Welcome

Welcome!

If you are a parent of a baby diagnosed with Infantile Spasms,  Tuberous Sclerosis, Epilepsy, or some other condition, {hugs}.  I hope that our story can help you, whether it’s by learning about the condition or testing, learning about some medical options available, reading about (and learning from) our experiences with doctors, nurses and hospitals, or just by knowing that you aren’t alone.  If you have any questions, please feel free to ask in the comments section, where others can learn as well.  But, if it’s something you prefer to keep private, feel free to email me:  h o l l y .guillaume @gmail.com (without the spaces, of course).

If you are a medical care professional (doctor, nurse, staff), I sincerely hope you can learn from our experiences.  If I seem irritated at the system at times, it’s because I probably am.  But, this could be a useful tool to learn from, should you care to try to make the industry better.  You’re reading a play by play from {the mom of} a patient, and hopefully it’s helpful for learning how to treat the patient and his family.

If you are part of our family or a friend just catching up, thank you!  I started out by just posting on Facebook.  Well, actually, at first, I was only telling a few people by phone and text, avoiding Facebook altogether.  However, updating everyone individually turned to quite a feat, and one that I did not have the energy for.  So, that’s when I started updating Facebook.  I wasn’t sure at the time, but it turned out to be a nice support system!  It was comforting to hear nice posts of thoughts and prayer from people I might not otherwise have told.  However, I think Facebook might be better suited to the *fun* posts.  You know, the ones describing your dinner out with friends or your child’s latest accomplishment, etc.  People think they do, but they don’t *really* want to hear the real nitty gritty kind of updates.  I think it’s only natural to want a happy ending, but when there isn’t one, people run out of things to say, so your “support” comments start to dwindle and it starts to feel lonely.  So, I’ll forego the nitty gritty on facebook, and I’ll spill it all here. All of it. The good, the bad and the ugly.

If you don’t have a child with this condition, you aren’t a health care professional, and you aren’t a friend or family, please show a little empathy.  This is an extremely hard diagnosis, and our lives are changed forever.  So, as your mom probably told you “If you don’t have something nice so say, don’t say anything at all.”

Thanks!

Holly

9 thoughts on “Welcome

  1. Hey Holly! Hope your family is doing well! I was wondering what the password was for your resources page. You had so many great links on there & I would love to go through them but now it says it is password protected. Thanks so much!

    • Hi Christi! Sorry about that. I guess that’s what happens when I try to blog from my phone. It should be fixed now.

      How is your little one?

      • thanks Holly! we’re doing ok. Going to see the neurologist this month to see if we need to adjust meds. I sent you a message on facebook since I couldn’t friend you because of your privacy setting. Love your blog just recommended it to a mom on the fb group as a place for resources!

    • Hi Jamie. I’m sure you’re overwhelmed and just processing all the information out there. Please check out the Resources tab on my blog to find more blogs to read and other articles. I highly suggest joining an IS group on facebook. I just friended you and I’m going to send you an invite to the private fb group. If I can help, just let me know!

  2. Hello Holly,

    We are in the beginnings of our journey with IS. My 7 month old daughter was diagnosed two weeks ago and is now on Vigabatrin – we started it the day she was diagnosed, so it has been about two weeks for that too (some improvement, but not stopped – doc is upping dosage tonight). Your blog has made me cry and smile. Your son is precious! Thank you for blogging your experiences!

    Erica

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