Migraines, Infusions, and School, OH MY!

Well, the first week of school is officially over and for the first year ever there were no first day of school pictures. Things have been a little crazy around here.

Ali has been struggling with an intractable migraine for about 6 months now. She has a headache literally every day. Some days it's worse than others, but she is always in pain. It's technically called "Chronic daily headache," but it started as a migraine and it definitely still acts like one, with auras and light/sound sensitivity, etc.  We have tried everything we know how to do to help her. We've seen three different neurologists at three different major hospital systems, we've tried 3 preventative meds, 3 abortive meds, and DHE infusions, on top of all of the little things like supplements and cutting caffeine and regulating sleep etc. etc. etc. Nothing has helped.

The third neurologist is at UNC, and we've just started seeing her. We really like her, and she's trying desperately to help Ali. Last week we Ali had a magnesium infusion, with steroids, pain meds, and benadryl. Apparently it works well for people, but all it did for Ali was cause a severe reaction and make her feel awful!

 This is Ali right before the infusion started...

 

And this was 24 hours later.

 Her face and fingers/toes swelled and was her face was bright red and she was tachycardic. It was a hot mess. We won't be doing that again. That was the Thursday before school started.

Then Monday rolled around and she still felt awful. Then Tuesday, and Wednesday. Finally on Thursday she made it to school. She had a good day, she said, and is glad to be back in school, so there is that. Now we are trying to work out a home bound system that will work for us. We just aren't sure what schedule we're going to go with yet. Probably we'll have her go to school for after 1st block, but we'll see.

Friday she had occipital nerve blocks, and I was hopeful. It's only Saturday, so I guess I'm still a little hopeful. She hasn't seen any relief yet, but they say the steroid kicks in from 3 to 5 days, so for now we wait. I am still hopeful.  She deserves a break.

In other news...

 This guy is back in school. He's in 7th grade, and while he refused to let me take a good picture, he had a fantastic first week. He has friends in all of his classes, got all of the teachers and electives that he wanted, and made it through the entire first week without having a flare at all. I won't count my eggs before they hatch, but I will be thankful for the good times. He deserves it too.

I guess that's about it. We're back to the grind. Back to alarms and lunches and homework and doctors appointments and all of the things. But we have each other, so we're good <3