In Which Connor Has Another Seizure

Today was not a very good day, unfortunately. Connor had another seizure-- his longest ever-- and we had to use his Diastat for the very first time.

Jer's brother was coming in to visit us for the weekend, and it was about five minutes before I had to leave to pick him up. I was getting Connor's stuff ready to go, and noticed that he was making some strange grunty/wheezy noises. Connor was sitting in his chair next to Jeremy, and he was looking down at his feet. I asked Jer if he was okay. Connor would still move his arms and legs and was still responsive, so Jer said that he thought that Connor just "needed to go potty." After two or three more minutes of listening to him I came over and lifted him out of the seat.

Connor was still responsive-- he would track, blink if you blew air in his face, etc, but he seemed to be having some difficulty breathing. He was also really, really drooling, as if he wasn't swallowing at all. I got him a new diaper and went to change him, but he was totally dry. Something just didn't seem right. A few seconds later his jaw started to tremble and we knew he was having a seizure.

I set him in Jer's arms and ran for his oxygen. After we put his nasal cannula on he stopped having trouble breathing, but the trembling progressed into a rhythmic jerking of his jaw. He was still weakly tracking and could move his arms and legs. Jeremy grabbed the camera and started video taping so we could show the neurologist what he was doing.

We didn't really have any instruction on what to do here-- it was kind of a judgement call. Normally we'd administer the Diastat two and a half minutes into a seizure, but normally during a seizure he's not breathing, which wasn't the case here, so we weren't sure if we should give it at the same time or wait a while longer. In the end we waited until after he'd been trembling and/or jerking for five minutes. Right before I gave it to him he stopped breathing and went unresponsive and blue on us. I did rescue breathing until he came back, but I didn't have to do it very long as the seizure stopped about a minute after I gave him the medication. We're unsure exactly how long the whole incident was, but from the time I noticed him making the odd noise to the time he started breathing again it was probably somewhere around eight minutes.

We were told to call 911 any time we had to use the Diastat, so Jer did that while I performed rescue breathing. The EMTs came and checked him out. Since he was breathing well (breathing is a potential problem with Diastat, which is a respiratory depressant) and we seemed to know what we were doing they decided he could stay at home rather than going to the hospital. Connor has been asleep ever since.

Of course it's a Friday. Also Connor's neurologist is out of town until the end of next week. And we have no more Diastat. This is not a wonderful situation to be in, but we'll work on it. What this means, though, is that Connor's current medication is no longer doing its job. That is a scary, scary place for us to be.

Please keep Connor in your prayers as we try and figure out where to go from here.

~Jess

In Which Connor Has Allergy Testing

Connor had his allergy testing done this morning. The doctor listened to my crazy story involving Connor's possible reaction to lavender, and then asked about some of his other medical issues. She told me that she wouldn't be surprised if lavender was the culprit, as it is "extremely strong stuff" and it's pretty telling that since we've purged the house of lavender he's had no major outbreaks of hives. However she went on to say that they have no specific skin test for lavender, and that while they'll use a mixture of lavender and saline to test his skin she doesn't necessarily expect any results given some of Connor's other strange medical conditions. She also recommended we test some common allergy triggers, such as dust mites and pollen, to see if he's allergic to anything else.

So they tested a variety of different common allergens in the area on Connor's skin. This is the first time I'd ever seen an allergy test administered, and they're pretty interesting. First they labeled the inside of Connor's arms with a pen as to which test they were doing where. Next they picked up a sort of grid with tiny pins on the end of little sticks. Each pin was dipped into a different allergen. They pressed the pins down on Connor's arm and each tiny pin pricked an individual area, inoculating it with a drop of the allergen. Connor, surprisingly enough, was perfectly fine with this; he didn't show much of a reaction at all. It's supposed to itch like gangbusters, but he seemed perfectly comfortable. Then they set a timer and we waited to see if anything would show up. If after the time was up you could feel a raised bump and see a red spot where an allergen had been placed, then that was considered a positive test.

They tested Connor for ten different common allergens and also crushed up some lavender and tried that too. He was negative for everything, including the lavender, except for one thing on the list.

Cats. Lovely.

We discussed this pleasant development with the immunologist (they are the doctors who deal with allergy issues in our hospital) and she told us that since Connor's not stuffing up or having red or watery eyes the second we walk in the door of our apartment, and he doesn't seem to have any adverse reaction after playing with Cricket and Loki (or any other cat, for that matter), that she's not concerned about the reaction. She suggested trying to cut down on the areas where cat hair or dander could be trapped, and was delighted to hear that our new home won't be carpeted, as carpet is apparently a hotbed for allergens. She also told us to continue to stay away from lavender and, if possible, other really strong perfumes and herbal scents as well since they might also trigger a reaction. She said she's seen patients who persistently have a negative skin test to a substance even while they're going into anaphylactic shock from contact with that substance. Crazy.

So in conclusion, Connor tested negative for something he has a major reaction to and positive to something he doesn't. Isn't that just our little guy to a T?

We managed to get Connor a swine flu shot while we were there, so it wasn't a totally wasted day. Oh well.

~Jess

In Which We Are Still Not Annoyed

Yesterday morning Jer and I stopped by our favorite coffee shop in downtown Puyallup to grab a cup of coffee and some breakfast. We go there often enough that we're considered regulars; the owner greats us by name and gets our drinks started before we order our food.

While they've got great coffee there, this post is not about Central Perk, the aforementioned coffee shop. This post is about the public parking lot just down the street.

Now, Puyallup has a free public parking lot in the middle of their downtown area, which is fantastic. However, the handicap spot in the parking lot is a regular handicap spot and not a van spot. For those of you not familiar with the difference, a van spot has at least an eight foot "no parking zone" next to it. This allows enough room to deploy the ramp.

Our van has a bumper sticker on the window located on the ramp side of the vehicle that asks people not to park within eight feet. However, no one ever looks at this thing because invariably we'll get back to the car and even though the parking lot is half empty somebody has parked right next to us. Yesterday morning was no exception. Whenever this happens it means that Jeremy and Connor have to go back to the sidewalk (since Jer can't push Connor out of the way and push himself if a car is coming), and I have to get in the van and drive it to a different part of the lot that has two spaces open next to each other so that they have room to get in. Then after I park the car I have to get out and walk back to where they are waiting so that I can grab Connor.

It's completely understandable if the lot is full and there are no other spots for someone to park next to us. No big deal-- it only takes five minutes or so. But it does get a little frustrating when there are fifteen other spots open in the lot and we come back to discover someone has parked right next to us again. At least it was relatively nice outside yesterday. It's especially frustrating when it's 38 degrees outside and raining. So we decided we needed to come up with a solution to this problem.

First we discussed keeping a traffic cone in the trunk of the car and putting it in the space next to us when we parked. But people move cones out of the way or run over them all the time. Then we thought about training one of the cats to guard the spot. No dice-- people move them out of the road or run over them all the time too. Plus our cats wouldn't train too well-- Cricket is terrified of cars and Loki would probably try to get the car to pet him. So we scrapped that idea. Finally after much thought we hit on the perfect solution.

We'll use a duck.

Think about it-- who runs over ducks? No one, that's who. Ducks cross the road all the time, often at ridiculously slow paces, and nobody runs them over. People actually put up signs on the off chance that ducks might be crossing the road, so you know not to run them over. Who does that for cats? Also we could teach the duck to guard the car, which would deter would-be burglars quite handily. Those things can bite hard. No one would move the duck out of the way for the same reason. We'll just get it a Tupperware container full of water and keep it in the trunk.

And if we were trapped in the desert we could cook duck eggs on the hood of the van while we waited for help to arrive!

The only other animal that can sit in a road with impunity and not get run over that we could think of is a cow. But a cow, even a very small cow, would not fit well into our van with the wheelchairs loaded in. Cows would probably be better put to use guarding airplanes, a job which ducks cannot do. Ducks and airplane turbines do not get along too well, but you never hear about cows being sucked into those things, so they'd be perfect for the job.

Anyway, that's the plan. Shortly after we finish putting the finishing touches on our Wheelchair Defense System, we'll start work on our Duck Parking Guard!

I think it'll be a hit.

~Jess

In Which Jeremy Has A Busy Day

It was a very busy day today-- a variety of events and meetings kept us running around all over the place. Jeremy had his initial "what the heck are we going to do with you while you are healing" meeting, and we talked about a few different options, including him taking some online classes in the pursuit of a post baccalaureate degree or possibly working at the Warrior Transition Unit.

For those of you not familiar with the Warrior Transition Unit (WTU), let me give you a brief explanation. When a soldier is injured and they can no longer perform their assigned duties, they are assigned to the WTU in order to focus on the recovery process until they are healed, at which time they either go back to their original job, transfer to a new job, or are medically retired with a severance package. They would give Jer a temporary job that he would be able to perform in his current condition. Now that we have an idea of some of the options Jeremy has, he'll do some research and make a decision as to what he thinks the best path is going to be for the next few months. I think right now he's leaning towards doing some additional schooling; we'll just have to see.

This evening we went to a meeting for the families of the deployed soldiers in Jer's unit. One of Jeremy's commanding officers was back here on leave and gave the spouses a chance to ask questions and hear about how their soldiers are doing. At the meeting, Jeremy was awarded a Bronze Star for his actions in Afghanistan! He has already received a Purple Heart and an Army Commendation Medal with Valor for his time over there, so this was a pleasant surprise for him.

I am, as always, proud!

~Jess

In Which I Take A Nap

I have a guilty confession to make. Today instead of going out to the house and working while Connor was at school, I went home and took a nap.

It was a nice nap, but I really should have been working at the house. However, I woke up this morning feeling totally burned out, as Connor decided several times during the night that he was Not Happy, and I know from experience that if I feel that way on Monday things do not bode well for the week. Since this week is turning out to be an especially busy one in terms of doctor's appointments and meetings, it's especially important for me to get some relaxation time in.

So I took a nap, and felt much better afterwards.

Thanksgiving break wasn't really a break for me, which is funny. Thanksgiving break was five days of All Connor, All The Time. So it makes quite a bit of sense why I would feel kind of exhausted after the holiday. I need my three hours of time to myself four days a week to preserve my sanity. That's why I was so cheery dropping the little guy off this morning; I was imagining my head hitting the pillow.

Everyone needs a lazy day sometimes!

~Jess

In Which I Don't Get Out And Shop

So now that Thanksgiving is over, it's time to start thinking about Christmas!

More specifically Christmas shopping. Here's what I've discovered over the past few months in my shopping forays with the guys.

It's hard.

For starters, we're a parade. I mean seriously, we're about ten feet long going down the aisle. Usually Connor and I go first so that Jer isn't leading the way with his feet-- always a hazard while going around corners in stores that might have preteens in charge of shopping carts. You know, the kind that like to whizz down the aisles while hitching a ride on the cart in lieu of actual steering. The Christmas crowds are not likely to make shopping any less hazardous, either-- especially all of the parents with small children in tow who don't necessarily look where they're going.

Then there's the fact that we attract a lot of attention. Invariably somebody wants to stop and ask us questions about Jer or about Connor, and this leads to traffic jams and also means we can't just pop in or out of a store. We have a limited amount of time in the stores because Jeremy can't currently use public restrooms. So this usually means that we don't get as much done as we were expecting.

We also get a lot of special treatment, which is a little uncomfortable. Whenever we get in a line to check out, without fail either another line opens up and we're magically offered a first-in-line position or someone else tries to let us go in front of them, no matter what position we are in line. Store employees follow us around asking what they can do for us. People try to "help" Jeremy in and out of stores. Then at the same time there are a lot of areas that are woefully inaccessible. Carts and displays make the aisles too narrow for Jeremy to get down. Broken sidewalks or poorly placed parking means he can't get into the store. And a lot of the displays put things far out of reach, meaning that either Jeremy and I have to stick close together or he has to accept the help of a store's "personal shopper."

So instead of braving the crowds this year, I'm doing the vast majority of my shopping online. It's much, much easier than trying to work our way through the stores, there's a wider selection and range of prices, I can have the presents shipped directly to the people they're meant for, and I can still pick out presents that are meaningful. I like to shop at Etsy-- that fantastic site for handcrafted goods-- and I've already bought several of my presents for family members there. I like them because not only are the goods handcrafted (and in some cases custom made) but also because the vendors will often times beautifully wrap the presents and send a card free of charge. And let's face it; you can find a present for ANYONE on there.

I'll still make my annual trip down to Pike Place Market to pick up some stocking stuffers at The Great Wind-Up. My family couldn't possibly do without their annual Christmas morning wind-up toy race, so I have to pick out the steeds for this year's event, a delicate and time-consuming operation that requires a lot of thought. I'm thinking maybe I'll go for walking eye-balls this year. Or zombies. I could put little Christmas hats on them.

But I don't think we'll be putting a lot of Christmas decorations out this year, as they're currently all buried somewhere in the storage unit. And I don't think I have nearly enough energy to complete a project like the gingerbread house we did last year-- completely handmade from scratch. I drew out the pattern to match our home at the time. I might swing by and pick up a kit, but I think we'll probably focus more on the whole real reason for Christmas this year and less on the "look at the pretty stuff we've put up" part. You know, that guy Jesus. Pretty sure this was his holiday before the mall Santas took over.

Anyway, that's how I'll be completing my Christmas shopping. What about the rest of you-- got a plan? Are you slogging your way through the stores or curling up at home with a laptop?

~Jess

In Which We've Got Mail

We had a really neat package arrive in the mail today.

Ms. Tilley's ninth grade psychology class in Presidio, Texas sent Jeremy a packet of letters! They did a unit on managing stress and used some of the blog posts as examples in class, and then each student wrote Jeremy a letter. They also made some huge banners wishing Jer well and took pictures of themselves posing with them. How cool is that?

It was neat to get the chance to read all of the letters and see the fun pictures some of them drew. Here's an awesome monkey for Connor as an example. Jer plans to write a letter back answering their questions.

In other news, we stopped by the house today and got to take a look at the progress. I haven't really been able to work over there this week because Connor has been off of school. He's been having some crazy temperature regulation problems since his last seizure-- periodically his left arm and leg will become really red, flushed, hot, and a little swollen looking, and his right arm and leg will be extremely pale and icy cold with blue nails. It doesn't seem to matter what position he's in or what he's doing, and the strange phenomenon lasts anywhere from thirty minutes to two hours. We're not sure what the heck is going on there, but we don't really like it. At any rate he doesn't really need to be out in the cold as it's impossible to figure out a way to keep one side of him warm and the other side cool, so we've had to severely curtail our time over there. It seems that his autonomic nervous system is on the blink or something. We talked to Connor's neurologist and he was stumped. Anybody ever heard of anything like this? It's really weird and we're not sure what to do about it short of making Connor some stylish asymmetrical clothing.

Anyway, so we hadn't been by the house for a while. We went today and they were putting some of the new windows in! The old windows are aluminum and original to the house (which was built in the early eighties) and if you walk up and stand close to them you can literally feel the cold radiating off of them. I tried it with the new windows and even standing right next them you can't feel a temperature difference! This is really exciting as it's going to be so much more efficient to heat our house now.

We'll have a fairly busy week coming up, but hopefully I'll get a chance to get into the house at least a few days next week while Connor is in school!

~Jess