Monday, September 22, 2008

11 months

Reese will be 11 months on Thursday. It is hard to believe--this has definitely been the fastest year of my life but I can't imagine life without Reese. In some ways it has flown by, but in other ways it feels like I have always known Reese. She has definitely changed me and everything in our lives. I feel like I have been floating in depression this week, and I think it is because her birthday is right around the corner. She is almost a year old and that seems to hold so much significance. With our other girls, we were working on first steps, first words, new foods, and staying alive in a house full of things to explore. With Reese, we are still working on head control. In order to sit up, roll over, crawl, walk, you must first be able to hold up your head. Wow...we have missed a lot of milestones. As a newborn it wasn't so obvious--her delays. But now I feel like things are changing. People ask how old she is and then do a double take. They ask questions--some that I feel are really none of their business.:) I think it has hit me--we are going to have some really difficult days. The reality has set in. Reese is delayed and is still seizing. It is no fun and can really get me down some days. I really hate to see her suffering. I hate the seizures. I hate the meds. Sorry to use the word "hate" ( I don't let our kids use it) but it's the only word that truly describes the way I feel.
We got "large ketones" according to the testing strips, which means we are getting close to our goal with the diet. We will get some labs done next week to determine the true ketone count in Reese's blood. So I am happy to see that we are headed in the right direction with the diet. But the seizures have not improved at all. Ugh...that has bummed me out too because if this doesn't work I don't know what we will do next. I really had high hopes--definitely not giving up yet though!


  1. Hi September 22 is my birthday and what a coincidence that I'd come accross this post. You have a beautiful family. My son has spina bifida occulta and had a few delays at first and now has a variety of mild neurological impairments he's 10 and my oldest also has Aspergers, he's 13. You are an awsome mom, and a gret inspiration. I loved your Powerful Video Blog - what an eye opener.

    Your family will be in my prayers.

  2. I came to your blog through Amy Price's blog (I'm a friend of Amy's cousin). Anyhow, I'm currently a medical student, and I just wanted to say how touched I've been by the honesty you've shown in your blog. There is a large push nowadays for humanism in medicine, and reading stories about Reese and your struggles and triumphs has truly helped me internalize this concept. After long days of lectures filled with technical jargon, reading your posts truly helps put a human perspective into all the things that we are learning about. Thank you for sharing your stories so openly. Your daughters are BEAUTIFUL!
    God Bless,
    Andrea Smiens

  3. We love you bunches! Big HUGS and KISSES from all of us!

  4. happy 11 months!!
    jill b


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