In Which Connor Is Heading Back To The Doctor Again

Well, it looks like we're heading back to the doctor's office again tomorrow.  I'll be calling at six in the morning to try and get a same-day appointment.  We've been putting ointment on Connor's arm for five days now but it's becoming increasingly angry looking.  Not only is it really red and sore looking, but the skin is starting to peel up too.  Not good.  If we can't get him an appointment, I'll probably be taking him into urgent care or the emergency room.  I suspect this is a deeper infection than the impetigo we dealt with previously, and I don't think this is something we can wait on. 

The kid is definitely feeling punky; it was a glorious sunny day today and we decided to take him out to the park.  He lasted through our walk around the trail and then fell asleep on the swing.  So we took him home.  We couldn't have been there more than fifteen minutes-- it was probably the shortest park trip we've ever taken.  We put him down for a nap and the kid just crashed.  Thankfully he's not running a fever, but he's not his usual happy self.

The past three months have been incredibly hard on this kid, and the stress is starting to take a toll on me too.  He usually has a tougher time during the winter months, but nothing like this.  I'm starting to have more trouble sleeping at night because I'm worried about him, and that's never a good thing.  I felt really stiff and ungainly on my skates at roller derby practice tonight, and I think it's because I'm so uptight right now. 

I'm going to try and schedule a massage soon and maybe go out with a friend for brunch or something (once the kid is back at school of course-- seems like recently he's been average one or two days a week where he's able to go) because I need to relax.  Connor doesn't need me injuring myself on the track because I'm too stressed, or having a breakdown or something.  Getting some social time with the crafting folks yesterday was a big help, but I think I need more chances to blow off some steam or I'm going to start dropping balls in a major way.

I think the little guy and I both need a break!

~Jess  

In Which I Am So So Tired

Connor needed medication every three hours around the clock yesterday, so I was not the most terribly coherent person today.  Connor was definitely feeling under the weather and I figured I probably shouldn't drive on the amount of sleep I'd gotten, so we spent the day mostly on the couch.  Jer got home around six this evening and I immediately went to bed.  I slept for four hours or so and woke up ravenous but feeling a lot better.  So now I'm eating dinner and then it's back off to bed!

~Jess

In Which Connor's Hearing Aids Are Found!

Jeremy found Connor's hearing aids!

They were on a table in our bedroom of all places, half-buried under a pile of clothes.  I highly suspect that the cats had something to do with this.  So all is well and disaster was averted.  I'm glad they are found, and Connor seems to be pretty glad of it too!  He's been asking for them a lot in the past few days.

Connor's battling a case of insomnia again, which of course means I'll be up until goodness knows what time.  So I'm up listening old episodes of a radio program about adoption and eating a bowl of ice cream.  If I have to stay up until all hours of the night, I might as well get some ice cream out of it.

I'm feeling pretty wiped; I spent some time outside today and also had roller derby practice tonight.  So I'm afraid that I'm writing this about half asleep right now.  I just spent about five minutes staring at the same sentence because I couldn't remember how to spell "bowl."  You know how if you look at a word for a really long time it starts looking increasingly weird and you can convince yourself it's not really a word?  Okay, maybe I'm the only one who does that.  At any rate, I just did it with "bowl." 

Evidently I'm pretty tired.

~Jess

In Which We Have A Crazy Day

Today was one of those days that ended up being kind of ridiculously busy. 

While Connor was at school I worked on some roller derby business, spent some time on the phone with our insurance company and finished (finally!) planting out the herb garden in the forty minutes or so that the weather cleared up.  Then I searched for his hearing aids (which are still AWOL) while he took a short nap.  When he woke up we were off to run some errands, including stopping by our adoption agency to drop off some more paperwork and have a quick meeting with our program manager.  From there we drove directly to physical therapy.  Connor usually has PT on Wednesdays, but we needed to switch our time this week so instead we had an evening appointment, which we ended up having to push even later because we got stuck in rush hour traffic on the way there.  I was supposed to have a roller derby meeting after that and a promo as well, but by the time I got Connor home it was already over and I was absolutely exhausted.

I'm not used to doing so many things out of the house in one day any more-- at least not with Connor in tow.  For the past three or four months he's been having so many seizures that I've been pretty much confined to the house when Jer or his respite care worker aren't here.  I've forgotten just how much more energy it takes to pull an eight hour day of running around with a kiddo!  Connor did really well, though-- he seemed to enjoy himself and didn't get crabby or impatient.  I think that alone shows just how well he's doing health-wise right now.  He especially liked the adoption agency trip-- they had a large sign on the wall that included pictures of some Asian children on it, and he got really excited about that and asked to take it home.  He also asked to take the receptionist home.  We're working on the idea that all people who have  black hair and skin darker than his are not his sister, but I don't think he's quite got it down yet.

Thankfully tomorrow should be a fairly quiet day, and that will give me the chance to recover!

~Jess

In Which Connor Has More Seizures And I Hate Technology

Connor was running a measly 99.0 degree temperature today, and had five seizures as a result.

He was probably running a temperature yesterday and the day before too, but I didn't know that because I'd bought a new thermometer.  This is one of the nice ones that the hospitals use where you run it across your forehead-- I figured it would be a lot better than the armpit or rectal method, which is what we've used with Connor in the past.  Only it kept giving me really crazy readings that were obviously wrong, and I couldn't figure out why.

Yeah, so it turns out there's a protective cap over the sensor of the thermometer.  And you have to take it off for the thermometer to work.  Luckily it only took three days for me to figure this out.  Well, actually it was Jeremy who figured it out.  After he looked at it for about three minutes.

Technology and I are not the best of friends.

Anyway, so Connor's had fourteen seizures in three days, which is not exactly wonderful.  He's sleeping a lot, which is probably what his body needs right now.  This kind of thing is pretty hard on him-- it makes me exhausted just watching.  But we're plugging him full of Tylenol now and that should help.

Other than all the seizing and the mild fever he doesn't really seem all that sick.  I'm hoping that means he'll get over this thing quickly!

~Jess

In Which Connor Is A Sadkin

Well today was not exactly one of the most fun days I have ever had in my life.

Jeremy was feeling better this morning and went into work, but I woke up still in the throes of The Gremlin Invasion and feeling thoroughly miserable.  I crawled into the shower and mentally steeled myself to get Connor up and take him to school.  I figured I could stand about ten feet off and push him over to his aide to avoid the risk of infecting anyone else, and then I could rush home and enjoy three blissful hours of sleep before I had to pick him up again. 

It didn't quite work out that way.

So I went in to get Connor ready at about 8:00 after not hearing any noise from his room, and was surprised to find that he was still asleep.  Normally he starts waking up when I give him his meds at 7:00, and is very ready to get up by 7:30 or so.  I gently woke him up and told him it was time to go to school.  He opened his eyes, took one look at me and burst into tears. 

He cried for the next two hours. 

He was obviously miserable-- basically he was a limp and sodden mess draped against my shoulder who was rapidly covering my shirt in tears and snot.  He would stop crying for a few minutes and drift back off into an uneasy sleep before waking up and immediately starting to sob like his little heart was breaking.  Obviously school was not going to work out so well.  So I called and told them he wouldn't be coming in today as he was sick again and prepared to hunker down with him for the day.  He didn't have a fever and nothing seemed tender; he was just kind of congested (though it's hard to tell if that came before or after all of the crying) and extremely sad.

I quickly discovered that there were two circumstances in which I could get him to stop crying.  I could either cuddle him on my lap and rock back and forth gently with him while singing one of four different songs, or I could cuddle him on my lap and watch TV.  Those were my choices.  Any attempt to put him down, sing a different song, change positions, bang my head against the wall, etc. was met with the same reaction as if I'd decided to stomp a puppy in front of him.  By about hour five of this I was ready for someone to rock and cuddle me. 

And by the time Jeremy came home (around hour ten of this) I was really tempted to shove our son at him and lock myself in the bathroom until past his bedtime. 

So I have absolutely no idea what that was all about.  Normally this is the most laid-back kid in the world, so something was obviously up.  If he does this again tomorrow I'll take him in to see the doctor; maybe he's got a UTI or something that's making him uncomfortable.  Or maybe I just threw off his groove when I woke him up this morning; it's happened in the past.  However normally when he's having a Very Sad Time because of sensory issues when I put him back in his bed he stops crying instead of immediately doing his best impression of a fire engine.

I'm really hoping that tomorrow he's his normal happy self, or that at least by then the Gremlins have moved on.  Then at least I'll have a little more energy to deal with The Saddest Sadkin That Ever There Was.

Not a fun day.

~Jess

In Which Connor Has A Pajama Day

Today was a pajama day.

As you all know, Connor is currently on a number of seizure medications, including Lamictal.  One of the side effects of Lamictal can be insomnia, and we've been seeing that with a vengeance the past few days.  Connor also has issues common to many g-tube fed kids-- periodic constipation and tummy troubles. 

Combine the two and you get last night.

Connor got a grand total of a little less than two hours of sleep.  He had trouble falling asleep, and then once he finally managed it his upset tummy would wake him up and he'd refuse to go back to sleep.  I spent a good portion of last night rocking him in the living room to try and help him calm down-- he was wound up so tightly that he kept gulping air and no amount of venting with the g-tube was helping.  So I kept him in his pajamas today and out of school.  I wanted to make sure the tummy troubles weren't related to something more sinister than his GI system backing up, and also I thought we'd both be absolutely exhausted today and he'd be too tired to be functional. 

Ha.

The kid woke up at 8:30 this morning and refused, despite all my pleading (remember that I also got a little less than two hours of sleep) to go back down.  He also refused to nap.  Perhaps he gets his energy from some alternate, invisible source-- or maybe he was just delirious-- but at any rate not only was he absolutely fine-- no tummy troubles at all-- but he was also bouncing off the walls the whole day.  I put him down at his usual time, and he lay in bed and sang to himself for an hour and a half before finally falling asleep. 

Next time I guess I'll just send him to school.  At least then I'll get a nap.

~Jess

In Which We Have An Extremely Long Day, But Figure Some Things Out

Long, long day today, but I think we might have made some progress.

It didn't start out so hot.  I went down to one of our little coffee shops to get Jer and I some breakfast-- one that we visit pretty often and so are fairly well known at.  I'd been in the day before and so they knew Connor was having some issues, and they asked about him.  One of the customers in the store chimed in.

"Your son has seizures that make him stop breathing?  My nephew has those too!"

"Wow," I said.  "That's kind of a crazy coincidence.  Connor's seizures are really rare, so we almost never hear about anybody else with his type."

"Yeah," the guy said, "they sound just like his.  How old is your son?"

"Four," I replied.  "How old is your nephew?"

"Oh he died two years ago."

Yeah, that's right.  He died.  Two years ago.  From the seizures.

Well, that just made me feel a whole lot better, right there.   Just what I needed to hear.  What a pick-me-up of a conversation.

Anyway, so I went home, and Joanna and Jake came over around 11:00 to watch Connor and work on the deck, respectively.  Jer, Jake and I had only been outside for about twenty minutes when Joanna yelled through the screen door that Connor was having a seizure.  This one didn't last very long-- only about twenty seconds-- but there was no way I was going to wait until Monday to talk to a neurologist.  I called the hospital and had the neuro on-call paged.

He got back in touch with us in about ten minutes, took down all our information, and told us he'd review Connor's files and get back in touch with us as soon as possible.  Once he called back, he didn't waste any time helping us put together a game plan!  The first thing we needed to do was get these seizures stopped, so he called in a prescription for a few low doses of Ativan to our local pharmacy and told us to go ahead and give Connor one dose now and another if he had any more breakthrough seizures.  Then he asked us to go into our local emergency room and get a blood level of Connor's latest seizure medication, Tegretol, drawn to see whether or not Connor was getting what they call a "therapeutic dosage," i.e. a level that fell within the desired range to stop the seizures.  If Connor's body was metabolizing the medication in a weird way, then the levels might not be high enough to stop the seizures and that might be the reason why it wasn't working.  If he was getting enough Tegretol but still having these seizures, then it would mean that the medication had failed and we should try a different one.  Once we got the blood levels back (which would probably happen tomorrow) we could give him a call and figure out where to go from there.

He wanted the blood levels drawn at about 5:00 pm because this is when Connor would have the smallest amount of drug in his system.  It was about 12:30 in the afternoon when we got off the phone with him.  I ran down to the pharmacy and grabbed the Ativan, which we gave Connor as soon as I got home.  Then we started getting ready to go down to the ER.  We figured that if we needed a blood draw at five, we needed to get there at least three hours early because we'd probably be at the very bottom of the queue for treatment, since Connor (thankfully) wasn't actively seizing, experiencing acute trauma, etc.  The last thing we wanted to do was march in half an hour before he needed his blood drawn to a busy ER and demand to be seen before everyone else waiting because we had a time limit.  So we drove down there around 2:00, forgetting in the process two things. 

The first was that this was our local private community hospital and not a giant state hospital, so the emergency room wasn't as likely to be crowded.  The second was that when you bring in a sedated (the Ativan knocks Connor for a loop) four year old, plop down a six-page list of medical conditions and say the phrase "resuscitated three times yesterday" medical personnel tend to take note.  We had a bed in the back in ten minutes and the doctor saw us five minutes later.  Whoops.

So we spent about three hours hanging out in our nice little (private!) room, with the nurses popping in occasionally to make sure we didn't need anything and to coo over Connor, who as usual quickly won the affections of every female person in the vicinity due to his overwhelming aura of cuteness.  Once 5:00 rolled around they drew Connor's blood, and while unfortunately it took three sticks (and the last one was right at the base of his palm-- not a pleasant place to have blood drawn from) he was an extremely brave little boy; he didn't even cry for the first two pokes!  They ran his levels and gave us the results ten minutes later-- how's that for amazingly fast service?

So it turns out that Connor's Tegretol wasn't too low.  It was actually too high-- and by a pretty substantial number.  Keep in mind that this medication was drawn when Connor's seizure medication blood level would be at its lowest point for the day, and you can see that this was a big problem.  Even though we'd originally planned to call the neurologist back the next day, the ER doc asked us to hold Connor's evening dose of Tegretol and call the neuro back immediately to figure out what he wanted to do.  Then he printed out a copy of the levels for us, had us sign a single piece of paper, and we walked out of the emergency room twenty minutes after the blood draw was done.  Least traumatic ER visit ever.

So we called and had the neurologist paged on the way home, and he called back shortly after we walked back in the door.  After hearing the results, he told us that there was no doubt then that the Tegretol was failing to do its job, and not to give the little guy any more.  Then tomorrow we're to switch straight back to giving Connor Trileptal, which is what he was on before the Tegretol.  One seizure a week, which is what he was having on the Trileptal, is a heck of a lot better than three a day.  Hopefully that medication change will tide us over until Monday, when they'll put together a new game plan for how to proceed.  We're supposed to call and update the neurologist on-call tomorrow to let him know how things are going.

So in conclusion, progress is being made, which is a very good thing.  But it was a long, long day and I'm sort of glad it's over.

~Jess

In Which Things Continue To Go Downhill

Connor had three seizures today.  I am seriously not liking this trend.

This morning Connor's neurologist had us drastically up the Tegretol, in response to the seizures from earlier in the week.  He had the first one today at about a quarter after one in the afternoon-- an hour and fifteen minutes after his first dose of the elevated med.  It was about thirty seconds long.

The second came around three in the afternoon; I had ducked out of the house to run some errands and left Connor with our very competent respite care worker, who called me as I was picking up some munchies at the grocery store to let me know he was seizing.  I deposited my half-full shopping basket into the hands of a startled clerk with a hurried excuse and dashed out of the store to jump in the car and head home, liberally cursing every red light.  Joanna called me when I was about half-way there to let me know it was over and I didn't have to rush.  This one ended up being about two minutes long. 

The third one was around six in the evening; about ten minutes after Connor's last dose of meds.  Jeremy and Connor were lying on our bed singing a song in preparation for Connor's bedtime when Connor suddenly stopped responding.  This one lasted about two minutes as well.

We didn't hear back from the neurologist tonight, so hopefully we'll hear something tomorrow.  I have the number to page the neurologist on-call for the weekend, so if he has any more tomorrow (which is unfortunately extremely likely) we'll be calling it in again and with any luck we'll be able to get a quick game plan.  It's a catch-22 sort of situation; it may be that Connor's new seizure medication is actually triggering the seizures rather than helping (in the two weeks before the med change Connor had two seizures, and in the two weeks after the med change he's had eight), but sudden withdrawal from Tegretol is extremely likely to cause-- you guessed it-- seizures.  And that's even with starting a new seizure medication at the same time.  Then again, it may just be that the medication is ineffective or isn't a high enough dose. 

So I'm not sure what needs to happen, but whatever it is, it needs to happen soon.

Connor is, obviously, exhausted and extremely crabby.  I'm quickly getting that way; there are only so many major adrenaline highs you can have in one day before you start becoming kind of burned out.  Tomorrow we have respite care and Jake is also coming over to work on the deck, so there'll be four of us here, which will be nice because there will be plenty of people if we end up with an emergency.  The last time Connor had this many seizures in one day was back in January when he went status.  While I'm really, really hoping that's not what we have to look forward to tomorrow, given his past history I'm pretty worried that's where we're going to end up.

Though I may spend a good portion of tomorrow napping instead of helping with the deck, as I'm anticipating about a four-in-the-morning wake-up time for Connor.  Since he always sleeps for a while after having a seizure, he napped for seven hours today.  I'm happy to report that I spent none of that time doing housework and a substantial portion of it eating Ben and Jerry's straight out of the carton, as well as some rather delectable brownies.  I'm sure you are all glad to know I have my priorities straight.

Keep us in your thoughts and prayers, folks.  We could sure use them over here.

~Jess

In Which I Cop Out Of Writing

I'm going to cop out tonight, I'm afraid.  We just got home from going out with a bunch of friends in Seattle, and I'm beat!

We're having a great time showing our friends around town.  Today's activities included Zumba, walking about downtown Puyallup, the glass museum in Tacoma, sushi in Seattle, and an Irish pub, among other things.  Needless to say it was rather busy, but we had a great time! 

I'll write a proper report tomorrow, I swear!

~Jess

In Which Entirely Too Much Happens

We had a long day today.

This morning we officially started work on the deck, which meant that first we had to haul off all of the old fence and deck pieces to have some room to maneuver.  It's probably always best to finish an old job before starting a new one, anyway, so this was a good thing.  Anyway, we rented a flatbed trailer, hooked it up to Jake's truck, and took just over three tons of old materials to the dump before lunch (I am actually not exaggerating here-- they weigh it at the landfill).  Needless to say we didn't go to the gym today.  We still probably have one more ton of old fence and deck parts, as well as a bunch of yard waste (I dug up a whole bunch of bushes that were in the way of our deck expansion) that will go out tomorrow. 

It ended up being a really good thing that we decided to take out the deck entirely instead of just repairing it, by the way, because as it turns out whoever originally built the deck just attached it directly to the siding of the house, with no waterproofing or flashing at all.  All of the water draining from the deck was simply running straight down our foundation.  They left a bunch of rotting wood underneath it and didn't stain it for a number of years to top it off.  There were a couple of supporting boards and posts that were heavily infested with moisture ants, and their nest was slowly creeping towards the house.  In another year or so they probably would have been actively eating the siding, which was already showing signs of rot.  So I'm very glad we decided to go ahead and do this work, because we have the chance to do it properly! 

At any rate, after lunch we had a birthday party to go to, which was a lot of fun.  It was carnival themed, and while Connor was not particularly interested in the obstacle course or the face painting he just about ate his weight in cotton candy.  He'd never tried it before, and I believe he is now convinced he has discovered the perfect food; it dissolves instantly, tastes mind-numbingly sweet, and does not require any work on his part at all.  So needless to say he was just slightly wired when I took him home, and I had to put him down for a second quiet time because he was bouncing off the walls.  It was nice to see him doing something all of the other kids were doing (there were many children skipping home with major sugar highs this afternoon) and enjoying himself; we don't get very many opportunities to have that happen.

We got home just in time to have Joanna, our respite care worker arrive, because tonight was a date night for us.  So Jeremy and I dragged ourselves out to the bookstore, slumped into a sushi bar and then oozed on into a coffee shop at the end of the night, where it took us five minutes to order because we kept staring blankly into space instead of reading the menu.  We came home an hour early because Jer's feet were really stiffening up and we were both too tired to want to stay out any longer. 

So it was a fun day, and we got a lot done, but it was really, really long. 

~Jess

In Which I Am Tired

I am a little worn out today, I must admit. I didn't do anything particularly unusual: drove Connor to school, worked out at the YMCA with Jeremy, worked over at the house for a little while, drove Jer to PT, and crashed back at the house. I think it's just a cumulative thing; the past couple of weeks have been so crazy that having an ordinary day short-circuited my systems or something. It's funny how that works, isn't it? I have plenty of energy as long as I'm juggling a lot of balls, but once things slow down it's like it all catches up with me.

At any rate, I'm pretty wiped, and I think that I'll try and make this weekend a fairly relaxing one, though I do need to do some cleaning around here and take a trip to Gig Harbor. We do have a day of respite care this weekend, though, so hopefully Jer and I will have a chance to kick back for a while.

So I'm going to make some tea and lounge with a book in the bathtub before bed. I think it's the perfect solution, don't you?

~Jess

In Which Connor Rings In The New Year With A Bang

Well, so much for boring.

You may have noticed that I didn't blog yesterday. I wasn't too busy having fun somewhere, and I didn't decide to take a lazy day. No, I had full intentions to blog about what a great date Jer and I had, how I was looking forward to Connor starting school up again, and our plans for the next few weeks, but unfortunately I wasn't able to get to my computer. There were two reasons for this:

1.) I left it at home.

2.) They didn't have wireless in Good Samaritan Hospital's Emergency Room, so even if I had remembered to bring it I wouldn't have been able to post anyway.

Yes, during the time I should have been blogging, I was instead sitting on a chair in Good Sam's ER, waiting on the ambulance for Connor's transfer to Children's Hospital in Seattle and passing the time by trying to calculate how much chocolate I would need to consume in one sitting to erase all memory of the evening without sending myself into a sugar coma.

The day started out well enough. Joanna came over at ten in the morning to watch Connor while Jeremy and I headed out to the gym for our workout. While some people may not think working out together makes for a good date, Jer and I enjoy that sort of thing. After getting cleaned up we headed over to Best Buy, where we looked at vacuum cleaners for carpetless floors. Yes, I know-- working out AND vacuum cleaners in one date? I guess we're hopeless romantics. We ended our free time together back at the local conveyor-belt sushi joint, where I ate sushi and Jer used his sushi as a medium to convey massive amounts of wasabi to his mouth. Finally we went home, where Jer spent a happy hour getting the scar tissue broken up on his leg by Joanna, who also happens to be an excellent medical massage therapist (Please note: this was not actually a happy hour. This was an hour that involved primal screaming and liberal use of the "F" word. Apparently having scar tissue broken up hurts. A lot. But it will help with flexibility and rebuilding muscle, so it's worth it, though Lord knows what our neighbors think went on here yesterday, what with the screaming and cussing and then, an hour or two later, the ambulance and firetruck. Oh well).

Anyway, so Joanna left and Jer and I settled down to a quiet evening. We got about half an hour into our quiet evening when Jeremy looked over and realized that Connor was drooling a ton and his breathing was kind of funny.

Yep. Seizure.

I ran for the oxygen, we lay him down on the floor, hooked him up, and started a timer. This was one of the new seizures: starting with drooling and throat paralysis and then progressing later to jaw trembling, and finally to rhythmic jerking of his jaw and blinking of his eyes. After five minutes of him seizing we gave him the Diastat.

It didn't work.

When the EMTs got there after about ten minutes of seizing, Connor had just stopped jerking and seemed to be coming out of it a little. He was still pretty unresponsive, though, and his breathing was really erratic. They loaded him in the ambulance, whereupon he apparently began seizing again. They drove away, lights flashing and sirens blaring, while Jer and I piled into the wheelchair van.

By the time we got to the hospital the second seizure was over and Connor was responsive again. Apparently they'd put an IO (Intraosseous access-- basically an IV needle that is screwed directly into the bone with a miniature drill-- no kidding) into his leg in the ambulance and he hadn't even twitched, which tells you how out of it he'd been. When we walked in the door there were six or seven people around the bed working on him, but he was crying, responsive, and breathing again on his own, which was a big improvement. He stayed that way for five minutes or so and then went unresponsive again. At that point they gave him a dose of Ativan to stop the seizure and decided they wanted to transfer him to a pediatric hospital better set up for him if he decided to conk out for a fourth time.

I drove home, slapped an overnight bag together and grabbed some dinner for Jeremy and me, and then returned to the hospital just as they were deciding to transfer him to Children's in Seattle rather than another hospital in Tacoma.

Once the ambulance team arrived I explained to Connor what was going on, as by this time he was pretty much back to his normal self, albeit an extremely exhausted and irritated normal self. Then I loaded Jer into the van and we drove down to Children's. We hung out in the ER for a while and were admitted to a room sometime around two in the morning. Connor finally, finally fell asleep around three. Jer and I then crashed and burned on the pull-out couch.

Not only do they have a pull-out couch that sleeps two, by the way, but they also have a wireless network in the rooms and they let you use your cell phones in there. Cushy. I'll have to remember to bring my laptop the next time Connor is admitted there, which will hopefully be never, ever again, even if they did give him a super cute blanket with various vehicles on it and an adorable little hospital pajama set that makes him look either like a Shaolin monk or a prison inmate, depending on whether or not you ask Jeremy or me.

But I digress. Anyway, we had a quiet night, saw the neurologist this morning, started Connor on a new medication called Trileptal which he will now take in addition to his Keppra, and were discharged around four thirty in the afternoon. Connor is now snoring gently in our bedroom, which is where I am headed shortly to lay down and sleep for a few hundred years, or at least until seven tomorrow when it's time for Connor's next round of meds.

Bleagh.

~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 Do Not Have The Best of Mornings

I'm sure you've all been waiting with bated breath for the results of Connor's allergy testing today.

Well, too bad.

I got him up this morning (He was so cute I had to take a picture-- I'd turned on the light and he started squinting and signing "No light no light." Evidently he wasn't ready to get up), and took him to school. Then I drove back to the house, quickly fixed Jer coffee, did a couple of chores, and put food out where Jer could reach it (the pantry and refrigerator being out of reach for him). Then I turned around and rushed back to school to sign Connor out of class so that we could get to the appointment on time.

We arrived at the hospital's parking lot thirty-five minutes early for Connor's appointment, and that's as close as we got to the allergy clinic. For the first fifteen minutes we drove around in circles looking for a handicapped parking space. For the next fifteen minutes we drove around looking for any parking space. Then I attempted to drive around the back of the hospital to park in the rear parking lot, and accidentally went into the drive-through pharmacy lane instead. You know, the one that's one-way, with no turn around or exit except through the drive-through, where there were eight cars ahead of me and two cars now blocking me behind.

And there we sat for the next forty minutes.

After it became very, very obvious that there was no possible way we were going to make it to the appointment despite it being less than 200 yards away, I called the clinic desk and rescheduled. The earliest appointment they had was on December third, so that's when we booked for. I was a little frustrated by the end of all this, and by being a little frustrated I mean that I had a complete meltdown in the car, and then Connor and I listened to classical music for the remaining thirty minutes we were stuck in line and had a long discussion about emotions and how everybody gets sad or angry: even mommies and daddies. (Or at least, I signed a long monologue to Connor about feelings, and Connor contributed "Mommy sad. Connor sad." which didn't make me feel guilty at all, let me tell you.) Finally the last car pulled away and I drove back home, arriving two hours after I'd left with nothing to show for it and feeling like a bit of an idiot. Oh well-- we all have those days, I guess.

Moving on to brighter topics-- Jer received the new wheels for his wheelchair today! Unfortunately they are only slightly better than his old wheels, as while they have texture to them it's not really very heavy-duty so he still loses traction quite a bit on wet or soft surfaces, but they're better than they were. My compost bin also arrived in the mail today, which I was pretty excited about. And I managed to sneak in a trip to the bookstore and a couple of cups of tea today. Getting the chance to sit down for an hour to read and drink tea goes a long way towards restoring one's equilibrium. And we got the chance to go to a potluck dinner tonight where we saw a lot of friends, so that was a nice end to the day.

I think tomorrow afternoon we're going to declare a holiday-- as much of a holiday as it ever is around here, that is. I'm feeling the need for one after today. I'll get all of my errands and housework out of the way in the morning, pick up something for lunch on the way home, spend the afternoon lazing away, order some pizza for dinner, and in general do as little as possible. Maybe while Connor's napping I'll even take a long bath. And drink tea. And eat chocolate. And read. Maybe I'll even do it all at the same time, because I am marvelously talented like that.

I can't wait!

~Jess

In Which We Have A Dilemma

Boy howdy, am I tired.

I looked at houses for nearly five hours straight today. That's a lot of houses. And we think that maybe, just maybe we've found one that would work.

The house is in a very nice neighborhood extremely close to Connor's school. It's across the street from a wooded park. It's about 2200 square feet-- about 1000 square feet more space than we have right now, and it's on a respectable quarter-acre lot with established landscaping.

We'd have to do more than just put in a ramp on this house, though. The whole house is carpeted, and so we'd eventually want to replace the carpet with something more wheelchair friendly. We'd want to remodel a bathroom to have a roll-in shower (the master bath, which is already a decent size, backs up to a walk-in closet so we should be okay as far as renovations go) and the kitchen is outdated. It's also not that much less expensive than the first house we'd looked at-- their asking price is only about eight thousand dollars less than the other house. So basically this means that unless we can get them to come down a bit on the price we'd end up paying more for the house once we renovated than the house with the acre of land.

However, since the money for renovation would be coming out of Jeremy's traumatic injury insurance payment and not added onto a mortgage, the house might end up being cheaper in the long term since we wouldn't be paying interest on the extra cost of the renovations. It also means that we'd get the chance to make the decision about what goes into the house based on our needs and aesthetics. While the first house already had renovations, they were in a style that was very different from what we probably would have chosen (like those bright white tile floors, for example). We would probably do the renovations in stages-- the ramps first and the bathroom next, and then later either the kitchen followed by the floor or vice versa, depending on our needs. Once the ramp is put in the house would already be way, way more livable than the apartment we're in right now. I mean, I wouldn't have to sleep on the floor, for starters. And we wouldn't have half our worldly possessions in a storage unit so that Jer has room to maneuver-- right now he has full access only to our living room and bedroom, whereas the rooms in that house are big enough that he could get into all of them with no trouble, even with all of our furniture in them.

This house is overall more in tune with our style: huge exposed hardwood beams overhead, really open floor plan, oak door casings, tile roof, cathedral ceilings. . . it's a house that I can see us happily living in long-term. And heck, I can plant a dang cherry tree.

At this point I've seen pretty much every rambler in the Puyallup area within our price range, so we're really down to just two choices. Which one should we go for-- the slightly more expensive, already renovated house farther from town with acreage that's not quite our style, or the slightly cheaper, larger (by 500 square feet) house near Connor's school that's more in line with our style but will require renovation at added cost?

We'll see what we end up deciding to do.

~Jess

Home

We're home.

We're tired.

I finally got Connor to bed around eleven last night. He then woke up every hour on the hour bawling-- probably having nightmares about me leaving him. I had to get up at 6:30 to finish my packing, as I wasn't able to pack the night before due to Connor's state of panic whenever he saw me putting things in the suitcase. I should really know better than to do this by now.

He stayed awake the whole plane ride of course, despite my attempts to cajole him into napping so I could catch a few hours of shuteye myself. He enjoyed every second of the flight once he figured out that we were getting on the plane together, which I had only told him about 8,000 times by this point.

So anyway, we're home safely. More tomorrow. Good night.

~Jess

Getting My Priorities Straight

I've been slowly, slowly getting back into an exercising routine. I used to be really in shape, but in the three years since Connor joined us my exercise has been put on a back burner and I've gradually gotten out of the habit. Part of the problem is lack of time-- a constant stream of hospital stays, doctors appointments and therapy sessions makes me want to spend what little free time I have sprawled on the couch instead of getting up on a treadmill. Logistics come into play too, as in the past it's been tough to find exercises I can do with Connor in tow, and doing the same five exercise videos in front of the television (as we don't have TV reception, videos and DVDs are what I've got to work with) gets boring after a while.

These are all just excuses, though-- the truth is, and many of you can probably relate to this-- it's really easy to get so wrapped up in taking care of my son that I put my needs and health on a back burner. If I have a conflict and am required to make a decision between canceling say, my dentist appointment or Connor's, I know which one I'd choose every time. The same goes for a therapy session for him or time with friends for me, and so on and so forth. It's really easy to feel guilty about indulging in something like, for example, a manicure, when I know that I could be doing yet one more round of play therapy with my son instead.

I finally woke up one morning a while ago and realized that if I neglect my health and something happens to me, all of the sudden it's not just me with the problem. With Jer being in the military, I end up being an on-again, off-again single parent. If I get too stressed while my husband is gone and have a nervous breakdown, or I don't take care of myself and end up sick, who's taking care of Connor and the now invalid me? No one.

So I've learned to be a little selfish again. I'm setting aside money in the budget for a monthly massage. I'm trying to stop agonizing over taking some time for myself, even if it means that Connor isn't getting quite as much of my attention during the day. I'm eating healthier and sleeping longer. And I'm slowly, slowly getting back in shape. It's true that Connor and Jeremy will always be my first priorities, but now I remember one important truth: if I want to continue to care for my loved ones, first I have to care for myself.

~Jess

photo for this blog post is by the lovely Lucie over at LZH photography

Sunny Day

I spent a good portion of the day today outdoors at a very fun military spouses' function. Due to the mild temperatures and cloudless sky, I have my first ever Pacific Northwest sunburn. I actually didn't realize for a while that I even had a sunburn-- I just thought that I'd scrubbed my face too hard getting the camo face paint off. I'm lucky after spending five hours out in the sun that my skin is only slightly pink. I swear that it doesn't burn as brightly here or something-- if I'd tried that in Texas I'd be the color of a boiled lobster. I'll count myself lucky and put on sunscreen next time.

Jer had to go into work after lunch, so Connor and I hung out around the house. Sleep has been in short supply around here; Connor's been waking up at night. We can't figure out exactly why, but he is very sensitive to how Jer and I are feeling and tends to get nightmares if we're particularly stressed, so that's our best guess as to what's going on. At any rate I've spent a lot of time out of bed, and that combined with the physical activity of this morning hit me with a double whammy this afternoon. Connor was down for a nap and I decided to take a nice, hot bath. The water felt really, really good, and I closed my eyes for just a second, and the next thing I knew the water was cold and my neck was cramping from being in such an unnatural position so long. I'd wedged it against the corner of the tub, which is why I hadn't woken up with a nose full of water. Whoops. Shortly thereafter Jer came home, and he let me go back to sleep for another blissful four hours while he hung out with the little guy. I'm happy to say that I feel much, much better now.

I'm sad to say that Jer has to go back in to work tomorrow as well, so we won't see a lot of him this weekend, but hopefully the next week won't be quite so crazy. Who knows?

~Jess

Coming Out of Hibernation

Tonight Jer and I, accompanied by a slightly grumpy Connor, went out to a restaurant for dinner. It's honestly the first time since Connor's surgery I've gotten dressed up, actually blow-dried my hair and put makeup on. I took a look around the house when we got back. It's a disaster-- I've let everything slide because we've been so stressed. The garden is full of weeds and our sink is full of dishes.

I kind of feel like I've been wrapped in cotton wool for a few weeks. With the surgery, everybody being sick, our emergency room visit, the insurance company fiasco, and the business with Connor's school, our lives have been put on hold. All of my energy that usually goes into taking care of myself and the house has been channeled into taking care of these other things. Now that everyone is on the mend, it's time to start picking up some of the balls I've been dropping.

Tomorrow I'm going to spend some time putting the house to rights. Then I'm going to clean myself up-- go get a haircut, maybe treat myself to a manicure. I know from past experience that taking care of those two simple things will not only make me feel much better, but they'll actually give me more energy. Just being in a less cluttered space will help, and knowing that I look good will give me that burst of confidence I need to tackle all of the issues we're dealing with.

The weather man says the sun is supposed to be shining tomorrow. Spring is finally here. It's time for me to wake up.

~Jess