has bought me a lot of leverage with Rachel with her persistence with being late every morning. Today will be day 4 of being on-time and that is a total miracle!!

One of the Moms was pondering why there seems to be a slow down in blogging.  I think it is mostly to do with the instant gratification that comes with facebook and twitter.  At least that is the case for me. I have decided to make more effort over here and return to the purpose of this blog:  To journal about my life as a mother and write down important pieces of their childhoods that I seem to forget too quickly. Today was a half day for the girls (Julie gets out at 1115 and Rachel at 1230) so I shared a fantastic lunch with Julie in the shop filled with strawberries, watermelon, banana bread and low fat cottage cheese.  She is such a cool kid.  Right now we are shop sitting and waiting for Rachel, John just left for a service call and listening to the Charlie Brown channel on Pandora.

The weather was great and the kids played outside for hours. We ate at home like Kings and took a long walk to get ice cream and walked home on the beach. ‘Twas the best Sunday in months!

1 19 20 21 22 23 34