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