In Which Connor's Doing Well

Connor was moved up to the pediatric floor today!  He's doing much, much better.  We had a rough couple of days; the night before last was especially horrible.  He was having some seizures and GI track issues, and in quite a bit of pain.  Thankfully things seem to be evening out now, and he's been seizure-free for nearly two days now.  Hopefully his GI issues will be straightened out tonight, and we'll be able to get him eating tomorrow.  Once that happens, he'll be able to come home!

He'll be on quite a bit of pain medication, and he still has a lot of swelling and bruising from the surgery.  His surgical sites still look pretty good, though.  He won't have his follow-up appointment with orthopedics until six weeks post-operation, so he won't be out of the brace until then.  It's been interesting learning how to manage the brace, since it makes moving the kiddo pretty awkward.  We've got a system down now though, and we're able to shift him without causing him much pain at all.  At the moment we mostly double team things, but hopefully by the time Jeremy leaves, I'll have figured out how to do everything on my own.  We're working on getting a sling for Connor's lift that will work well with the brace.  That should help me out a lot.

In addition to Connor's improvement, something else good happened: Loki came back!  He showed up the night before last on the doorstep four days after he went missing-- filthy, dehydrated, a few pounds lighter and extremely hungry.  I suspect he might have gotten stuck in somebody's crawlspace and it took him a few days to get out.  He frantically demanded petting, walked stiff-legged to his food bowl, ate the entire thing, drank water for about five minutes, and then basically conked out in the middle of the kitchen floor.  I'm so, so glad he's back; I was pretty sure after the first couple of days that we would be seeing him again.  He's shown zero interest so far in escaping back outside, so maybe he's learned his lesson.  I wouldn't count on it, though-- he's our troublemaker.  Crazy cat.

~Jess

In Which Connor Has Surgery

Today was the big day for Connor's surgery.  We had to get the little guy up at 4:30 in the morning, which was not particularly fun.  None of us had slept very well, not only because of the surgery but also because we were worried about our beloved cat, Loki, who had made a bid for freedom the night before and, as of this writing, is still somewhere at-large in our coyote-infested neighborhood.  I really hope he turns up soon.

Anyway, we arrived at the hospital around six in the morning, met with the surgical team, and Jeremy walked Connor back for his surgery around 8:30 or so.  The anesthesiologist and surgeon carefully explained what was going to happen to Connor via demonstration on Hospital Monkey.  As a general rule, Connor does much better for procedures if he understands what's going to happen, and this was no exception.  He was quiet and interested in the whole process, and he didn't fight the mask when they put him under.  We've been discussing the surgery with him for a couple of weeks, and I think that helped as well.  Jer met me back in the pre-op room, and we prepared for our long, long wait.  We were told to expect the surgery would take at least six hours.

The OR nurse was going to be updating Jeremy and I by cell phone, and we didn't get any reception in the surgical waiting room, so we couldn't stay there.  To tell you the truth I was a bit relieved by this anyway, as surgical waiting rooms are pretty dang depressing.  We popped our heads in and even though there were probably twenty people in there, the room was absolutely silent.  Everyone looked like they were having one of the worst days of their lives.  While Jeremy and I were not having a particularly fun day, there was no way we were going to sit in a room for six hours and not say anything to each other.

So instead we ate breakfast and then wandered around outside the hospital for a while, amusing ourselves by watching various small children try and sneak as close as possible to the swan hanging out on the lawn next to the pond before their mothers realized what they were up to and yanked them back out of reach.  Then after lunch, we read on a bench for a while in a tucked away corner of the garden with some soft music playing on the iPad.  It was a much less stressful way to spend the time, and even if we were still anxious about the little guy's surgery, we were at least not shut up and sedentary.  I find that when I'm worried, getting moving helps me out quite a bit, and it was a beautiful, sunny day.

So the kiddo's surgery went smoothly, and he got back to his room in the PICU around three in the afternoon.  The doctor repaired Connor's right hip socket, and readjusted the angle that both the little guy's femurs entered his hips.  Because the doctor needed to saw completely through both of Connor's femurs to do this, our boy will have a pretty long, painful recovery.  Right now he's resting completely comfortably though, as he has an epidural in.  They'll probably keep that in place for a day or two, and then they'll transition over to other pain medication and move Connor to the pediatric floor.

Jeremy and I will be switching off who spends the night at the hospital, as only one of us is allowed to stay and of course we have another kid who needs attention too!  Jer is spending the first night at the hospital, and it will be my turn tomorrow.  When I last checked in, Connor was still asleep but had woken up for a while in the evening.  He was a bit groggy and confused, but didn't seem to be in a lot of pain.  He has on some silver-coated bandages to help prevent infection, and he's in the brace he'll wear for the next four-six weeks, which spreads his legs out wide and elevates them a bit.  I was actually surprised by how good he looked; I'd expected a lot more swelling, but there was very little of that and he wasn't even very pale.  They didn't even have to give him a blood transfusion, which is pretty amazing for a six hour surgery!

Eden had the chance to pop in and see him too, which I think was pretty important.  She was very worried about her brother all day-- she even called from school to double-check on him during her lunch-- and so it was really great that they allowed her to come back and see for herself that he was all right.  She's a pretty fantastic big sister.

I'm so glad that things went well, and hope the little guy has a smooth recovery.  He should be spending the next five to seven days in the hospital and we have no WIFI reception there, so I'll keep you all posted as often as I can.

I'm so glad that's done and over with!

~Jess

In Which We Turn Up The Drama To Eleven

So it turns out that instead of driving up the coast of California with Jeremy for our ten year anniversary, the two of us will be spending our vacation in the ICU with Connor while he recovers from major pelvic surgery.  This has not exactly been the best week ever.  Bear with me; a lot has happened so this will be a long post.

I got a phone call from the school Wednesday; they thought Connor was throwing up blood again.  I missed the phone call because I was taking a shower, so by the time I got down there he was asleep.  He woke up on the way out the door and by the time we'd been in the car five minutes he was incredibly pale, shaking and crying, which is an indication in our world that something is really wrong.  So I drove him to the ER.

He threw up again in the parking lot, and one more time in the ER bed, so his stomach was pretty empty by the time they took a sample.  What came up was pretty dark brown, so it was evident that even if he had been bleeding he was done now, but since he was doing his very best to blend into the hospital sheets and didn't really want to wake up, they were pretty concerned in triage and they decided to admit him and do a scope the next day.

They started an IV, gave him something for nausea and another medication to help protect his stomach if he did have something going on in there, and his color started coming back.  He crashed hard and slept through the whole night, though his IV seemed to be having some trouble.  Since it kept beeping "occlusion," the nurse put him in an arm board and wrapped it up from wrist to most of the way up his shoulder.  This proved to be an unfortunate decision.

Sometime during the night the IV blew and began dripping saline directly into the muscle of Connor's arm.  Since he was asleep the whole night I was asleep too, and didn't catch it.  The nurse didn't unwrap his arm to check it.  Nobody caught it, in fact, until we were downstairs the next morning for his endoscopy and they'd already injected the Propofol, which not only obviously didn't work as it had been injected into the muscle of his arm rather than the vein, but also probably burned like the fire of 1,000 suns.  They unwrapped him at that point and discovered the skin was so swollen Connor was purple at the armpit, he couldn't bend at the elbow and the whole arm looked like an overstuffed sausage.  The skin was stretched so tightly that when they took the IV tape off the top layer of skin peeled off with it in strips, leaving long swaths of open, raw flesh that looked like burns.  It took two days for his arm to finally return to normal size, and the whole inside of his elbow is currently a weepy, blistery mess.  Poor little guy.

The good news was that the scope didn't show any evidence of ulcers or anywhere he might have been bleeding, leaving the whole incident a mystery.  However, they did discover that the entire inside of his esophagus was swollen and lined with deep furrows, which is indicative of a condition called Eosinophilic Esophagitis (EoE).  It's a pretty newly discovered condition so there's not a lot out there about it, but you can find a basic explanation for it here.  We're waiting on the biopsy to come back before an official diagnosis, which should take about two weeks, but in the meantime they've started Connor on Prevacid, and they'll be doing another scope in a couple of months to see if that helps.  If the Prevacid doesn't improve matters, we'll play the find-the-allergy game until we can come up with a formula (most EoE is food allergy-related) that won't exacerbate the issue.  I'm glad they caught this; it's possible that this has been the cause of Connor's dysphagia and if we can get it under control he might be able to eat more by mouth!  That would be pretty cool.

Anyway, so we'd had an orthopedic appointment on Thursday that I really wanted Connor to keep, so I told anyone who would listen about it until word got back to our fantastic pediatric ortho doc, who told them just to send us down some time that afternoon and he'd fit us in whenever we came.  Connor's PT and I had been increasingly concerned about the little guy's scoliosis, as his curve seemed to be progressing a bit faster and he's been having some trouble breathing if he lies on his right side for too long.  

It turns out that Connor has about a 50 degree curve now, which is around ten degrees more than 2012.  However, the doctor still wants to hold out and delay his surgery until we're close as possible to ten years old, which is kind of the magic number as far as spinal fusions go.  So we have a shiny new referral to pulmonary to monitor Connor's lung function and make sure we're still safe to wait.

One of the major reasons we'll be waiting is because there's a much more urgent issue; one that I was pretty much completely blindsided by as it wasn't even on my radar.  It turns out that Connor's right femur is juuuuuuust about to pop out of the socket.  This is a pretty common problem with kids who don't walk at all and who have unusual muscle tone.  If he doesn't have surgery within the next month, it's likely that in addition to hip displacement he will begin experiencing hip dislocation issues, which can be enormously painful and do a lot of permanent damage.  His left femur isn't quite as urgent, but it's on its way out as well.

I swear, it's always something with this kid.  He doesn't do anything by halves.

So on May 20th, Connor is now scheduled for a bilateral varus derotational osteotomy with pelvic osteotomy, and probably an adductor lengthening as well.  Basically the surgeon will be taking my kid's thigh bones and hips apart, realigning all the pieces appropriately, and then bolting the whole mess back together with what looks like pieces of the Erector Set I played with as a kid.  Connor will spend the first week or so in the hospital, four-six weeks in a body brace, and will probably have a 3-6 month total recovery.  He'll be out of school for the rest of the year.

This will be the first major surgery Connor has had since he was about three weeks old, and it's by far the most complicated.  Jeremy will be able to be here for the first two or three weeks, but then he'll have to go back to his clinicals and the little guy will still be in his brace and almost entirely home-bound for another 1-4 weeks.  I'm still wrapping my head around how the heck I'm going to work this logistically; Connor will need around-the-clock care and frequent repositioning, and Eden will still need to do things like eat and occasionally leave the house.  I always like a good challenge, but this is kind of ridiculous.   

I also feel incredibly guilty because we're going to be putting Connor through some major trauma.  It's just not possible for us to explain to the little guy what this surgery is going to be like in a way that he's going to understand.  It will be terrifying and extremely painful, and he'll probably be set back a lot in his functional skills, and I really wish we didn't have to do it.  But the alternative is worse and the need is urgent, so we'll do what we have to do even if it's really really tough on all parties involved.  

So it's likely to be fairly crazy around here in the next few months, as we prepare for surgery and then begin Connor's long recovery.  It's not the news I hoped we'd get, but I'm so, so glad we kept the ortho appointment and found out he needed this done.  If we'd rescheduled, he might have already experienced a dislocation and we would have ended up with emergency surgery instead, which is never something we'd like to do.  I'd much rather have a plan in place and hopefully already have supports lined up for his post-surgery days.

I'll make my plans and figure out how the heck I'm going to juggle everything.  In the meantime, I'll be babying Connor's hip to make sure it doesn't pop out of the socket before the surgery, which totally sounds like something that would happen.  We do tend to do things in The Most Dramatic Fashion Ever around here, so I don't want to push my luck.  

So yeah, not the best of weeks.  I'm feeling pretty overwhelmed at the moment, and I'm kind of floundering around as I try to wrap my brain around everything that needs to get done.  I really hope this whole thing goes as smooth as it possibly could under the circumstances.  The little guy is such a fighter, and hopefully he'll bounce back quickly and be much more comfortable after he's fully recovered.

It'll be tough, but we'll make it!

~Jess

In Which Connor Is Stuck On Tape

Today was a busy day of running errands and phone calls, but I still got the chance to enjoy the return of the warm weather by pulling out the roller skates and going for a long trail skate.  I discovered that closing up my pads in a closed gym bag for the entire winter was probably not the best of ideas; I'm glad no one was trying to draft off of me on the trail because they probably would have passed out due to the smell.  It was, um, impressive.  Derby pads do not smell wonderful under the best of circumstances, and three months of zero air circulation does not improve matters.  Trust me on this one.

I still enjoyed myself, though.  It felt pretty good to be back on skates!

Anyway, the kids both had a good day.  The physical therapist kinesio-taped Connor on Wednesday to try and help him sit up a bit straighter, which would help with his scoliosis.  He doesn't mind the tape at all-- actually he kind of seems to like it.  It really seems to be working; his posture was much better today and he spent less time slumping over even when he was tired.  I'm hoping that a combination of the tape and continued use of the adaptive vehicle (which he can only activate when he is sitting up straight) will help slow down the progression of his curve a bit and also help him be a tad more balanced.  We'll just have to see how the next few weeks go!

Eden had swimming today after school. Once she was home we ate dinner and then after Connor went to bed she and I sat next to one another on the couch and read for a while with our mugs of mint hot chocolate.  So while it was a very busy day, it had a lovely ending.  Mint hot chocolate, books and snuggling with my girl?  Can't get much better than that!

~Jess

In Which I Watch A Bookworm Blossom

When Connor's nurse woke him up this morning for school, he started crying, signed "no, tired" and promptly went back to sleep.  This was not a wonderful start to the day.  I told her to let him doze and then woke him up myself about twenty minutes later.  He made a really sad face when I told him it was time to get up, so I brought him into the living room and snuggled with him until he absolutely had to get ready for school.  After that he was okay-- apparently morning snuggles solve many, many problems.

He ended up having a good day at school, and then he had an absolutely fantastic physical therapy session.  He's really getting the hang of the adaptive vehicle he's been driving around, and it was pretty cool to see him starting to figure out how to stop it at just the right place so that he could see what was going on.  He was really interested in the other kids' therapy sessions, and just wanted to stop the car and watch to see what they were doing.  It was cute.  

Eden had a good day as well; she came home in a really great mood after finishing all her homework at the after-school tutoring assistance program she goes to every Wednesday and finding out that she was the only student who had perfect attendance there.  She came right over and gave me a big hug where I was on the couch, and then plopped down beside me to do her reading for the day.  We read out loud together every day; she used to read out loud to me for twenty minutes, but we now each read a chapter, which can take considerably more time.  She just finished Charlie and the Chocolate Factory, and enjoyed it so much that we've started a second book by Roald Dahl: The BFG.  This happens to be one of my favorite children's books of all time, as it is so deliciously dark.  Eden and I are both enjoying it immensely.

She's also picking up books and looking through them on her own now; especially the many adoption-related biographies I have on the shelves.  Currently she's leafing through Cindy Champnella's The Waiting Child, and while I'm not sure how much of it she's actually taking in, she's spent quite a bit of time on it.  

When she first came home she didn't really care for books at all (in Thai or English) because she said the subject matter was boring.  Apparently the books that were available to her in Thailand were not very inspiring-- other than the Harry Potter series, which she read in its entirety.  Charlie and the Chocolate Factory was the first book we've read together where she was disappointed that the chapter was over and really wanted to know what happened next.  I can't tell you how amazing it is for me to watch her begin to fall in love with books.

Good thing I have about 1300 in the house.  I don't think she's going to run out of reading material any time soon.

Of course, it probably helps that we have no television reception and her Internet use is limited to two hours on weekdays and three on weekends-- provided she has her homework, chores, and of course her reading with me done.  Boredom is a good motivator for reading.  Still, I'm thrilled to see her starting to open that door; there are so many wonderful books out there I can't wait to share with her!

~Jess

In Which We Suffer From Various Ailments

I'm afraid Connor might be getting sick again; apparently he threw up at school and then kept falling asleep, and he spent most of Eden's swimming practice snuggling on me and dozing.  He actually asked to go to bed early tonight, which is extremely unusual for him, and when I ran through the usual routine of "Yes/No Twenty Questions," as we term it around here, he was able to tell me that he wasn't sleepy, but that his stomach didn't feel good.  He was out less than five minutes after I put him down.

So hopefully he's not picking up a tummy bug or something.  We'll see how he feels in the morning after a good rest.  He's been sick more than enough this winter already, thank you very much.

Eden woke up with a sore foot; she managed to accidentally launch herself backwards off the couch yesterday, did a reverse somersault and landed with her foot on the slate coffee table.  She started laughing so hard I thought she was crying and rushed over to make sure she was okay.  Whoops.  Luckily her foot wasn't really swollen at all and she could walk on it and move it without too much difficulty, so I told her that if it became a real issue at school she should go to the nurse and they'd give me a call.  Apparently by the end of the day it was feeling much better though, so I didn't hear from her.  I'm glad she was alright, and also that she didn't land on her head!  I think that may be the end of the lying-backwards-across-the-couch for a while.

~Jess

In Which It's Back To Business As Usual

The kids are back in school!  Hooray!

I took a nap, a long, leisurely shower (definitely something I didn't get the chance to indulge in over the past week) and then went out to lunch with my mom at the little cafe inside our local nursery, which is always a dangerous sort of outing.  My mom is a Gardening Enabler, and whenever we go to the nursery together we feed off of each other and always end up taking home rather more than we set out to find.  I got a few starts to replenish the annuals in my herb garden, which I actually needed, and picked up a couple of flowers as well for some of the pots I have on the porch, which I didn't need at all.  It was a lovely lunch.

The kids were both absolutely thrilled to be back to school, though I believe both of them were pretty tired by the end of the day.  It's tough getting back into regular routines after a week of sleeping in!  Hopefully they'll get settled pretty quickly; we've got a very busy couple of months coming up, so it will be good to have them fully acclimated back into their routines before all the craziness starts.

All in all it was a pretty quiet day!

~Jess

In Which I Have Way More Power Than Is Probably A Good Idea

Friday was an extra-long day of respite care for me since our care provider wasn't able to come last week, so Eden and I had the chance to spend quite a bit of time together.  I usually use the respite care for what Eden calls our Mommy-Daughter Day; I think it's really important for us to spend some one-on-one time together every week and I think it's done a ton for our bonding process over the last few months.

So we started off with lunch at our favorite local coffee shop.  These lunches are where Eden and I have some of our most interesting conversations.  As things have settled down over the past few months, she's starting to ask more and more in-depth questions about the world around her: questions about social issues, politics, morality and ethics.

A lot of them are questions I have a difficult time answering.  "Mom, why do some people no have home?" she asked me the other day as we passed a man busking on the street.  "Why do people no give them home?"  A security camera she spotted in a store led to a long conversation about the motivations behind why people might steal from others.  A video about a man searching for his Korean birthparents prompted a discussion about the different paths of adoption and the ethical questions surrounding each.  And every time I open my mouth she's listening, questioning, building her own viewpoints about the world based on what I say.

One of the things I didn't consider about adopting an older child was that my words and actions would be actively changing the way my daughter perceives herself and the people around her.  I thought her personality and beliefs would be mostly set, and it turns out that just isn't the case; while it's true that some of that is already formed, we've seen astronomical changes in her behavior and world view in the past few months.  I think this is the first time she's had the opportunity to think about many of these things. And since I'm the one here every day, and the one she comes to with her big and difficult questions, the person who has the most direct influence over how she's forming her world right now is me.

To tell you the truth, it's terrifying.

The thought that I have that much direct influence over another human being is a very scary thought.  Not only am I probably not the best person to learn normal social skills from, but I also don't have any idea what the heck I'm doing.  And it's probably not a good idea to give me that much power over anyone or anything, as I have an overwhelming urge to do things like manage to work in bears and/or explosions into every conversation we have.  Because bears and explosions are important, okay?

I've started to hear her parrot back to her friends viewpoints that I've expressed over the past few months, and it's very strange to hear things I've said coming out of her mouth.  This obviously isn't something I've experienced with Connor (though I believe I have inspired his love of Fraggle Rock and all things dinosaur-related) so it's been a new and strange experience for me.

I've had to start analyzing exactly what it is I'm saying about myself and others around me, because my child is always watching.  She's learning how to express emotions from me too, so I have to do way more thinking than I'd ever done before about what it is I do when I'm angry, sad, happy etc. and why I do it that way so I can explain it to her when she asks.  I think I'm doing an okay job, all things said and done, but it can be exhausting at times.

I'm really glad that she's starting to tackle some of these more difficult questions; it's something I did at the same age.  And I'm going to do my best to have as many of these in-depth discussions with her as possible before she figures out from her peers that listening to her parents is totally uncool.  And as she starts putting together her own map of this uncertain, sometimes frightening world, I'm looking forward to navigating it with her as far as she'll let me go.

~Jess

In Which We Spend A Day Out For Science

Today we spent the better portion of the day with a good friend and her kids down at the Pacific Science Center!  For the most part it was a great day and I really enjoyed getting to spend some time catching up with her, though Connor did up the drama by not only having a seizure on the highway going up to Seattle, but then giving us an encore in the elevator on the way up to the exhibits.  He ended up with some Diastat on board and dozed during most of the time we were there, including the butterfly house and the dinosaur exhibits, which are normally his favorites.  So that didn't make it the most successful post-birthday outing ever.  But he seemed to enjoy the little bit of it he saw while he was awake.  He especially liked the laser beams, because, well, how can you not enjoy laser beams?  I'm pretty sure not enjoying laser beams should be against the law.

Eden had a pretty good time; she especially enjoyed the butterfly house and the insects.  She did have some little kid-- probably around five or six years old-- walk up and kick her wheelchair out of nowhere, but I ratted him out to his mom so that was okay.  So take that as a warning, kids.  Kick my kid's wheelchair and I will totally tattle on you to your parents.  Humph.

Anyway, I really enjoyed the espionage special exhibit they had running; it's something I'd like to come back to with Jeremy when he's here visiting next month.  It would make a pretty interesting date night, I think.  That kind of thing is right up his alley.

We ate some passable-but-nothing-special Greek food at the food court just down the way from the PSC, and then got some fudge to take home.  We got caught in the usual glorious Seattle traffic though, and ended up not getting home until after seven, so I missed my choir practice.  It might have been for the best, though; Connor crashed pretty much the second I put him down in his bed, so it was probably good I didn't take him over to my parents' house.  I really hope he's not getting sick again; he just got over a bug and I would really like him to catch a break.

Other than the seizures, though, it was a good day!

~Jess

In Which Connor Hits The Road

Today was one of those days that I really needed a clone of myself; Eden and Connor both had appointments at the very same time in different parts of Puyallup.  Here's where one of the major advantages to adopting an older kid comes into play, though: Eden was able to just walk to the library after her dental appointment and wait there for me and Connor to finish up at physical therapy.

Both appointments went really well; Eden didn't have any cavities and, though she got a bit lost on the way to the library, kept a cool head and in the end was able to make it there without too much trouble.  She's really maturing, and I'm very proud of how she handled the situation.

Connor had his third session with the adaptive car he's learning to use right now, and this time I was able to get some video!  He wasn't quite as enthusiastic about it as he was last week, perhaps because he had a couple of short seizures earlier in the day, but he still did some excellent driving.

Right now he's using a head switch because his sensory issues keep him from pressing and holding down a button long enough to get more than a foot or so, and he's also only working on going forward at the moment. We're going to muck around with things in the future, though, and see what else we can do to expand his horizons!  So without further ado, here's Connor going for a spin:

He's doing so incredibly well with the car that we'll be adding in some occupational therapy specifically to see how far we can take this.  This is the first time Connor has been able to consistently move himself independently ever, and it's a huge step for him developmentally.  I can't tell you how incredible it is to see him make his own decision about where and when he wants to move.

Mostly, as it turns out, he channels Ariel from The Little Mermaid.  He wants to go where the people are.  And once he gets to the people, he quits moving and is perfectly content to sit there and look at his hands.  If there's too much noise or activity, he also shuts down.  I suspect that will improve with time; right now even though the car isn't hard work physically, it's got to be pretty mentally exhausting.  As he gets used to the idea that he can get himself around and doesn't have to concentrate quite so hard, I suspect he'll be less sensitive to what's going on around him.

Even though it's difficult, he's obviously having a fantastic time with it, though.  He'll stop at intersections and carefully peer down the hallway to see what's going on before moving on down the corridor.  He waves to everyone once he gets close to them so they can all tell him what a great job he's doing.  And when we go to take him out of the car, he signs "more" and then frantically tries to push the button to run away from us!  It's pretty cute.

So hooray for Connor!  The eventual goal is for him to be able to move himself around independently with a similar vehicle at home.  I can't wait to see what the cats are going to think of this thing!

~Jess

In Which Connor Is Eight

Happy birthday, Connor!

It's been a busy couple of days around here!  Yesterday Eden had a friend over to spend the night for the first time ever, which was pretty awesome.  They spent some time engaged in the time-honored adolescent traditions of hanging out at the mall and the movie theater, and then they stayed up in Eden's room giggling and chattering away until past midnight.  I'm really glad that she's made such a good friend, and that they get along so well!

This morning after a bit of a rough start (I forgot to tell the night nurse that the kids were on spring break, and Connor was unappreciative when he was dressed for school and then discovered that he was not, in fact, actually going) we took off for downtown and favorite local coffee shop.  Connor wore his birthday hat proudly, and accepted everyone's birthday greetings with a regal air.  He worked his way through a decent amount of whipped cream while the rest of us ate a leisurely breakfast, and then he was presented with a candle-bedecked, freshly-baked cinnamon roll and serenaded by the staff.  He thought the icing was pretty tasty!

After that, we ran a couple of errands and while Connor had his quiet time, the girls (Eden's friend stayed on until early evening, which was nice) and I made his birthday lemon bars for the evening.  Connor isn't a huge fan of cake, but is madly in love with lemon curd, and I secretly love making the shortbread base for the bars because I get to squish up all the butter, flour and sugar for the cookies by hand and it's tremendous amounts of fun.  Once the bars were set out to cool, we took off for Connor's AFO casting-- not the most fun activity in the world for a birthday, but necessary all the same.

Connor picked out the colors for his new AFOs, and this time they're definitely going to be a bit more flashy!  He picked his usual blue-and-black foam for the bottoms, but chose a neon rainbow-colored strap.  He was so excited about the straps that when he saw them, he gave them a round of applause.  I'm glad he's taking more of an interest in picking out his own things out; we'll see if he still likes them when we see the finished product in a few weeks!

After that we went home, my parents came over with a delicious dinner in tow, and we all ate a hearty meal (or in Connor's case, his weight in lemon curd) and then Skyped with Jeremy while we sang the birthday song yet another time and then opened presents.

We ended the day snuggled up on the couch watching one of Connor's new movies.  Overall I think it was a pretty successful birthday or at least a tiring one; by halfway through the film I had Eden asleep with her head on my knee and Connor passed out on my shoulder.  I think snuggling with my kiddos at the end of the day was probably my favorite part.  I can't believe how big they're both getting!

~Jess

In Which My Baby Isn't Such A Baby Anymore

I have a computer again!  It's exciting!  Connor and I both celebrated by contracting a glorious case of what felt like a combination of strep throat and malaria.  The little guy spent an entire week sprawled out on my chest in our reclining chair as it was the only way he could breathe.  I'm fully recovered now and he is much improved, but he still sounds a bit like a Victorian consumptive patient.  I keep having the urge to start carrying around white lace-edged handkerchiefs to hold over his mouth while he coughs.

Eden stayed ridiculously healthy, of course.  This child has not been sick a single day since she came home; apparently living with several hundred other children is a pretty good way to build up your immune system!  She was a huge help while I was convalescing; she cooked dinner several times and helped around the house a ton.  That's my girl!

Connor improved enough to go back to school just in time for Spring Break to start up.  I can't say it will be a particularly exciting break, as both my children would prefer to be in school every day of the week with no holidays at all.  Also I needed to cram as many appointments in as possible while they are off, so they'll be having thrilling adventures like getting fitted for new AFOs and going to the dentist.  Huzzah!

There is one exciting, though slightly terrifying thing happening during Spring Break though-- Connor will be turning eight years old on Tuesday.  Eight years old.  I know I say this about every birthday he has, but that doesn't actually seem like something that's possible.  He'll be in third grade next year.  Whoa.

Even though he's still really, really tiny (at forty-two inches and forty pounds, he's proportionate but the size of the average five year old) it's becoming more clear by the day that he's no longer such a little boy anymore.  His face is longer and losing some of its baby-roundness, though his cheeks and hands will always keep a bit of that due to his genetic condition.  He has six of his permanent teeth and two more primary teeth on the way out, and his reactions to the world around him are more mature as well.  I'm still going to have to take some time to get used to the idea that I'll be parenting an eight year old and a sixteen year old this year, though.

It just seems hard to believe!

~Jess

In Which I'm Sans Computer

Unfortunately my laptop is currently a lovely paperweight but is good for very little else.  So expect shorter entries for a little while until I have a new one.  I ask that you be forgiving about spelling too for a bit-- I'm typing this on the iPad and you wouldn't believe how fiddly the little keyboard is.  Also it keeps trying to auto fill everything I write with some creative but nonsensical word choices. Huzzah.  Or as autocorrect would have it, 'Hazard.' Alrighty then.

Anyway, today was just as busy as expected; Connor and I spent all day running around to various medical facilities taking care of things.  His neurologist was very pleased with how Connor's seizures have stabilized (we're generally only seeing one every two-three weeks unless Connor is sick, and they're usually under a minute) and didn't want to mess with his medication.  It probably helps that the kiddo has been the same size for about a year and a half now, so adjusting for weight hasn't really been a problem.

The kids are going to be getting quite a bit of time with their grandparents this weekend, because I'll be at the Refresh Adoption Conference up in Redmond.  I would totally link to it if I could get it to work on the dang iPad without it freezing, but that's not working out for me.  Sorry about that.  Anyway, it's the first time I've been to an adoption conference, and I'm really looking forward to connecting with other parents and listening to some interesting seminars!  It will be nice to have a bit of time to myself too, after the hectic week we've had around here.  I hope it will be fun!

~Jess

In Which We Will Do All The Driving

Tomorrow will be The Day Of The Medical Clinic Tours for me and the little guy, so I'm going to keep this short.  We need to leave here by 5:45 am to be able to make it through rush-hour traffic Connor's neurology appointment in Seattle.  Once it's over, we'll be headed to the pharmacy at the hospital on post, as one of Connor's new medications can only be picked up there if I don't want to have to pay for any more of it out of pocket.

  Then we need to stop by Connor's doctor's office in Puyallup to pick up the paperwork that allows the nurse to administer Connor's new medicine in school.  He needs it four times a day, and I really would rather not have to come in and give it to him every day if I can help it.

Not only is it kind of disruptive for the class, but it's a twenty-five minute commute each way.  So it eats into my important Sitting-Around-By-Myself-Eating-Chocolate time, and obviously we can't have that.  I'll be attending an adoption seminar on Friday, so I've got to cram all this stuff in tomorrow.

So basically it's going to be a whole lot of driving around to various waiting rooms.  Huzzah!

At least today was pretty good for all parties involved.  Connor had his feet measured for new AFOs, and Eden did quite a bit of studying for her classes.  I spent most of the day on the phone coordinating various appointments and running around trying to get the medication issue straightened out.  I can't say that I had a particularly good time doing it, but at least I accomplished some things, which always feels nice.

I'll be glad when things settle back down a bit, though!

~Jess

In Which We Have A Rough Day

We've had a couple of rather eventful days over here, I'm sorry to say.

Sunday night around eleven at night, I was sitting in the living room waiting for Connor's night nurse to arrive when I heard him start throwing up.  I put down my book, walked into his room, turned on the light and my heart sank.  A sizable patch on his sheets was stained pink and bright red.  Even though we'd had a false alarm a few weeks ago, there wasn't any doubt in my mind this time as to what was going on.

Connor was having a gastric bleed.

I got on the phone to make arrangements for Eden, and started packing up the things we'd need at the hospital.  Connor threw up more red-and-pink Pediasure while I was getting him ready to go.  Other than the fact that he was vomiting blood, he actually seemed perfectly fine-- a bit crabby that I was making him get up in the middle of the night, but not in any real pain.  So I drove him to the ER myself.

Because he really seemed like he was okay (and also possibly because of that false alarm earlier in the month) it took the ER about four hours to test the residual I brought with me and that was pulled in the hospital for blood.  Both tests came up positive.  At that point they inserted an IV-- which thrilled the kiddo, let me tell you-- drew levels, and gave Connor's GI doctor a call to figure out what he wanted to do.  Connor spent the time flirting with the nurses, complaining to me that he wanted to go home and patting his new gigantic teddy bear one of the techs brought him.  I spent the time watching back-to-back episodes of Sungkyunkwan Scandal and drinking massive amounts of coffee.  Thank goodness for wifi and caffeine.  

The little guy's blood levels came back without any troubles and he wasn't anemic, so that was a very good thing.  The GI doctor prescribed two new medications for Connor to help his stomach heal, and they sent us home around six-thirty in the morning.

It wasn't until much later in the day that I realized the emergency room doctor hadn't said anything about the fact that Connor was on aspirin.  The little guy takes it for stroke prevention, and he's been on it since he was six weeks old.  Long-term aspirin use is pretty notorious for potentially causing gastric hemorrhaging.  I was pretty surprised they didn't at least stop it while he was actively bleeding, so I called up the GI triage and asked them about it.  I got a call from the doctor this afternoon and we're stopping the aspirin until at least next week.  Hopefully that will give Connor a chance to heal while we figure out our next move.

So that was not a particularly fun couple of days.  I finally stopped pulling bright red residual out of Connor late Monday afternoon, and by the next morning it looked pretty dang close to the first time I'd taken him in.  By this evening I couldn't see any evidence of bleeding anymore, so that's a very good thing.  I'm glad it wasn't a serious bleed, and I'm hoping that he'll be more comfortable now that he's getting some treatment for it-- I can't imagine his poor little stomach has felt particularly wonderful lately.  

But I would really like to never, ever do that again.  As a mom of a medically fragile kid, my sense of what situations justify a freak-out on my part is waaaaay off.  Over the course of the past few years, I have performed mouth-to-mouth on the side of the highway, reinserted a g-tube on the changing table in a mall bathroom, and called 911 on multiple occasions without skipping a beat.  I have now discovered that watching my child vomit blood is well over that line, and I would never, ever like to see it again.

Whee.

~Jess

In Which We Watch Some Murderball And Connor Has A Blast

Connor looks likely to pull an all-nighter tonight, so I'll be up watching dramas for a while.  I'm not sure what the issue is-- maybe he's just reviewing how exciting the quad rugby game was today!

We caught the tail end of the game between Portland and Las Vegas, and then watched the Seattle Slam play the Boise Bombers.  While Eden, her friend and I all really enjoyed it, Connor had a blast-- he was so into the game that every time there was a break between quarters he got mad and pouted until they started playing again.  He clapped, yelled and grinned his way through the entire game.  It was awesome.

Quad rugby isn't going to be a viable sport for Connor when he gets older for a few reasons; he's not able to propel a wheelchair under his own power, he has no peripheral vision, and also he has just one kidney, so he's barred from all contact sports.  And trust me when I say that quad rugby is a full contact sport; by the end of the first half one guy on the court had blood soaking the wrap around his hand all the way to the wrist, and we saw some truly spectacular flips and collisions.  It's a really fast-paced and exciting game to watch, and it definitely can get brutal.

It was also a great opportunity for Eden and Connor to see some really competent, tough, capable athletes who use wheelchairs.  For that matter, it's really difficult to find accurate, positive portrayals of disabled people doing anything on television or in other media, and so I will jump at any chance I get to give the kids access to amazing role models like the men and women we saw today.  I'm hoping someday I'll be able to turn on the television and tune into a quad rugby game; now that would be a reason for me to actually have TV reception again!

The Seattle Slam won, and they'll be playing in the crossover finals tomorrow to determine which team will advance to Nationals in Kentucky later this year.  Unfortunately they're playing in the morning, so I won't be able to take the kids since we'll be in church.  We'll be cheering them on in spirit, though!

~Jess

In Which Connor Plays Hard And Eden Sees The Seasons

The kids both had pretty good days today; I used my respite care time to take Eden out for a little mother-daughter time while Connor enjoyed listening to music and playing on his rocking horse at home.  He was pretty tuckered out by the end of the day and went down quickly, which I'm happy about.  The quad rugby game tomorrow might be loud, and he always has fewer sensory issues in regards to loud noises if he's well rested.

Recently I made a questionable parenting decision and introduced Eden to donuts, and she has now decided that they are her new favorite treat.  So we went out and ate donuts at four in the afternoon, because hey, any time is a good time for donuts.  Then we did a bit of shopping and headed home.

I finally took down the pine wreath on our door today and started decorating for spring; even though we've still got nearly a month until the season is here it's really starting to feel like it's coming up soon!  Eden's been noticing all the bulbs pushing up in the garden-- last year she was too overwhelmed to really notice the changing season.  

In Thailand they have three seasons: hot and wet, hot and dry, and slightly cooler.  And by 'slightly  cooler,' I mean only ninety degrees.  So the whole concept of the seasons changing is pretty fascinating for her.  She also lived in a pretty urban area before she joined our family, and I don't think she had a lot of opportunities to notice things like new growth on plants or the habits of local wildlife because there was very little of that.  

She's getting to know our local hummingbird, Gus, very well because he's always more demanding in the winter time.  Today when Eden and I left the house, Gus was sitting on the top of our dwarf Japanese maple only inches from our front walk.  He was all puffed up and looked extremely put out that his feeder had run low.  We all eyed each other for a bit while he scolded us, and then he flew up to the top of a cherry tree and let us pass.  There are no hummingbirds in Thailand, so Eden thinks he's pretty amazing.  I'm so glad I get to share this sort of thing with her!

But close encounters with hummingbirds aside, my girl is thoroughly tired of winter by this point and has announced that fall is her favorite season so far because it's "a little bit hot, but not a lot hot."  

We'll see what she thinks of spring this time around!

~Jess

In Which Connor Depilates His Doll And Eden Makes A Plan

Connor had a bit of a clingy day today; I think he's still upset about Jer leaving.  He spent pretty much the whole morning hanging on to his Gobo Fraggle doll (we are huge fans of Fraggle Rock in this house), which is his absolute favorite, and didn't want to relinquish it when it was time to go to school.  So I let him carry it in, and promised to bring it back the second school was over.  That earned me a major pouty face, but he apparently perked up pretty quickly after I left.

Gobo is looking a bit worse for wear these days, as Connor likes to chew on his hair.  I think it's about time to add a Fraggle friend or two to the menagerie, or poor Gobo is going to end up bald.  Luckily Connor has a birthday coming up in a couple of months, so that gives me time to track down another buddy for him.  His second favorite character is Red, and she has a ton of chewable hair.  I'm thinking she might be a pretty good choice.

Eden had a good day today; she turned in her request for electives next year, and I'll be going in to help her register for her classes in a couple of weeks.  It's pretty neat to see her making choices about what path she wants to take in high school, which is coming up really quickly.  All but one of her electives will be taken up by ELL next year, but for the remaining slot she chose "Leadership" as her first pick.  I think we've got an aspiring business woman on our hands!  She's also talking about the possibility of going into a math-related field, like banking or accounting.  It's really fantastic to hear her voicing realistic career goals and starting to dream about what she'll be doing.

Making choices used to be really, really difficult for her as she didn't have a lot of prior freedom in making decisions for herself, so I'm proud to see how far she's come.  Even little things like choosing what to drink with dinner or which shoes to wear used to be major struggles, but now she does that sort of thing without any trouble.  I love how she's really starting to dream about her future and realize that so many possibilities are open to her.  That's our girl!

~Jess

In Which We Get Fired Up

This weekend we're headed to Tacoma to check out the US Quad Rugby Pacific Sectionals!  It's a major tournament that will determine which team from the Pacific Northwest will be headed to Nationals in March.  We'll be rooting on the Seattle Slam, our local team, and I'm super excited about taking the kids.  Eden has really enjoyed the roller derby bouts I've taken her to, and I suspect quad rugby (AKA murderball) is going to be right up her alley as well.

I think there's a general attitude in the United States that disabled sports can't possibly be as interesting or exciting to watch as typical sports teams, which explains the pathetic lack of media coverage of the Paralympics in past years.  It also explains why we've spent a bunch of time explaining that the Special Olympics and the Paralympics, while both awesome for different reasons, are definitely not the same thing.  That gets old really quickly.

So this year I am thrilled that NBC will be covering the Paralympics in a much more complete fashion, and for the first time it will be possible to actually see the events live!  It's about time someone in the media world figured out what a bunch of us already know-- that not only are Paralympic athletes every bit as elite and legitimate as their Olympic brothers and sisters, but also that the sports they play are, pardon my French, completely badass.

I mean, seriously.  Look at this and tell me you don't want to see it live:



Of course, quad rugby isn't played at the Winter Paralympics-- we'll have to wait until the Rio games for that.  Instead, there's ice sledge hockey.  This is every bit as fun to watch as ice hockey, I assure you.  Also, we won the gold back in 2010, though I couldn't watch the dang game until after it was over.

So hooray for more coverage this year!  I can't wait for the games to begin!

~Jess

In Which It's Back To Business As Usual

It was so lovely to have Jeremy here for a few days!  We spent some special time together with the kids on Friday, Sunday evening and Monday, but Saturday and the first half of Sunday was just for the two of us. We drove up to Belfair, which is a little town on the Hood Canal, and stayed in a lovely B&B close to the north shore.   It's been a long, long time (really- over nineteen months) since we've had the opportunity to have a bit of a vacation as a couple instead of as parents, so it was really nice to get away!

But Jer's back in California now, and it will probably be May when we see him next, unless I can manage to find a way to sneak down there before then.  The kids are on their mid-winter break at the moment, so they're off of school and we're spending the next couple of days taking it easy here at home.  We would be out doing fun things outdoors, but it seems like the Pacific Northwest apparently saved all the rain of the entire winter for this week.  It's been coming down sideways out there most of the day.  

Connor was a bit clingy and sad yesterday and today; he's usually that way after Jeremy leaves.  I think the transitions are pretty tough on him.  Eden's gotten used to Jer coming and going, as he's been in school as long as she's been a part of the family.  It will be interesting to see how the adjustment goes once he's back at home for a good while.  It's nice to think that by this time next year I'll be waiting for him to come home from work rather than waiting for his next visit!

~Jess

In Which Jer's Here And We Make Ourselves Scarce

Jeremy's here!

I picked him up from the airport after I dropped the kids off for school.  It's so, so nice to be talking to him face-to-face instead of over the phone or on a screen.

Tomorrow he and I are headed up to the Olympic peninsula for a little mini-vacation.  So you won't see a blog from me on Saturday, because other than my cell phone we will be sans electronics.  It's going to be really nice to be able to just spend time together, relax, and focus on each other instead of the eighty billion things we have going on our lives.

So glad he's home!

Jess

In Which Jer Is Almost Here

Jeremy comes tomorrow!

I'm so excited-- I can't wait to see him.  It's only for four days, but hey, any time with Jer is good time as far as I'm concerned.  It's just going to be really nice to spend some time with him and get the chance to relax.  Our schedule's been pretty busy of late, so I could definitely use some down time.

Today was no exception-- I spent most of it running errands, cleaning and making phone calls.  I did manage to get away long enough to fit a walk in and get my hair dyed though, which I was pretty excited about.  Since Jer is coming to visit I actually care about that sort of thing.  Three inches of dishwater blond and grayish roots are so not in this year.

I can't wait to see him!

~Jess

In Which We Have A Busy Time Of Things

Just a quick post today, because I'm pretty tired.  It was one of those kind of busy days where I felt like I sat down for about five minutes.  I had what seemed to be about eight billion errands to run, phone calls to make, and places I needed to shuttle one or more children.  Tomorrow is likely to be just as busy or busier, so I need to get some sleep!

Thankfully this weekend will be much, much more laid back, since Jeremy will be here and we're taking a bit of time together just the two of us.  That is, if the hotel will call me back to confirm the reservation.  That's another thing to add to my to-do list tomorrow!

~Jess

In Which We Don't Have A Particularly Fun Time

So Thursday Connor had a couple of seizures, threw up something that looked nothing like Pediasure and I pulled about 65 ml of what bore a strong resemblance to dark chocolate mixed with coffee grounds out of his g-tube.  This, for those of you who are not medically inclined, was an indication that the little guy might have had a major gastric bleed, which falls in the category of Things You Never Want To Have Happen To Your Kid Ever.  My threshold for panic over possible emergencies is pretty ridiculously high at this point, but I have to admit that after I saw the contents of the syringe I came the closest to freaking out that I have in a long, long time.

So after a phone call to the doctor's office, where the triage nurse told me that we needed to be at the hospital now, I packed up Connor, made arrangements for Eden to stay with my parents, and headed down to the emergency room.  The receptionist at the check-in and the nurse who did Connor's vitals both recognized us, because my child is a frequent flier down there.  While it gets us really good service, this is not the kind of thing I'm particularly thrilled to be able to say.

Anyway, the emergency room was apparently the cool place to hang out on a Thursday evening, because there were probably over 100 people in the waiting room.  The hospital was so crowded that they were turning away all ambulances that didn't have someone with an airway issue or who was actively coding inside.  Since the little guy, though lethargic and crabby, didn't seem to be dying at that particular moment, we settled down for what was probably going to be a long wait.

Connor doesn't like waiting.  Also he has an impeccable sense of dramatic timing.

So about fifteen minutes after his vital signs were taken, the little guy had a seizure.  I pulled him out of his chair, turned him sideways on my lap, and flagged down a passing nurse for what I thought was going to be helping me time.  She took one look at my kid, who was at that moment turning a particularly lovely shade of blue, told me to follow her and booked it through the doors.

Despite my protests that seizures with cyanosis were fairly commonplace in our house and not why we were here, they kicked some poor guy out of his room into the hallway, slammed clean sheets on the bed and told me to put Connor down.  Of course, his seizure ended just as they got the oxygen ready, and then he took a nice little nap in his new comfy digs.  That's one way to jump the line, I suppose.

So then shortly thereafter we saw the doctor, who tested the residual I'd brought in and discovered that, despite his agreement that it looked exactly like what you would expect with a gastric hemorrhage, it was not in fact blood.  So that was a very, very good thing.  However, Connor proceeded to have two more seizures in the emergency room, so they wouldn't let us go home either.  They gave him a hefty dose of Ativan after the last one, which made for a very sleepy kid.

I pointed out that Connor's seizure threshold lowered any time he got sick at all and it probably just meant he was coming down with something, that we wouldn't have brought him in for seizures and the reason we'd brought him in was resolved, and that any additional time we spent in the hospital meant adding to the risk of the little guy picking up some other nasty bug, but the doctor still decided he wanted us in overnight for observation and that the best thing would be for us to transfer up to Children's in Seattle.  I can understand his viewpoint, though I wasn't really excited about the decision.  Better safe than sorry, I suppose.  So off we went.

The ride there was probably the most dangerous part of the evening.  The roads were covered in ice and it was actively snowing along the first nine miles or so of the trip, and since Jer's gone I had to drive the wheelchair van up instead of riding in the ambulance with Connor like I usually do.  Wheelchair vans are not exactly built to drive well on icy roads, and I had a few harrowing moments where I could feel the back end start to fishtail despite traffic driving at about fifteen miles an hour.  Thankfully the weather cleared up a few miles north and it was smooth sailing after that, but I passed enough wrecks in the first part of the drive to make me very glad the roads would probably be clear by the time we came home.

So after I met the ambulance at Children's and Connor was checked in to the emergency department there, I repeated my reasoning for why we didn't need to be there to their attending physician. Thankfully I was able to convince her with the same arguments, and after a few hours, various clear diagnostic test results and a loading dose of Keppra to keep Connor from having more seizures while he worked through whatever bug he was likely coming down with, we were allowed to go home.  We finally got back at around 5:30 in the morning.

Connor spent the next few days getting over what was probably a fairly mild GI bug, and is now back to school and his usual business of being a super laid-back, happy little guy.  I'm finally caught up on sleep, and have also gotten back into my usual routine.  So all's well that ends well.

I'm hoping that's the last bit of excitement we'll have around here for a while!

~Jess

In Which I Spend Some Time Outdoors

This morning I started my new walking regime with a friend; we're going to be strolling along at a good clip together for an hour or so a few times a week.  This is a very good thing, as recently my most strenuous exercise has been walking over to the pantry to see if I have any more chocolate hidden behind the canned peas, or if I've managed to find and eat it all.

It was a lovely walk, and I'm looking forward to doing it more often.  In the last year and a half I've gotten out of the habit of being outside for any long period of time (you should see the state of my poor garden right now) because I have a child who is really, really temperature sensitive, and I was surprised at how nice it felt just to walk along outdoors for a while with some good company.  Of course, I prefer walking when it isn't twenty some-odd degrees outside, but hey, it was still fun!

Then I went back to the house and got cleaned up so I could take my mom out to lunch for her birthday.  It's probably the first time in six or seven years I've actually been able to do that since until this past summer we lived on different sides of the country, so I was excited about getting the chance to make it happen this year!  I'm really glad my parents are here; now if I can just get all my other relatives to move up this way I'll be set.

Eden had another pretty solid day of homework, so we spent the evening at home.  Tomorrow will be another really busy day; Connor has an audiology appointment bright and early in the morning.  Hopefully he'll sleep tonight so he won't be too crabby!

~Jess

In Which Long Distance Relationships Are Not Fun

I'm throwing myself a bit of a pity party over here at the moment-- Jer and I went on our very first date around this time of year a rather appallingly long time ago, and I'm getting all sentimental and missing him bunches.

It's been nineteen months now since Jer and I have been living in different states while he attends Army PA school, and I have to say I don't think things have gotten any easier.  There are times I can lose myself in the daily routine of taking care of the kids and the house, and then there are other times  I miss him so much I can hardly breathe.  

It's not like he's deployed-- we talk on the phone literally every day, and I get to see him once every
three or four months.  He's not in harm's way, and with only eleven more months to go we're well past the midpoint of our separation now and I know that in less than a year he'll be home.  But that doesn't change how difficult this whole long-distance marriage thing is.  I don't say that because I'm worried about our marriage falling apart or anything, because after weathering all the ridiculously dramatic situations we've been through in the past ten years I'm pretty sure that nothing short of a nuclear holocaust could give us much trouble in that department.

It's more that I have to remind myself two or three times a month (or day, depending on how things are going) that as a responsible adult and parent I cannot just stuff the kids in the car, drive down to California and announce that, to heck with all the really legitimate reasons why we can't be down there with him, we're moving in.

Of course I can't actually do that, because the main reason we're not down there is that Connor doesn't have a heat release mechanism and it gets to 95 degrees there in the summer, making living there an Extremely Poor Parenting Decision.  Also Jer is living in someone else's house and I doubt they'd be okay with three more people moving into their spare bedroom.  But I daydream about it a lot.

I've developed all sorts of weird little coping mechanisms to make it feel like Jer's here.  I keep a toothbrush in the bathroom for him and a pair of his shoes in the closet by the door.  I've been careful not to take over his side of the closet even though my side is overflowing right now.  I still only sleep on one side of the bed.  Sometimes after a really hard day, I'm a bit embarrassed to admit, I even pile up pillows behind my back and pretend he's sleeping next to me.

I'm so, so proud of him for doing what he's doing, and in the grand scheme of things two-and-a-half years isn't all that long.  I guess one of the disadvantages of being utterly, completely head-over-heels for the man I married is that separations like this are always going to be pretty tough.  I'm really looking forward to the day he's home for good (or at least for a good while-- he is in the military, after all) and in the meantime I'll keep on keeping on.  That's life!

But yeah, it's hard right now.

~Jess

In Which Spring Says Never Mind

The hummingbirds were out in force today!  Our in-resident hummingbird, Gus, spent the morning following me around the yard buzzing me and yelling at me until I refilled his feeder.  Every morning he sits up in the neighbor's flowering cherry tree and announces to the entire neighborhood that our house is his.  This morning at Connor's school, another hummingbird was sitting in a tree right next to our car making the same announcement about his turf.  

I had no idea hummingbirds were so incredibly loud before I moved up here, but they really are.  Gus sounds a bit like a cross between a digital watch and an electric pencil sharpener.  Also he is really, really bossy.  I'm pretty sure Gus believes we live in this house solely for his convenience.

I hope our little fluffy dictator stays nice and warm in the next few days; the temperature is supposed to get down in the 'teens a few nights this week.  It's been really nice and sunny lately, and balmy enough around here that my dutch iris are actually blooming already, so I may have to run out and cover them up tomorrow before the really frosty weather gets here.  

I'll have to make sure our walk is clear of ice too; Eden definitely has more issues with falls in the winter time if the conditions outside are slick.  Her balance and walking really have improved an incredible amount though; she's been working hard on picking her toes up instead of dragging them, and it's amazing to see the difference in how she's moving.  I think once we go back to visit Thailand in a year or two (provided things have settled down over there) that her friends will be amazed at how differently she carries herself!

~Jess

In Which We Have A Pretty Good Day

Connor had a better day today, thankfully-- no seizures, and he seemed to be feeling pretty good.  Hopefully yesterday was a one-off and he isn't getting sick again or anything.  He did spend quite a bit of time napping on me both in church and later in the afternoon, so I'm a bit surprised that he actually went down to sleep tonight without a fuss.  Yesterday was definitely a strain on his system though, so that may be why he's wanting some extra nap time.  Either that or he's getting sick.  My vote is for the extra recovery nap time.  Keep your fingers crossed, people.

We didn't spend much time at home today; after church I dropped Eden and a friend off at the mall, and then once I picked them up we headed over to my parents' house to spend some quality time watching the Super Bowl and eating corn chowder.  I'm the first to admit that I'm not a huge football fan, but judging from the sheer number of fireworks and air horns I'm still hearing outside over four hours after the game ended though, I'm probably in the minority around here as far as that goes.  That's okay.  I enjoyed the game, and I also got to eat homemade corn chowder, which makes for a great night as far as I'm concerned.

I'm just really, really glad I'm not trying to drive around in Seattle right now.  From the videos my friends are posting, it looks like the zombie apocalypse up there right now, if the zombie apocalypse only affected people wearing blue and green and involved lots and lots of beer.

Hope everybody stays safe and has lots of fun!

~Jess

In Which I Have A Close Encounter Of The Adorable Kind

Our plans for visiting the Lunar New Year festival were derailed today when I got an e-mail about a Saturday morning swim practice for Eden.  Her swim team was planning a trip up to Port Orchard to get a chance to practice in the long course pool there.  So we got up ridiculously early in the morning and made the hour-or-so trip up that way to join her teammates.

Her practice was three hours long, and I didn't feel like sitting on those metal bleachers the whole time watching the kids swim back and forth, and back and forth, and back and forth ad nauseam.  I'm all about being a supportive parent, but swimming, I'm sad to say, is not exactly the most exciting sport to watch.  So I put Connor back in the van and drove up the coast until I saw signs for Manchester State Park and decided to check it out.  Access to all of the state parks is free for disabled park visitors and their caretakers, which is pretty awesome, so when the chance for a spontaneous visit to one I haven't seen before comes up, I almost always take advantage of it.

Manchester State Park turned out to not be the most accessible park ever-- many of the trails were sort-of paved in chunks of asphalt and large pebbles-- but Connor was okay with that because it made for a bouncy ride, which he thought was fun.  I took him down the path along the coast for a bit, and we stopped and watched a small group of grebes diving for fish out in the sound.  It was very peaceful, if a little cold, and since it was only nine in the morning it seemed like we pretty much had the park to ourselves.  

On the bouncy way back to the car Connor started rubbing his eyes, and shortly after we reached the paved park of the trail again he was asleep against the side of his wheelchair.  I didn't want to put him back in the car immediately since that would wake him up, so I kept going and took the short paved path down by a little rocky beach.  I parked him on the trail where I could see him easily and walked down the beach towards a large speckled granite boulder to sit for a minute and let him have a rest.

I was about three feet away when the top of the boulder rose up and locked eyes with me.

I froze in shock.  The harbor seal and I stared at one another.  His plump, grey mottled body was almost the exact same color as the lichen-covered stone, and he'd curled himself neatly into a cup-shaped depression on top of the rock so from the trail he was nearly invisible.  He regarded me solemnly for a minute while I did my best not to breathe, blinked his huge black eyes a few times, seemed to come to some sort of conclusion about me, yawned widely and then flopped back down like a cat and went to sleep. 

I stood there for a while and watched his side rise and fall as he napped.  A few of his long white whiskers curled up at the ends, and every once in a while his nose would twitch like he was dreaming.  Finally Connor woke up and began making his happy "train whistle noise" from his chair, so I knew it was time to go.  I carefully backed away from the rock, but halfway back to where Connor waited the seal lifted his head again, and he locked eyes with me one more time before casually turning and sliding down the boulder into the ocean.  His head popped up in the water about thirty feet away, and he seemed curious about me and Connor because he swam along beside us, keeping pace until the trail turned off towards the parking lot.

So that was my accidental seal encounter, and it was pretty amazing.  I never would have approached so closely had I know he was there, but I'm glad he didn't seem to find me much of a threat.  I seem to have a knack for stumbling into really close encounters with wild animals, like when this and this happened.  Also that time I opened the front door after a big storm and a bat crawled into my house, though I may not have blogged about that because I think it happened during that big break I took from blogging.  Did I tell you guys about that?  I can't remember, but if I haven't I totally should, because, you know, there was a bat.  In my house.  

Anyway, so after that incredible morning we went home and all took a nap, which was much-needed by everybody.  Then we got up and headed out to the grocery store where Connor proceeded to have a thirteen-and-a-half minute seizure in the middle of the pasta aisle, because apparently this day was going way, way too well and the universe likes to mess with me.  He's currently sleeping off his emergency seizure medication, and we'll see how he's feeling in the morning.

Oh well.  Seals are still awesome.

~Jess

In Which Sleep Will Happen Shortly And It Is Awesome

Just popping in here: Connor is currently asleep and I don't have to wait up for the night nurse since it's one of her days off, so I'm going to try for an early bedtime tonight!  This almost never happens, so I'm super excited.  Eden is a bit put-out that our typical bedtime routine will be interrupted, but hey, she'll live.  We've got to be up by six tomorrow so that she can get to her three-hour swim practice on time, so a little extra sleep is going to go a long way.

For me, anyway.  She's not planning to go to bed early, because she is a teenager and I'm pretty sure going to bed early is A Thing That Teenagers Must Never Do.  It's a rule or something.

So both kids had good days today, Jeremy is fine, the cats are causing trouble as usual, I didn't manage to burn the house down today, and all that sort of stuff.  On to the sleep!

Hooray for sleep!

~Jess

In Which We'll Be Visiting A Lot Of Waiting Rooms

February looks like it's gearing up to be a month of appointments; Connor will have an audiology, dental and neurology appointment, and Eden will have a dental appointment and, once I get it set up, her annual well-check visit as well.  So we'll be plenty busy in the next few weeks.

Connor's due for a new pair of hearing aids; his current ones are five years old and are starting to drain batteries faster and faster.  Hearing aids have changed a lot in the past few years, so it will interesting to see what he ends up with.  I'm curious to see what color he'll pick out if he has a choice; he pretty consistently chooses orange and blue for his AFOs, so we'll see if he follows that trend again for his hearing aids.

I'm fine with whatever color so long as they stand out against our wood floors.  Every once in a while if I get lazy and leave them on the coffee table when I take them out for Connor's nap, one of the cats thinks they make a great toy and runs off with them.  So I need something high contrast to find them under whatever piece of furniture they've been shoved underneath by a little kitty paw.

Anyway, hopefully whatever hearing aids the audiologist recommends will be as robust as these have proved to be over the years.  They've been dropped, thrown up on, chewed on by a cat and a teething toddler, and thrown up on, among other things.  I'm still amazed they've lasted this long!

~Jess

In Which We're Back To Business As Usual

I don't have much to report today!  Eden had a half-day of school due to it being the end of the semester, so I spent the morning doing as many chores as I could, and then the afternoon running various errands and carting the children around to physical therapy and swimming.  Traffic was bad enough that we didn't get home until after nine.  Connor immediately crashed, and Eden went to bed early because she was so tired.  

So it looks like other than the unusual half-day today, things have pretty much gotten back to normal around here, which is a relief.  I'm taking the kids to the lunar new year celebration and the Asian Art Museum up in Seattle this weekend, so I'm trying to get caught up on as much as I can around the house before Saturday so I can go with a clear conscience.  Hopefully it won't be too crowded for Eden; this will be the first year I've taken her and she's not a big fan of crowds.  I know Connor will enjoy it; he absolutely loves the lion dance and the taiko drumming, and he's been plenty of times in previous years.  

I'll probably pack some ear plugs for the Little Miss and we'll give it a go!

~Jess

In Which Things Are Looking Up And I Look Back

Connor went back to school today!  This means that I can once again start looking forward to such events as gaining back a bit of my sanity and the basic mores of personal hygiene.  When your child can literally keel over and die while you are in the shower, you take really short showers.  Either that or you get up before six in the morning while the night nurse is still there to take them.  Guess which option I've been choosing.

Anyway, so Connor was just as excited to get back to school as I was to take him there, so that was nice.  He apparently had a great day, though once I got him home he crashed hard and napped for nearly three hours.  Apparently they gave him a good workout.  I'm really glad that he loves school so much and was ready to get back to it.  Both my kids are this way, actually.  Eden's favorite day is Monday, because that's the day she gets to go back to school after the weekend is over.  Eden is a strange kid; she's perhaps the only teen I've ever met who is actually enjoying her middle school experience.  I remember spending most of my eighth grade year wishing I was as far away from school as possible, so I can't really relate.

Okay granted, I'd moved to a new town my eighth grade year and had managed to break my collarbone during the summer, so I spent the first four months of school wearing a back brace under my clothing that pulled my shoulders back so I looked like I had ridiculously good posture, I had to use a luggage carrier for my books instead of a backpack, and all my clothing had to button at the sleeves.  Also the PE teacher told me that since I couldn't exercise I had to be the 'classroom monitor' and sit in the room with a clipboard writing down the names of anyone who did anything wrong, or he would fail me.

And also I was painfully shy, socially awkward, and had read every book ever written by Mercedes Lackey, which didn't help matters.  Every time I have to meet a new group of people I still have flashbacks to the time that Crystal I-Can't-Remember-Her-Last-Name told me to sit at a different lunch table because "I don't like you and no one else at the table likes you either."  I asked her which table she'd suggest, walked over, put my tray down, excused myself and then went and sobbed into my gym towel in a bathroom stall for forty-five minutes with my feet drawn up on the toilet seat so no one would see me.  Then I got detention for being late to social studies. Yeah, middle school.  Good times.

Um, anyway, got off on a bit of a tangent there.  But overall it was a good day, and I'm glad the little guy is feeling better and back in the classroom!  And I'm also glad Eden enjoys school as much as she does.  She's got enough stuff going on without having any Crystal Whats-Her-Faces in her life, so let's keep it that way, right?

~Jess

In Which Connor Stays Home Again And I Become A Criminal

It's day ten of the Epic Sickness Saga we've been embarked upon around here.  I'm currently making black rice pudding with salted coconut as an afternoon snack and doing all of the laundry in the house.  Connor is amusing himself by watching The Pirates of Penzance and attempting to stick his finger aaaaaaaalll the way up his nose by way of commentary. 

He's gotten to that stage of his illness where he's still sick but really, really bored with sitting around.  Mostly he just wants to listen to "The Pirate King" and "I Am the Very Model of a Modern Major General" over and over again, and he pounds on his tambourine until he exhausts himself and signs "don't like" through the rest of it.  When he's not coughing up a lung, that is.  Or napping.  He's doing a lot of upright napping.  Being sick that long can tire a little body out.

So we're staying home today, except for the trip I had to make up to my favorite coffee shop, since I managed to walk out on my bill there.  Again.  See, I pretty much always pay at the register first, and so if I sit down and eat first my brain apparently short circuits and I forget that I owe them money.  I even joked with the waitress as I was sitting down to remind me to pay so I didn't walk out on them again, and then I totally did it anyway.  I blame extreme sleep deprivation.  Also I think my brain hates me or something.

To make it even worse, I wasn't the one who remembered the next morning that I hadn't paid.  Eden piped up during breakfast and said:

"Mommy, I know something you forget!"

Then she wanted me to guess.  As Connor had stayed up until three in the morning the night before, I was not in a guessing mood.

"Just tell me," I said.

"You forget to pay for food!"  Then she laughed at me and gave me a round of applause.

Clearly I am setting a stellar example for my children here in terms of fiscal responsibility and, you know, not doing stuff that's illegal.  Huzzah.

Luckily the coffee shop folks are very, very nice people and realize that I'm not doing this on purpose and that I will, in fact pay them once I realize I have stiffed them, but I'm sure that this is getting old.  And let me tell you, it was embarrassing enough the first time I did it-- let alone the second or third.  I gave them my phone number this time so they can call me if I do it again though, because this is getting ridiculous.  I am so not ready to start a new career in unintentional petty theft.

This is what parenting has evidently reduced me to-- I used to be able to write complex, nuanced fifteen-page papers on topics like the Order of the Garter's possible connection to "Sir Gawain and the Green Knight," and now I can't even remember to close out my tab not even half an hour after I've joked with the barista about not closing out said tab.

Sigh.

~Jess

In Which The Sickikin Returns

I took Connor to church today since he's been so much perkier-- he woke up smiling and laughing, and seemed to have a lot more energy.  He started rubbing his eyes halfway there and by the time the service started he was a cranky, sleepy mess.  He spent the entire service either sleeping on me or doing his best impression of a Victorian waif dying of consumption.  Good times.

So it looks like he'll be missing yet another day of school tomorrow, as by this evening he also had a runny nose and it's entirely possible he's coming down with some entirely new and exciting bug.  He has a tendency to cluster every illness he plans to get for the entire season into a couple of weeks, so this isn't surprising.  Once his immune system is down I think whichever germ got there first just throws open the doors and lets all the rest of them in.  I guess we'll just have to see what the next few days look like, right?

~Jess