Well it’s the day before our marathon! I am so excited! And nervous! And there is a hurricane coming…..what funny timing…..Which will make us even more awesome for completing this race.
Maddie and I have been sick this week, so lots of the things we needed to get done just didn’t get done. Oh well, we’ll live. One thing I did get done is to have shirts made for Brandon and I to wear in the race. And the design is so awesome, I want to share it with y’all. I’ll have the page up next week and will post it here then.
You’ll be able go to my page on the spreadshirt website and order a shirt if you’d like. Initially I planned to sell shirts as part of my fundraiser but I procrastinated too long for that. So if you want to show your support for Maddie by wearing a shirt, check them out (next week). There are a few to choose from. The shirts say “Team Miles for Maddie”. So if you want to be on our team, all I ask is that the next time you go out for a run ( or a walk or a bike ride……) that you spend a few minutes thinking about all of the children who cannot do those things because of epilepsy. Though Maddie can walk (with assistance for safety) many children with her type of epilepsy never walk or run or even crawl. The seizures often begin so early that these children never get the chance to experience normal development. So even though epilepsy may not technically take their lives, it robs them of the opportunity to experience life in the most basic ways. So…..please take a moment to recognize how lucky you are and think about (or pray for) all of the amazing people who struggle because of seizures.
I’d like to thank all of you fantastic people who have donated to my fundraiser. Many of you even did so anonymously, but I know who you are! And I couldn’t be more appreciative! If you haven’t donated yet but would like to, here is the site.
I recently found out that some of the thank you emails I sent our via the website were not received. I have no idea why but I’ll be following up with the folks from CURE next week to find out. If you donated and haven’t received thanks, I’m so sorry and I will remedy the situation as soon as I run a marathon!
One important thing to note about epilepsy research. Even if epilepsy isn’t the cause you feel most personally drawn to, it is research that benefits more than just those with epilepsy. There is so much still unknown about how the brain works and why meds work the way they do on brain activity. Treatments for epilepsy often end up being used in other ways, like to treat migraines, mental illness, and many other neurological problems. So your dollars can help more people than you realize when you support epilepsy research.
I’ve been meaning to write more about what has been going on in Maddie’s life and in treatment so I’ll give you a shortened version and expand upon it later once all the marathon craziness is behind us.
Maddie had two monthly rounds of extremely high dose steroids in an attempt to control her seizures. While we saw some initial improvement, it wasn’t enough to continue such a potentially dangerous treatment. After failing that her doctor felt our next best option is the Vagus Nerve Stimulator, an implanted device. You can read about it here. While I see the possible merits, I am just not quite ready to go that route. So while I try to get myself (and Brandon) mentally on board with that option, we are trying some less drastic changes.
We recently put Maddie on a gluten and dairy free diet. We saw some pretty good results at the start of it so we are sticking with it. Unfortunately seizures have fluctuated quite a bit so it’s hard to know how much improved they are. The dietary changes have been easy for her, but a bit harder for me since I now do A LOT more cooking and less takeout. It’s definitely better for all of us (Brandon and I have gone gluten free too just to make meal preparation easier on me). But it is more work.
We have also reduced the level of one of her seizure meds a bit, and we plan to wean it to a much lower level to see if we can get some developmental improvements. At this point her seizures are so bad that we aren’t sure that either of her meds are working so we will likely add something new soon too, but we wanted to at least reduce one of her current drugs so that she isn’t so heavily medicated. The dose reduction seemed to cause an increase in her seizures, so we have stopped reducing for the moment. We aren’t sure what is causing the increase, it could be the fact that she hasn’t slept well since we changed the dose. And now with a cold and sore throat, there’s another variable thrown in that could be a factor. So we are waiting for her to get back on a more normal sleep schedule before we resume the wean. It’s always interesting here!
So that has all been complicating “normal life” for us since the move. The other most important thing for Maddie has been her transition to Kindergarten in Wake County. Unfortunately, I can’t say that I’m pleased with it in any way. We had been in one class since the start of the school year and have been trying to give them time to figure Maddie out and how to meet her educational needs. But it just isn’t happening. And so now we’ve begun the process of asking them to change her placement. We are hoping to put her in the Autism class as those teachers are trained in structured teaching which has been most successful for Maddie in the past. So we are again at the mercy of the school system waiting to see where they place her next. It’s funny, I knew we were happy with the Department of Defense school at Camp Lejeune but I had no idea how much better it would be than the public school system in NC. You don’t know what you’ve got until it’s gone, I guess. Her teacher and I weren’t always in agreement, but she was always aggressively pursuing ways to teach Maddie. Here I have to beg for them to teach. It’s essentially a daycare for disabled children. And I’m not looking for daycare for Maddie. So we push on, hopefully I’ll have better news on that front next month.
Another piece of the educational puzzle that is just now coming into place is Maddie’s ABA therapy. When we tried to resume those services here in Raleigh, it was denied by our insurance. Tricare, in its infinite wisdom, decided ABA is only medically necessary for children with autism spectrum diagnoses. So they encouraged me to try to get Maddie a diagnosis. I am extremely pleased with our insurance most of the time but this is one of those less than rational policy decisions that irks me. So in the interest of getting Maddie the services she needs, we’ve added a new diagnosis to her list: PDD- NOS, pervasive developmental delay – not otherwise specified. So now we’ve got that. Which means we can get her ABA therapy reauthorized. And that it should be easier to justify placement in the autism class in Wake county.
So it’s been busy. And I really hope all the preparation begins to pay off soon. Because right now she’s missing a lot of school and therapy and those are things she really needs.
Thanks again for keeping up with our previous girl. And if you need the fundraising link again, here it is.
Thanks so much for your support! Sorry for not posting pics but I don’t know how to do that from my phone.
Love to everyone,
Liz, Brandon, and Maddie