I am SO glad yesterday is behind us.
It didn't start out badly. Yesterday.
Actually...we were off to a good start. With fun things in the forecast.
Jonathan had an early morning Bible Study. The rest of us normally tag along too...but I wanted to make sure Trevy was well rested for the cook-out fun later.
So I stayed home. Which allowed Trevy to nap. I woke him a wee bit early...so we could shoot down to Grams' house. Where Toby (and Bristel) had spent the night. Squeezing every drop outta their cousins-in-town-time. But Toby had baseball practice. And since his team made THE CHAMPIONSHIP game...skipping was not an option. Jonathan caught up with us...which I love. Cause it just feels right to be there together. As a family. And we always get a chance to talk while we watch.
After practice we jetted right over to Grams'. Where the big family reunion cookout was going to happen.
Trevy was zonked from playing at the field. He still takes two naps a day. And Grams had already made a pack n' play napping zone in her bedroom. So down he went. And in short order was snoozing. So Grams & I did a quick market run.
Maybe it was the fact that Trevy didn't nap for long? Maybe it was the heat? Or the excitement from the crowd? Or the splashing in the pool?
I don't really know what happened. All I know...is from the time I got home from the market and found him awake on Aunt J's lap. Until the time that Jonathan left early to get him home. Where it didn't end until he was asleep. In his own bed.
It was non-stop seizures. Cluster. After cluster. After cluster.
We were lucky to get a 10 minute stretch seizure free.
And it was just so hard.
Hard to breath. I think I involuntarily hold my breath during clusters.
Hard to talk. I don't do convos during seizures. I know it may seem manageable on the outside. But no matter how subtle the seizures are...and they weren't all subtle...during clusters I just can't talk. So if I seemed like I wasn't paying attention to the friendly attempts at conversation. I wasn't. When Trevy is seizing my brain can think of nothing else. He's lost in seizure land. And my heart is chasing hard after him...trying to rescue him. Or at least comfort him. Little else matters.
Hard to watch. To watch my baby want SO desperately to play. To splash. And run. And laugh. Like a normal kid. And to let him...knowing that the exertion was going to induce another cluster. And slay everything normal that he has. To watch everybody keep moving. Living. Reading. Playing. Chatting. While my world crashed to a stop for 20 body jerks. Every 10 minutes or so. And my heart died a little with each one. It's a wonder how it still keeps beating.
Hard to smile. Because the intensity of the heart break is that powerful. And smiles are stolen. Or forced.
Hard to stay. Because even though Jonathan left. Taking Trevy with him. It didn't mean I forgot. Out of sight out of mind is a misnomer. All I could think about was getting home and holding my baby boy.
Yesterday was a hard hard day.
And I am so glad it's over.
15 comments:
That's exactly how Reagan's seizures happen every day of her life. All day. No clusters...there's no definite beginning or end. They just happen all day long. It sucks. Imagine every day like that. But we keep trucking on. Stay hopefuly, stay faithful that someday (hopefully sooner than later) we'll find something to stop these nasty things. And that's exactly what they are, nasty.
Wow...how many hours straight was that? I could not get a read on the overall. Not that it matters, I am just curious.
But yeah...wow, what a VERY crappy experience. And you do feel every single seizure 10 times over...
It SO sucks.
Tera...I am so sorry. It is a miracle that your heart keeps beating.
Ken...Jonathan called me after he got home and said, "that was the worst five hours of my life". And Trevy was awake for another 2...with continual clusters. We've had days like this before. It's just been awhile. Today is shaping up to be more of the same. Although he's been napping for over an hour now...and I'm hoping the extra sleep may help? Who knows... But I did want to mention that I totally agree with you on the rescue meds. Our neuro said if Trevor ever starts to seem like he's losing consciousness...or unable to move or walk...at that point we intercede. Although...I have an IS mommy friend who told me once that when her daughter has those kind of days...she gives her a small dose valium pill. It doesn't knock her out like diastat...but it seem to even out the seizures...and allows her to have her day back. I'm not sure if this is what we have to look forward to through the duration of the wean...but I'm asking our neuro about giving us a script (I forget the precise name) tomorrow. Just to have on hand...
Goodness, my heart began to ache for you guys as I was reading this post. It just makes you feel so sick, and definitely makes the heart stop when you see your child going through this.
I'm sure you had locked Trevy into the mommy seatbelt as long as you could to comfort him. I do hope someone was there to lock you into a hugging seatbelt as well. No matter how long you have been dealig with this...it never is easy to watch your child have so much life taken away in those seizure moments. More reason why we must celebrate and make the most of the moments that are seizure free.
Bad days like that can definitely take you back into those sad, dark places (and rightfully so, this stuff is scary and just plain old sucks)..try not to let it take you down too far...it makes it harder to get back up. I wish I could give you a great big hug. We are praying for you guys always.
Stump-ie...you have to be one of the all time sweetest people I know! Thank you for making me smile...
...danielle
Oh Danielle...I am so glad that day is over too. Changes in sleep patterns, crowds of people, etc always had an effect on Sophie. It's so very hard. Because it is hard enough in the first place to get out of the house and then that just puts everything over the edge.
What a crappy way to spend a family reunion. I hope Sunday was better!
hugs
Danielle...I could feel EVERY SINGLE WORD....I am literally NAUSEATED, as I have been trhough that so many, many times for so many, many years....
I haven't heard many of you IS parents speak of Valium, only Diastat...Since Colby's Dx is NOT IS, I don't know awhole lot of the specifics re: rescue drugs....But with Colby and his drop seizures, I have been instructed to give 10 -15 mg. of Valium (tablet form) after a "flurry" of seizures...There has been only ONE time that he continued to seize after two doses (5-6 hrs. apart)...Usually, the first dose does the trick and keeps them at bay for the rest of the day...Now, I DO have the Diastat in case he does NOT come out of the flurry, but so far, that has not happened....
I would love to see your Neuro OK the use of Valium by mouth to try if you have not....It wouldn't be as strong and take effect immendiately, but it might be an option for you...And it doesn't wipr Colby out....Of course, everyone reacts differently....
It is hard to be alone when you go through this...If your husband is not there PHYSICALLY with you, know that he is feeling the same things and is supporting you...THat is SO important....
I just feel SO BADLY for you guys....I, too, can't (won't) talk, feel sick to my stomach, get in a TERRIBLE mood...Sometimes silently cry....And through all of that, beg God over and over to stop it....
I do understand...I guess that is the ONLY thing I can do for you besides pray...to understand.....
Love you guys...And stay in touch...
Cyndi
♥ ((((hugs)))) ♥
Oh, man, I know that had to have been a nightmare of a day. I know exactly what you meant when you said life just keeps going on around us while we're frozen in seizure land. And all those attempts for the fun day are suddenly tossed out the window.
That's how Austin seemed while on Banzel. The clusters just seemed to come back to back. And in between those were the isolated drops. Never ending it seemed. It can take the life out of you, a good day can instantly turn sour.
But, I hope it's looking up a bit now. How long is the wean again?
((((big hugs for you and Trevy))))
I am so so sorry. So you think it is the effect if the wean and not just the excitement, heat, and more people? Boy, you were serious when you said his weans were incredibly hard on him, even when coming off drugs that weren't doing anything for him.
That just really really sucks. I am sure that makes trying any new drug an even scarier undertaking each time knowing how bad the wean might be. That is just heart wrenching.
I know how disappointing it is when you finally decide to try a public event, only to have it ruined by seizures. I want to have other children, but I am such a homebody because of the seizures I am afraid I would not know how to try to make life "normal" for other kids if we never get past the seizures. I can only imagine how hard it is.
I hope after napping, Trevy has a better day today. Thinking of you!
Thanks everybody...
Sunday was a little better. I think it was just a combo of everything...missed nap, weaning, all the excitment. But it was awful! Just stinkin' awful! Trevy has seizures all day long...but not every 10 mins. We average about a cluster every hour. Sometimes we can squeese two hours. But the non-stop every 10 mins...it's been awhile.
Cyndi...actually another IS mom told me THE SAME thing! I brought it up with Dr. Neuro once...and she just didn't seem too keen on it. And then the bad spell passed...and well...I let it slide. But I'm emailing her today. We need some on hand. For days like that! And btw...your friendship & understanding are exactly what I need! Thank you sweets!
...danielle
I am so sorry it was such a difficult day for him Danielle. It was great to be together but not at the expense of his little body. Hope he is doing better.
What do people do when they don't believe? I would not want to live that way.
Wish I could do more and am appreciative of all the sharing you do here.
Bless your family, Barbara
:(
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