Myrtle Beach Bound

Brandon’s annual Marine Corps Birthday Ball is this weekend. We are having it a bit early because they deploy before the actual holiday. His Battalion Ball is in Myrtle Beach at a nice hotel and should really be a fun event. A great friend has set us up to use a family home there where we will stay for the weekend. The Ball is actually Sunday night so we are going to be down there from Friday until Monday. My Mom and Lance will meet us there to watch Maddie while we go to the Ball.

If you are not military, you would not know the significance of the Birthday Ball, but the Marines take this celebration seriously. We will get all dressed up in our finery. Brandon will wear his dress blues. In a normal year, by now, I should have spent countless hours trying on dresses. Not so much this year, but luckily I have lots of great dresses from my college years that I haven’t worn around this crowd. It has been a loooooong time since I last got all dressed up, but it should be fun.

Sadly, the last time I was supposed to get all dressed up was for the Marine Corps Ball in 2007. The day before the Ball (which my mom was also driving down to babysit for) Maddie was diagnosed with leukemia. So I am trying to ignore the similarity and get excited for my first night out with my husband since her diagnosis.

Yes, that is what I said.

I have not gone out with Brandon and left Maddie since her diagnosis. And, to make it worse, even before diagnosis, we had only left her once so he and I could go to a wedding when she was 7 months old.

So even though lots of other people will be there, we are going on a date this weekend. And it is going to be fun. I know Maddie will be in great hands. My mom has held her through a cluster of seizures before, and I know she and Lance will do everything they can to keep her happy (and hopefully get her to bed). There are lots of tricky things to deal with since Maddie normally sleeps with me and still nurses to sleep. Hopefully she will just wear herself out and fall asleep on my mom.

As far as Maddie’s seizures go, we are titrating up on the new med Zonegran. Her seizure activity decreased slightly when we first started the drug, but I can’t say that we’ve seen much improvement since then. The side effects of this one have been pretty rough for her so far: lack of coordination, trouble walking, excessive sleepiness, no appetite, slurring of speech, and to top it all off she is having what I’m calling night terrors, where she wakes up screaming bloody murder for a few minutes. Those bear an eerie similarity to the episodes we saw which led to the diagnosis of leukemia. So I’m experiencing a little bit if Deja vu all over again with the Ball this weekend and the nighttime wake ups. I am trying to keep my cool because we saw these night terror like episodes on Topamax too, which is an anti-epileptic drug which has the same mechanism of action. So I’m hoping (and praying!) that it is just one more drug side effect.

Can you even believe with all those side effects that we would keep increasing this medication? Some of the effects should lessen over time as her body gets use to the med and the dose. But, it is so hard as a parent to watch your child go through this, knowing that soon we may give up hope for this drug too. But our next step, the ketogenic diet, requires a 3 month commitment and is very very strict and complicated. But if Zonegran does not work, keto diet, here we come! I honestly have more hope for the diet than anything we’ve tried other than steroids. So as big of a step as it will be, we are ready for it. Of course, we’d still love it if Zonegran knocked out the seizures first.

So despite no major improvements, we have had a good week here in Camp Lejeune. Maddie just adores getting to be with her DaDa so much, and I’m enjoying it too! Having all three of us under one roof for more than a few nights at a time is awesome. We are even all sleeping together. It can be a bit crowded since Maddie hogs the bed, but we’ll take it. And we have a fun weekend planned. Then we’ll be back here together for another week. After that his pre-deployment leave begins and we may head further South to Kiawah to see my Dad around his birthday. So we have some good things planned for the next few weeks and we truly hope to enjoy all our time together with no medical emergencies. That would be very cool.

Love to everyone,
Liz, Brandon, and Maddie

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13 thoughts on “Myrtle Beach Bound

  1. Oh my, a date. I understand how hard it is to get out. I hope you have a great time. I’m thoroughly jealous that you can fit into dresses you wore in college. Wow to you!

    I’m hoping that you have the desired effect from Zonegran. If not will they allow you to wean some of the meds before starting Keto. Also, take a look at the epilepsy foundation forum – some of the moms have had great success with MAD Modified Atkins Diet which is not as strict as keto and easier for older children.

    I hope you have an absolutely fabulous weekend.

  2. Thanks Sinead! We do plan to wean her all the way off the Zonegran before starting the diet and we will probably reduce her Keppra (only on 200 mg bid) once we start the diet after monitoring her levels.

    I too have read alot about Modified Atkins. I’m not sure if you’ve read the Ketogenic Diet book, by Freeman. In the 4th ed. even the Johns Hopkins folks admit to very similar results to their keto diet. Our hospital says they don’t have as much success with it, but they also said they felt many of the people who went that route versus keto may not have been as committed to following it completely (which of course I would…..). I still think we’ll start with keto just to give her the very best chance at success. If it works well, down the road we might try to switch over. Honestly right now, if something worked, no matter how hard it is, I would probably be scared to death to switch it up.

  3. How exciting to not only have a date, but to be getting all dressed up too! Sounds like it will be a wonderful evening for you all with Maddie in great hands 🙂 My husband and I have yet to have a date since having Kylie and have only been away from her for less than an hour, just so we could run to the store. So yes, I am jealous!

    Enjoy your weekend and have a great time at the Ball..this night is for you guys!

    Hugs and prayers,
    Jody

  4. Sounds like a great weekend in store for you guys. It’s funny, a date is something you wanna get really excited about, but then you always feel weird about leaving your kids or kid behind. I hope you are able to have a good time. Lord knows you’ve earned it. We all have.

  5. You know you have to post pics, right? Too bad if it’s difficult with your i-phone! We’ll riot without a pic of you two all dolled up! 😉

    It’s funny how memories haunt us…and how hard we try not to let them…

    I hope this new memory is filled with sweetness enough to eclipse the sad…

    ((((((((hugs)))))))

    …danielle

  6. I am excited for you. I hope this is like a 2nd honeymoon for you and Brandon. Have a great time and be sure to post photos. Maddie will be in good hands with your mom and Lance.

  7. Yes, I own Spanx and STILL can’t get into anything from college or should I say from my pre-pregnancy days because college was just way too long ago to even have anything from those days.

    My hubby and I shared a bed with Sophie for a little over 2 years. It has only been in these past few weeks that she has been sleeping in her own bed.

    Hopefully, you won’t have to go on the keto diet but if you do, I can help you out. Sophie was on it for 6 months. Once you get in the groove, it gets a lot easier.

    I hope you have a wonderful weekend filled with happy memories in the making.

  8. It sounds like you have a wonderful weekend planned. I hope you have an awesome time.

    My daughter takes Zonegran & Keppra and has for quite some time. She still has tons of seizures but the side effects went away pretty quickly. Taylor was never a candidate for the ketogenic diet because of other issues but I’ve known several children that it worked very well for.

    I think we are getting ready to add the new drug Banzel as it was designed with Lennox-Gastaut in mind. Now that we’ve got Taylor totally weaned off of Lyrica, heres to hoping the Banzel works.

    I have a thing for men in uniform, my husband is a former cop, so can I be just a tad jealous of your Ball?

    Again, I’m wishing you a great weekend full of happy moments.

  9. Liz & Brandon –

    I hope you had a wonderful date night – you deserve it! And while time away from your little ones is always fun – what’s even more fun is the reunion! I can’t imagine how excited Maddie was to see her Mom & Dad! I hope a night away gave each of you a fresh burst of energy, some much needed time alone but also served as a reminder of how much the three of you love each other. Kiss Miss Maddie from all the Sextons. We think of you every day.
    With love,
    Carrie

  10. Liz- Thanks for the comment on my blog; it is always great to hear from other families who are walking a similar path. I have been reading pieces of your blog and I admire your courage; you are a great mom and wife and Maddie is a beautiful little girl who is blessed to have you fighting for her. I would love to stay in touch so I am sure I will hop over to your blog from time to time. I hope you had a great time at the ball with your hubby.

    Blessings from another IS mom- Kelli

  11. In other news…

    Just wanted to let you know that I forwarded The Lemonade Award to you in my blog today. It’s one of those ‘pay-it-forward’ type of things, pointing people in the direction of blogs I dig muchly.

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