Makin' May Matter

It's May again! Pediatric Stroke Awareness month! Yahoo!


Ok, well not yahoo, exactly. But I was more excited for it this year than I was last year. That first year was just so tender and vulnerable for me. It's hard to have a big diagnosis for your child and find the balance between facing the challenges with determination and yet working so hard to not let it define your child or your family.
I can't say I've found that balance but Darry is so. much. fun. And that is cathartic and distracting. Or rather, enjoying Darry moves my center to something other than the worry and fear which goes beyond being distracted and into something much sweeter.


I signed Shaughn and I up to attend the fundraiser "Wishes for Warriors" for the Pediatric Stroke Warriors organization. We dressed up, dropped Darry off at my sister's and headed out to Issaquah where the event was being held. We bid on several silent auction items but were outbid. The tables displaying the silent auction items had pictures of children affected by stroke. They were so beautiful and inspiring and, yes, sad. Shaughn was especially impacted by the pictures. There was one of a little girl in the NICU hooked up to an EEG and a breathing tube and Shaughn and I both felt our hearts leap into our throats. Reminded us of our little guy.
We met some families who have been impacted by pediatric stroke including Pediatric Stoke Warriors founder, Kaysee Hyatt and the Family Outreach Coordinator, Jamie Jonz. I maybe gushed a little too much to both of them, including telling Jamie that I think of her as family because I have cousins with the last name Jons (yes different spellings, so no, not the same as my cousins at all). I'm such a dork.


There was a wine ring toss where, for $15,  you could toss 3 rings at a table of wine and beer bottles. If your ring rung a bottle, it was yours and as a bonus some bottles also had additional prizes on the bottom. I was feeling pretty proud of myself getting a bottle, only to realize that I had won a bottle of Martinelli's Pear-Apple cider. For those of you not familiar, it's a non-alcoholic sweet, inexpensive cider. We get it for my nieces at family gatherings. BUT, on the bottom was an overnight stay at the Alderbrook Resort on the Hood Canal! I'm super competitive so I had to really fight the urge to jump around and yell "Suck it!" to all the nicely dressed and well-behaved people.
Riding our high, Shaughn and I bought raffle tickets to win one of the big ticket items before they were auctioned off in the live auction. And I won again! We picked out a weekend stay in Winthrop at the Sun Mountain Lodge including a Washington Wine Passport. I actually felt a little bad winning so much. I mean, I'm sure they had meant for the prizes to be distributed a little more evenly but as my hair stylist says, "You've got some good juju."


I also participated in the Streak for Stroke event by meeting up with Kaysee to get purple streaks in our hair. I went a little darker this year which has the added bonus of allowing me to moonlight as a moody goth kid.


Before I left from work to get my hair streaked, I told my boss what I was going to do. I didn't explain it very well at first and she was really concerned that I was telling her about my streaking habits. Very practical, she asked, "So what does having a streak in your hair do?" I just said it was a talking point and a little something to show some support and attention to pediatric stroke which isn't well known. She nodded nicely and wished me good luck with my evening.



And the evening went well. Although when I arrived I underestimated the space next to Kaysee and sat way too close which was weird for both of us. But I recovered and we swapped stories about our kids and what the journey has been like so far. We also talked about how to get the facts of pediatric stroke, one of the top ten causes of death in children, included in the cpr/first aid training that child care workers are required to maintain.



I had renewed my infant and child cpr and first aid last month and I was so disappointed that it didn't cover pediatric stroke (almost all the people in the class were child care providers).  They didn't even go over the basic FAST which is for adults and children alike.


F ace  (Is one side of their face drooping? Can they smile symmetrically?)
A arm (Can they lift both arms?)
S peach (Ask them to repeat a phrase.)
T ime to act! Call 911 if you see any of these signs of stroke


They also didn't cover any seizures besides the generalized tonic-clonic seizure (grand mal) which are not the only kind of seizures although they are the most dramatic. You wouldn't miss it, but you might miss some of the other types of seizures. Which is why it would be helpful for these classes to cover the signs, because they are there if you know what you're looking for. And Darry is at a risk for future seizures and it's scary to think that the child care community, as a whole, isn't being trained to know what they are and what to do if they see one.


This has really put a bee in my bonnet, so to speak. I've been reaching out to different communities who build awareness to see how we can get this information included. More infants and children are affected by stroke than children who require CPR, and we have specific trainings on how to give CPR to infants and children. Stroke feels more rare because we don't hear about it as much. So it was incredibly encouraging and inspiring to connect with Kaysee and I'm excited to see what kind of opportunities to get involved will come up.


The next morning, I came into work tired. My boss came right as our meeting was getting going and sat next to me. When the meeting was over she showed me her purple streak of hair. "It's brought to you by a scented purple marker." I was shocked. I couldn't even make sense of it at first. I almost said, "Hey I got one too!" thinking it was some kind of coincidence. And then it struck me that she had done it for me. "Well I thought I'd show a little solidarity." It was so sweet, I cried in the coffee shop where we have our meetings (but it's not even embarrassing because it wasn't my first time crying in that coffee shop. The world's your oyster to cry in, that's what I always say). Even though this is the most I've been involved, and I'm a part of some badass online communities, I didn't realize how lonely I felt until that moment.


______________________________________________________________________________


Yes yes, but how's Darry?
Darry is doing great! He passed his 18 month assessment with the Occupational Therapist and Physical Therapist with flying colors in January. He definitely prefers his left hand but still uses his right very well. He's running, jumping, drawing, and is in full-swing with a word explosion. Some favorites are:
a-buh-ga-buh-go  for avocado
dah-bee for strawberry
tah-koo  for Thank you
bor bidits for more minutes (As in,
"Darry time to change your diaper!"
"Bor bidits!" )


One possible side effect from a stroke can be hearing loss if the stroke affected any of the nerves connected to how we hear. There can also be issues with how they process what they hear--meaning the structure of their ear is fine, and their nerves are fine, but the part of the brain that computes what we hear into sounds/words/etc and then initiates a response of sounds/words can be affected. When we went to Darry's 18 month regular doctor check up in January I mentioned being concerned about Darry's speech because he didn't have a lot of words yet and when we tried to encouraged him to say words, often he would just repeat "bah." She recommended getting his hearing checked so we scheduled an appointment. By the time the appointment came, he was Mr. Chatty Kathy and I decided to go just to be a good follow-through mom. Well he didn't pass his hearing test. There were three parts, two of which were having a small ear bud that measured certain responses of the ear hair follicles and ear drum. He didn't pass either test, but we chalked it up to a cold. The third is a behavior test where they play sounds in one direction and he's supposed to look in that direction. Well, he did this some of the time, but also got bored and then just chatted to the assistant. He didn't pass that one either. We went a second time and he still didn't pass. It's probably just remnants of the tough cold season we had this winter but we also don't have a definitive answer, which is annoying. We go one more time, to a different clinic in a few weeks. I actually think he hears just fine, but it would be nice if the test results also said that.


He had a febrile seizure last fall which was very scary but so far has been a one-off. We had an EEG just to make sure it was indeed a febrile seizure and not something ongoing. His EEG came back clear and we've been strident with the Tylenol at any sign of fever. Often kids who have had one will have another and of those kids who have another there is a small chance he could have one that lasted a long time which could potentially cause brain damage or even death. We were given an emergency drug to give him if he has a seizure lasting longer than 3 minutes. But you have to administer the drug rectally! We asked the neurologist and the pharmacist why they didn't have it in an auto-injector form like an epipen. No clue. Anyway, there are now multiple layers to my desire for Darry not to have another seizure.

We have these alphabet magnets that he likes to play with and early March, he started handing them to us and then repeating whatever letter we told him it was. After a week he knew 2 or 3 letters and Shaughn and I were beyond impressed. But after another couple weeks, he knew all of them! Both upper and lower case, upside down or backwards. Because we're so humble, Shaughn and I agree Darry had some good smarty genes to work with on both sides (although we both secretly think it's a little weighted in our favor). He's been learning the ABC song although it will never measure up to Jingle Bells.


Last year when I was writing about Darry I said he was the brave strong soul who was able to swim the river to get to me. And I still think of him like that. My sister said recently, "I realize this sounds silly, but I've always thought of Darry as being one of those buff angels." I laughed and said, "Like Kronk's good angel?" She said yes but not the dumb part (although Kronk's dumbness is my favorite).
But I actually do think of Darry as having a celestial amount strength and fortitude and light. He is so adventurous and happy. He loves running around and isn't phased by things like door jams, or chairs, or the corner of the table. Sometimes I feel like his bumper rail just keeping him out of the gutter--or lakes, or off tables, or from climbing into the sink, or pushing other people's strollers, and so on. Not in a motherly companion on this road we call life way, but in a sturdy expensive mattress that passes the egg test way. But when he is ready to take a load off, we read book after book and he laughs hysterically and teases me that the hyena in Goodnight Gorilla is a dog. Then I get to squeeze and tickle him and feel like his Mama and not just a concerned citizen who's wandered in on the scene.


(Me: It's not a dog!
Darry: hahaha
Me: What is it?
Darry: Dog! hahaha
Me: It's not a dog!
Darry: hahahaha
Me: It's a ___?
*pause*

Darry: Dog! hahahaha)


Pediatric stroke is so scary to say or think about and Darry is doing so well, it is tempting to not actually talk about it. But it's something I'm always thinking about. It permeates so many aspects of Darry's life--how is he walking, running, using both hands, sleeping, speaking, will he have seizures, will he have a learning disability, will he have sensory issues, behavioral challenges? He's been incredibly fortunate but that's not to say we haven't benefited from some amazing health care providers who understand the full scope of what a pediatric stroke can do to an infant or child. I know this because we have run into health care providers who do not understand the connection between their specialty and pediatric stroke. We are incredibly lucky that we live in Seattle that has multiple options for care with providers who specialize in pediatric stroke. Many children are misdiagnosed for months or even years, missing out on initial care that can greatly impact their future success.


So even though it's a sad and scary topic, it's important we do talk about it! Here are a couple flyers about infant stroke as well as childhood stroke. You are welcomed/encouraged to pass them along!

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