In Which Connor Is Heading Back To The Doctor Again

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

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

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

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

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

~Jess  

In Which I Have An Interesting Encounter And Write A Really Short Blog Post Because I Am Tired

Yesterday I'd just gotten back to the house from my (very short) walk with Connor when there was a knock on the door.  I opened it to discover one of the neighbors I hadn't met yet waiting on the front porch with her dog-- she'd obviously been out for a walk too. 

"Hi!" she chirped, giving me a friendly grin.  "Is your mom home?"

I gave her a sort of stunned look.

Obviously thinking that I was a shy or perhaps sort of surly teenager, she tried again.  "Your mom-- is she home?" 

"Um," I replied in a very articulate fashion.  I was still kind of in shock.  Her grin faltered a little bit.

"Wait a second," she said, giving me a closer look.  "Are you mom?"

The contents of the ensuing conversation are unimportant for the purposes of this blog, but trust me when I say that the rest of it did not get any less awkward from that point on. 

I'd just dyed my hair the night before, which might have had something to do with it.  I'd dyed it because I now have large streaks of gray running through my formerly mouse-brown tresses.  I also have crow's feet.  Two years of frequent adrenaline rushes, little sleep and tons of stress have not done good things to my body, and by now I'm used to being mistaken for being a lot older than I really am.  So I was a little taken aback to be confused for someone closer to my future daughter's age (twelve) than my actual age (pushing thirty).

I'll have to remember which brand of dye-in-a-box I used.  This stuff is magic.   

~Jess

In Which Connor Continues To Improve, And I Obsess About Roller Derby Some More

This morning I woke up and spent a few minutes before Connor woke up slogging through the vast morass that my e-mail has become; for those of you still patiently waiting for replies, I swear I'll get there.  Someday. 

Sorry-- I'm working on it!

After that I gave Connor a bath to try and soften up some of the hard, crusty, peeling dried skin all over his poor ear.  The skin keeps pulling away and cracking every time he touches or rubs the ear, making the area underneath bleed which is not a particularly good thing.  I was happy to see that his chest looks better today, though.

Connor seemed to feel much better today as well; he was able to sit up and wasn't nearly as congested, though he did still cough quite a bit.  He had a lot more energy, and only took two naps instead of sleeping the day away.  It's good to see him feeling better; he had me really worried there for a while but I'm sure he's over the worst of it now.  Hopefully he'll be back to his old self in a few more days.

In the afternoon Joanna came over and Jeremy and I took off for our respective workouts; we weren't able to find a skating rink open at the time we needed (since it's Columbus day) so he went to the gym while I did my skating outdoors at the park.  Jeremy really wants to try out some roller blades though, so I'm sure we'll hit the rink another time.  I spent about two hours skating up and down the hills of the bike trail, and then did some drills, falls, and stops.  Then Jer and I met back up at the gym and spent some time in the hot tub together before heading back home. 

Jer's being very indulgent of my newly developed roller derby addiction, which is extremely nice of him.

I think a major part of the appeal of roller derby for me is that when I'm on skates I am, for once, not automatically identified as a mom.  I mean, being a mom is what I do all day, every day.  That's how people view me, and that's the most likely subject that they'll bring up to start a discussion in the grocery store.  The vast majority of my daily activities revolve around Connor, and that's perfectly fine.  But I can't tell you how refreshing it is to have someone come up to me and ask me about something other than parenting a child with special needs. 

And believe me; roller derby gear makes people come up and ask you questions.  People under the age of twenty-five have absolutely no idea what you are doing and come up to ask you what the heck roller derby is, and people over the age of thirty-five remember roller derby in its televised, staged, brawling heyday and get psyched about it happening here (only now it has rules, people-- no elbowing in the face or clotheslining allowed).  Children under the age of five have no idea what roller skates are because they've only ever seen rollerblades, so they get really excited about them.  It's very cute.  But regardless of the age of the person I'm having a conversation with, when I'm rolling around on my trusty skates (and yes I did deck them out with skull-and-crossbones laces and-- to protect the toes-- duct tape with flames all over it) somehow my role as a mom doesn't seem to come up in discussion unless I choose to bring it up.  To tell you the truth, that's really refreshing.

While there may be a few moms out there who are totally, completely satisfied with being defined by motherhood and never need any life outside their children, I think the majority of us need some activity like roller derby to keep us sane.  Okay, so most moms probably don't go for extreme, full-contact sports as their saving grace.  Most moms probably take up knitting or Bunco or something.  Let me tell you, though-- derby is a highly effective way to get rid of some of that stress built up from all those doctor's appointments and dealings with the insurance company.  We're probably going to learn blocking and body checks this week at bootcamp, and I am majorly psyched about it. 

I'm wondering if I can get the other girls to yell things like "Your referral is denied because your child's enteral nutrition is not essential for survival!" right before I hit them.  I bet it would be extremely cathartic.

~Jess

In Which I Am Just A Wee Bit Paranoid

This morning I was at one of my usual haunts (a little coffee shop in downtown Puyallup) and an ambulance went by outside.  I turned around and watched it rush by.

My first thought, immediately, was "Oh no.  That might be for Connor."

Never mind that I was across town and the hospital was between me and the school, so unless the ambulance took a really roundabout route there was no reason for it to be driving by me on its way to him.  Never mind that his school immediately calls me whenever Connor has a seizure, so I usually get the call as the ambulance is being deployed.  For a split second I was absolutely convinced that the ambulance was headed to Connor.

This knee-jerk reaction to sirens is not limited to times when I'm not in the same place as Connor.  If I'm driving somewhere with Connor's wheelchair strapped down in back and we hear those sirens, I immediately glance in the rearview mirror to make sure he's okay.  It's ridiculous; I'm pretty sure the car gnomes are not going to dial 911 without me hearing them, and our Mobile Defense Van, Rowbert, has not yet achieved the level of sentience necessary to contact the authorities by himself.  Nevertheless, I still have to glance back in the mirror and make sure that he's still happily watching the scenery go by.

I'm not sure exactly how to break myself of this habit, because unfortunately we hear those sirens in the distance and know they are for Connor often enough to reinforce it pretty heavily.  I suppose as far as neuroses go it's a relatively harmless one, which I should be thankful for, but let me tell you that the adrenaline rush on top of the caffeinated beverage I was drinking this morning probably didn't do good things for my blood pressure.  Does anybody else do this sort of thing, or is it just me? 

Jess

In Which A Lot Of Things Happen

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

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

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

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

He loved it.

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

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

Connor was having a seizure.

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

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

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

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

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

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

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

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

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

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

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

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

~Jess

In Which I Have Married The Bionic Man

The little guy had a really rough night last night-- probably due once again to the eczema, which is now in full-blown breakout mode. He even has it on his eyelids. It looks extremely uncomfortable. My guess is that this breakout is due to stress, and possibly also because he's around other kids now, some of whom may be from households with parents that smoke, use heavily scented detergent, etc. The kid is extremely sensitive to that sort of thing, though it's gotten better. When he was really tiny I couldn't even use scented soap or shampoo without him breaking out, which was sad because I think unscented soap and shampoo are terribly boring. Except for the oatmeal honey kind of soap, which smells pretty good.

But I digress. We'll take it super easy tomorrow with the little guy (he has Wednesdays off from school) and hopefully he'll start clearing up.

This morning Jer and I headed up to the hospital to have his casts, stitches, and staples removed. His feet and legs look really good, considering. His left foot does have several wires sticking out of the skin (they'll be pulled out in a month or so), which is a little disconcerting. The skin graft site is also pretty crazy-- because they perforate the skin in order to make it stretch farther, it ends up with this really interesting grid pattern over the whole graft site, which it will apparently keep for a long time. Between the wires and the grid his left leg has a very sci-fi look too it-- though with the staples out it's not quite as industrial as it was before. At any rate, it's pretty awesome, or at least as awesome as anything involving your husband getting half-blown-up could possibly be.

So now he has some air casts, which are kind of like really expensive (or actually after looking it up and comparing the prices, really cheap) Air Jordans in that they have a system of pockets inside you can inflate to cushion the foot. They also have heavy-duty treads on the bottom, which is kind of misleading since Jer still won't be doing any weight bearing for at least the next three months. Jer can remove the casts to do his range-of-motion exercises and for bathing, though he's still not allowed to get the skin graft wet so the word "bathing" is rather a misnomer, as what he'll actually be doing is "washragging."

It ended up being a really, really long day (it took over two hours just to remove the staples and stitches) and we spent all told about seven hours at the hospital, so we'll be glad of the break tomorrow, too!

~Jess

Cleaning For The Cleaners

I spent about eight hours cleaning today, which is about eight hours more than I wanted to spend cleaning today, but that's how it goes sometimes. A man from our housing office was coming out to take a look at the state of the house and how many repairs would need to be done before they could rent it out to someone else, and I had this idea that the chest-high piles of random things in the middle of our living room, piled dishes in the sink, carpet that hadn't been vacuumed since I could last see it (three weeks ago, maybe) and mounds of dirty laundry were going to get us some sort of bad score. So I did a Pre-Move Cleaning. This is not to be confused with the Pre-Post-Move Cleaning, which will be when I clean the house from top to bottom after we move all our stuff out in preparation for the professional cleaners we will hire to actually clean everything. I have inherited the "clean for the maid" gene directly from my mother, and it's impossible to shut off.

I was picturing the housing representative as some sort of icy woman with bushy eyebrows and hair slicked back in a bun who would be there three hours. She would open all of the cabinets and look under the sink, glare at everything, say "Hmmm" in a disapproving tone, and scribble things on a clipboard in red pen. Periodically she would raise her eyebrows in a look of disbelieving horror whenever she found some particularly noxious transgression.

The person who showed up was a very friendly elderly gentleman who had very reasonable eyebrows. Not only did he not use a red pen, but didn't even say "Hmmm" once. It's lucky that he was a cat person, as Loki made instant friends with him and followed him around the house demanding to be scratched behind the ears. No doubt it was Loki's influence that got us our good report. He told me to weed the garden and replace the cat-chewed blinds, but otherwise things looked fine. So long story short I spent eight hours cleaning and then the guy was in my house for maybe five minutes. It was rather anti-climatic after all that fuss. Oh well.

We'll be moving all of the big stuff over this weekend, and then we should have another week or so to get everything ready for the final walkthrough. Right now I'm trying to figure out exactly how to talk to Connor about Saturday, as I want it to be as easy for him as possible. He doesn't adapt to change very easily, and after the notorious Wedding Freak Out I'm a little nervous about the whole thing. We've kept everything around and above his crib exactly the same to make sure that he's not freaked out beforehand, but I'm sure that he'll be a little nervous sleeping in a strange house the first few nights. Luckily he seems pretty acclimated to the apartment-- goodness knows he's been there enough. Does anyone have any tips for making the move with as little stress as possible for the boy?

~Jess

Coming Out of Hibernation

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

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

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

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

~Jess