Monday, September 24, 2018
I couldn't explain what the bad feeling was. Or maybe I didn't want to explain what the bad feeling was.
It was completely unfounded.
Except that it wasn't.
How do I know that I won't take my six year old - my beautiful, innocent, intelligent, sometimes sassy baby girl to school one day, kiss her goodbye, and never see her alive again? It happens. Regularly. It's getting to the point that it barely makes the news anymore unless "enough" lives are taken.
Are we okay with that?
And how many is "enough"?
Are we going to continue to think and pray about it? Or is there something else we can do?
Saturday, January 27, 2018
To say that 2018 so far has been a roller coaster would be an understatement. We have all been pushed to our limits, then pushed a little farther, then either reeled back in by a loved one or pushed over the edge and caught by our amazing support network.
I'm going to give you a basic story, because I'm guessing there are people who are curious but don't want to "bother" us with questions. For the record, they're not a bother. I'm happy to answer your questions. And if I need a break from talking about it, I'll tell you that, too.
On January 5th, our five month old was diagnosed with Infantile Spasms, a seizure disorder. We started to notice some odd movements and a regression of his abilities about two weeks before. Following our parental instincts, we took him to the ER on a Tuesday evening. We were referred to a pediatric neurologist, got an appointment for that Friday, and saw a doctor who gave us the preliminary diagnosis within minutes. Then we were admitted to Children's Hospital for more tests.
Infantile spasms shows up in a very distinct way on an EEG. Someone who knows what they're looking at can tell right away if a baby has infantile spasms, even if they don't actually have any spasms while they're hooked up. He got hooked up shortly after we got checked in at Children's and received the official diagnosis shortly after. They continued the EEG with video monitoring overnight, but disconnected him in the morning for an MRI. Something about removing the metal electrodes from his head before sticking him in a giant magnet. You know.
The MRI looked good, which was a huge relief. While it would have been nice to know right away what caused this, it's always good to hear that there is nothing structurally wrong with your child's brain. It's likely genetic, but we won't know exactly until we get the results of those tests back.
We started a high dose steroid treatment the first night we were in the hospital. The nurses gave him the medication, which he then proceeded to throw up all over Dad. We came to the mutual agreement that it should probably be given in two doses, rather than all at once. Dad was a fan of that idea.
We were released from Children's after one night, so we went home on Saturday. We made it home and went about our lives, adjusting to the "new normal" and relying heavily on our fantastic network. In case you don't know how steroids can affect a person, I'll give you a little insight. For our baby, they made him constantly hungry and crabby. Constantly.
It was all worth it, though, because we saw immediate dramatic improvement. When we first went in, we were seeing clusters of spasms - 15 or more in a 5 minute span, 5 or 6 times a day. Before long, we were seeing 1 or 2 individual spasms over the course of the whole day. Our first follow up with the neurologist was a little over a week later, and he was very optimistic. He said things were progressing great and there was a chance we could be done with the steroids completely in a few weeks and never see this again.
We were still seeing some spasms the next week, so we called on Monday at the request of the neurologist and got an EEG scheduled for the next day. The results of the EEG were, again, promising. There was dramatic improvement and it appeared that the infantile spasms were resolving themselves. He noticed some movements still, but called it a myoclonic jerk and said that it was something we most likely would not need to worry about.
On Friday and Saturday, January 26th-27 th we noticed a dramatic increase in the spasms. Instead of two in a day, he went back to having one every hour or two. I was able to talk to the doctor on call who told us to hang tight until Monday and call the clinic then. But if he had more clusters of spasms, then we were told to take him to the ER. It was about 10:00 on Saturday night when we saw five spasms in as many minutes, so I packed a quick overnight bag and we headed off.
We got to Children's hospital shortly after 11 and were taken to a room in the ER. It took awhile for them to get in touch with the neurologist on call again so they could figure out what to do with us, but eventually, around 7:00 Sunday morning, we were admitted to the hospital to get another EEG. This one looked about the same as his previous EEG, so we were presented with two options: we could increase his steroid dose to reflect his weight gain (that's right - our kid got too chunky for his medicine), or we could scrap it and try our next treatment option. Knowing that the next option was an injection that was extremely expensive and would buy us a few more days in the hospital, we opted for the steroids.
We already had another EEG scheduled for the following Friday, February 2nd. We didn't notice much of an improvement this time, so we weren't overly optimistic. The EEG still showed improvement over his first one, but was about the same as his other two. The neurologist suggested that we move on to the next option. We were admitted to Children's again, and that's where we are now.
He started ACTH injections on Friday night and will continue with those twice a day for at least two weeks. This is a hormone treatment that can cause high blood pressure, so he's on medication to combat that. It can cause high glucose levels, so we are monitoring that. It suppresses his immune system, so he's on an antibiotic, we're washing our hands very frequently, and anyone who has been sick or exposed to sickness is being asked to keep their distance. It causes irritability, but Tylenol seems to help with that. A combination of his blood pressure medication, melatonin, and benadryl are being used to help him sleep. Basically, he's consuming a small pharmacy. And lots and lots of breast milk. You probably see "injections" and think "that must be awful - poor baby!" I won't lie and say he loves them, but he actually handles them better than his oral meds. We put some numbing cream on, and after a quick poke, he's done. He absolutely hates taking oral meds. It's to the point where we're not even thinking of trying a bottle or solid food because he's so wary of anything we try to put in his mouth. Dad actually had to plug his nose one time so he would open his mouth enough to get them in. How's that for awful?
Now baby and I are just hanging out at the hospital until we know the medication is on it's way to our house. I'm hoping we'll be out of here tomorrow, Tuesday, but I'm mentally preparing myself for longer.
I'm going to finish this very lengthy post with one last plea. Please please please make sure you and your children are up to date on your vaccines, including the flu vaccine. Even if it's only 10% effective, it will help 10 out of every 100 people. Our baby can't get vaccines while he's on these meds, so we're relying on everyone else to help us protect him. The flu that seems debilitating for a few days to a normally healthy child could be life threatening to someone like my son. So don't be offended if we don't want to hang out with you for awhile, even if you are up to date!
Tuesday, February 7, 2017
- I don't know as much as I should. I will admit that there are a lot of things about which I am ignorant. I'm afraid of sharing my opinion and having someone shoot it down and make me look silly. No more. If I share something that is just outright ridiculous or wrong, I want you to call me out on it, preferably gently and with tact. I will never intentionally share incorrect information, but I gladly welcome intelligent conversation in which all sides (because there aren't just two) can not only be heard, but also listen.
- I've been trying to figure out how to play the middle ground. I have a lot of friends and family members who are extremely conservative, and I have a gift (I think) for being able to see multiple perspectives. I've been taming down what I want to say about a lot of things in hopes that I can still reach some of those who are turned off by the abrasiveness with which people like my little brother sometimes share their opinions. (All the respect in the world to you, Adam! Keep fighting the good fight!) Does that make sense? If I come out and say "The president is a moron." I'm going to lose my ability to reach people. And that's not something I want to say anyway. I will say, "The president does a lot of things with which I disagree."
- I've thought I don't have a voice that reaches enough people to make it worthwhile. On average, roughly 50-100 people have read each blog I've posted. There have been others that have been bigger (miscarriage, mental health, and my lament on what it's like to be a woman in a society that does little to control rape culture), but for the most part, I reach my friends, my family members, and a few random strangers if I happen to chose the right hashtag.
Saturday, January 28, 2017
But here's the good news: ignorance is treatable and often costs nothing but a little bit of your time. Don't know where to start? Here are a few suggestions:
- Mental health
- Infertility and miscarriage
- Child brides
- Forced prostitution/sex trafficking
- Modern day slavery
Walk into a place of worship that is unfamiliar and set up a meeting to talk to their leader. You will likely find that you have more in common than you thought.
Google a cause you know nothing about, find a phone number, and ask to speak to someone who can tell you what they do. Please. I have never heard of a scenario in which someone was upset or offended by another person admitting they know very little about a cause, condition, organization, or issue. The absolute worst thing that could happen is that you waste a little bit of time and are no longer ignorant.
If you have a cause and are willing to share your knowledge or passion, please leave a comment below or share this post so people can reach out to you. If you are even mildly interested in any of the above or any other cause but don't know where to start, leave a comment below, reach out to me personally, or share this post and ask for suggestions.
You may decide, after learning a little bit, that you passions lie elsewhere. That is absolutely fine. But continue to search for your passion. There is no shortage of injustices in need of a champion. You don't have to go into it with the goal of changing the world, but how cool is it that that could be the accidental byproduct?
I came across a quote that reads "Ignorance is the single greatest tool of oppression."
Don't want to be oppressed? Don't be ignorant.
How about one final time, really big?
Thursday, January 12, 2017
He passed away last June. I only saw him and my grandma a couple times a year, so his passing has done very little to change my day-to-day life. But every now and then I stop and remember, especially lately.
My grandparents have been into social justice since before there was a name for it. They're the ones who, when the alcoholic deadbeat they hired to help around the farm came to collect his pay, refused to give it to him and instead gave it to his wife so she could use it to feed and cloth their family before it got lost at the bar. They have always the the quiet fighters for what is right. They care for the poor. Not just with a couple dollars in the collection plate on Sunday, though they knew that was important, too, but with their literally countless hours of volunteer work in their church, their community, and their world.
So today I'm thinking about my grandpa. And I'm crying, just a little, but I'm inspired. He left an 84 year legacy of service, discipleship, and all those other cliches that go along with an amazing man like him. Now it's up to us: his wife, his 9 children, his 21 grandkids, his 6 (and counting) great grandkids, and everyone they touch to carry on that work.
Please, in memory of my grandpa and all those who have gone before us trying to leave the world a better place than they found it, do something today that will make someone smile.
Sunday, October 16, 2016
This is why I carefully consider where I leave my car in the parking lot. Driver's door next to a cart return is ideal. If that's not an option, I park where I'm least likely to have someone park next to me.
This is why I check my back seat before I get into my car. Even if it's parked in my driveway.
This is why I'm scared to run by myself in the early mornings before the sun comes up, even though it's often the only time my schedule allows.
This is why I run in the road if I am passing a home with a privacy fence or lots of bushes along the sidewalk. And why I run on the boulevard and hold my breath (figuratively, of course) whenever a car drives by.
Why I wear or carry two different GPS tracking devices when I run, and why my husband knows how to use them to find me.
Why I'm tempted to leave him with a picture of what I'm wearing every time I leave for a run, including a close up of the tread of my shoes. Just in case.
Why I won't go into the gym if there is only one other car in the parking lot.
Why I started teaching my children, both my son and my daughter, about consent when they were one and three years old.
Why, when I walk or run past the high stone retaining wall, I wonder at its legitimacy. Is there actually just dirt behind it? Or something else? Maybe I'll cross the street when I go past that house.
This is not paranoia. These are the thoughts of a woman living a time when rape culture runs rampant.
When sexual assault earns a slap on the wrist. Or sometimes a high five.
When young girls are taught that if a boy harasses them, it means they like them.
When young boys hear that it is okay, even normal, to show affection through physical, sexual, or emotional abuse.
When a catcall from a passing car has become so normal that it earns an eye roll at most.
I am a woman. And I have had enough.
Wednesday, September 14, 2016
|This is not a rare occurrence in our house. And I can't tell you how many times he has left the house with sparkly princess stickers plastered all over his shirt.|