So, this is the one-year anniversary of our year with Jordan on the blog. Blog #381. We've had a lot of anniversaries already this year, most of them we'd rather forget (anniversary of her feeding tube, anniversary of her Infantile Spasms diagnosis, anniversary of starting ACTH, etc), so they mostly go unmarked. But this is a good one, so I thought I'd mention it.
Not much has changed in the last year, but at the same time we have changed quite a bit. Our motto for 2007 was finding our "new normal" -- I'm not sure we've done that, and I'm not sure we ever will -- so I guess that is our normal. We're trying to get back to "life as usual" with daily schedules & routines, trips & vacations, housework & yard work, jobs & careers, all the while trying to make Jordan a part of that life, instead of the center of it. In some ways we've succeeded, and in some ways we've failed. Although life is never the same after children, it's really never the same raising "newborn" -- whose days are always the same, never learning or doing new things. It is hard not to be discouraged when there is no progress, no change.
But, she's a fish, and we're just going to have to get used to that. No, she wasn't born under the sign of Pisces, and she doesn't particularly like water, but she was born like this, and doesn't know any different. Just like a fish is born a fish, and just is.
We still don't know what to expect, and aren't really sure where the road of our lives is leading, but perhaps that's true for all of us, we're just reminded of that more frequently when we wake up every day to Jordan's unchanging life.
So, here's to another year of "normal." Thanks for blogging along with us.
31 July 2007
29 July 2007
Three Full Copies
Various agencies have asked for Jordan's medical files, so I got a full copy from her pediatrician 2 weeks ago and headed down to Staples for 6-cent copies. Each one cost $23. That's 384 pages, or 20 pages per month, or 0.67 pages per day of her life so far, which seems like a lot for one little girl.
Categories include Medicines & Shot Records, Correspondence (i.e. letters from ALL the other doctors she's seen discussing their findings, and hospital ER & admission records), Lab Results, Xrays, and Appointments (with the pediatrician, which itself was about 3/4-inch thick).
Categories include Medicines & Shot Records, Correspondence (i.e. letters from ALL the other doctors she's seen discussing their findings, and hospital ER & admission records), Lab Results, Xrays, and Appointments (with the pediatrician, which itself was about 3/4-inch thick).
Never A Dull Moment
Finally the week was over (phew!) and Saturday was waiting for us. Devon & Avery joined Ed & Kate for some fishing at Battle Ground Lake (remnant of a Maar volcano) on Saturday morning. Avery told me that she caught the bottom of the lake, and I don't think anyone else did any better.
Then it was off to the Washington County Fair & Rodeo in Hillsboro, Oregon on Saturday evening. Avery & I wandered around to see all of the "amimals," milk the pretend cow (and watch the real cows being really milked, too), and eat junk food for dinner (I'm not proud of this, but Avery did eat 1-1/2 bags of cotton candy for dinner, and that's all. Devon had a caramel apple, and I had a slice of cheese pizza and the other half of the cotton candy -- YIKES). Oh well, we only have 2 more fairs/rodeos planned for the rest of the summer . . . . Consequently, when the rodeo was on, Avery was going bananas on a sugar high. I wanted the calf ropers to rope & tie her, for longer than 6 seconds! But she seemed to enjoy the rodeo. She liked the horses in particular, and wasn't all that impressed with the clown -- and neither were we. Or the bull riders -- none made it 8 seconds for a score (but they all paid $100 for the honor of being bucked off so quickly, ouch).
Yikes, that's gotta hurt, and that only took about 4 seconds
Here's some Barrel Racing, the ladies' sport (along with the relatively new one, Breakaway Roping). These horses are going fast, and Avery loved them. So fast, my pathetic camera phone couldn't even capture the rider on the white horse's back, and could hardly capture the brown horses at all. I won't forget the real camera next time (it was still packed away with the fishing gear). 
Team Roping -- one gets the horns, the second gets the back feet -- pretty tricky
Here come the drill team ladies again, presenting the draught horse "half-time" show. Avery like the buckskin horse the best
I just liked the look of this picture, taken during the final event -- bull riding. None of the riders made it to 8 seconds last night. Oh well, maybe we'll see some scores at the next one, in Pend Oreille County, Washington. 
Today we hit the ground running -- at about 10:00am for me (ahhhhh, sleeping in). Devon & Avery got up earlier and built a new (big) shelf in Devon's office, then we all cleaned up and rearranged Avery's room, sorted things out in the duck barn again (still in chaos from the carpenter ant kill at the end of May), and Devon mowed the lawn & cleaned up the yard. Then went over to nana Noma's to help her out a bit. Her new apple tree needed staked, new curtains needed hung, and Avery joined me on the roof to clean out the gutters. She liked being on the roof, climbed the ladder herself (with mom at the top & dad at the bottom), and really only wanted to spray Devon with the hose while she was up there. Finally I had to reclaim the hose and keep going on the gutters, so she decided it was time to head back down to the ground and go rollerskating in nana Noma's garage.
This one was overexposed so I decided to play with it a little bit. 
Jordan was scoring some snuggles with nana Noma while Avery & I were busy outside
Then it was off to the Washington County Fair & Rodeo in Hillsboro, Oregon on Saturday evening. Avery & I wandered around to see all of the "amimals," milk the pretend cow (and watch the real cows being really milked, too), and eat junk food for dinner (I'm not proud of this, but Avery did eat 1-1/2 bags of cotton candy for dinner, and that's all. Devon had a caramel apple, and I had a slice of cheese pizza and the other half of the cotton candy -- YIKES). Oh well, we only have 2 more fairs/rodeos planned for the rest of the summer . . . . Consequently, when the rodeo was on, Avery was going bananas on a sugar high. I wanted the calf ropers to rope & tie her, for longer than 6 seconds! But she seemed to enjoy the rodeo. She liked the horses in particular, and wasn't all that impressed with the clown -- and neither were we. Or the bull riders -- none made it 8 seconds for a score (but they all paid $100 for the honor of being bucked off so quickly, ouch).Getting started at the rodeo, the drill team presents the flags (of the sponsors)
Hmmmm, 8 seconds on a horse or bull doesn't sound like very much, thought the rodeo rookies. . . .
Yikes, that's gotta hurt, and that only took about 4 seconds
Here's some Barrel Racing, the ladies' sport (along with the relatively new one, Breakaway Roping). These horses are going fast, and Avery loved them. So fast, my pathetic camera phone couldn't even capture the rider on the white horse's back, and could hardly capture the brown horses at all. I won't forget the real camera next time (it was still packed away with the fishing gear). 
Team Roping -- one gets the horns, the second gets the back feet -- pretty tricky
Here come the drill team ladies again, presenting the draught horse "half-time" show. Avery like the buckskin horse the best
I just liked the look of this picture, taken during the final event -- bull riding. None of the riders made it to 8 seconds last night. Oh well, maybe we'll see some scores at the next one, in Pend Oreille County, Washington. 
The sugar high had passed, and the kiddo passed out!
Today we hit the ground running -- at about 10:00am for me (ahhhhh, sleeping in). Devon & Avery got up earlier and built a new (big) shelf in Devon's office, then we all cleaned up and rearranged Avery's room, sorted things out in the duck barn again (still in chaos from the carpenter ant kill at the end of May), and Devon mowed the lawn & cleaned up the yard. Then went over to nana Noma's to help her out a bit. Her new apple tree needed staked, new curtains needed hung, and Avery joined me on the roof to clean out the gutters. She liked being on the roof, climbed the ladder herself (with mom at the top & dad at the bottom), and really only wanted to spray Devon with the hose while she was up there. Finally I had to reclaim the hose and keep going on the gutters, so she decided it was time to head back down to the ground and go rollerskating in nana Noma's garage.
This one was overexposed so I decided to play with it a little bit. 
Jordan was scoring some snuggles with nana Noma while Avery & I were busy outside
So, we're suitably pooped for a Sunday night, and I haven't even touched a paintbrush for almost a week (although I still have lots to do!) Maybe next weekend, after the duck barn roof is de-mossed. . . .
27 July 2007
Don't Worry (Be Happy) -- It's Friday!
Yes, yes, we're still here, we're fine, and we're elated that it's finally Friday! It's been a looonnnnngggggggggg week.
Over the last few weeks Jordan's seizures have been increasing in frequency and duration. We finally had an appointment with the pediatric neurologist on Wednesday to discuss what to do next. And, as expected, the options are wide open. For the short term we're increasing her Keppra & Tranxene, and it seems to be helping (yeah). These are pretty "mild" drugs in the seizure arena, and Jordan doesn't seem to have any negative side effects from them, so that's a good thing. But unless her seizures stop completely over the next couple of weeks, we will continue to experiment with medicines & therapies to control them.
There are about 10-15 standard seizure medications out there, and each person reacts very differently to each one. Unlike some of the more standard medicines that work basically the same for everyone (e.g. Tylenol for pain, antibiotics for infections, etc), it's a bit of a crapshoot getting seizure control with medicine. Some people respond well to one drug, but most need two or three if they are to become seizure free (SF). Some people need high doses of one drug and lower doses of another. And some of the drugs, besides affecting brain chemistry, can have really nasty side effects like loss of sweating, extreme lethargy, loss of appetite, aggression, kidney stones, liver failure, etc, and many are toxic at level just slightly above their maximum dose. So, in general the idea is to try to get seizure control with some of the more benign drugs (like Keppra & Tranxene), and save the nasty ones as a last resort (like Depakote & Felbatol).
Well, of course, Jordan's diagnosis of Lennox-Gastaut Syndrome, a particularly nasty form of epilepsy, seems to respond fairly well to Depakote & Felbatol, but I admit I'm a little worried to go there. Other things with fairly good success for LGS include the Ketogenic Diet, and, as we learned on Wednesday from the neurologist, a vagal nerve stimulator (VNS). It is very similar to a pacemaker, and is implanted into the chest during surgery. It stays there until the batteries run out (2 to 8 years), and is then replaced. It tends to take 6 to 9 months to "fine tune" the settings, but in 65-70% of the cases of LGS, it is quite successful in gaining seizure control. The nice thing about the VNS is that it is not any more "work" for us -- whereas the Ketogenic Diet and medications are a lot of work (strict schedules, constant lab draws & doctor or dietician appointments, etc). So, now I have a new pile of homework -- investigate VNS and decide if that should be something we consider for Jordan.
In a way it's nice to have a neurologist who is so easy to work with and open to our ideas, but in another way it's difficult in that it puts the pressure on us to decide what is best. Of course this is what we always want, to be in control and to decide what is best for our own children, but on the other hand it is also indicative of the massive unknown surrounding the brain and seizure control. I mean, if the neurologist, with 30 years of experience, doesn't have a strong opinion about what to do, it must mean that there isn't a clear path to follow for any of us.
So now, without a local dietician to partner with for the Ketogenic Diet, I am on a mission to learn all I need to know about VNS. And most importantly we will need to remember those words of wisdom from Angel: Any decision made out of love is the right decision. With that we can't go wrong.
Over the last few weeks Jordan's seizures have been increasing in frequency and duration. We finally had an appointment with the pediatric neurologist on Wednesday to discuss what to do next. And, as expected, the options are wide open. For the short term we're increasing her Keppra & Tranxene, and it seems to be helping (yeah). These are pretty "mild" drugs in the seizure arena, and Jordan doesn't seem to have any negative side effects from them, so that's a good thing. But unless her seizures stop completely over the next couple of weeks, we will continue to experiment with medicines & therapies to control them.
There are about 10-15 standard seizure medications out there, and each person reacts very differently to each one. Unlike some of the more standard medicines that work basically the same for everyone (e.g. Tylenol for pain, antibiotics for infections, etc), it's a bit of a crapshoot getting seizure control with medicine. Some people respond well to one drug, but most need two or three if they are to become seizure free (SF). Some people need high doses of one drug and lower doses of another. And some of the drugs, besides affecting brain chemistry, can have really nasty side effects like loss of sweating, extreme lethargy, loss of appetite, aggression, kidney stones, liver failure, etc, and many are toxic at level just slightly above their maximum dose. So, in general the idea is to try to get seizure control with some of the more benign drugs (like Keppra & Tranxene), and save the nasty ones as a last resort (like Depakote & Felbatol).
Well, of course, Jordan's diagnosis of Lennox-Gastaut Syndrome, a particularly nasty form of epilepsy, seems to respond fairly well to Depakote & Felbatol, but I admit I'm a little worried to go there. Other things with fairly good success for LGS include the Ketogenic Diet, and, as we learned on Wednesday from the neurologist, a vagal nerve stimulator (VNS). It is very similar to a pacemaker, and is implanted into the chest during surgery. It stays there until the batteries run out (2 to 8 years), and is then replaced. It tends to take 6 to 9 months to "fine tune" the settings, but in 65-70% of the cases of LGS, it is quite successful in gaining seizure control. The nice thing about the VNS is that it is not any more "work" for us -- whereas the Ketogenic Diet and medications are a lot of work (strict schedules, constant lab draws & doctor or dietician appointments, etc). So, now I have a new pile of homework -- investigate VNS and decide if that should be something we consider for Jordan.
In a way it's nice to have a neurologist who is so easy to work with and open to our ideas, but in another way it's difficult in that it puts the pressure on us to decide what is best. Of course this is what we always want, to be in control and to decide what is best for our own children, but on the other hand it is also indicative of the massive unknown surrounding the brain and seizure control. I mean, if the neurologist, with 30 years of experience, doesn't have a strong opinion about what to do, it must mean that there isn't a clear path to follow for any of us.
So now, without a local dietician to partner with for the Ketogenic Diet, I am on a mission to learn all I need to know about VNS. And most importantly we will need to remember those words of wisdom from Angel: Any decision made out of love is the right decision. With that we can't go wrong.
22 July 2007
See, I Told You So, We DID Go To Alaska
We went up to visit my sister Jill & her husband Matt for a fun summer get together. Devon, Avery, Jordan, & I arrived a couples days before the rest of the gang*, but in the end it was Jill & Matt, Devon, Avery, Jordan, & I in the 24 foot camper trailer, Julie, Jack, & Jasper in their tent, and Kim, Wil, & Jamie in the guest room. A great time was had by all, even though the great weather we had when we first arrived had turned to rain within a few days. Luckily it seemed to give us most of the breaks we needed to get out and do some things.
Betsy was able to join us for one day, on her way out of her field camp (2 weeks living in a tent in northern Alaska) and back to civilization, and Julie's husband Jeff also made it down to Palmer on the last day, bringing with him some of the fish he had caught the day before (Kim was over the moon to finally eat some real, fresh, Alaskan fish).
Unfortunately our friend Astrid was unable to make it, due to her father's failing health (we're thinking of you and your family, Astrid).
Here are some of our adventures. Don't forget to check out Julie's blog for more, if you're interested.
*The gang: We met at grad school in Earth & Atmospheric Sciences at the University of Alberta in Edmonton, Alberta, Canada.
Leslie: igneous geochemisty
Devon: stable isotope geochemisty
Kim: geomorphology & glaciology
Julie: archeology
Betsy: carbonate geology
Astrid: carbonate geology
Even Matt is in on the geo of life: he is a geotechnical & soils technician and in his "spare" time is implementing a GIS system (global information system) at work
As for the others:
Jill: high school Spanish teacher
Wil: IT director
Jeff: archeologist
Betsy was able to join us for one day, on her way out of her field camp (2 weeks living in a tent in northern Alaska) and back to civilization, and Julie's husband Jeff also made it down to Palmer on the last day, bringing with him some of the fish he had caught the day before (Kim was over the moon to finally eat some real, fresh, Alaskan fish).
Unfortunately our friend Astrid was unable to make it, due to her father's failing health (we're thinking of you and your family, Astrid).
Here are some of our adventures. Don't forget to check out Julie's blog for more, if you're interested.
*The gang: We met at grad school in Earth & Atmospheric Sciences at the University of Alberta in Edmonton, Alberta, Canada.
Leslie: igneous geochemisty
Devon: stable isotope geochemisty
Kim: geomorphology & glaciology
Julie: archeology
Betsy: carbonate geology
Astrid: carbonate geology
Even Matt is in on the geo of life: he is a geotechnical & soils technician and in his "spare" time is implementing a GIS system (global information system) at work
As for the others:
Jill: high school Spanish teacher
Wil: IT director
Jeff: archeologist
Northern Exposure
Talkeetna -- gateway to Denali (Mt. McKinley), and inspiration for Northern Exposure*. Both Kim & I wanted to go check it out. It was raining like crazy, and totally overcast, so I didn't get to see Denali itself, but Kim did get to have the Northern Exposure feel as we wandered around town & had some down home, no frills sandwiches and soup for lunch, followed by some delicious home made pie for dessert. We also enjoyed the river, but not as much as Jasper did!
*But just so you know, if you don't already, Roslyn, Washington was the real home to Cicely, Alaska. Take a look.
*But just so you know, if you don't already, Roslyn, Washington was the real home to Cicely, Alaska. Take a look.
Where's The Fish?
The boys went fishing most mornings, and finally went out with a guide on the morning of the 4th. Still, all they came home with were a few sardines. . . . Now Devon is planning to head back up in a couple weeks to try it again with Matt, and Wil is trying to schedule the trip in, too. Better luck next time guys.
Everybody Loves A Parade
Ahhh, yes, the Wasilla, Alaska 4th of July parade. Just like the parade I used to be in when I was a kid -- riding my horse with my 4-H group. Big cars, little cars, tractors of every size, horses, dogs, chickens in wagons, clowns, all the usual stuff. Anyone can join in, which became apparent as we sat there for close to 2 hours, unable to leave because of the road closures. Jamie & Avery got a kick out of it for sure, and thought they scored BIG with the candy. It's all relative -- they each got 4 or 5 pieces as they weren't very aggressive like the bigger kids. It rained all day, except during the parade -- lucky us.
First a quick pose for the sisters before we headed off to the parade
We lucked into a great spot right along the route
Jumping for joy, waiting for things to get started
Then they decided to wait in the van for awhile
Lunch before candy
Finally, some candy
And now for some of the entries
Its over, now we can play with the speaker-phones (aka walkie talkies) again
We lucked into a great spot right along the route
Jumping for joy, waiting for things to get started
Then they decided to wait in the van for awhile
Lunch before candy
Finally, some candy
And now for some of the entries
Its over, now we can play with the speaker-phones (aka walkie talkies) again
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