In Which We Look Better Than Life

Check out these gorgeous pictures!  Kat and Justin, the photographers behind Persimmon Images, did an awesome job, and we're really happy with these shots-- not to mention the 50 some odd more that aren't posted here.  We are not exactly the easiest family in the world to photograph, so that makes these pics especially great.

Take Connor, for example.  I mean sure, the kid is unbelievably cute, which makes things a little easier.  But he also drools a ton, sticks his fingers in his mouth, refuses to look at the camera or smile, self-stims by flapping his arms a lot, and since he doesn't stand on his own is a challenge to pose.  Then we have Jer, who was switching between crutches and a wheelchair at the time and tends to do that cheesy-smile thing for the camera. 

Finally there's me; not only do I wrinkle my nose up when I smile, but when I laugh I throw my head back and so there are no doubt a ton of rejected pictures of shots that would have otherwise been great if I wasn't showing off my nostril hair.  This laugh is a family trait that both me and my sister inherited (Tom, do you do this too?), so it's not going anywhere any time soon.  And because I was having a great time despite the bad weather, and also because Kat and Justin are both hilarious, I was laughing a lot.  The fact that they still managed to get seventy five absolutely awesome shots of us is a testament to what fantastic photographers they really are. 

You should check out some of their other photo shoots, where they had models that, you know, cooperated.  Amazing stuff.  Because they are totally awesome, you should also look for them in October at this year's Get Hitched, Give Hope; where they and a whole bunch of other bridal vendors will be raising money for end-stage cancer patients.  Future brides take note!

At any rate, enjoy the eye candy! 

~Jess

In Which Connor Has A Quiet Day

Connor had a pretty good day today-- he got to finger-paint at school, which is always fun.  Jeremy picked the little guy up because I had a doctor's appointment to have my Primary Care Manager fill out some paperwork for the adoption.  The doctor concluded that I was not, in fact, about to keel over at any second, and gave her stamp of approval.  That's one form down, 8,000 more to go!  Okay, that might be a slight exaggeration. 

But not by much.

I spent a good portion of this afternoon filling out yet more paperwork at the house, while Connor played quietly with his toys.  Then as a reward for being so good, he and I went into his room and he got to swing for a good twenty minutes or so.  He was thrilled-- that swing is so wonderful for him!  Then we played ball for a while.  So all in all it was a pretty happy day.  We spoke with the neurologist as well and modified Connor's medication. 

Hopefully that will do the trick; keep your fingers crossed for us!

~Jess

In Which Connor Has Another Seizure

Connor had another seizure today. 

I had a friend coming over-- we were going to play around with clay and make some jewelry-- and his seizure started just before the doorbell rang.  He slumped over a little in his high chair, where he had been playing with his toys, and when I picked him up I immediately knew something was wrong; he felt like dead weight and his color, especially on his left side, was very mottled.  He was still conscious and responsive, and he'd actually give me "high fives" with his right hand, but his left hand and foot seemed to be paralyzed.  When I tickled the bottom of his right foot he'd weakly move it away, but when I tickled the bottom of his left foot (normally the more sensitive one) I got no reaction, and his left arm and hand hung totally limp.  We immediately started him on oxygen, and laid a blanket down on the floor in preparation for doing mouth-to-mouth.  His right leg started jerking shortly after that, and he went unresponsive for a while, though his eyes were still open.  Then he stopped breathing.

I had to resuscitate him for about two minutes this time, and the whole seizure lasted about four minutes.  He slept a good portion of the rest of the afternoon.  My friend handled it extremely well, considering she walked in on me sitting there with a pale, jerking child on my lap waiting for him to go blue.  Jer called the neurologist's office and left a message, and then I worked on making clay jewelry for several hours while Connor slept.  I made those Domu-kun earrings and also some vampire oranges and I got to hang out with a friend, so at least the day wasn't completely dismal.  But it wasn't wonderful.

This latest incident is particularly disturbing because despite Connor's recent medication changes, his seizures are getting both longer and more frequent, making me worry that we're going into another cycle that's going to end with him in the ICU again.  This is Connor's fourth seizure in the past thirty days. I'm hoping we'll hear back from the neurologist tomorrow, and he can tell us what we need to do.

Keep the little guy in your thoughts and prayers, okay?

~Jess

In Which Connor Goes On A Field Trip

Today Connor's class went on their big field trip to the Hands On Children's Museum in Olympia!  And because I like field trips too, I went with the little guy.  We've been to the museum multiple times before, but never with school and never for so long-- the field trip lasted for almost three hours! 

I thoroughly enjoyed myself.  Connor gave the whole experience mixed reviews.

We were expecting to have the whole place to ourselves, but apparently there was a miscommunication and it was open to the public.  As a result things were a little more crowded than we anticipated-- never a good thing with Connor's sensory issues.  He pulled his hearing aids out about forty seconds after we walked in the door. 

We went immediately to the toddler room, which was not quite as crowded and noisy as the rest of the museum.  I figured we'd ease into things, so we started out at the bean table with another kid from Connor's class, who dove right in. 

Connor declared that there was no way he was touching those beans.  He informed me that he was all done, and it was time to go home.

So after unsuccessfully trying the bean table for a little while, we moved on to the puppets.

Connor declared that there was no way he was touching those puppets.  He informed me that he was all done, and it was time to go home.

This was also his mantra for the train set, the water table, the marketplace, the fire truck, and the crayons.  It was obvious that he was a little overwhelmed and his sensory issues were acting up as a result.  We took a bathroom break and he immediately calmed down in the quiet, beige little room.  The only problem was that then he didn't want to leave the bathroom.  He figured we could just hang out in there for the rest of the trip.

Nice try, buddy.

I did find one thing that he enjoyed.  We sat down in the garden area (complete with a wooden "flower bed" and plastic vegetables) and he completely ignored my attempts to get him to "plant" broccoli and instead honed in on the brightly colored galoshes.  "Want, want!" he said.  So he got to put on a pair of galoshes, which made him very happy, except that he immediately saw another pair of galoshes and wanted to try those too.  We switched out galoshes for a little bit, but really he wanted to wear them both at the same time.  So I put the second pair on his arms.  This was a big hit.

So now apparently I should go galoshes shopping for Connor.  Not that he really has a need for them, but I can see the appeal.  The kid hates to have anything touching his feet, and so those things must look like armor to him.  I'll have to keep an eye out just in case I see a good deal.  If nothing else we can use them for pretend play.

Anyway we finished up back in the Toddler Room, where I forced him once again to touch many, many things he didn't want to touch.  The bus ride back was uneventful (though I did really enjoy chatting with the other moms) and we got home about 1:30pm, when the kid promptly crashed.  He was a tired little guy!

I think that overall he had a pretty good time, though he would have been much happier without me making him touch everything. 

Anybody have any galoshes (galosh?) recommendations for me?

~Jess

In Which Connor Goes To The Doctor

Connor had a pediatrician appointment this morning, so he missed school.  He's got a field trip tomorrow with school, so it's been kind of an unusual week for him routinewise.  The appointment went well, and we went over how Connor is developing, what changes have happened in his medical care, prescriptions, etc.

Connor also received his four year vaccinations.  The hospital personnel debated about it a little bit and ultimately decided not to give Connor the DTaP shot, but instead just the Td shot, as they were concerned about the risk of the shot causing a seizure.  Interesting stuff.  Or at least I found it interesting.  Connor probably would have found it more interesting if they'd simply not given him any vaccinations at all.  Poor little guy.

We debated on whether or not to space his vaccinations out or hold off on them entirely given his current seizure issues, but ultimately decided it would be less stressful for him to get them all done at once than to have to keep coming in.  So far so good-- we'll see how he does over the next couple of days.  He was very brave-- he only cried for about a minute after the second round of shots, and he quieted down as soon as I picked him up.  I'm happy we have such a good natured kid. 

And on an entirely different topic . . .you should go check this out!  Kat Speyer's posted a couple of sneak preview images from that rainy-day photo shoot we did back in January with her and her husband, Justin.  Don't they look great?  I've posted another one here because I couldn't resist that cute little grin. 

That's my big boy! 

~Jess

In Which Jeremy Turns Twenty Nine

Today was Jeremy's birthday!

His espresso machine, sadly, is on backorder and has not yet arrived.  But we still had a great day, even if he did have to resort to making coffee in a French Press, which is apparently not up to snuff. 

He slept in this morning, and then spent a good portion of the day sitting on the couch playing video games, which is a perfectly acceptable way to spend a birthday, in my opinion.  Joanna came over again in the evening and Jer and I went out for dinner.  We ended up, of course, at the bookstore and then a local coffee shop, where we spent several happy hours curled up in comfy chairs, sipping our chosen beverages and reading. 

Jeremy is twenty nine today, which hardly seems possible.  We've known each other for ten years now, and we'll have been married for six of those in May.  Twenty-eight was an incredibly tumultuous year for Jer (and the rest of us, for that matter).  I asked him if he felt old now that he was just one year away from thirty.  "Only in my left leg," he said. 

I hope twenty-nine is a little more sedate; he royally deserves it. 

~Jess

In Which A Lot Of Things Happen

Well, we've had an eventful couple of days.

First I have to explain this picture.  Yesterday morning Connor and I were looking at pictures of relatives online before it was time for school.  I pulled up a picture of Jeremy's brother, who is an eyebrow ring-wearing, Mohawk-sporting Nuclear Engineer currently working on his PhD in Michigan.  Connor took one look at his uncle's latest picture and got all excited.

"Hair!  Hair!  Want hair!  WANT HAIR!!!" he signed.

I wasn't about to cut the kid's gorgeous hair.  But if the little guy gets psyched enough about something that he'll actually communicate about it, it's really, really hard to say no to him.  And I did happen to have some hair pomade . . .

He loved it.

Seriously, I parked his wheelchair in front of our full-length mirror in the library as I was getting his stuff ready to go for school, and he spent the whole time admiring himself, signing "hair!" and gently touching it.  I put him in his new rocker t-shirt for added effect, and off to school he went.

So while he spent the morning watching a circus performance put on by some of the older children, I was getting our things together for our overnight trip.  Jer and I pooled our respite care for the month and so Joanna was arriving to watch Connor for us that night, and we were taking off for a lovely B&B on the mountain.  We would be spending all of the following day there, and would return to the house in the evening.  It would be the first overnight trip we'd taken with just the two of us in over nine months, which is way, way too long.  I had just confirmed our reservations and was sitting down to write an early blog when I got a phone call from the school.

Connor was having a seizure.

Apparently he was in the middle of eating when he slumped over and the seizure started.  This one was a pretty short one, and while he did stop breathing it was only for a few seconds and they didn't have to do mouth-to-mouth, but it's never a good thing when he has one of these.  By the time I got there he was okay again; I sent the paramedics away and took Connor home.  He went down for his usual post-seizure nap.

Jer and I talked about it.  I called and canceled our reservations. 

Okay and honestly, I cried about it just a little bit, because hey, I'd been looking forward to this trip for weeks, and I was so excited about getting away with Jeremy out of the city and spending some serious time together exploring a new place.  But the bed and breakfast was over an hour and a half away, and we'd be traveling through some of that area with no cell phone reception.  Though we knew Joanna was more than competent enough to take care of him, we just couldn't justify being that far away when he was at risk for more seizures-- especially in an area where we'd potentially be difficult to contact.

I called Joanna, and she said that she was still comfortable watching him.  We knew that we really needed this trip to recharge our batteries.  So we decided that maybe we could salvage our trip-- we would see if we could find something a little closer to home.  I called every B&B in Tacoma, and then started in on Seattle.  We were a scant four hours from the time when Joanna would be arriving, and I was beginning to think I needed to start in on the Motel 6s, when I caught a lucky break.  Somebody at the Greenlake Guesthouse in Seattle had to cancel their trip because of that volcano with the unpronounceable name, so they had a vacancy.  Not only would they let us stay for just one night, but they'd let us check in late as well.  I booked it immediately.

So because I was all frazzled and needed some time out of the house, Jeremy, who has earned his sainthood many times over by this point, hung out with the boy while I drove out for a shopping trip and lunch with a friend.  Then I came back home, we ran around and finished packing, Joanna showed up and we were off.

It wasn't the trip I thought we were taking.  But you know what?  We had a great time.

The B&B was amazing-- it's a beautiful Craftsman style place, our bed was comfy, the owners are really nice, and they served an unbelievably delicious breakfast (ginger-coconut seasoned fruit and avocado-tomato-cheese omelets with sour cream and mango salsa and whole wheat toast and sausage and juice and tea or coffee: can you say yum?).  Also they have an adorable beagle who likes to be scratched behind the ears.  If you're ever in Seattle I highly recommend it, though those of you with mobility issues need to be aware that the house does have a number of stairs and isn't wheelchair friendly. 

So we spent a lovely night there, checked out in the morning after the aforementioned deliciously scrumptious breakfast, and then went for a pleasant but rather windy walk along the lake shore.  Then we drove around the area looking at all the beautiful Craftsman style homes.  A trip to Uwajimaya-- the huge Asian grocery store in the middle of the International District-- was next, where I bought myself a Thai cookbook.  After that we drove down to the Museum of Flight and checked out some of the neat exhibits.

We drove back into downtown, parked at the Convention Center, and ate at a deli in the area before settling down (of course) with a book or two at a coffee shop.  We spent the afternoon reading and sipping on tea and coffee, respectively.  Finally we headed home, where Jer left for a work out at the YMCA and I hopped in the van to go retrieve Connor, who had been out and about with Joanna and her husband Jake, and was ending the day in Tacoma.

He apparently slept well and then had a great (seizure-free) day; he especially enjoyed playing with Joanna's Newfoundland, who apparently liked to lick his toes.  He crashed as soon as we got home, so evidently he played pretty hard.  Not only did Connor have a really good time, but Joanna and Jake even cleaned our house while we were gone!  I seriously have no idea how we got so lucky on the respite care front. 

So Jer and I got to take our much needed trip, and while it wasn't anything like what we'd originally planned, it was still a major stress reliever and I'm glad that we went.  I don't think we'll let another nine months go by before we do it again! 

Anyway, that's why I didn't blog yesterday.  Sorry.

~Jess