In Which Everyone is Sick And I Review Our Timeline

It was more sicky times in our household today; Jer was actually sick enough that he ended up staying home from work.  Connor didn't have school today, so he didn't miss anything.  He seems to be on the mend, though, so I'm hoping he'll be able to head to school tomorrow.  I'm still in the Just Getting Sick stage right now, and I'm hoping that means it will be relatively mild for me since I've held out his long.  Jer and I are supposed to have a date on Friday night and I will be going out, dang it, even if I have to drag myself to the car.

I have no idea where the heck we'll be going, but it will involve going out and spending time together so we'll have a good time regardless of what we decide to do.

Our adoption agency will be back in the office one week from today, and I'm already going just a wee bit nuts waiting.  It's funny how most of the time I'm okay being patient and waiting on news, but when they're actually over there I get all antsy.  I think it's because I'm a little afraid they'll bring back bad news about the adoption or something, and so while I'm excited about seeing new pictures and video I'm also a little bit nervous.  Oh well; odds are that things are moving along as they should and I'm just a little high strung about this whole process.  I guess we'll find out next week!

We have a definite time crunch; because of cultural influences, large numbers of families wishing to adopt and the floods this year wait times for children like Ellen have expanded to 18-30 months for the initial approval and another 5-8 months for travel.  If our wait was on the longer end of that time scale we would simply run out of time to bring her home; she has to be here before she turns 16 in order for us to be able to adopt her. 

Our dossier has currently been over there for twelve months, and Ellen turns 16 in January of 2014.  This gives us another 22 months to bring her home before she ages out.  Based on the current wait times, we're looking at another 11 to 26 months-- provided the wait times don't expand again, of course.  So we're really, really hoping it will be on the shorter end of that scale and that we won't be in danger of her becoming ineligible for adoption before we're able to get her home. 

Here's to hoping we'll get good news!

~Jess

In Which It Is Sicky Times Around Here

Connor was a snifflekin today, and Jeremy felt so lousy he ended up coming home from work early.  He said he felt like it was some sort of flu bug, and he actually seems to be sicker than Connor at the moment.  That's probably a first around here. 

The little guy did all right until early afternoon, when he had a couple of seizures and then crashed.  He's been asleep since about three today, though he wakes himself up every once in a while because he's snoring too loud. 

I'm still feeling fine, though I was a little achy and tired today so I'm wondering if I'm just starting to catch it.  These days it's hard to tell pre-flu achiness apart from my roller derby bruises.  Either way we'll be taking it easy tomorrow so that the Connor can get some good recovery time in and I can head off being sick. 

No doubt the cats will be thrilled with this plan.  At some point in the past few months they have evolved into aggressive lap cats.  I think it's a combination of getting into kitty middle age (Cricket is about seven years old now and Loki is about six) and it being winter time; the cats have apparently decided that I make a very pleasant rump warmer.  They prefer me to Jeremy, probably because I am squishier and therefore more comfortable.  Currently Cricket is occupying my shins, and I'm having to peer around Loki to see the computer screen, as he has decided he needs to sit on my chest and head butt me under the chin.  Loki is good at testing my typing skills.  I don't mind it except when they decide it's time to rumble with each other and I end up with a play-fighting ball of cats rolling around on my knees.  This makes for exciting times.

We'll see if this behavior continues when summer comes around and there are lovely sunny windows to lay in.  Crazy cats. 

~Jess

In Which Connor Gets The Snuffles And We Do A Bajillion Things

Little guy woke up all snuffly this morning, and it looks like he may be coming down with a cold.  I'm hoping he's just having a bit of an allergic reaction to something instead of getting sick again, but it's not highly likely.  Oh well-- hopefully this will be a mild bug and he'll be over it quickly.  He's snoring so loudly right now that he keeps waking himself up.  Poor little boo.

The snuffles didn't slow us down too much today though; we had a lot of things to do.  We dropped off laboratory samples and paperwork at three different medical facilities across town.   I got the ball rolling on qualifying for night nursing care, and Connor is now on the waiting list for outside weekly physical therapy.  It looks like tomorrow is going to be just as busy, so hopefully little guy won't feel too under the weather.  We'll just have to see.

Uh oh-- I can hear a lot of coughing going on in the other room right now.  Jer sounds like he might be coming down with the same cold.  Hopefully that means he'll be mostly over it by the time I get it.

No more being sick allowed!

~Jess

In Which Connor Gets A Letter In The Mail

Last week, Connor got a letter in the mail.

It read:

"Dear Connor,
     I just want to tell you how much I admire your incredible spirit and your ongoing courage.  You always do your best at school and always with such a great attitude!  I am so proud of you!!
                                                                                       Love, Miss Janet"

Who is Miss Janet, you might ask?  Miss Janet is only the best preschool teacher in the entire universe.

Many of us probably remember one teacher who really sparked a love of learning, who made going to school fun and radiated the kind of enthusiasm and love that kids can't help but respond to.  Mine was my kindergarten teacher (Miss Sidweber, if you're out there, you are amazing).   Miss Janet is that kind of teacher.  Connor has had her for three years now and I think she's a huge reason why he gets so excited every morning when it's time to go to school.  You all know me and that I'm just slightly paranoid about letting my kid out of my sight, but from day one I've been able to walk away from Miss Janet's classroom knowing I've left him in the best of hands.

We haven't made it easy on Miss Janet in the past few years; there have been a few ambulance calls, lots and lots of absences due to various health-related issues, and the unique challenges of teaching a child with Connor's combination of extremely easygoing personality (read: difficult to motivate), communication challenges and physical special needs.  Not to mention that she has to deal with me, the ultimate helicopter parent.  She's handled it all with grace, and I think many of the strides Connor has made in the past few years can be directly attributed to her and her amazing team of paraeducators and therapists.  She pushes him to make new strides and manages to make things fun while she's at it. 

And I've never heard her complain about having a bad day or about any of the kids-- she showers them all with compassion and challenges them to do their very best.  I've seen kids who had to be carried screaming into the room at the beginning of the year blossom so that by the end of the year they are all smiles when they get to school.  It's obvious that the kids, no matter their developmental level, realize that Miss Janet's classroom is a safe place where people love them and will help them grow.

He'll be graduating from her class this year and heading on to first grade at a new school, and I desperately want to stuff her and her phenomenal team in a suitcase and take them with us.  Or if that won't work, maybe we can clone them all.  I'm sure the rest of his graduating class would probably like their own personal Miss Janet to take with them too.

Seriously, everyone needs a Miss Janet.  She takes the time (sometimes well into her lunch break, as I am a Slightly Needy Parent) to let me know how Connor did in school every day.  She and her team have come to our house to have meetings with us about his care.  She sends him personal letters in the mail telling him how proud she is of him, for pete's sake.  You can't get much better than that. 

So Connor and I read his letter and after I pulled myself together ("Mommy's not crying Connor-- my eyes are leaking") we put it up together on Connor's bulletin board where we hang all of his important artwork and awards and whatnot.  It's hung at wheelchair level so Connor can see it and we read it often.  He always smiles when we get to the part where she tells him how proud she is of him, and asks to hear it over and over again.

We're going to miss her so much.

~Jess

In Which We Have A Lazy Day

I had a lazy day today, which was much needed after our crazy week.  Jeremy let me sleep in late, which was good because Connor stayed up until the wee hours of the morning.  I think I'm going to get on that night nursing care thing ASAP.  I'd like to catch up on all the sleep I've missed.

Connor seemed to be feeling better, which was a very good thing.  He got through about one and a half hours worth of WALL-E in his stander, which was pretty awesome.  Then he did a whole bunch of tummy time where I stretched out his hips and hamstrings.  He was not terribly thrilled about that part of the day, but he tolerated it okay.

Our adoption agency is off to Thailand on Monday!  We sent a small care package with them and a short list of questions for Ellen and her caregivers about how her year has gone.  They get back a week and a half from now, so from that Wednesday on you can expect me to be glued to my phone.  I can't wait to get an update on our girl!

~Jess

In Which Connor Goes To Clinic And I Might Actually Get Sleep Someday

Another super crazy day today.  Seems like we've had a lot of those this week!

We got up bright and early this morning and drove down to the hospital for Connor's developmental clinic visit.  This year he was in the neuromuscular clinic, so we saw a developmental pediatrician, physical therapist, neurologist and genetic counselor.  Also the urologist and the head of the developmental peds department popped in as an added bonus. 

Basically the purpose of the developmental clinic is to make sure Connor is receiving all of the treatment and services he needs, and to get a general picture of his overall health as well as current medical issues.  Jer was able to come for the first two appointments, which was pretty nice.  He doesn't get to come to Connor's appointments very often, so it's always good to have him along. 

The basic conclusion the doctors came to was that for the most part we're on top of things as far as Connor's care goes, and that we've got our bases covered with his therapy, adaptive equipment and specialist appointments.  There was one thing that the developmental ped thought we could add to our repertoire as far as services go, though.  Connor is enrolled in the Extended Care Health Option (ECHO) with our insurance so that we can receive the medical equipment that he needs.  One of the things that ECHO covers for certain children is home health care.  Because Connor is a medically complicated child and he has a g-tube pump at night, we should be eligible for 40 hours of home nursing care a week.  This isn't meant to be used for childcare services, and it is in addition and not a replacement of our current respite care services. 

The big benefit for us is that five days a week I could have a nurse come in and monitor Connor at night while I got a blissful eight hours of sleep.  Seriously, eight hours of sleep on a regular basis sounds like some sort of crazy pipe dream to me right now.  I can't remember the last time I got eight hours of sleep five days in a row, but I think it probably happened before Connor was born.  So if we can get that set up it would be pretty fantastic for me.  At the very least it would seriously lower the amount of money I spend on caffeine each month. 

It wasn't all great times today though-- he started getting a migraine after the first hour or so of clinic and he threw up all over me.  Then when the urologist came in and did his quick check the little guy's diaper didn't make it back on properly and about twenty minutes after he threw up all over the place he somehow managed to pee all over my lap and yet mysteriously get none of it on his own pants.  I still have no idea how that happened.  Anyway, we still had about two more hours of appointments to get through, and I wasn't exactly as fresh as a daisy by the end of it. 

The little guy wasn't feeling so hot either, though it wasn't because he was covered in various bodily fluids.  He spent the whole car ride home with his eyes closed and his fist pressed up against his forehead, and then he napped for the next four hours.  I gave him some Tylenol, but sleeping it off seems to be the only really effective way to treat his migraines.  When he woke up he was totally wiped out, and just wanted to spent the rest of the evening curled up on my lap with his head buried in my shirt.  So it was not the best day for the kiddo-- being poked and prodded and then getting a massive headache is no fun. 

Of course now he's wide awake and chipper.  Oh well.  At least I can sleep in tomorrow.

~Jess

In Which We Have A Paperwork Day

Another busy day today-- this one filled with a ton of paperwork and phone calls.  I usually designate at least one day a week to handling all of Connor's appointment booking, insurance calls and forms, and I spent several hours at it today.  The little guy has his annual developmental clinic appointment tomorrow, so I needed to make sure we had all our ducks in a row.  We alternate which clinic we're seen in each year, and this year it's the neuromuscular clinic. 

Though come to think of it, I'm pretty sure we saw the neuromuscular team last year.  Oh well. 

Anyway, he'll have about four hours worth of appointments and he'll be missing a day of school, which unfortunately can't be helped.  Because they have to get the team together, they only schedule these for 8:15 in the morning on Fridays.  So there's no way around it.

So after getting his stuff squared away for that, I scheduled a urology appointment for him and got the ball rolling on his physical therapy outside of school.  We'd dropped our outside therapy because Connor was having such a hard time that we were having to cancel constantly, and when we actually did go he was so dang tired he'd just fall asleep in the middle of the session.  Thankfully he's got a lot more energy now and we have some specific things we'd like to work on, so it's time to add it back in.  All the paperwork is now filled out for that, and I'll drop it by the hospital when we're finished with the developmental clinic appointment.  They are at two separate hospitals, of course.

Oh, and the triage nurse for Connor's nephrologist called to talk to me about scheduling the next blood and urine tests for the little guy's creatinine levels.  She's at hospital number three, but we're trying to stack the blood test with Connor's next seizure level check to reduce the number of times he has to be poked, so the test will probably be at hospital number four.

 I am extremely lucky that I can be a stay-at-home-mom, because I have no idea how the heck I'd manage otherwise.  I'd have to assign the cats to making these phone calls, and then instead of Connor having appointments we'd just end up with large mail-order deliveries of canned tuna. 

Finally there was Connor's IEP reevaluation paperwork, which I need to get turned back in so that we can schedule an appointment to talk about next year.  Connor will be changing schools and starting first grade, the thought of which makes me want to put my fingers in my ears and go LA LA LA LA LA because he can't possibly be that big.  He won't be the only kid transitioning of course, so we need to get it turned in so that they have plenty of time to schedule everyone without having to cram them all in at the end of the year.  Connor has a few different options as far as schools, so we'll be looking things over carefully to figure out which program will be the best fit for him. 

This school year is just flying by!

~Jess

In Which Connor Gets A Chair

We had another busy day today!

Connor and I drove out to Olympic Pharmacy in Gig Harbor to pick up his corner chair, which arrived today.  Specifically, this corner chair.  We picked it over the others we looked at because it's simple, came with a tray and also because it didn't have any cloth pieces on it, so it's super easy to wipe down.  I think it's going to work out really well for him-- especially when he's using his iPad.  Once I get the H-harness adjusted correctly (he's not wearing it in the picture) I also think it will be good at preventing him from leaning over and exacerbating his scoliosis.  We'll see how that goes!

We also had a minor adjustment made to Connor's wheelchair; the back of the chair wasn't locking properly in place.  Luckily it turned out that the only problem was that the headrest was a little too low and not allowing the mechanism to fully lock.  So they just adjusted the headrest up a bit, and the problem was solved.  I love easy fixes like that.

After we were finished at the pharmacy we hopped back in the car and drove across the street, where we ate a late lunch in the cheapest restaurant available in the somewhat upscale shopping area.  I think we must have hit the restaurant on Active Elderly Women Lunch Date day, because they were everywhere.  Connor is an AEW magnet.  By the time we'd left the restaurant, we'd had no less than three pairs of women approach our table simply to tell me how adorable Connor was.  Connor gave them a halfhearted wave while they cooed over him and went back to watching the wind blow the patio umbrellas around outside. 

I swear it's like living with a celebrity. 

Anyway, it was a gorgeous day outside so we ended up walking around for a while, and then stopping by a plant nursery on the way home to pick up another shrub or two for the front yard and some seeds for the planned vegetable garden.  I have quite a bit of planting to take care of now, so I'd better get moving!

~Jess

In Which We Drop Off Some Things For Ellen And Have A Busy Day

We had a pretty busy day today!

Connor had a great day at school, and we stayed a little late afterwards so his physical therapist could try out some kinesio tape along the little guy's spine.  We've got a little while before his back brace will be made, so she wants to see if she can get him to use his back muscles a bit more in the meantime.  We'll be keeping a close eye on him to make sure he doesn't have a reaction to the adhesive from the tape.  So far so good.

After that we stopped in at the house so Connor could have some quiet time and I could make some phone calls and take care of some chores.   Then I loaded up the car with the donations for Ellen's orphanage I've collected over the past year and with her latest care package, which was Valentine's day themed.  It may end up arriving sooner than her last care package, which we sent off a couple of weeks ago, because it will be delivered in person.  Our adoption agency leaves next week for Thailand, and they'll be visiting Ellen on one of the first days they are there! 

Hopefully the visit will go well and we'll have a better idea of what the status is of her file when they get back.  Our dossier will have been in Thailand a year in March, so we probably still have another year or longer before we can expect to travel.  It's likely that they are still compiling Ellen's file and completing her background check-- basically an exhaustive amount of research making absolutely sure that the potential international adoption is legal, ethical and the best available option for her, and that there's no possibility of her being cared for by someone in her birth family or being adopted in Thailand. 

In the meantime I'm slowly continuing to learn Thai-- I've got a pretty good handle on the alphabet now, though I'm sure my handwriting is probably atrocious.  I haven't plucked up the courage yet to write anything in Thai on Ellen's letters other than her name on the envelope because I still don't know enough Thai to do more than copy phrases out of books, and I'm afraid I'll screw up, think I'm writing something like "We love to cook Thai food for dinner" and actually end up writing something like "We love to cook Thai children for dinner."  There's nothing like promoting cannibalism to make a good impression on your future kid. 

So we'll continue to rely on our agency's more than competent translator and I'll stick to just practicing for now. 

I can say a few short phrases in Thai now too, but I don't know how useful they'll be in communicating with Ellen.  There are only so many situations in which a phrase like "the boys are reading" is going to be relevant, and while I can also discuss the current reading status of a man, men, woman, women, boy, girl and girls this doesn't extend my conversational skills by much.  Hopefully by the time Ellen comes home I'll know a bit more! 

The agency will be taking a video camera with them and we're hoping that Ellen might be able to demonstrate some of her English, pass on some questions for us or tell us things she'd like us to know, but it will be completely understandable if that doesn't happen.  My guess is that if you pull any fourteen year old girl out of whatever it is she's in the middle of doing and stick her in a room full of strangers who point a video camera at her and ask her personal questions through a translator, she's not exactly going to be a Chatty Cathy.  We've been blessed enough to see some of her amazing personality shining through in pictures over the past year in situations where she's more comfortable, so we'll just be happy to see her on film even if she doesn't say a single word. 

And hopefully when our agency gets back we'll have a better idea of where we are on the timeline.  Keep your fingers crossed for us that things have been moving along!

~Jess

In Which Connor Feels Better And I Get Started In The Garden

Connor had a better day today, which was good.  He seemed pretty tired and spent a good portion of the afternoon dozing on my chest.  Hopefully this means he's in recovery mode and we won't see any more seizures for a while.

Since Jer was home today and could hang out with Connor indoors, I donned a poncho and braved the rain to get some gardening done today.  I trimmed back the dead foilage in the ramp and herb gardens and planted twenty lily of the valley bulbs, three trillium and two heuchara over in the ramp garden.  The compost in our bin has aged beautifully over the winter and so I think I'm ready to put in a small vegetable garden near the fence next to the herb garden.  It's not too early to prepare the bed and to put the peas, spinach and red onions in the ground. 

I thought I'd lost a lot of plants with the crazy snow and ice storm we had, but on close inspection today I saw a surprising number of new shoots just starting up from plants I figured were dead for good.  We'll just have to see what all made it through the winter and my gardening style of benign neglect!

Unfortunately the ice storm did do a number on the stain on our deck, so we'll be redoing that once we're back into the warm weather.  It's not peeling, thankfully, so we shouldn't have to remove the old stain.  We'll just use a deck cleaner to make sure we've cleaned all the moss off (moss grows on everything here) and then use the same color we did before.  I'd hoped to get two years out of the stain, but with the kind of wet weather we have here that's probably expecting a little much.

I don't think we'll be tackling any huge projects out back this summer though; we'll probably hold off on doing our patio for a while and focus on filling out the existing flower beds.  Also we've got my craft room to put together first!  My pincushion went missing yesterday, and when I went looking for it I discovered Loki carrying it around the house in his mouth.  I swear it's a miracle he hasn't offed himself yet. 

Crazy cat.

~Jess

In Which Connor Has More Seizures And I Take A Break

A short blog tonight because I'm over at Hopeful Parents today.

Connor had six seizures today, and one of them was the kind where he jerks around a lot.  His seizures for the most part don't upset him anymore, but that kind understandably still scares the bejeezus out of him.  It's got to be terrifying when your body is doing something that you don't want it to do and you can't make it stop-- especially since he can only take a breath between jerks.  After that one his left side was paralyzed for a while.  Luckily he went to sleep quickly and by the time he woke up he could move it again.  I'll be putting a call into Connor's neurologist on Tuesday when the holiday is over.

I ended up going out and taking a little bit of time for myself this afternoon; Jer watched Connor and I headed off to the bookstore and also to find some sort of rooibos tea, which Jeremy has developed a taste for.  I found some flavored with vanilla beans that he tried out tonight and likes quite a bit. 

I returned home feeling quite a bit less burned out, though I still need some date time with Jeremy soon! 

~Jess

In Which We Go To The Museum And Connor Takes In A Show

After lunch today Jer and I loaded Connor in the car and drove up to the Pacific Science Museum to enjoy a quality family field trip.  We thought about going to the Seattle Aquarium, but they were releasing a Pacific Giant Octopus there today and we figured the place would be beyond packed.

The museum was pretty packed too, but there were still plenty of fun things for Connor to enjoy.  While he didn't want to touch anything in the tide pool he did seem pretty interested in watching the creatures inside.  They had a giant Rubrik's cube set up in the middle of one room that definitely piqued his interest. 

There was a long line for the butterfly house, but we couldn't pass it up because it's consistently been one of Connor's favorite places in the museum.  This trip was no different-- the little guy had a great time watching all of the brightly colored butterflies flit around the room.  A couple of times one landed on his shoulder, and he held still and didn't try and brush it off. 

He didn't seem quite as enamored with the anamatronic dinosaurs this time around.  The room was pretty crowded and quite noisy, so that might have been part of it.  Also we hit them fairly late in the day when he was starting to get tired.  He was holding up really well though, so we decided to take a gamble and try out one of the few things we hadn't done at the museum:  the IMAX theater.

And we were going whole hog.  We were going to try it out in 3D.

Now we don't normally take Connor to movies in the theater.  There are a couple of reasons for this.  The first is that they are usually loud-- really, really loud.  Loud noises kind of freak Connor out.  There's also the fact that expecting a five year old with major developmental delays and sensory issues to sit through two hours of film without making any noise is kind of unrealistic. 

But we figured the IMAX might work out if we sat in the very back, where the sound and screen aren't quite so overwhelming.  The movie we were seeing was one of those educational films aimed at kids they make especially for museums, and it was only forty minutes long.  It was called Sea Rex 3D, and was about prehistoric ocean life, which we figured might be something Connor would enjoy.  He loves the Dinosaur Planet documentary we have on DVD, and this sounded like it might be done in a similar way.  Plus the theater would be packed with little kids, so hopefully if he made some noise it wouldn't be a big deal.

So we decided to give it a shot, even though we weren't so sure that the 3D thing would go over very well-- especially the whole "keep the glasses on for forty minutes" thing.  Connor is not a huge fan of glasses.  And to complicate matters, Connor had a small seizure in the ticket line, and when we got to our seats (they seated us and the two other families with wheelchair users first, which was nice) he promptly fell asleep on my chest. 

He perked up once the lights dimmed though, and I stuck the glasses on his face.  He promptly began attempting to pull and shake them off.  That lasted until the first screen came into focus, the music swelled, and a dinosaur's head popped out of the screen and opened its jaws wide.

Connor got really still for a second.  Then he laughed.

He spent the next forty minutes spellbound.  Every once in a while he'd remember the glasses were on and try to shove them off with a hand, but he very quickly got distracted again by the movie.  Other than a few little cooing noises, he was completely silent.  The movie was cheesy, but it didn't really matter-- we're pretty sure he had a fantastic time.  This is the first movie he's ever sat through from beginning to end in the theater.

I'm so glad that we took the chance and decided to try the movie out; we thought we'd probably need to leave in the first fifteen minutes and instead Connor had a great experience.  I absolutely love it when he surprises me like this; it's a fantastic indication of just how far he's come in the last few years and how I need to be careful to never underestimate him. 

I'm so proud of my little guy!

~Jess

In Which Connor Gets Some Pictures Taken Of His Insides And Wins An Admirer

Jer, Connor and I all slept in this morning, which was lovely and hasn't happened in a while.  The little guy stayed up pretty late last night and didn't have school today, so we figured it wouldn't hurt to let him get a couple extra hours of shuteye in the morning.  And I didn't mind either.  At all.

Connor had a kidney ultrasound done this afternoon, and we should find out the results of that some time in the next week.  The appointment was at Tacoma General, which I believe might have had the dubious honor of being the last major hospital in a forty-five minute radius of our house that we had yet to visit.  The appointment was pretty quick and we were out in less than an hour.

Then it was off to the bookstore, where Connor picked out a reward book.  Jer and I were both starving by this point, so we walked to a little Japanese restaurant a couple of doors down in the strip mall to eat a late lunch.  I'd gotten take out there a couple of times, but we'd never eaten there as a family before.

After she seated us and we requested two cups of tea, our waitress asked us what we would like her to bring Connor.  I'd ordered soup and planned to share a few bites with the little guy, but unless it's something like chocolate pudding or whipped cream he only takes a couple of bites so we usually don't get him a separate bowl or anything.  "Oh, he's good," Jer said, and pointed to Connor's g-tube pump.  "He's already eating."  She looked at the pump for a long second.  Then she hurried off. 

She returned a few minutes later with our food and a long red ribbon.  Then she proceeded to kneel down in front of Connor's wheelchair and fold the ribbon into a rose, which she finished off with a piece of tape and presented to Connor with a smile.  When she saw that wouldn't engage his attention, she hurried off to the back room again and returned with a blue balloon.  She blew it up and twisted it into a dog for the little guy.  She asked us first if it was okay for him to touch the balloon, and didn't seem disappointed or discouraged when he didn't respond to her gentle banter.  

When she saw us signing to Connor, she made sure he could see her and then tried out a few signs of her own-- apparently she'd learned a few from a regular customer.  In between serving other customers, she'd stop by our table periodically and do her very best to entertain the little guy.  She wasn't condescending, she didn't invade his personal space, and she didn't make any pitying remarks. 

Towards the end of the meal she presented him with two tiny, beautifully folded blue and pink origami cranes.  When we were ready to leave she knelt down in front of him again and carefully signed "See you later."  She brought three pieces of candy with our bill.  


We left her a 30% tip.  And I think I'll be discovering a new and intense craving for large amounts of Japanese food in the upcoming weeks. 

~Jess

In Which We Have Bees

I have a box of bees in my refrigerator right now.

Well, that's not entirely accurate.  I actually have two boxes of bees in my fridge right now.

While Connor was in school today I drove down to Portland Avenue Nursery, spurred on by my ongoing I Need To Plant Things Now craze.  They had a bunch of dwarf conifers on sale for 50% off, and I have a whole huge section of front yard to plant where we had all that ivy yanked out last summer.  I made a start on it last year, but there's a lot of flower bed to cover.  Connor and Jeremy both have a four-day weekend because of President's Day, and even though it's raining I intend to get as much outside work done as I possibly can.

But back to the bees.

So I was inside the little store portion of the nursery where they keep all their bulbs, seeds and statuary, and they had a whole section devoted to mason bees.  Mason bees, for those of you not familiar with them, are native, solitary, non-aggressive bees that don't produce honey but are major workhorses for pollination-- far more efficient than honey bees.  They require practically no maintenance-- you just harvest the cocoons once a year in mid-summer and store them until early the next spring to keep them healthy and pest free. 

Of course, they don't produce tasty sweetener for my tea either, so there's that.  I would keep honey bees in a second if I had the time and if I thought my neighbors would approve the idea, neither of which is going to happen any time soon.  Maybe someday!

Anyway, I've been wanting to get a mason bee house for ages, but until now I haven't had the opportunity.  We rented our living space for our first four years in the Pacific Northwest, and when we moved in there weren't any flowers for the bees to pollinate, as our yard consisted entirely of wildly overgrown shrubs and knee-high grass.  But I've put in quite a few spring blooming plants now, so I decided that we're ready to hang our own little bee house. 

So I bought the little house, and the tubes for the bees to nest in, and a couple of tiny cardboard boxes of western orchard mason bee cocoons, which will be stored in my fridge until I have their home all set up and am ready to set them out to hatch.

Hooray for bees!

~Jess

In Which I Celebrate Half Price Chocolate Day And Connor Takes A Stand

I cannot confirm or deny reports that I may have eaten my weight in clearance section chocolate covered cherries today.  Given the fact that one box weighs half a pound, that would be about 330 boxes, or 5280 chocolate covered cherries. 

I admit to nothing.

Anyway, other than a late-night chocolate buying spree followed by possibly eating myself into a sugar coma things went relatively well today.  Connor didn't have any seizures, which was pretty fantastic.  He was sort of tired and mopey today-- probably because I pushed him really hard on his standing.  I decided to see just how long he could go in his stander before he started getting fussy and protesting, and we made it an hour and forty-five minutes!  His endurance has really gone up.  He might be a little sore tomorrow, though. 

I got a phone call today letting me know that Connor's modified tricycle and his corner chair have both been ordered.  It will take about two weeks for them to get here, so I've got until then to build Connor's leg muscles so he can get himself moving forward on his bike!  I need to get him a new helmet because he's outgrown his old one.  He loved his old tricycle so much, and I'm hoping that the new one will be just as motivating for him.  It's really hard to find activities that motivate Connor to really work-- the kid is just so darn laid back and easygoing that if he tries once or twice on most things and it doesn't work out, he just gives up. 

We'll just have to see how things go!

~Jess

In Which It's Valentine's Day

EDIT: Just realized that I wrote this post and somehow managed to not publish it.  Sorry about that!  It's back-dated now to the appropriate day.

I opened up my laptop this morning after Connor was at school to find a lovely Valentine's Day card hidden in between the keys and the screen.  Apparently there's a package in the mail that should be coming soon, too.  Jer is so sweet to me!

We're kind of low-key on Valentine's Day around here, because it's merely the prelude to one of the best holidays of the year: Half-Price Chocolate Day.  I got Jer a card too and made him a special dinner with one of our favorite desserts-- tiramisu.  Tiramisu is something we used to make all the time in the first few years of our marriage (once we got out of the Living On Ramen And Dented Clearance Cans Of Vegetables stage, which lasted a while) and it's great because it's a dessert that involves both of us.  Jer has to make the espresso because I refuse to learn how to use his espresso machine, and then I make everything else.  I love working in the kitchen with him. 

Connor came home with a whole bunch of valentines from his classmates and he seemed to be in a pretty good mood.  He had a couple of small seizures after he got home and spent a good portion of the afternoon napping while I played Hidden Objects games on his iPad.  I was going to upload more pictures onto his assistive speech program, but I got sidetracked.  Connor is starting to show an interest in his iPad again now that he'll actually touch stuff again.  We went through a period this fall and winter where he pretty much didn't want to do anything.  Now he's started playing with the keyboard and bongos again, and I have high hopes that maybe we can start easing him back into making choices with his iPad.  We'll see how it goes.

I hope everyone had a lovely Half-Price Chocolate Day Eve! 

~Jess

In Which Connor And I Go To Watson's

The little guy had a couple of seizures this morning at school, but he perked up after his quiet time so I decided it was time to go out.

It's the part of the year where I'm tired of the weather being so gloomy and, except for the heather and primroses, everything being so uniformly green, green, green (we don't do brown here because in the winter time everything is covered in moss) so I badly want to start gardening.  Of course it's too early for the gardening season to have really started up here, but that doesn't stop me from planning.  I knew I needed to see a little more color soon or I was going to go nuts, so I loaded Connor up and headed off to Watson's. 

Watson's is this gigantic glass and steel greenhouse palace set off in the farmland surrounding my town, and it's basically a nursery and home decor store and tea shop all rolled into one.  Getting there is a pleasant drive down Pioneer past all the little houses from the early 1900s-- including the dilapidated-but-still-gorgeous Victorian with all the gingerbread that sports a ten foot tall statue of an anatomically correct heart on a stake in the front yard.  Keep on going and you'll pass the place that I secretly want to buy even though we're happily settled (and also since it's two story would be completely impractical for us and would be way out of our price range anyway): the colonial-style farmhouse with the long apple-tree lined promenade. Once you get out of town, you hook a right where the road splits, pass the salmon hatchery, the hazelnut farm and the pink house, and right after the yard with the giant dead tree covered in wind socks you'll see what looks like a mile of glass roof winking just down the hill.  That's Watson's.

Watson's is pricey, but it's great to walk around and window shop in.  The only thing it's missing is a book store, and I think if it had one of those I would probably just appropriate one of their larger flower pots and move right in.  This is the time of year they bring out their brightest glazed pots, gazing balls and garden statues, and they look so fantastic after three solid months of nothing but green that I just want to buy them all and take them home, even thought they'd look absolutely ridiculous in my garden, which is not a fuchsia-colored-gazing-ball sort of place.

So Connor and I wandered around for an hour or so, reveling in the color and enjoying ourselves.  I ended up walking out with about twenty lily-of-the-valley bulbs, even though it's not really the season to plant them.  Lily-of-the-valley will live through anything.  Also they spread like gangbusters, so they'll be going in a contained section of my shade garden off the wheelchair ramp. 

I also bought a pack of trillium because I couldn't resist-- I absolutely love them.  I'd never heard of trillium before I moved up here as they didn't grow well in the relatively dry area of Texas I grew up in.  I went for a walk through a marshy area in the spring the first year we were here, stumbled upon a huge clump of them blooming like white stars under a grove of sitka spruce and was utterly enchanted.  It's probably not the right time of year to plant them either, but I don't care. 

I garden by the "whatever survives stays" method, and hey, it's worth a shot.

~Jess

In Which Connor Has A Seizure Day

Connor slept for most of the day today, in between seizures.  He's in the middle of a seizure cycle right now.  The little guy had six before we gave him some Diastat.  So the poor little guy had a pretty rough day.

Hopefully today will be the worst of it and tomorrow he'll be on the downward slope.  We still plan to send him to school, though whether or not he makes it the whole day will probably be largely dependent on what his seizures look like.  He's missed so much school in the past year that we don't keep him home when he's having seizures any more unless it's obvious that he's completely wiped out and isn't going to be able to do anything in the classroom. 

So not much to report today.  So much for a nice relaxing weekend!  Oh well-- we'll shoot for next weekend as our recovery time instead.

~Jess

In Which We Take It Easy And Start Planning A Trip

We had a fairly quiet day here today; all of us were pretty tired and feeling a little under the weather, so for the most part we stuck to the house.  Connor had two seizures, which makes me think he's at the start of another seizure cycle.  He spent quite a bit of time napping on the couch.

Jer and I started talking about what we might want to do for spring break this year; we're thinking about the possibility of taking a family trip up to Canada.  We've been in the Pacific Northwest for over five years now, and the farthest north we've made it for an overnight trip is Whidbey island.  So we're thinking about heading to Victoria or maybe to Vancouver-- some place in BC within a day's drive (or ferry ride) of Seattle that's got a major hospital nearby and plenty of things to do.  Or not do-- it would be great to just let somebody else feed us and clean up after us for a few days.

Plus the last trip we went on together as a family was back in December of 2010.  And I believe the last family vacation we went on that was just a vacation and not a visit to relatives was the aforementioned Whidbey island trip, which we took in 2008 (the picture from my blog heading is from that trip). 

So yeah.  We're way past due.

Jer and I much prefer staying at B&Bs rather than hotels, but as Connor gets older it becomes more difficult to find one that will both accommodate children and is wheelchair accessible.  We've had luck calling places in the past that normally don't accept kids to see if they'll make an exception-- it's not like Connor is going to be running around breaking things.  We prefer B&Bs over hotels for a variety of reasons; most of the time they are absolutely gorgeous, the owners tend to be friendly and know all the little secret spots of their cities, and of course we love to eat good food. 

Okay, most of the draw may be the food.  Yum. 

Anyway, if anyone has any suggestions on places we should go or stay, we'd love to hear them!

~Jess

In Which Connor Has A Long Sit And We Take It Easy

Connor is THRILLED with his new equipment.  Can't you tell?

Connor had an appointment at the hospital today to get his wheelchair adjusted and to pick up his high chair, which has been modified into a long sitter in order to stretch his hamstrings out.  Basically it stretches his legs out straight in front of him.  We're hoping that by focusing on his hamstrings we'll be able to slowly improve his flexibility so that eventually he'll be able to stand completely straight.  Right now his legs are too tight for him to stand completely upright.  I took some pictures, but my camera cable is in Connor's room right now and I don't want to go in and disturb him.  So I'll try and put them up tomorrow when I get the chance so you can see the interesting contraption we've got for him now.  (EDIT: Picture added so you can see his new torture device in all its glory!)

He did an amazing job in his chair; he spent well over an hour in it today!  So he got a good stretch and he might be a little sore tomorrow.  We'll take it easy on him if it seems like he's a bit stiff. 

The little guy had one seizure today but it was a fairly mild one.  I think that between school, the seizure and all of the stretching he was pretty worn out by the end of the day.  Hopefully that means he'll get some good sleep tonight; he's been staying up entirely too late for my tastes recently. 

I think we're going to try and make it a quiet, relaxing sort of weekend.  We might go to the zoo if the weather cooperates, but otherwise we'll probably just take things slow. 

This will be the first weekend in a while where Connor hasn't had some sort of crazy ailment going, so we'd like to savor the break time! 

~Jess

In Which Connor Is A Question Mark

So today Connor had his appointment with the orthopedic surgeon to talk about the little guy's scoliosis and his hips.  Jer was able to meet us at the hospital, which was great!  It's always nice to have Daddy Backup at doctor's appointments.

Anyway, so first we went and got a whole bunch of x-rays done of Connor's spine and pelvis.  They put them straight into the computer so the doctor was able to look at them right away.  It took about forty-five minutes to get the x-rays done on the opposite side of the hospital, but when we got back to the orthopedic clinic they were able to take us straight back to a room and five minutes later we were seeing the doctor.  So that was pretty nice.

Connor's spine is curved and rotated forward just below his neck, like a giant question mark.  In the past year, Connor's scoliosis has progressed from a 33 degree to a 40 degree curve.  That's not good.  However, he's still fairly flexible, which is good.  The doctor put in a referral for a thoracic-lumbar-sacral orthosis brace-- or a TLSO brace for short-- that the little guy will wear any time he's awake.  This is to try and keep Connor's curve progressing as slowly as possible.  The brace won't correct the curve that's already there, though. 

Because Connor's scoliosis is related to his neuromuscular issues, it's pretty much a given that he'll need surgery at some point.  His scoliosis is very likely to continue to progress, and once the curve reaches 50 degrees or more they'll need to do something about it.  Any more than that and it can start to cause spinal nerve problems and also crowd his heart and lungs, which could cause some really serious issues.  We want to hold off on surgery as long as we can though, because we want him to be as close to finished growing as possible before any kind of spinal fusion is done.  The magical age we'd like to get him to before hitting that 50 degree curve is ten years old.  Hopefully a brace, along with positional seating, will help us get there. 

If we can't make it to age ten before requiring surgical intervention, what they'll probably do is place a "growing rod system" along either side of Connor's spine.  Basically they'd attach the rods to the top and bottom of his spine (or possibly his ribs, depending on the system used) to help straighten it out.  His spine would not be fused, so it could continue growing.  He would need to have surgery to adjust the rods every six months until he reached his full growth and they could do a spinal fusion. 

So yeah, spinal surgery every six months.  Eek.  We'd like to avoid if at all possible.

His hips actually look about the same, which is good.  Connor has an issue where his femurs meet his hips at the wrong angle, so the bone is partially out of the hip socket.  Right now it's not causing him any pain though, so they don't need to do anything about it.  Hopefully that will continue to be the case!

Anyway, we'll get the TLSO brace made as quickly as we can, and we'll go back to the orthopedic doc in about six months to see what Connor's spine looks like then.  Hopefully we'll have slowed things down a bit!

~Jess

In Which We Have A Long Day And Connor Does Some Standing

Today was a pretty long day-- lots of playing catch up, having depressing phone conversations with various doctors, and running errands I've put off in the past few weeks. 

Connor will be back in school tomorrow (for the first time this week) and I am really, really looking forward to it.  I am going to go out and have some tea, and get a new book, and maybe get a massage or something. 

Actually it doesn't really matter what the heck I do, as long as I get to do it alone. 

Of course he still has a doctor's appointment tomorrow-- this time with the orthopedic doc to check out his scoliosis-- but at least it's in the afternoon so he doesn't have to miss anything.  He's missed way, way too much school lately. 

As an aside, I just accidentally inhaled my tea and then spit a big mouthful of it across my keyboard.  I don't think that's terribly good for my lungs or my computer.  It's also not good for my legs, as I startled the cat laying across them and she dug her claws in.  That was perhaps not the most graceful thing I've ever done in my entire life.

Anyway, back to things we did today.  I cut out all the pieces for the little monster guy that's going on Connor's poncho while the kid was doing his stander time today and watching classic Sesame Street episodes.  He's only allowed to watch TV in his stander, when he's in the hospital or as a very special treat.  It's actually worked-- he doesn't complain about his stander anymore and he's getting to the point where he can watch an entire hour or more before he starts getting tired. 

As he gets stronger, we're graduating to longer television programs.  I think in another few weeks if he has a good seizure-free stretch we might actually make it through an entire movie!  I didn't actually get to the sewing part because I was too busy watching Sesame Street too.  It was one of the episodes from the early 70's, which I always enjoy because Elmo almost never appears in them.  Connor was terrified of Elmo as a baby, and I understand why-- that little red monster kind of creeps me out too. 

Oh well.

~Jess

In Which Connor Feels Better And I Play Catch Up



Cricket helped keep Connor's toes warm, because she's thoughtful like that.

 I'm thankful to say that not only was Connor's fever was gone when he woke up this morning, but he had no seizures today!  Apparently yesterday was a complete fluke.  I guess he had a little bit of a bug or something.

After his follow-up appointment this morning, where he was given a clean bill of health and told to come back in two weeks for a final check-up, Connor spent most of the day in recovery mode.  He spent about eight hours napping on the couch while I tried to get caught up on various e-mails and projects I've been neglecting since he started this whole crazy tailspin back in November. 

In between e-mails I also finished up a couple of small sewing projects and started a new one, which is a bit of an experiment.

Connor overheats really easily, so I don't like to put conventional jackets on him because I have to undo his shoulder straps to get them off.  His grandparents gave him a poncho a few years ago that works really well except for three things. 

The first is that it's made to be worn by somebody who is standing, not sitting in a wheelchair with shoulder straps on, so it bunches up in the back.  The second is that it has his name on it in big letters across the front.  It's cute and it's great for school, but I get paranoid about the kid having his name on full display in public areas.  The third is that because he's grown quite a bit, the poncho now comes to about his shins when he's sitting, and he gets cold toes! 



Rawr.



So I got some fleece and figured I'd try to make a couple more ponchos for the little guy.  I started on one today in a lovely teal color.  I've made it to Connor's measurements, and much longer in the front than in the back, so hopefully it will work well for him while he's sitting in his chair.  I got as far as cutting it out and hemming the neck hole, but I had to stop there because the little guy was asleep and I didn't want to do the bottom hem without trying it on him first. 

I'm thinking I'm going to make it two sided and line the other side with gray fleece to make it warmer (and so I can flip it over when he drools all over it).  I whipped up a quick design for a little orange monster for the teal side that should be super quick and easy to make out of felt.  I'm not sure what I'll stick on the gray side yet-- maybe a dinosaur. 

Or a robot.  It's hard to go wrong with robots.

~Jess

In Which Connor Creates More Drama And I Get Some Relax Time

So the good news is that Connor does not have an infection on his arm.  It actually looked better this morning once the top layer of skin all peeled off.  The doctor thinks he probably had a reaction to the tape they used on his arm when they put the IV in there on Tuesday.  So apparently now my kid is also allergic to medical tape or something.  Oh well; at least he doesn't have cellulitis.

The bad news is that he had a seizure at the doctor's office, and by the time we visited the pharmacy at the Target across the street and headed home he'd had two more.  His temperature was barely elevated at the doctor's office-- around 99 degrees-- but when I took his temp when we got home he read 101.2, which is when I pulled out the Tylenol.

He had five seizures total by the end of the day.  Once the Tylenol kicked in his temperature went back down to just above normal, so at least it's doing its job well.  But to make sure this isn't an issue stemming from the outpatient procedure Connor had, we have to go back in to see that doctor tomorrow morning.  Whee! 

I did feel quite a bit better today despite all of the seizure-and-fever-fun, because Jer, knowing how stressed I've been, gave up his gym time and kicked me out of the house when he got home.  I tootled around a craft store, had a cup of chai and sat with a book for a while, and played around in a home decor store stealing ideas for throw pillows that I could do with felt.  It was lovely to get the chance to just relax and play around for a while; I badly needed the break. 

Jer is awesome like that.

~Jess

In Which Connor Is Heading Back To The Doctor Again

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

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

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

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

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

~Jess  

In Which Connor Tries For A Doctor Appointment Record And I Have Some Crafting Fun

So Connor has a patch of skin on the inside of his arm around an IV site that looks like it's infected.  Despite putting antibacterial ointment on the patch several days in a row now, the nasty red patch is continuing to spread.  So unless something drastically changes tomorrow, it looks like we're headed back to the doctor yet again on Monday.  If we end up going that will make the seventh visit to the doctor's office in the past month.  Glorious. 

The little guy spent some quality time with his daddy today; I had some friends over for a crafting session and so the guys holed up in the back bedroom to hide while we ladies chatted and crafted away.  The crafting and social time was a ton of fun; it was so neat to see what everybody else was making!  Also everybody brought yummy food, which was like a bonus to the already awesome social-time-and-crafting activities.  I might possibly have done more eating than crafting.  Oh well. 

I did manage to make a complete idiot out of myself by not recognizing one of the guests and introducing her by the wrong name.  No, really-- I'm totally not making this up.  Who does that at their own party?  She was very gracious about it, which was really nice of her because I felt like a complete jerk. 

But other than my awkward hosting things went well, and I'm hoping I'll get the chance to do it again soon!  Except minus the making-a-complete-idiot-out-of-myself part.

~Jess

In Which I Watch Some Thai TV

I've been on a big lakorn kick for a while as my choice of entertainment when the little guy keeps me up.  There's a ton of them with English subtitles on YouTube, so there's no lack of material to keep me busy.

Lakorns are Thai soap operas.  They're like Mexican soap operas in that they have a definite beginning and ending rather than going on and on and on like most American soap operas, and they are always love stories.  They generally have a fairy-tale ending where all the loose ends are tied up, the good guy and girl get together, and the bad girl and optional bad guy (there's always a bad girl, but not always a bad guy) get their just rewards.  A lot of them are incredibly cheesy, but they're good clean fun for the most part.  No, really-- Thai television is way more censored than what we watch over here, and Thai culture as a whole frowns on PDA.  Most of the sexual tension in the lakorns is built up with risque secret-hand-holding-in-public and the occasional peck on the cheek.  Even in the more serious ones, pretty much everything is implied rather than shown on screen.  To tell you the truth, it's pretty refreshing, even if the acting is way over the top and the plots are ridiculous. 

I'd like to say that I watch them to learn more about Thai culture, but that would kind of be like trying to learn about American culture from Days of our Lives.  While I do pick up the occasional tidbit here and there, mostly I watch them for the entertainment value.  Currently I'm halfway through Phoo Yai Lee Gab Nang Ma (Headman Lee and Mrs. Ma), which is a good place to start if you're interested in romantic comedy done Thai style.  Also it has perhaps the most ridiculous opening credits song ever.  Nothing like rap interspersed with banana peel and cow sounds to get things started off right!

I'm hoping that maybe watching an evening lakorn episode or two will be something that Ellen and I can do together, maybe as a special mother-daughter activity after Connor goes to bed.  She's apparently a fan of the historical lakorns (lakorn boran), so I'm trying not to watch any of those so I can save them for when she's here!

~Jess

In Which Connor Sees The Kidney Doctor

Connor had an appointment with a nephrologist today; his primary care manager was concerned about the level of protein they found when they tested the little guy for a UTI back in December.  Since Connor only has one kidney and higher than normal levels of protein in urine can be a signal of reduced kidney function, she wanted to make sure he was checked out by a specialist. 

The nephrologist was extremely nice and had a great bedside manner; Connor was pretty nervous about the new doctor's office so she didn't do any poking or prodding at all.  She wasn't very worried about the protein levels from the test, but she was a little concerned that Connor's creatinine level was higher than she liked.  High creatinine levels can be another marker of kidney dysfunction.  She didn't think it was terribly urgent, but we're going to get an ultrasound done some time over the next couple of weeks, and then in about a month we'll get another round of urine and blood tests, and we'll see what comes of that.  If Connor continues to have increased levels of creatinine, we may end up needing to switch seizure medications, as the Zonegran can sometimes cause kidney issues.  Of course, the Zonegran is also the medication that stopped Connor's apneic seizures, so we're sort of hoping it won't come to that.

After we were done at the doctor's office I started trying to catch up on the errands that I haven't gotten done in the past week, like picking up Valentine's Day cards for Connor (holographic dinosaurs!) and Ellen (holographic kittens and puppies!), stopping by the library and stocking up on groceries.  We only got through the first errand though before the little guy completely lost it and started screaming in the middle of the store.  So we went home, where he promptly crashed.  Guess he's not quite up for errands yet.

He'll be back to school tomorrow for the first time in a week.  Hopefully he'll have a bit more energy then!

~Jess

In Which I Am So So Tired

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

~Jess