The Good and the Bad

Thanks to all who commented on my book giveaway. Congratulations to The Nelipot Mommy– hope you enjoy it as much as I did!

What a busy weekend we had- for the most part it was great, but not without a little stress to keep things interesting.  Saturday I attended a reunion for my Little League softball team from 20 years ago, and no, I hadn’t seen these girls in 20 years! It was held at a restaurant where we used to go after games. It was a ton of fun to catch up and bring back such great memories. Softball was such a huge part of my childhood; although I will never push Charlotte into it if it’s not her thing, I would love to be a softball mom and teach my daughter to pitch (and also I am scared to death of being a dance mom- ha!). Later that afternoon, because I am trying to brainwash my daughter into being a softball player support my husband, I took her and her brother to Ryan’s softball tournament. We got there late, so only got to watch a few innings, but it was nice to be out of the house with both kiddos (I brought our nurse with us to help- I am NOT SuperMom) and enjoy our 70 degree February weather.

Today my sister in law and a friend gave Charlotte and me a sweet sip and see baby shower. Once again, I am so overwhelmed by the generosity and love shown to our family. Little Charlotte received so many adorable gifts and I know she loved all the attention (although she was asleep for most of the party!). We had planned for Ryan to drop my mom and me off at the party and then him to take Grayson to get a haircut. But about 30 minutes before we were going to leave, Grayson started seizing, and it was a bad one. We gave him his emergency meds and after about 20 minutes he passed out asleep. We made the decision not to take him to the hospital, because every time we take him for a seizure, there’s really nothing they can do. He stayed home with his daddy and slept all afternoon and is in his bed now snoring really loudly.

We just never know with Grayson, and are learning that we can’t count on any plans to go the way we expect them to, because he can be completely fine one minute and in an instant, not. It’s scary and it’s sad and it’s frustrating, but it’s life. We just roll with it and move on. I’m expecting a phone call tomorrow regarding the clinical trial drug we want Grayson to qualify for; it may be nothing, but I do have a glimmer of hope that we may be getting closer to a possible treatment for our little guy.

Hope you all had a great weekend!

6 Comments

  1. Jenna on February 25, 2013 at 5:33 am

    I am praying so hard that you can join in the trial. As soon as I saw it I was really hoping they were going to start accepting clinically diagnosed patients. I will keep praying.

  2. J o s e y on February 25, 2013 at 2:29 pm

    Yay for a softball Mom!! How nice of your friends do throw that sip and see for Charlotte. Hoping that Grayson gets into that trial…

  3. thenelipotmommy on February 25, 2013 at 5:55 pm

    Oh I hope he can get into that trial! It's so funny, I'd be much more intimidated by being a softball mom than I would be as a dance mom… I can't do either, but give me a ball and someone will lose an eye. LOL. My aim is really that bad. 🙂 Also, I'm SO excited to get the book… thank you again, so much!!!

  4. Laurie on February 25, 2013 at 6:35 pm

    I'm praying Grayson can get into the trial. He deserves to get this medication! In the meantime, I really hope and pray his seizures can get better under control. I can't believe Charlotte is already 1 month old! It's not so bad being a dance mom 🙂 My "baby" girl (who's 17) played little league softball and took dance. She is still dancing on a competitive team. She performed Saturday and it was during a beauty pagent. That's one thing I'm SO happy she never wanted to do 🙂

  5. Down On The Farm on February 25, 2013 at 11:14 pm

    PRAYING PRAYING PRAYING!!!

  6. Kyla on March 1, 2013 at 10:09 pm

    K used to always have her neuro episodes on big days. I remember on N's 6th birthday we had literally just arrived at the Children's Museum (his choice for his special day) and she went into one and we had to leave. He kept apologizing for choosing a place that made K sick, but of course the place had nothing to do with it. Glad G-man is feeling better now!

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