Having a child with seizures means out of the blue 911 calls, ambulance trips, and a one time airplane ride to the closest Emergency Room.
Having frequent trips to the ER, starts off with us being an emotional mess, then we become an anxiety apprentice, then we move up to a composed looking adrenalin running junkie. Now, with all the ER madness, there is of course room for the inappropriate awkward funnies that we realize only in hindsight when seizure shenanigans have settled down.
Here are some of our ER bloopers....
The This is Not Social Hour
While the ER medical team was in the middle of trying to control Isabella's first grand mal seizure, I realized that I knew one of the nurses taking care of her, as she was the parent of one of my former students. In the middle of the serious stressnesses going on I blurted out, "Hey, I know you. You're one of my student's parents. How have you been and how is your son?"
What? You want to catch up right now, when she's busy intubating your daughter?
The Famous Dr Potter
On one of our more settled moments in the ER (if there is such a thing), the ER doctor asked us about issues that our daughter has. When we got to the part wherein we mentioned she has renal issues, the doctor and I then had this conversation...
ER Doc: So who is your nephrologist over at Packard?
Me: Dr. Potter
ER Doc: Oh you are so lucky. Your doctor is world famous.
Me enthusiastically: Oh yeah really? Just like Harry Potter?
Connected? Duh, I don't think so? Makes for some really intelligent conversation.
The Unnecessary Trivia Time
When Isay's seizures were finally controlled, the ER doc gave us a run down of medicines that they gave Isabella.
ER Doc: We gave her doses of Verced, Ativan, and Phenobarbital. But even while she looked like she was still, she was still seizing in her brain. So we need to make her go into a really deep sleep to stop the seizures, so we gave her some Propofol.
Husband in a very enthusiastic manner: Oh! That's the medicine that killed Michael Jackson!
What? Is it trivia time? Was that the daily double?
The Hugger
Isay had a seizure when we were vacationing in Oregon so we had to call 911. We were taken to a hospital in Florence, Oregon. Being a small town, the hospital was not well equipped to handle cases such as my daughter so they called Doernbecher hospital up in Portland and they flew in to help. The Portland OHSU team has taken over the care of Isabella and was able to finally stop the seizure activity. As we were getting to ready to leave (which was an ambulance trip + a small plane ride + another ambulance trip to get to OHSU, Portland), the ER nurse that stayed with Isabella the whole time while she was seizing (4 hours total), touched my shoulder, and I immediately leaned in to give the nurse a hug. Somewhere there I also managed to do a hug with a head leaned on the shoulder, only to realize that what the nurse was actually doing was reaching behind me to reach for the chart in the cramped ER space where I was standing at.
Now, this was a man nurse... an old man nurse. I thought he was being kind that I even leaned my head on his shoulder. Now, I don't recall specifically if I even wrapped my arms around his waist, but there is a good chance that I did. No wonder he stiffened up!
Friday, July 29, 2011
Wednesday, July 20, 2011
She's CRAWLING!
One ordinary afternoon in July, my Isabella started crawling!!!
She has been working on this skill for a loooooong time, and now we can check it off the list!
HAPPY TIMES in our home.
Check out the video.
She has been working on this skill for a loooooong time, and now we can check it off the list!
HAPPY TIMES in our home.
Check out the video.
In case you're wondering she is 19 months old and is 15 lbs in this video.
To see the previous developmental update click here
Sunday, July 03, 2011
The Journey of A Lifetime
It’s going to be the road trip of a lifetime.
I made my list and have packed my bags and made my go, do and see plans for when we reach our destination.
However, I didn’t have a plan for when the travel does not start the way I want it to. In spite of the regular oil changes and upkeep, and diligent car maintenance checks it was almost inconceivable that the car will just not work the way that it should. The engine is not running the way it should, and its making these other noises rather than that low rhythmic hum, and when it reaches a certain speed the whole car starts to jerk and I have to slow down. Looks like were not going to get to our destination as soon as it was planned. I have no other choice but to take things slow.
It’s going to be one really long road trip.
It does not help that we hit the occasional pot holes… it adds on to the worry that the car will deteriorate further. But we try to be careful, even though sometimes it seems unavoidable to hit a bump on the road. But keep trying, we still do and we focus all our energy on getting to the planned destination.
And so we keep driving, slow as we may be.
Tension builds up when a car is tailing right behind us, seemingly nudging to make us go faster. And at first it was quite embarassing that we are driving way below the speed limit. And as more cars pass us by we became more anxious... Are we really that slow?
As we push on forward, there are times we find ourselves in envy of the other cars and SUVs that speed on by. There are also moments where we find ourselves cursing at the sports cars that cut ahead without even the courtesy of using their signal light. And other times, we find ourselves in moments of madness to catch up with at least the regular sedans that pass and sometimes even more so for the cars that have the same make us our own but still are already way ahead of us. Eventually, we understand that even if we step on the gas further down as we could, it could only speed up as much as the car wishes to. We have no control of how much we can actually accelerate.
We have our travel time table, and just like everybody who is travelling on a road, we want to get there on time. But with things not going the way it should, at least for the vehicle that we are driving, that travel time table will have to be tossed out the window. So much for thinking we could get there on time, or at least just a couple of hours late.
We drove on. Slow and steady wins the race as the saying goes.
But wait… what is this smoke coming out of the hood? There are no potholes? We kept our speed at the bare minimum. Uh, oh, looks like we are stopping. Stopping for good? Oh I sure hope not.
So we called the emergency road side assistance. They tried to see what was up with the car, and with that sad sorry look we were told that it can’t get us to where we plan to go... “It’s just not going to make it.” So is this it for us? But we have plans and we want to get there.
Well, we are already on this road, and do not want to be stuck here, and clearly we have to at least go somewhere. So how are we going to get there and where is this place?
We decided to rehash the old plans, and make a new one. The broken down car, we planned on not forcing it to go on and traded them in for bicycles. And the luggage? Well we have to do with just the essentials. Travel light and let go of the unnecessary stuff.
Oh, and we need a map! So let’s see, where do we go, without thinking too much about all the mile posts along the way, to get somewhere for however long it takes?
Starting the trip on the bike is the hardest part. You wonder about the road you’re traveling on and you worry if it would really take you to “a” destination… and you do this despite of checking your map over and over again. There’s also the feeling of exhaustion, and the occasional flat tire, or the fixing of a bent wheel, and the nursing of a wound from falling. But you have to just keep on moving forward if you want to get somewhere. Eventually the training wheels can come off, and you get your sense of balance and rhythm. You start enjoying the feel of the warm sun and the cool breeze, and the remarkable smell of the nature filled air…. Most importantly, you get a sense of freedom that you have not felt in a long time. Occasionally, you even impress yourself cruising steadily with your eyes closed, and from time to time, you surprise yourself even more that you can let go of the handle bars. There are also these intense moments that you catch yourself thinking that getting to the destination does not seem to matter anymore, for the journey is good enough in itself.
Being on a bike trail does not always guarantee a smooth ride. There will be times when you will need to give yourself a push and that extra effort to be able to ride up that steep slope. There are times that you will feel afraid and out of control as you go on a downhill trail. There are also times that you will be cruising steradily on a smooth path. Other times, you might need to walk it off, and still there are also other times that it might be necessary to just stop to be able to to take it all in, or let it all out, or to just simply recollect or reflect. But, it is important to never forget to keep on going. Because the more you try to ride the variety of paths set before you, the more you will start feeling less unsure about yourself and the better you get at maneuvering your way through. You also feel stronger each time you fall off and you get better and better at getting back on.
The good thing about traveling light on a bicycle is that you do not travel on the typical road. After all, there are rules against riding your bike on freeways, and not all freeways are bike friendly, although I think all roads should be bike friendly. Anyways, because we have our own road cut out ahead of us, there are untypical stops that we make along the way. The stops that a 4 wheeled vehicle cannot possibly go to, and this is not a bad thing, in fact if not for our car breaking down, we could have missed out. We’ve seen beautiful pastures with brightly colored wild flowers, thick green forests, rippling streams, majestic rock formations, astounding waterfalls, passionate sunsets, hopeful sunrises, and grand rainbows that can only be experienced being on the bike trails. There are also ravines and canyons that are breathtakingly spectacular.
Being on a bicycle, we get to breathe in life and realize how small we really are in the grandest scheme of things, but at the same time we don’t feel insignificant at all for we all have a purpose. This journey, on this bike, is my purpose.
We’ve met other bikers on the road as well. We trade bike travelling tips and some stories. Some stories exchanged are scary, some sad, some crazy, some funny, but all in the end coming out of it beautifully changed by the journey.
You see we plan on still getting there and we will get there, but where exactly is “there” is going to be a mystery, and I have a good feeling that it’s going to be a sweet surprise. Who needs a trip, when I was afforded a journey?
I have been driving down this wonderfully designed road for almost 2 years now, just us… and our bike.
I made my list and have packed my bags and made my go, do and see plans for when we reach our destination.
However, I didn’t have a plan for when the travel does not start the way I want it to. In spite of the regular oil changes and upkeep, and diligent car maintenance checks it was almost inconceivable that the car will just not work the way that it should. The engine is not running the way it should, and its making these other noises rather than that low rhythmic hum, and when it reaches a certain speed the whole car starts to jerk and I have to slow down. Looks like were not going to get to our destination as soon as it was planned. I have no other choice but to take things slow.
It’s going to be one really long road trip.
It does not help that we hit the occasional pot holes… it adds on to the worry that the car will deteriorate further. But we try to be careful, even though sometimes it seems unavoidable to hit a bump on the road. But keep trying, we still do and we focus all our energy on getting to the planned destination.
And so we keep driving, slow as we may be.
Tension builds up when a car is tailing right behind us, seemingly nudging to make us go faster. And at first it was quite embarassing that we are driving way below the speed limit. And as more cars pass us by we became more anxious... Are we really that slow?
As we push on forward, there are times we find ourselves in envy of the other cars and SUVs that speed on by. There are also moments where we find ourselves cursing at the sports cars that cut ahead without even the courtesy of using their signal light. And other times, we find ourselves in moments of madness to catch up with at least the regular sedans that pass and sometimes even more so for the cars that have the same make us our own but still are already way ahead of us. Eventually, we understand that even if we step on the gas further down as we could, it could only speed up as much as the car wishes to. We have no control of how much we can actually accelerate.
We have our travel time table, and just like everybody who is travelling on a road, we want to get there on time. But with things not going the way it should, at least for the vehicle that we are driving, that travel time table will have to be tossed out the window. So much for thinking we could get there on time, or at least just a couple of hours late.
We drove on. Slow and steady wins the race as the saying goes.
But wait… what is this smoke coming out of the hood? There are no potholes? We kept our speed at the bare minimum. Uh, oh, looks like we are stopping. Stopping for good? Oh I sure hope not.
So we called the emergency road side assistance. They tried to see what was up with the car, and with that sad sorry look we were told that it can’t get us to where we plan to go... “It’s just not going to make it.” So is this it for us? But we have plans and we want to get there.
Well, we are already on this road, and do not want to be stuck here, and clearly we have to at least go somewhere. So how are we going to get there and where is this place?
We decided to rehash the old plans, and make a new one. The broken down car, we planned on not forcing it to go on and traded them in for bicycles. And the luggage? Well we have to do with just the essentials. Travel light and let go of the unnecessary stuff.
Oh, and we need a map! So let’s see, where do we go, without thinking too much about all the mile posts along the way, to get somewhere for however long it takes?
Starting the trip on the bike is the hardest part. You wonder about the road you’re traveling on and you worry if it would really take you to “a” destination… and you do this despite of checking your map over and over again. There’s also the feeling of exhaustion, and the occasional flat tire, or the fixing of a bent wheel, and the nursing of a wound from falling. But you have to just keep on moving forward if you want to get somewhere. Eventually the training wheels can come off, and you get your sense of balance and rhythm. You start enjoying the feel of the warm sun and the cool breeze, and the remarkable smell of the nature filled air…. Most importantly, you get a sense of freedom that you have not felt in a long time. Occasionally, you even impress yourself cruising steadily with your eyes closed, and from time to time, you surprise yourself even more that you can let go of the handle bars. There are also these intense moments that you catch yourself thinking that getting to the destination does not seem to matter anymore, for the journey is good enough in itself.
Being on a bike trail does not always guarantee a smooth ride. There will be times when you will need to give yourself a push and that extra effort to be able to ride up that steep slope. There are times that you will feel afraid and out of control as you go on a downhill trail. There are also times that you will be cruising steradily on a smooth path. Other times, you might need to walk it off, and still there are also other times that it might be necessary to just stop to be able to to take it all in, or let it all out, or to just simply recollect or reflect. But, it is important to never forget to keep on going. Because the more you try to ride the variety of paths set before you, the more you will start feeling less unsure about yourself and the better you get at maneuvering your way through. You also feel stronger each time you fall off and you get better and better at getting back on.
The good thing about traveling light on a bicycle is that you do not travel on the typical road. After all, there are rules against riding your bike on freeways, and not all freeways are bike friendly, although I think all roads should be bike friendly. Anyways, because we have our own road cut out ahead of us, there are untypical stops that we make along the way. The stops that a 4 wheeled vehicle cannot possibly go to, and this is not a bad thing, in fact if not for our car breaking down, we could have missed out. We’ve seen beautiful pastures with brightly colored wild flowers, thick green forests, rippling streams, majestic rock formations, astounding waterfalls, passionate sunsets, hopeful sunrises, and grand rainbows that can only be experienced being on the bike trails. There are also ravines and canyons that are breathtakingly spectacular.
Being on a bicycle, we get to breathe in life and realize how small we really are in the grandest scheme of things, but at the same time we don’t feel insignificant at all for we all have a purpose. This journey, on this bike, is my purpose.
We’ve met other bikers on the road as well. We trade bike travelling tips and some stories. Some stories exchanged are scary, some sad, some crazy, some funny, but all in the end coming out of it beautifully changed by the journey.
You see we plan on still getting there and we will get there, but where exactly is “there” is going to be a mystery, and I have a good feeling that it’s going to be a sweet surprise. Who needs a trip, when I was afforded a journey?
I have been driving down this wonderfully designed road for almost 2 years now, just us… and our bike.
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