I am incredibly thankful for those of you who come here to read about our Maddie. But I’m doing a terrible job in keeping up with it……so I’ll try to give you a long update now, but then I likely won’t update again unless something changes significantly. It really isn’t that much fun to keep reporting how little things have changed. Maddie was 6 in November and things are about the same as they have been for 3 years.

Maddie was a flamingo for Halloween

As I sit here at 2 pm on a Sunday watching my child sleep, it is clear to me that her sleep issues cause us as much difficulty trying to lead a “normal” life as her seizures do. It may be the seizures causing the sleep issues, or the seizure meds, but since moving to Raleigh last May, her sleep cycle has been continuously moving. I know it’s tricky to understand, but what happens is that she just stops wanting to sleep when she should and basically napping whenever she feels like it…..then eventually one nap will become longish and it will become her night. And for some reason that’s always in the morning……
You might ask, why don’t I just force her to be awake during the day? Unfortunately if I wake her, she has seizures, and it happens every time I wake her. And if she wants to be asleep, she’s going to keep falling asleep so I’m going to end up waking her repeatedly only to keep causing clusters of seizures that make it impossible to enjoy any part of her day. So I try to let her lead, but I work hard to “correct” her sleep pattern to a normal one once it becomes clear when her night is. The catch is that once I get it normal again, it usually only sticks for about a week. We finally see a sleep doctor this week and I suspect a sleep study is in our near future.
I worked super hard on her sleep and had it close to normal for Thanksgiving and Christmas. Which was wonderful since we had Brandon home with us this year. Brandon had a few days off for each which was the most we’ve seen him since the move to Raleigh. The recruiting hours are no joke, so between Maddie’s crazy sleep and his crazy work hours, there is not a lot of time together these days.
Seizures are about the same. We aren’t trying something new right now, we are instead reducing her current med levels. After failing the steroid treatment, we began a gluten and dairy free diet for Maddie and had an initial positive response to it. But it was quickly gone and her sleep got really wonky and she began to seem overly sleepy a lot of the time. It didn’t seem likely that eating this healthy diet would be bad for her, and so we tried to figure out what else it could be. The only thing we could come up with is that maybe after eating better for awhile, her GI system began to work better and was absorbing her meds better. Which might explain why she was suddenly seeming overmedicated. So since she has been on two of her meds, Banzel and Clobazam, for well over two years with no success for the last 1.5 years, we thought before starting something else new, we’d try reducing them a bit to see if in fact they are working. And in doing so, we can also see if we get some improvements in clarity without sacrificing seizure control. And so that is what we’ve been doing since September. So far we’ve reduced Banzel four times and though we always see an increase in seizures immediately, by 3 weeks after the change, she has been basically back to her baseline. So it is slow going, but she has more energy, clarity, and personality than she has had in a long time. So it is worth it.
We’ll try weaning the Clobazam a bit next but since it is a Benzodiazapine, we are more worried about how she’ll tolerate the wean. It will be even slower and we expect it might not be as easy. The goal here is not to take her off meds, but to reduce the levels and see if we have any subsequent seizure  increase as we honestly aren’t sure if they are working much at all. That way we can reduce med side effects (extremely slow development) before we introduce a new drug.
We have had a terrible experience with Wake County public schools so far. The class they have put her in is little more than a daycare. So for now, she gets what is called home hospital, where a teacher comes to our house and teaches her for 45 min 3 days a week. She also has ABA therapy in our home 4 days a week for 2 hours each day. We are working on adding in speech, PT, and OT, but based on her sleep craziness, we’ve had trouble scheduling her current therapies and we hate canceling every other week. I’ll continue to work with Wake County special education to see if they can place her in a classroom where I have more confidence there is actually teaching going on. But until then home hospital is a good stopgap measure.
So my goals for the year for Maddie include trying another med or two and if they fail, we’ll be seriously considering Corpus Callosotomy surgery. We’ll try to get a handle on the sleep issues and do our best to get in as much therapy/school as she can tolerate. With the help of our ABA therapists we may undertake a serious potty training regimen, but it’s still unclear if she has all the skills and understanding necessary to potty train her. Because of the seizures, we can’t let her sit alone in a bathroom without strapping her down. And we’d like to avoid making potty time feel like torture. But it would be a huge step for her (for ALL of us) and we think we need to give it a shot. This is as good a time as any since she isn’t in school right now, so she would be under my care in her home environment all the time.
And while all of this sounds terrible, or at least not very promising, the fact of the matter is that Maddie is the sweetest, most precious kiddo to be around. Her therapists and teacher just love her. I can’t imagine having a more amazing child. This certainly isn’t how I expected things to be at age 6 for her, but she is happy, she loves her family, she has incredible spunk and is just as stubborn as both her parents……so we just focus on the good stuff and trudge through the bad hoping we can make things better for her.
Thanks again for your love and support!
Love to everyone,
Liz, Brandon, and Maddie

9 thoughts on “2013

  1. This post reminded me why I have come to love your girl. Seems unbelievable to think that Maddie is 6 and Zoey will be the same in less then 2 months. They both were just such little babies when we ‘met’ in this crazy world of blogging. Two moms, with two children, fighting similar unfair battles. And now, two girls, happy, filled with joy, spreading their love with their infectious smiles and indomitable will to survive. and we, the two of us, mothers just doing the best to find our way, right alongside these little loves of ours.

    I know where to find you. And you me. And hopefully sooner rather then later, you will be my way, visiting your sister and I will be able to give you a huge hug and tell you in person just how amazing I think you are.

    We didn’t sign up for amazing or inspiring but it becomes our duty, to our children, to wear the titles and honor their lives and rally daily, all simply because that is what they do.And they do it with grace and forgiveness and unconditional love. They are our road map on this journey and where they go, we follow. So we go. Together.

    Be well. Love to you and your girl.

  2. Hi Liz!
    Thank you so much for the update. Maddie is getting to be a big girl and very beautiful too! I’ll keep her in my prayers. You stay strong, mom and rely on the Lord every day to get you all through the tough times.

  3. Thank you for taking the time to write this Liz. I LOVED the pictures the most. She’s so beautiful and you can see her happiness. 🙂 Your strength inspires me every day. I had a rough day yesterday so it’s fitting to start today with your letter. Thank you for being you. I truly hope 2013 brings positive changes to help Maddie.

  4. My heart goes out to you guys. Recruiting duty is no joke! You are an amazing mommy, Liz, and Maddie couldn’t ask for a better advocate and caretaker in her corner. Because of all your efforts at Camp Lejeune, you’ve made a huge impact for our Mac and other special needs children. Thank you for sharing Maddie’s story and keeping everyone updated on her special life. You guys are an amazing family and fine example to us all.
    We miss you guys.
    Love and Hugs
    The Sonniers

  5. Thank you so much for the update on beautiful, precious Maddie. I love the pictures. I download them and have a file folder of all the photos you have posted and the ones I have received from your mom in emails. I enjoy seeing how much she has grown and she is always happy. Liz, I continue to be inspired by your strength and love in caring for Maddie and your dedication of helping her become the best she can be. She is always in my prayers.

  6. Thanks for the update Liz. My prayer group at St. Matthews continues to pray for little Maddie, as we have for many years. Your mom and I were in CBS together and I and my church group have been praying for Maddie ever since. I love the pictures of that precious little girl! Prayers for you too as you continue on this very difficult journey. Your courage is amazing.
    Looking for a miracle!
    Dorothy Jones

  7. You are such an amazing and courageous Mom….and you obviously have an amazing child. My heart goes out to you, Brandon, and Maddie. Wish we could see you sometime on a visit to Charlotte.
    Susan Brown

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