I've found that it's so much simpler to write a blog post than to post and repost the same stuff everywhere. So, if someone wants to read an update about Sapphire, they can do so here. If they don't, they don't have to read it 10 times just because they follow me elsewhere. :)
Saff's first neuro appointment since her hospital stay a few weeks ago was today. He prescribed her some new meds, said to stick with the magnesium and riboflavin as well as the Topiramate for the preventative. He also said that with the new meds, her allergy/sensitivity threshold should go up within a few months – which means she might be able to eat “normal” foods again for once. We have to wait it out and see.
Because her migraines are so severe and so frequent, we're going to homeschool her through the end of this school year. I've signed her up for Time4Learning (Please put my name – Sadie Lankford – in the box if you sign up!), and am going to look into K12 because it's free here in Arizona. Homeschooling is not something we really want to do, but right now it seems like it's the best decision. We had discussed it during our hospital stay, and I realize my reasons for not wanting to homeschool are pretty selfish (it's too much work, I don't have enough time, blah blah), so we're going to jump in and start homeschooling soon.
Everyone has been great, reaching out and giving advice, suggestions, ideas, tips, tricks, etc for helping Saff with her migraines. We've tried most of them, and so far nothing has helped but we will keep trying. Our goal is to not have her on tons of medications. We've always done everything as naturally as possible, so having her on daily meds is a huge struggle for all of us.
It was interesting that the doctor from the hospital said she has a “chronic illness” because the migraines are so bad. Kind of put things in perspective – first of all to let us know that we're not overreacting, and second of all to remind me that things could be so much worse. When you hear the phrase “chronic illness”, your mind usually goes to something worse than migraines. Yes, migraines suck. Yes, Saff is miserable when she has to deal with them. But it could always be worse. Our hospital stay definitely put things into perspective for us. There's something about seeing toddlers and children with cancer – all with a smile on their faces – when you're trying to throw yourself a pity party.
The days grew long, and we were both exhausted. I was wondering when there would be an end in sight.
I also wanted to throw this out there because without Residence Inn by Marriott, I don't know that I would've survived our week in the hospital.
Why? Because I was about to lose my shit when I was in the hospital. I had never stayed in a hospital for that long before, and without a shower or sleep… well yeah, it wasn't pretty. I was freaking out, and realized that there was a Residence Inn literally a mile from the hospital!
I called Residence Inn, got a reservation right away, and called Rachel. I said, “I'm going to the hotel to sleep. Please come stay with Sapphire for a bit.” For the next three days, we took turns staying with Saff and taking breaks. It helped more than I ever could explain in words.
Had I not been in flip flops and jeans, I would've taken advantage of the pool or the fitness room downstairs, but truthfully I just crashed onto the (amazingly comfortable and cold) bed. I didn't even turn the TV on. I did wake up for an awesome breakfast, though! I'm talking bagels, waffles, fruit, juice… they had eggs, biscuits and gravy… it was all delicious, and FREE. Freakin' FREE breakfast. REAL breakfast compared to hospital food, especially. And here's a shameless #plug:
With more than 650 properties in the United States, Canada, Europe, the Middle East and Central America, Residence Inn by Marriott is the leader in the extended-stay lodging segment. Designed for long stays, the brand offers spacious suites with separate living and sleeping areas. Fully functional kitchens, grocery delivery, 24-hour markets and complimentary breakfast help guests maintain a healthy balance while on the road. Complimentary Wi-Fi allows guests to stay connected to the home and office, while health and fitness options and inviting lobby spaces provide comfortable places to work and relax.
Overall, it seems that the cause of the migraines are still unknown. Could be food-allergy related, could be environmental-allergy related. Stress, lighting, noises, and who knows what else could also be contributing factors. All we know is that she's miserable when she gets a migraine, and it seems that she gets less of them when she's relaxed and in a quiet environment.
Basically it seems that we have to play it all by ear and hope that the meds she's on will help. He said that they could take a few months to fully work, so it's not something we'll see right away. If they help, though, it's something worth waiting for. I only wish we could have gotten started sooner. The neuro also referred us to this relaxation website. He said his migraine patients use it, so we'll see what that's all about.
Thank you again for all of your help, thoughts, and well wishes. They're greatly appreciated.
P.S. I've started trying to get excited about homeschooling, so I wrote this post: How to Homeschool With LEGOs