Family Time

Kael with his Auntie Laurie

We just returned home from my niece's wedding. It was beautiful and I am so proud of Kayleigh and her new husband, Barry. I know they will be richly blessed in their marriage.

It's always such a struggle to decide whether to bring Kael on these trips. On one hand, we want him to see his extended family and for them to get know our special boy. On the other, traveling with Kael is difficult, exhausting, stressful and usually a recipe for disaster.

But this time, my desire for Kael to see my Grandmother, who has only seen him one or two other times, won out. And it was just as I imagined it would be. We (mainly my sweet husband Michael) spent the entire time chasing Kael, trying to keep him happy and safe. We rarely sat and were pretty much constantly on the verge of losing it. And of course, 5 minutes after arriving at my parents' house, Kael had a generalized seizure on the tile floor. I think it was a combination of the stress of the drive, the excitement of seeing all of the new people and luck of the draw. Whenever that happens, the smack of his head hitting the tile rings in my head until it literally sets my teeth on edge. I never get used to it. Even now, after hundreds of seizures, I still get that sick feeling in my stomach just thinking about it. So why, why, why do I it????!!!!

I'm just starting to decompress from the stress of it all, so even as I write this, I feel like I don't completely believe it.

First, I do it because Kael is a part of our family. He is not the only part - so we can't just hide ourselves away for fear of the seizures and the stress. And, he is not an unnecessary part that should be shut away and left at home - this child that everyone hears about, but nobody knows.

Second, he loves to be with people - especially his family. I don't know how he knows, since he's developmentally between 12-18 months of age, but he knows who is family is and he loves them.

Third, and you'll have to forgive my use of the word, but I will be damned if I let this disease control EVERY aspect of my life.

So I look back on this weekend and I am tired, still a little stressed, but mostly...grateful. Grateful that I have a family to reconnect with, when so many are alone. Grateful that I have a husband who sacrifices his time and comfort to care for Kael so that I can be with my dear sisters and their children. And so, so grateful that God has given me this beautiful, funny and infinitely trying little boy. He IS the instrument that God is using to refine me into what I need to be... If I will only see it. I'm great at seeing it after the fact. Once I'm outside (at least temporarily) of the trying situation, I can see how God is using it for my good and I can offer it as a gift to Jesus. It's the recognizing it in the moment that I haven't quite mastered. If only I could conquer that - what grace I would have to handle the struggle! If I could see it through the lens of the eternal - that it is a necessary step to shape me into pure gold...that is my prayer.

So please pray for me. I am far, far, far from keeping my cool when Kael stresses me out. But, I want to!

Update on Kael

So it has been a really long time since I updated this blog. When I started this blog, I planned to update it at least once a month, but life always seems to get in the way. I always come up with these great ideas for topics, but parlaying that into actual substance is another story. I usually only have one arm free, since Thane seems to be glued to my side. So I'm stealing a few moments to write a quick update. In August, I attended the Idea League Conference in Connecticut. A doctor from John's Hopkins spoke about the Modified Atkins Diet and I came home determined to try it. Its success rate is almost as high as the Ketogenic diet, but you don't have to restrict calories and you only have to count carbs...much more doable for us. We planned to start it right away, but my Mother-in-law was having a pure grade of Taurine formulated for Kael and we wanted to try that first. Taurine is an amino acid that we hoped might help his seizures, or at the very least, improve his cognition.

It took a lot longer to receive the Taurine than we had hoped, so we began it on September 30. Although we do seem to see some improvement in Kael's cognition. His seizures have not improved at all. We also began weaning him off of Clobazam. If we look back over the past 6 months, we have seen no change in Kael's seizures no matter what we do. We have raised and lowered Clobazam (and have now completely removed it), raised and lowered Stiripentol, added Topamax, and added Taurine. He continues to have an average of 15 Generalized Tonic-Clonic Seizures (grand mal) a month. The day after we completely removed the Clobazam, Kael had tons of seizures (GTCs, absence, complex partials, non-convulsive status) but after a day, he seemed to go back to his normal schedule. The non-convulsive status was a new thing for him (as far as I know). I didn't actually realize he was having a seizure until it broke. Basically, for over an hour, he was out of it - non verbal, chewing, barely able to walk. At first, I just thought it was a result of having 3 GTC's earlier in the day. I began to suspect it was a seizure when it broke instantly. At least now I know what it looks like and will give him emergency meds after 15 minutes, if it happens again.

Our next step is to start the Modified Atkins Diet. We will begin this the first week of November. After 2 weeks, we will begin to wean the Stiripentol. We have decided to wean any and all drugs, since nothing seems to make a difference. If he begins to have more seizures, then of course, we will stop the wean. But at this point, we feel that the drugs are pretty useless. Our hope with the diet is that: 1)we will be able to take him off all meds 2)his cognition will begin to improve 3)his seizures will decrease. We are not that hopeful that his seizures will decrease, but if we can maintain his current status without drugs, then we will consider the diet a success.

Thank you for your continued prayers and support - it means so much to us!

The Healthy One

So I've decided to write today about Kael's brother, Ronin...because Kael's story is about all of us in the Hsiao clan. Ronin, my oldest, my warrior, I can already see, will be the protector of his siblings. He is fiercely loyal, brave, yet compassionate. A typical response from Ronin if he overhears Michael and I talking about what we would do if someone hurt Kael (like a caretaker) would be, "I'll punch them in the head and then push them down!!" He doesn't have rage so much as righteous indignation. I could totally see him becoming one of those undercover agents who goes into Third World countries and rescues children from slavery.

Even though he is strong and brave, he is also a big lover. Still sleeps in the room with us, although he has (unwillingly) graduated to his own bed. He wants to hug and kiss often and tell us he loves us every chance he can. I love this super smart, amazing kid!

The problem is...he is active. Anyone who knows him, knows I don't just mean normal kid active. I mean he NEVER stops!!! He's like the energizer bunny. This was great when it was just Michael, Ronin and me. But now, we have Kael (who is like 3 kids) and the baby, Thane. Michael and I are always tired, always stressed...never at our best. And for some reason, Ronin always picks the time when I'm in the middle of something with Thane and Michael is in the middle of something with Kael to jump on our backs. Needless to say, our reaction is NEVER good. You'd think he'd learn...but he just keeps on coming. And it's so hard to deal with. Not just for the aggravation of it all, but the guilt we feel for having to push him off or tell him we can't talk right now.

Sure, we give him lots of time and play, but he's the only one who is told, "I can't deal with that right now." Kael wouldn't understand, even if we could tell him that. And Thane, well, is 6 months old. Out of the three, Ronin is the only one who knows he is shuffled aside.

I struggle with this...all the time. I worry so much that when he grows up, he will resent Kael, resent us for putting Kael's needs before his.

But that is where grace comes in. I pray that Ronin will have the grace he needs to see how much we love him. I also pray that Michael and I will have the grace to trust that this journey with Kael is God's plan for Ronin's life, just as much as it is God's plan for Michael's and my life.

Looking at things differently

Kael fell asleep doing one of his favorite things...praying.

Wow - I cannot believe how long it has been since I've updated this blog. Guess that's what happens when you have a new baby and a new dog...life is such a whirlwind. Some new things are happening with Kael. He's learning his colors. He can say "red, green (deen), blue (boo) and yellow (dedow)." Whether he really gets what those words mean are another thing. He is very good at repeating what we say if it gets him what he wants. It's so cute when we're playing in the ball pit and he starts throwing out every color he knows, in the hopes that he says the right one and we give him the ball. He's definitely talking more, in general, and his focus is better. He's doing a great job at cleaning up and taking his medicine.

And...drum roll please...he pooped on the potty yesterday!!! Of course I had to run him over to the toilet and in the process, smeared poop all over my shirt...but he got 99% of it in the right place. Most parents want their kids potty trained at a reasonable age, but we feel a particular urgency because the regression that could happen is always looming over our heads. We've heard from other "Dravet parents" that they don't usually lose the potty training once they get it...but if you miss that window of opportunity, you may be looking at diapers forever. We're hoping to avoid that, if possible...his poops kill us now...can't imagine what it will be like in a few years!

The biggest change that has happened is that Kael is having all of his seizures in his sleep now. Seems to be something that happens for a lot of kids with his syndrome...at least for a time...we just didn't expect it to happen so soon. There are definite pros and cons to this. Big pro - no falling accidents. We're still watchful because you never know when things will change - but it is definitely nice that he is already lying down in a safe place when he has his seizures. Other pro - we are always the ones with him during the seizure...one of us is always lying with him (usually Michael, now that I'm dealing with Thane) and when we're not in bed with him, we are watching him on a monitor. Cons - his sleep seems to be less restful. I think he is having many more seizures in his sleep than we are aware of. Another little girl we know with Dravet recently had an EEG done and they found she was basically seizing non-stop during sleep. I think that might be happening with Kael...he is always so out of it and shaky after sleep. Another con...that he will seize in those few moments we take our eyes away from the monitor. About two weeks ago, I got him to sleep, and went to turn on the monitor in the other room. By the time I got the monitor on, he was already seizing. What had happened if I had gotten distracted by something? Would he have stopped breathing? These are the things that this new change makes you think about. But, all in all, we are thankful for the break from seizures anywhere and everywhere.

We always track Kael's seizures...date, time, place, meds, special circumstances. But we've always broken it down by how many he has a week...2 to 3 times, 4 times, every day, etc. This week, Michael looked at how many he is having in a month...and the number shocked us. He is having about 30 generalized seizures a month! This does not include all of the little seizures...the myoclonics, the absences...just the big "gran mal" seizures....the ones where he looks like he's dying...those are the seizures he is having in abundance.

I feel like I have accepted the ups and downs of this disease and that I function pretty well, but this threw me for a loop. It brought back all of those questions..."Why Kael?" "Why this disease?" "Why his brain?" "How am I going to watch him disappear?"

I was sitting in church the other day...looking up at this beautiful, HUGE crucifix above the altar...and thinking all of these things. And, of course, I started to weep. But then, as always happens, when those questions come, the new perspective starts to inch its way in. I remember that this life is not all there is...that we are eternal creatures...that Kael was created for an ETERNAL purpose. His dignity does not come from what he does, or even from who he is (in the sense of knowing his mind), but from the fact that he is created in the "image and likeness of God." How can it be that a child with so messed up a brain can be made in the image and likeness of God? If how we think and feel defines us...how can that be? What makes us like God...is the fact that we are eternal...that we have a soul. What a gift...that my little guy...who may end up in a wheelchair, totally unable to communicate, is a little picture of God. How humbling. Maybe that's one of the million reasons that God allows these things to happen to our children...to His children. Sure helps me look at my life a little differently.

Life with Kael

Let's face it...life with Kael is hard. We never get a break - he needs up close and personal supervision every minute of every day. We literally have to plan our day around his needs - whether it's offering him 6 different things to try and tempt him to eat, driving around just to get him out of the house, or turning on the tv during a play date because he's had enough. We had so many plans that have changed because of him. We were going to be bi-coastal...6 months in Florida, 6 months in California. But the 5 hour plane trip alone was enough to nix that plan. And taking our kids to Europe or other exotic places? Not a chance. You couldn't pay me enough to risk having Kael in a plane over the ocean. Then there are the really hard things like the daily seizures, watching him fall and injure himself constantly, the hospitalizations, the drugs that make him drunk, the grief at watching this disease eat away at him.

But....believe it or not...Kael, the way he is now, not the way I want him to be or hoped he would be, has been one of the greatest gifts of my life. Whether it's the way he cracks up...hysterically...at a dog barking ferociously as we pass by or how he jumps up in the air, almost in a pike position, and lands hard on his feet, and then waits for the applause to come (he'll do this 20 or 30 times in a row) or the way he screams, "WOW" every single time we pass by one of the hundreds of fountains in our area or the joy he gets from blowing bubbles...endless bubbles...bubbles for hours (I'm not exaggerating) or the sweet way he leans his head in for a kiss and says "Otay?" after each and every little seizure he has (sometimes 50 in a row). When I really think about it...it's even a gift that we get to hold him in our arms, all night long, every night. Now we do that to make sure we are there if he has a seizure in the night, but it is so precious to listen to his breathing and to feel his little hands reaching out to make sure our arms are wrapped around him.

This week another beautiful angel with Dravet Syndrome passed away...Cece Cunningham. She was 3, just like Kael. Sometimes it feels as if these kids names are in a hat, waiting for a giant hand to come and pluck their name out. We never know who is going to be next. I know that we could all die at any moment but it is not the same as knowing that your child has a disease that is working to end his life. In my dark moments, which occur often, I can't help but play the scenario in my head...of finding him gone, trying to revive him, realizing that it's over...it happens so often when I am lying in the dark, listening to him breathe...worrying over every twitch. But then I say, "Jesus, I trust you." Just that. Because the truth is that Kael could be gone before the night is over...and there is nothing I can do about it.

But what I can do is cherish every moment I have with this sweet, crazy little boy who makes my life hard, yes, but so beautiful too.

Reflections

Today we had our new little one, Thane Charles, baptized. As I put the Baptismal gown on Thane, I couldn't help but remember Kael's baptism. He was about 1 month old, and we had no idea what loomed ahead. We only had our hopes and dreams...that he would be as smart as his big brother, that he would be happy, and I always cherish the dream that one of my boys will be a priest. Never, never, never in my wildest dreams, would I have imagined that one day, we would be hoping that he made it to the age of five...that he would not lose the ability to walk or talk. It has been such a readjustment (to put it lightly) of my dreams. But I am learning to replace the old dreams with new ones. I'm learning to allow Kael to be who he is...whatever that means...to know that God has amazing and wonderful plans for Kael - even if they are different plans for him that I would ever imagine or pick. Sometimes, I rage at God about Kael's future. When I see other children his age, or even younger, who are carrying on conversations with their parents, my heart breaks all over again...but then I have to just let it go.

Baptism is the marking of a child as one of God's own...a sign of the eternal. And really, that is what this life is - preparation for the eternal. When I consider this...and that Kael's heart is so much closer to heaven than my own, which is so clouded by pride, envy and all of the other vices of this world, I feel a little more at peace. I think someday, when I get to heaven, through the grace of God, I will finally see the gift in all of this suffering. It's a little harder to see here - but Kael is teaching me to look for it.

And so it begins, again...

We are on the hunt...once again...for a med that works for our son. He has had 4 generalized tonic-clonics in the past 6 days, as well as hundreds of myoclonic seizures. Every time we adjust his meds or try something new - we have a "honeymoon period." It usually lasts about a week and then we're right back to where we were. So we're going to raise his Stiripentol - again- and see if that works. It's always a balancing act between gaining control over his seizures and causing a drunken-like stupor that impedes his development. So we'll see. Is going from 4 seizures in 7 days to 2 seizures in 7 days worth having him be a zombie? Probably not - Ugh!!! I hate this disease!! It is so hard to watch him suffer and wonder if this is the day where we start to lose him...and not be able to do a thing about it. It really makes you realize how little you actually can control. And that is where trust comes in - trust that God knows what He is doing. You hear that all of the time - and it sounds so trite -except in moments like these - when it is the minuscule line that keeps you from going over the edge - when there is nothing left but trust.

Back to Reality

Well, we had a nice little break for 11 days from seizures, but they came back, with a vengeance, on Thursday. He had a few myoclonic seizures on the way home from school, which made me wonder if he would have a GTC, since he hasn't had any myo's since his last GTC. Unfortunately, I was right. Friday was a repeat of Thursday. It seems like no matter what drugs or supplements we try, he always goes back to his 2 to 3 times a week schedule. To make things worse, it now seems like his myoclonics are back to being a daily occurrence.

The good news is that he is growing leaps and bounds developmentally. Kael says many, many words, but it has always been difficult to get him to say sentences. This week, unprompted, he said about 5 different sentences! So we are thankful for that.

Really, we have so much to be thankful for...He's still here, he's happy and loving, and he is still progressing.

Another great thing...he is FINALLY acknowledging his baby brother!

Video of one of Kael's seizures

Beginning Kael's Blog

Ok...so I'm going to try to start blogging about Kael. It's so hard to keep people updated as to his condition..so I'm trying this.

Good news - it's been 10 days since Kael's last major seizure!! We don't know why we're getting this break..we changed his meds about a month ago, doubled his dose of Blue-Green Algae, and last week we added Mangosteen, a supplement, to his diet...maybe it's one of those. Or maybe we're just finally getting a much needed break after 3 weeks of fever and out of control seizures. Whatever the reason - we'll take it. It's amazing how quickly we get used to no seizures. I start thinking about what life would be like if he was seizure free...how I wouldn't have that sick feeling in the pit of my stomach all of the time, how we could go to the park without having to be right next to him, how I wouldn't wake in the middle of the night, feel his cold skin, and wonder if he had died during the night. But for today, I'm just happy to have a break.