Friday, July 31, 2009

On The Mend!

Connor is back down in his own bed for the first time in almost a week. It's currently a very livable 75 degrees in the apartment, and it's supposed to get down to 57 degrees outside tonight. Over the next few days we're supposed to start slowly returning to our usual temperatures for this time of year. It's even supposed to rain.

I never thought I'd be grateful for a forecast of rain in this area-- but I'm actually looking forward to it.

I spent a good portion of the day taking it easy, which was wonderful, and I also got my massage, which was even better! While my back still hurts, it doesn't hurt quite as much as it did, and the pain isn't radiating out into my leg and across my back anymore. Tomorrow and the next day I'm going to spend doing some light work around the house-- nothing strenuous. Hopefully by the time Monday rolls around I'll be feeling much better. Monday is going to be really, really busy for us. I plan to spend tonight doing a little oil painting, working on a poem or two, and going to bed early.

Speaking of which-- Connor was out almost as soon as his head hit the mattress. I think he's happy to be back in his own bed!

~Jess

In Which I Have Been Culled From The Herd

This is all Loki's fault.

Possibly it was revenge for leaving the two cats on their own on the hottest day in Puyallup's history. I mean, I left them with both fans running and plenty of ice water, but it was still pretty hot. We spent the day before yesterday over at a friend's house (a friend with air conditioning, which that particular day was the best kind!) and ended up spending the night there too. Yesterday was much, much cooler-- the morning was actually kind of pleasant and we knew it was supposed to get down to a blissful 65 degrees at night, so we came back to the apartment to open it up and let some cool air in, and to pick up our supplies for Connor's reading time.

Now, I would like to preface this by saying that I am a stickler for lifting techniques. Due to extensive weight lifting training and jobs that involved a lot of heavy lifting, I'm always very careful about how I move and carry Connor-- especially as he gets older and harder to haul around. So when I came into the apartment yesterday morning and set Connor down on the living room floor, it was using proper lifting techniques. I had let go of the little guy and was squatting there on the activity mats he's been sleeping on, twisting to the left to find something out of his diaper bag, when Loki bounded up behind me and shoved his nose up my dress, scaring the crap out of me. I startled upright and as I did so, felt something pop in my lower back and a sensation not unlike someone stabbing me with an ice pick.

I have never thrown out my back before. I'm not particularly enjoying the experience.

After I went over and threw up in the kitchen sink, I dosed myself up with Motrin and Tylenol and grabbed an ice pack. Then we packed up and went to reading time. I mean, I know that ideally I should have stayed flat on my back. However, flat on my back in an apartment that, while cooler than the day before, was still hovering somewhere around 90 degrees, did not sound like a wonderful idea. Connor doesn't do very well at those temperatures, and I usually end up having to give him multiple cold baths. The idea of lifting him in and out of the bathtub made me nauseous just thinking about it. I figured I'd just try to take it as easy as I could, and since I had respite care for a good portion of the next day, I could spend that time in bed.

I feel like the little mermaid. Not the syrupy Disney version-- the original one, minus the whole being-a-mermaid-and-not-talking-and-turning-into-sea-foam-bit. The original little mermaid felt like she had daggers stabbing her in the legs every time she took a step. I'm experiencing a very similar sensation, only it's in my back and whenever I push down the clutch in my car. Okay, so maybe it's not anything like the little mermaid, but at any rate it really hurts and I'm cursing the fact that we don't drive an automatic.

I'm going to have our respite care worker (who happens to be a medical massage therapist-- how awesome is that?) give me a massage while Connor's down for a nap today. In the meantime I'm going to try and stay as immobile as possible. Poor Connor spent the majority of yesterday once it cooled down lying on the bed with me, totally bored. These things apparently take three to six weeks to heal. Joy of joys. I feel like an old woman, and I'm moving really slow, which has me nervous. I'm keeping my eye on that cat, as he's now succeeded in wounding me.

I'm pretty sure he's just toying with me now, as he could probably finish me off pretty easily. Whenever the Motrin wears off, I kind of wish he would.

~Jess

Tuesday, July 28, 2009

In Which I Spend An Entire Day Doing Almost Exactly Nothing

I do believe I spent more time at the mall today than I ever have before in my entire life. Especially without buying anything.

Now, the mall is not air conditioned. However, all of the major department stores within it are, and they constantly pump their cool air out into the mall and that, combined with them turning down the lights, made it pretty comfortable, though I hate to think of the energy bills those stores are running up. I don't normally really care for the mall, and Connor hates it-- too many noises, too many bright colors, too many people-- but hey, it was better than sitting in front of a box fan for eight hours.

The weather is helping somebody out though, I'm happy to say. It's 9:30 at night and I can hear the ice-cream man outside again; this is perhaps his eighteenth round of the day. He keeps having to go back and pick up more ice cream. Every time I see him drive by he's got a bigger and bigger grin on his face, and he's trailed by a long line of very sticky children. I think the Pied Piper pulled off his coupe by waiting for a day like this one and then playing his pipes exactly like an ice cream truck. Makes perfect sense to me-- I'm just not sure how he prevented the adults from following too. I've never seen so many guys in business suits buying ice cream before in my entire life.

While we're going to stick it out tonight, tomorrow and Thursday we will most likely be in a hotel room, as it's supposed to get to somewhere between 98 and 101 degrees on those days. So if I don't update tomorrow, you know why. I can't be in this room during the day-- I checked the temperature in my office this morning around eleven, and the south-facing window, total lack of air circulation, halogen lights and multiple electronic devices had driven it up to 115 degrees in here. My brain does not work at those temperatures. Basically I just sit there cursing and sweating on the keyboard, which is not very productive. I figure this is why people don't bring lap tops into saunas. Other than the whole steam ruining the electronics thing, I mean.

It's a much cooler 70 degrees in the living room. Call me paranoid, but I've taken the precaution of moving all of Connor's oxygen tanks into there underneath our fan. Not having experimented with his O2 tanks, I have no idea what temperature they have to get to before they explode. We will not be finding out. I definitely won't be storing them in the office.

Well, I will be retiring to the living room now, where I will eat my fourth tangerine popsicle in the last two hours (those Real Fruit ones are tasty!) and then sack out on the futon.

~Jess

Monday, July 27, 2009

HOT.

It is hot here.

Now, I originally hail from Texas, and I know that in Texas 94 degrees, which is what it was supposed to get to to today, is not that big of a deal. Well, I'm here to tell all you Texans who are laughing at me right now for complaining-- try doing it without air conditioning. Oh, and with big windows and a huge glass sliding door, all facing south.

Connor had to sleep in the living room last night, underneath our one and only ceiling fan in the apartment. He's bedded down in there again tonight, as it's the only decently cool room in the house, thanks to the addition of a big box fan that our saint of a physical therapist loaned to us. All of the local stores are sold out of fans. If you'd been a fly on the wall in my living room today, you would have seen me, Connor and both cats sprawled out on the floor two feet from the box fan almost the entire day. I'm having to write this in five minute intervals because the computer room, with its constantly running electronics and halogen overhead light, is so hot that I can't stay in here longer than about that time period without overheating. It's probably well over 100 degrees in the office. I know it's time for a break when I start sticking to my chair and my fingers slide off the keyboard. Gross.

It's supposed to get to 97 degrees tomorrow. The average high normally here at this time of year is 76 degrees. Some stations are predicting 101 degrees on Wednesday.

Now, I can survive this sort of heat without too much trouble-- I am from Texas, after all, and so I know what to do in this type of environment: drink lots of water, take cold baths, spend eight hours shopping in air-conditioned grocery stores, etc. The problem is that I have a child with temperature regulatory issues, and while I'm confident that I'll be okay in the heat, I worry about him. Thankfully we've got the g-tube so I'm not worried about him dehydrating, but it's obvious that even the heat going to and from the car affects him pretty significantly. His reflux is really, really acting up, his eczema is rearing its ugly head again, and he has pretty much zero energy right now. Depending on how tomorrow goes, Connor and I may end up having to go rent a hotel room just for the air conditioning, just stopping by the house to refill the poor kitties water bowl.

To add insult to injury, it's 75 degrees and raining in Texas where my parents live now. I think they were sent the weather meant for us by mistake.

Please return it; I want it back.


~Jess

Sunday, July 26, 2009

Respite Care!

Got a phone call from Jer a couple of days ago-- he's doing as well as can be expected under the circumstances. They're keeping pretty busy. I miss him.

Anyway, today Connor and I had respite care again, which was very nice. I spent a good portion of it writing, though not in this blog. Every once in a while I get the urge to write poetry, and I usually come up with a couple of good lines and then get totally bogged down with all the crap that has to go between those good lines. This is where I'm stuck at the moment. The problem with poetry is that unlike writing, say, a novel, you have to think about every single word. They're all important, and if you change an "it" to a "her" in, say, a 150 page novel, it's probably not going to have that much of an impact on the piece as a whole, but if you make the switch in a poem, it can change the whole meaning. And don't even get me started on punctuation. At any rate, I spent a couple of hours at a local coffee shop scribbling all over my notebook until I got fed up with it and went to dinner.

I spent some time shopping, saw my friend and her new little one again, stopped by the bookstore (of course) and then went home. That was about the extent of my evening.

Plans for this week include putting up more bookshelves in the library to hold all of the books I keep buying on respite care outings, driving across the bridge to the big pharmacy to get more Pediasure, as we're now going through four and a half cans a day as opposed to two, getting passports for Connor and I (more on that later) and getting presents in the mail for all of the people who had birthdays that I've been neglecting. Busy busy!

In the meantime, I'm going to go back to working on that stupid poem.

~Jess

Saturday, July 25, 2009

In Which Folding Clothes Is The Funniest Thing To Happen Ever

Today was laundry day.

I hate laundry day. This is because I really don't care for chores where I do everything and then I know that two days later I will have exactly the same thing to do with nothing to show for it. While I was growing my mom would ask me questions like "why hadn't I made my bed?" and I would reply "because I'm just going to have to unmake it at the end of the day" (And promptly get in trouble. I do not recommend this as an answer to give your mother). I make my bed now, but I still don't see the point in it. Laundry is also one of those "endless" chores-- one of the worst as far as I'm concerned. And since I had Connor laundry day has now expanded to two or three times a week. I do it, of course, because while I hate doing laundry I'm sure I'd hate having no clean clothes to wear more, but I still don't like it.

Connor, on the other hand, believes that laundry is hilarious.

It's hard to be gloomy about doing that particular chore any more, because I have a child who believes that moving, waving cloth-- especially sheets and towels-- is perhaps the funniest thing he has ever seen in his entire life. I have no idea why, and he certainly hasn't explained it to me, but any time he sees me get out the laundry basket he starts giggling in anticipation. I actually have to make sure not to wash all of my big sheets in one load, or to do them after he's asleep, or otherwise he'll laugh so hard watching me fold them that he'll make himself throw up! Usually all over the clean laundry, I might add. He has pretty good aim.

He also likes to "help" with the folding. Basically if I throw a blanket or burp cloth over his head, he'll pull it off and drop it on the floor. Here's a video of how he reacts to this sort of thing:


video

Now if only he'd have this reaction to say, doing dishes and vacuuming, and things would be a lot more fun around here!

The cats, by the way, do not help with chores. The cats spend their time sitting at our screen door contemplating killing everything outside that moves. They glare at everyone who walks by. Our upstairs neighbor is convinced that Loki is planning on eating him.

Crazy cats.

Jess

Friday, July 24, 2009

Farm Day!

Connor knows exactly what day Friday is. Friday is Farm Day. Let me explain.

Every Friday morning, after Connor has had his breakfast and his medicine, I grab my insulated bags and my straw basket and we head down to the Olympia Farmer's market. Once there, we pick up a flat of blueberries (yes, I go through a flat a week. I really, really like blueberries, okay?) our meat, cheese, and mushrooms, and occasionally a jar of honey. We eat lunch at the market, and maybe do a little window shopping downtown. Then we drive to the Food Coop, where we pick up our milk, eggs, and any dry goods we need. Finally we drive to the farm, where we pick up our weekly share of produce from our CSA program.

This week the CSA included beets, carrots, cauliflower (it's orange!) garlic, spinach, summer squash, an onion, and a whole bunch of tiny delectable red plums. I drove down to my friends house-- we're splitting a share, as that's a whole lot of produce for me to go through by my lonesome-- and divided up the goods. It's funny, but we now have conversations that go something like this:

Me: I took the spinach last week. You take it this week.
A: But I've still got a huge bunch from the week before! You take it.
Me: Well, this is fresher. You take it.
A: I don't need it. Let's just divide it.
Me: Fine.

Our cups runneth over. I've never eaten so much spinach in my life. This sounds like a quality problem, I know, but I still find myself wanting to invite people over solely so that I can make them a huge salad and use up more of the spinach at one time, leaving me free to get back to eating my plums. What can I say? They're really good plums.

One very good thing that's come out of all of this produce is that Connor is getting a lot of fresh fruits and veggies-- I can blend just about anything up in the food processor, throw in a little whole yogurt to smooth out the texture and a little butter for additional calories, and he'll wolf it down. He especially loves peas, though we're kind of out of the season for them now. I'm going to try him on beets this week, though I'll be stripping him down naked, getting a bath tub ready, and putting down a painter's drop cloth over our carpet. Beets stain everything, including, I'm sure, Connor's white-blond hair. We'll see whether or not he has an interesting pink-streaked dye job by the end of the week.

It's also nice that we've gotten to know a lot of the vendors down at the market, and they all talk to Connor, telling him about what they do and where the food comes from. With his issues regarding adults other than Jer and I, the more friendly non-threatening people he comes in contact with, the better.

I sometimes wonder if his trust issues have anything to do with the fact that for the first year or so of his life, most of the adults other than Jer and me or our immediate families who were interacting with Connor were involved in the medical profession in some way or another, and so at any given moment he never knew if a person who had been smiling and cooing over him a second ago would be jabbing a needle into him the next. I'd be wary of adults too, if that was my personal experience with them. I hope that by exposing him to lots of friendly folks outside the doctor's office that he'll slowly learn to open up more.

In the meantime, I get a lot of tasty things out of it. Can't complain.


~Jess

Thursday, July 23, 2009

Bears!

This morning's Toddler Treasures reading time at the library was all about bears. Connor loves bears, thanks to his father who is forever talking about getting one for general household mauling purposes, and so the little guy was a very enthusiastic participant at today's story reading. One of the books, The Little Mouse, The Red Ripe Strawberry And The Big Hungry Bear, by Don and Audrey Wood, is one of my personal favorites, and Connor is very familiar with it since we have it at home. Normally at story time he very quickly gets bored and starts staring at everything but the books and me interpreting, but this time he was pretty focused, and when the librarian asked if anyone knew what to do about the big hungry bear, Connor gave a big enthusiastic nod yes! It's exciting to see that he's starting to be a little more comfortable with the toddler time, and that he's following my fumbling signing enough to be able to answer questions. And I'm happy to say that the trip up there was totally, completely uneventful. There will be NO repeats of last week, thank you very much.

The other book was Jamberry, by Bruce Degan. I love that book, except for the fact that I have to fingerspell Razzamatazzberry. Oh well.

Since it was kind of gloomy and rainy outside this afternoon, we promptly threw on our swimsuits and went down to the pool. Since the Puyallup area has next to no thunderstorms, I'm still a little unsure as to why everyone always leaves the pool when it looks like rain, as it's not like you aren't going to be wet anyway. If it was sunny the day before, as it was yesterday, the water will still be warm. At any rate, gloomy weather assures that Connor and I will have the pool all to ourselves, which is a good thing. Connor loves the water so long as he's in total control of what it's doing. Other kids splashing around so the water jumps and gets his face or hair wet unexpectedly is a big no-no in his book. The pool is also kind of an echo chamber-- even outdoors-- so if there are too many other people there than he gets overwhelmed pretty quickly. He can't have his hearing aids on at the pool and I can't really sign and hold him at the same time, so it's probably pretty hard for him to understand what I'm saying. At any rate, we spent about half an hour in the pool before he started getting cold and we dried off and went home. I'm loving having a pool so close to the house; I don't think we'd go very often otherwise, and it really is very good for Connor.


~Jess

Wednesday, July 22, 2009

What's Up, Doc?

Today was the day for our big doctor's appointment. I got a call yesterday afternoon that they'd bumped it up by an hour and that we now had yet another Primary Care Manager (PCM), now that I'd changed all the contact information at our other hospitals to reflect the former new PCM's name. Oh well. Anyway, the good news was that this doctor took one look at our file and scheduled us for an hour-long appointment at the end of her appointment time, so that we could take as long as we needed to go over the approximately eight billion items of paperwork I needed her to fill out.

The appointment went well; she seemed pretty on top of things and I think she'll be a good doctor for Connor. We spent almost two hours in the room with her-- it was quite the visit.
Among other things, we renewed Connor's EFMP paperwork. EFMP, or the Exceptional Family Member Program for those of you not familiar with it, is the military's program that identifies family members with special needs and assures that not only do they get the services and accommodations they require, but that they can't be sent to a post that doesn't have these services available. While Jer (obviously) can still deploy, go on an unaccompanied tour, or be sent to a post for training that lacks the services we need, he can't be issued a permanent change of station (PCS: where we're expected to go with him) that doesn't have the doctors and therapies Connor needs. Now, since Connor needs A LOT of doctors and therapies (last time I counted we had around fourteen) there are very, very few posts we can go to. What this means is that it's likely that unlike most army families, which seem to move around every three years or so, we'll probably be in the Pacific Northwest for quite some time. Given the fact that instead of taking things off Connor's EFMP paperwork we actually added them, I don't think this is going to change any time soon.

After Connor's appointment and a quick visit with a friend who just had her little girl, we headed back to the house and spent a solid forty-five minutes playing with Connor's new tricycle! He had a great time; we must have gone around the apartment about twenty times. I would have stopped sooner as it was obvious he was getting tired, but he was asking for more so adamantly that I humored him and we kept going until he was literally drooping on the bike. He still had a huge grin on his face, though! We didn't do as much standing work today as a result (there he is in his new stander eating dinner-- doesn't he look great?) because his little legs got such a workout. Maybe I need someone to strap me to a bike and push me around. I haven't exactly been motivated to exercise in the last week or so.
What do you say? Anyone?
~Jess

Tuesday, July 21, 2009

New Explorations!

Connor and I did some very important things today! Important things require Pith Helmets of Dignity. Now if he would only wear a monocle and grow a mustache . . .

Anyway, one of the most important things that happened today was that we dropped by Good Sam and picked up Connor's beautifully modified tricycle and a big surprise . . . a stander! Apparently another family with a child who had outgrown his stander donated it to the occupational therapy area of Good Samaritan, and it just so happened that this was the exact stander in the exact size that we had been considering for Connor. It came with the tray and everything! We tried it out and it's a perfect fit for the little guy. Not only that, but he was very comfortable in it and actually tolerated it without protest for an unbelievable twenty minutes! While we'll be waiting weeks for his other ordered equipment, we took the stander home with us today, and it's now sitting bright and shiny in the middle of our living room, just waiting for new adventures.

Connor's new stander is a Snug Seat Toucan, by the way-- for those interested in that kind of thing. It's very well made, fully and easily adjustable (each part adjusts independently for a perfect fit), provides prone or upright support, and is even on wheels so it's easy to move around the room. It's head and shoulders above the standers we tried out earlier. Perfect!

When we're finished with the stander (hopefully someday Connor will graduate to a walker) we'll give it back to Good Samaritan. In the meantime to work towards that goal Connor will be doing everything in it. And I mean everything. Mealtime? Standing time! Sensory time? Standing time! Potty time? Okay, maybe not. But you get the picture.

Look out, Connor! New horizons ahead!


~Jess






Monday, July 20, 2009

Bye Bye Bottle!

Well, folks, as of today Connor is officially off the bottle.

Yes, I have a child who is three years old and still uses a bottle. He doesn't chew, and he has trouble swallowing, so a bottle was the only way we could get enough nutrition down him before the g-tube placement to keep him from starving. There he is at around four months old, eating for his Daddy. It's apparently a very serious business.

The crazy thing is that I never intended to have him on a bottle in the first place. The original plan, way back in the naive early stages of my pregnancy, was for me to breastfeed for the first year and then switch him directly to a cup. Even after we found out (at about week twenty) that Connor would have multiple medical issues, I still thought that I'd be able to breastfeed. After all, it was the natural thing, right? Surely it couldn't be that hard.

Then Connor was born. And for the first month of life, due to intestinal malrotation he didn't take anything by mouth at all. He spent the next month with an NG tube, and after that he needed so many extra calories that my milk alone wasn't going to sustain him. So much for breastfeeding.

I pumped every four hours around the clock. For six months, I did this. I had one of those loud beeping alarms I'd set, and every four hours, when it went off, I'd hook myself up to what I called my "Madonna Bra" (You know the one I'm talking about) and spend the next half an hour watching trashy late-night shows on my parent's television. It got to where I didn't let down to Connor crying-- I let down to that alarm clock, elevators sounding the floors, trucks backing up, fire alarms . . . you get the idea. I never had much of a supply, and our move cross-country when Connor hit six months old killed it entirely; I dropped down to using the machine only at night for the duration of our trip when I discovered to my horror that if I pumped while sitting in the passenger seat no matter how I arranged blankets, sweaters, etc I gave every trucker passing us on the highway a perfect view of the proceedings. I've never been honked at so much in my life. At any rate, by the time we reached the Pacific Northwest and I tried to resume my former schedule it was too late and my supply had dried up.

Now that you know way, way more information than you ever wanted to know about my boobs, back to the present. One of the reasons that we had the g-tube placed was that we wanted to start trying to work Connor down off the bottle and on to a cup, but we needed a safety valve to make sure he was still getting all of the nutrition he needed. There was also the fact that every time he gets sick or stressed, he refuses to eat. Like right now, for example. For the past four days, Connor has completely refused to take any liquid by mouth. I suspect this is yet another reaction to Jer being deployed; he shakes his head no when I offer it to him and says "Daddy," which I assume means that he'll drink again when Daddy gets home. He's staging his own little hunger strike in protest of the current situation. Maybe he's been surreptitiously been reading up on Gandhi when I think he's napping.

He'll take a few bites of pureed food, and maybe a couple of sips from a cup, but he's totally rejecting the bottle. Before we had the g-tube, this kind of behavior usually resulted in me becoming increasingly frantic in trying to get food to pass my son's clamped lips, a trip to the hospital for fluids after a couple of days, and him losing nearly all of the precious weight he'd gained over the few months prior. The g-tube has taken nearly all of the stress and danger out of the situation. He doesn't want the bottle? Fine.

Since we're trying to wean him off of the bottle anyway, there seems little point in trying to get him to drink from it again just so we can slowly transition him to the cup. So Connor's speech therapist and I talked it over today and decided to quit the bottle cold turkey. This means that most of his nutrition will probably be coming through a g-tube while he slowly, slowly learns to drink more than an ounce at one sitting out of a cup, but at least his teeth will be safe from bottle rot. It also means that I should probably talk with our nutritionist about making my own enteral formula, as I really don't care for the stuff I have to put down his tube at night (do you know just how much of that formula is made out of corn? A whole lot, that's how much) so I'd rather not make it his whole diet if I can help it. At any rate, we'll see how things go.

Not really sorry to bid the bottle goodbye, though.


~Jess

Sunday, July 19, 2009

We're Going To The Zoo (How About You?)

Today Connor and I donned our trusty pith helmets and met up with a friend and her foster daughter at the Point Defiance Zoo.

Connor loves the zoo, but he and I have a conflict of interest as far as what we want to see. I love the gorillas, the large cats, the birds of prey, the elephants . . . basically seeing and interacting with all of the animals.

Connor loves the bubbles in the aquarium. Not the fish-- the bubbles. Also the way the surface of the water reflects the light when you're standing underneath it. He could easily watch the changing patterns for hours. He loves the ultraviolet displays, too. And there's a tent set up in the kid's play area where you can feed the goats. He could care less about the goats-- he wants to look at the way the sun shines through the fabric of the tent. About the only animals he's really in love with are dogs and ponies, neither of which currently reside at the zoo. If we're trying to look at anything else, he'll become bored extremely quickly and start yanking his hearing aids out.

Forget animals: he's totally, completely enamored with light in all of its myriad forms and shades. The first thing he does when we wheel into a building is check out the ceiling, and if there's a particularly interesting light fixture up there he'll actually applaud. So I was happy to find a compromise between my fascination with the animals and his obsession with light: the jellyfish tanks.

One of the tanks features glowing jellyfish, circling endlessly in mesmerizing patterns. Swarms of these jellyfish must be the lava lamps of the underwater world. If you watch them for too long, you fall into a sort of trance-like state. And then there were tiny fragile-looking jellies in another tank who were all but invisible until they floated through a beam of light, and then they'd flare up in a bright white spurt of iridescence. They looked like they were outlined in delicate traceries of glowing lace.

Beautiful fascinating creatures combined with light? A perfect combination for me and Connor. After my friend and her daughter left the zoo we went back to the tanks and sat for close to half an hour. I alternated between watching the jellyfish and watching my son's face, alight with its own glow, and left the zoo feeling strangely relaxed. Jellyfish as therapy: who would have thought?

While I couldn't get any good pictures of the glowing jellyfish, due rather ironically to poor lighting conditions, I did get some shots of the other animals. Because you can't go to the zoo without taking approximately 8,000 photos of meerkats. I love meerkats. Also that owl was ridiculously adorable.


~Jess

Saturday, July 18, 2009

Hopeful Parents Post

Just to let you all know, my monthly post for Hopeful Parents is up over here.

~Jess

Thanks!

Thanks so much, folks, for all the concerns and well wishes coming our way in the past couple of days. It's really nice to know that people, many of whom I have never met in person, care deeply about Connor-- makes me feel wonderfully supported. Anyway, thanks again!

I got a phone call from Jer yesterday evening; it was really nice to hear his voice on the phone. This time Connor was awake, so he got to talk to his Daddy. It was really cute; when I held the phone up to the little guy's ear and he heard his Daddy's voice his eyes opened really wide and then he spent the next two minutes laughing into the phone. He was delighted! I'm so glad that he was awake this time, as he obviously loved having Jeremy talk to him, and I'm sure Jer enjoyed hearing his son's happy giggling over the line.

My camera is out of batteries, which is a sad state of affairs. Must go shopping tomorrow so I can post more pictures of my adorable child. I swear about a third of my computer memory is tied up in pixelated images of Connor's face.

Speaking of shopping: I had respite care today from twelve to four, so Anna and I hit the thrift stores in search of a corner bookcase. I need one because once again I am out of space for my books, and as we all know, in my household getting rid of books is Not To Be Done. While we did not find a bookcase, I did come home with a new (new to me, anyway) dress, skirt, shoes, and flower vase. This is the danger of thrift store shopping-- I always find things I didn't know I was looking for until I see them. I have to be careful and not go to often or I'll be in danger of filling my house with ridiculous little knickknacks, like I don't know, macrame plant holders and ceramic cats or something.

Oh well.

~Jess

Friday, July 17, 2009

Better Day

Connor had a quiet day today, thank goodness. His neurologist is continuing to monitor him, and we'll adjust his meds as need be, so that's a blessing.

I thought I'd talk a little bit more about Connor's seizures, as I realized that I haven't really defined them on here yet (I have been appallingly lax in continuing my Medical Mondays. Shame on me) so here's the nitty gritty.

Connor has a type of seizure called "complex partial seizures with secondary generalized seizures." Let me give you a basic idea of what this means.

Your brain contains millions and millions of tiny cells called neurons. These are in charge of transmitting information and messages from the body to the brain, and also help different parts of the brain talk to one another. In a seizure, these neurons misfire, causing a sort of "storm" in the brain. Depending on where the misfiring is occurring, you can have different outward manifestations of the seizure, such as twitching or jerking, altered consciousness, and repetitive movements, to name a few.

In a simple partial seizure, only a tiny part of the brain misfires. In a general seizure, the whole brain misfires. So in a complex partial seizure with secondary generalized seizures, which are what Connor has, the seizure starts in a tiny part of the brain and then spreads to the rest of the brain.

Connor's seizures are very unusual because they start in a part of the brain it is rare to have seizures in. In fact, it took a very long time to diagnose them as seizures as the symptoms we see with him look almost identical to sudden cardiac arrest, and most of the doctors were convinced the problem had something to do with his heart. His seizures begin very low down in the brainstem, and they affect one of the centers that controls breathing, known as the dorsal respiratory group. When Connor has a seizure he suddenly collapses, turns a ghastly blue-gray color, and stops breathing. He will not breath again until the seizure is over. We have little to no warning that a seizure is about to happen. He also displays none of the typical symptoms for generalized seizures; instead of shaking or jerking, he goes either totally, completely limp or just a tiny bit stiff-- one of the two.

In other words, it looks a whole lot like sudden cardiac arrest. Which, since he's at risk for sudden cardiac arrest due to his LVNS, can be rather nerve wracking. Not that your kid suddenly keeling over and stopping breathing isn't nerve wracking anyway, but you know how it is.

The doctors think that there's a good chance he would start breathing again on his own when the seizure is over. It's not, however, something they suggested we test, so we do mouth-to-mouth resuscitation on him until he starts breathing again. There's never any indication that the seizure is over other than the fact that he does start breathing again, so it's hard to know whether or not he started breathing because it was over or if it had been over for a little while and he started breathing due to the mouth-to-mouth. The biggest danger is that he'll stop breathing long enough that the lack of oxygen will cause brain damage. We carry an emergency medication, called Diastat, with us in order to try and stop a seizure that goes on too long. Thus far we haven't had to use it, and we'd like to keep it that way.

We have an apnea monitor with a loud alarm that we turn on while he's sleeping in case he has one at night or during nap time, and he takes a daily medication called Keppra that works pretty well for him with no visible side effects. While I worry that he'll have a seizure while I'm in the shower, or outside watering the plants, or (yes) driving, so far we've been incredibly lucky. Hopefully we'll stay that way.

~Jess

Thursday, July 16, 2009

Seizure

Well, one of my worst nightmares officially came true this morning.

Connor had a seizure while I was driving.

We were happily on our way to Toddler Treasures reading group at the library about half an hour ago. I was just pulling up to a major intersection, driving in the far left-hand lane, when Connor, who had been laughing and babbling to himself, suddenly became really, really quiet. I looked in the rear view mirror and saw to my horror that his head was lolling on his shoulder, he wasn't breathing, and his whole body was blue. I lay on the horn and pulled across two lanes of traffic into the Fred Meyer parking lot, where I threw on the emergency brake and jumped out of the car.

I got Connor out of his car seat on onto the ground, gave him three breaths, and he came back. I'm thinking the whole thing probably took less than a minute. By the time a couple of other cars pulled up and people ran up, he was already conscious again and, while not happy, was responsive and aware of his surroundings. I told the concerned folks around us that we didn't need the ambulance, as he would be all right now that Connor was breathing again, and then strapped him back in the car and we went home, where I put him to bed and then proceeded to have a small fit of hysterics in the middle of my living room.

I'll be calling the neurologist to let him know that Connor had another seizure and see if he wants to up the little guy's medication. In the meantime, I'll be staying off the highway and any roads without shoulders as much as I can.

Thank God he's okay.

~Jess

Wednesday, July 15, 2009

In Which Much Sadness Occurs

We spent most of today indoors, doing a little play therapy, catching up on some housework, and just taking it easy.

Well, let me clarify. We spent the first half of the day catching up on some housework and doing some of Connor's therapeutic exercises. We spent the second half of the day taking it easy, due to Mommy Guilt over a traumatic experience involving Connor's big therapy ball.

Ah, Mommy Guilt. I know thee well.

We've got one of those huge balls that were so popular for exercise a couple of years ago. We use it for balance and postural activities with Connor at home; by bouncing, rolling, and moving him around on it in various positions we can get him to work different sets of muscles in his torso. Anyway, our ball was running a little low on air, but being lazy and not wanting to dig the pump out of the closet, I figured it would still work just fine for a few more days. I took the ball out into the living room and started maneuvering him around on it.

Now unbeknownst to me, when the ball isn't completely inflated it has a tendency to slide rather than roll around on the carpet. I had Connor face down on the ball doing some tummy time and rocking back and forth when the ball suddenly lurched out from under him. Since I had my hands on him on either side to prevent him from falling off but I wasn't supporting his weight, he slipped through my fingers and plummeted towards the ground.

There's a reflex kids are supposed to develop when they're around eight or nine months old. It's called the "parachute reflex," and basically it's a protective reflex that makes you put your arms out in front of you to catch yourself when you are falling. Here's a video of it if you want to see it. Connor doesn't have this reflex; he still does what babies do before they develop this reflex and brings his arms back towards his body. As a result, he landed flat as a pancake on the carpet, face first.

Luckily Connor has a squishy little nose and we were on carpet, so nothing was broken. He was horribly startled though, and cried like it hurt quite a bit. That was the end of our home therapy session for the day, and consumed by a bad case of Mommy Guilt, I did nothing more strenuous with him after that than watching multiple back-to-back episodes of Fraggle Rock.

This is why I worry about him learning to walk. Not that it wouldn't be wonderful and all, but think about how many times kids fall down while they are learning to walk. Now think about those kids falling down and doing face plants every time. Makes me wince just thinking about it.

Guess we'll cross that bridge when we come to it.


~Jess

Tuesday, July 14, 2009

Oreos of Terror?

As many of you wonderful readers pointed out, I should probably give this new doctor a chance before being so hard on him.

Thanks, guys, for putting me back on track when I get whiny! I tend to get a little overwrought about this sort of stuff. With any luck he'll be a great doctor. I was just really hoping for somebody who was going to be sticking around for a while, since the residents head off to other locales after three years. You all are right, though; I shouldn't knock the guy 'till I've met him.

Speaking of being silly-- I realized this morning that I forgot to declare the box of Oreos I included in Jer's last care package on the customs sheet. I now have a completely irrational fear that I will be fined and/or arrested for lying on a customs sheet. Either that or that the package will be blown up by a bomb squad due to the possible inclusion of "Terrorist Oreos." This would be a horrible waste of Oreos.

Today we went to go try out a few demo standers for Connor. I am sad to say that the two we looked at were definite no-gos-- they were pretty shoddily made and didn't really suit his needs. Looks like we'll be ordering all of his other necessary equipment first while we continue to look for a good stander. I'm disappointed, as it will mean a delay on the stander, but I'd rather get a good piece of equipment than settle for something that's going to need a whole lot of modification on the OT's part to make it decent. My theory is that if my insurance company is shelling out 3,000 bucks for a piece of equipment, it should probably not need to be taken completely apart and rebuilt from the frame up in order to work.
Here's some examples of standers, for those of you who aren't familiar with them.

Steve is going to try and get us a couple more demo models of other standers that might be better-- we sat down at a computer and scrounged up some others that seem to be worth a look. I'm really glad that we're able to look at demo models; not every company has them, but it's really really nice to be able to see what the piece of equipment looks like in three dimensions and to see how it would work with Connor.

~Jess

Monday, July 13, 2009

In Which Logic Has Nothing To Do With It

Busy, busy day today.

Early this morning Connor and I drove up to Renton for Connor's Family Conversations summer play group. They let all of the "graduated" kids from their Deaf and HoH play group come back during the summer, and they hold the sessions in various parks and playgrounds all over Pierce and King county here in Washington state. It was rather cold and blustery today, but we still enjoyed seeing Connor's old therapists and meeting some of the cute new little guys and gals in their birth-to-three program.

We left a little early and stuffed some food in our faces before rushing off to physical therapy, where we learned that Connor has officially outgrown his back brace, and since he's still a little curvy, we probably need to be seen by an orthopedic doctor. We'll add that to our list of specialists, and go get the referral when we're seen by Connor's new Primary Care Manager (PCM) later this month.

About that, by the way-- you'll recall I was not very pleased with the state of things on that front when I left for Dallas. I finally received word this week about Connor's new PCM... and he's a resident. And not even a resident that's been there a while: a fresh-out-of-school-this-is-my-first-time-practicing resident. I'm so thrilled. Because, obviously when you've got a kid with three four-inch thick medical files and mulitple life-threatening conditions who's hospitalized anywhere from ten to fifteen times a year and is seen by ten (or fourteen, or whatever it's up to now) specialists, the person you want in charge of keeping track of all of it is someone with the least amount of experience possible. No doubt this will make things run really, really smoothly. Riight.

I'm not upset about this or anything, can you tell?

We have an appointment scheduled with our shiny new doc on July 22nd, and during this appointment, I will have to:

1) Introduce myself and briefly outline my son's 12-inch thick medical history and 25 or so current conditions, practically all of which are ridiculously rare.
2) Renew all of our EFMP (Exceptional Family Member Program) paperwork, which is due at the end of July if we want to keep our respite care, priority housing, compassionate assignment, etc. The insurance company suggested during our discussion about appointment length that we should have done this back in June but as I reminded them there was that small problem of NOT HAVING A PCM TO FILL OUT THE PAPERWORK. Rar.
3) Fill out all of the paperwork that Connor needs for his health plan so that he can start school.
4) Get a referral for the orthopedic doctor and let the PCM know about all of our current pieces of medical equipment on order (I believe there are eight) in case the insurance company calls him wanting to know if they're necessary.

They originally wouldn't let us have an appointment until August, despite the paperwork due at the end of July. I had to have someone from the EFMP office actually go down and bully them into giving us an appointment before the end of the month. Here's the real kicker-- despite my and the helpful EFMP person's exasperated insistence that we needed a longer appointment, they still only scheduled us for thirty minutes.

I'm brushing up on my Valley Girl accent, as I figure that only by talking at approximately the speed of sound will I be able to cover all of this information with the doctor during the time allotted.

I love my insurance company. I especially love the fact that at this point they've shelled out somewhere around 1,300,000 dollars in medical expenses for my child, (and continue to pay around two thousand a week in therapy, medical supplies, and medication alone) and we've had no co-pays. You can't really beat that. Every once in a while, though, I really wish I could give the whole system a good kick in the pants.

Sigh.


~Jess

Sunday, July 12, 2009

Miss Manners, Please Visit Our Playground

Heard from Jer yesterday-- he's doing well, though I don't think they're really enjoying the heat. Miss him.

Connor and I went for a nice long walk in the park today. I had to force myself up off the couch-- it was kind of gloomy and rainy this morning so I didn't really feel like doing much of anything, but I know from prior experience that I'll feel much better if I actually get up and do something rather than staying inside, so as soon as it stopped raining out we went. We tootled around the park for a while and then stopped at the playground to swing, an activity Connor always enjoys.

There's only one swing that I can put Connor in by his lonesome at the playground-- the handicapped-accessible one-- and today it was occupied by a typically developing eight or nine-year old girl, who was being pushed by her friend. She asked me what I was doing standing there, and I told her that my little guy was waiting for his turn to swing.

"Well, we're going to be on it for a long time," she said, "because it's her turn next and then it's my turn again. So he might want to go do something else."
"Well, maybe Connor could have a turn after your friend," I said. "That's fair."
"No, because she's already had one turn, so it's my turn after her. And then she might want it again. Probably she will." Her friend behind her nodded in agreement.
"Well, this is the only swing that Connor can use by himself," I replied, gritting my teeth. "Why don't you switch to one of the other swings when you are finished with this turn and then everyone can swing?"
"Because this is the best swing, that's why!" she answered triumphantly. "And it's my brother's birthday!"

I wasn't quite sure what to say to that one, or rather, all of the things that I could think of to say involved words that were wildly inappropriate, but luckily I didn't have to answer because just then an announcement was made that they were cutting her brother's cake, so she and her friend dashed off, the "best swing" forgotten. Muttering under my breath, I strapped Connor in and away he went. He was giggling and squealing with glee and signing for more, and soon I was laughing and signing back to him, the rude girls forgotten. A little boy, also about eight or nine and probably from the same party, sat down in the swing next to us.

"Does he understand that?" he said, watching my hands.
"Oh, yes," I replied happily. "He has trouble hearing and speaking, so he talks and listens with his hands."
"I know that, stupid!" he said, and then rolled his eyes at me before jumping off the swing and running off towards the slides, leaving me standing with my mouth open.

Wow. Was it something in the water?


~Jess


Saturday, July 11, 2009

Loki Versus The Rug of Doom

Our cat Loki has a new arch nemesis.

Since I've cut him off from access to his former foe (our printer, aka The Antichrist) he's had to seek out other sinister evils to defend the household from. He didn't have to look very far to find his new worst enemy.

Folks, meet The Rug of Doom.

I thought when I bought this rug (innocent fool that I was) that I was buying it for the purpose of collecting dirt that would otherwise end up on our carpet. Little did I know that I was actually buying a highly intelligent and sophisticated form of monster, who was mimicking a stylish rug in order to infiltrate Loki's inner sanctum. Late at night while I'm asleep, this demonic being comes to life and slinks its way across the living room, where it eats all of Loki's food. This is the only explanation I can come up with as to why Loki's food bowl, which is filled to the brim every night, is licked clean by morning. Loki is the very picture of a pitiful starving feline when I get up, so surely he's not eating it.

As Loki's increasingly frantic attempts to alert me to the fact that my so-called rug is in fact a catfood-stealing villain have failed, he is now taking a direct approach and spends a good portion of time biting, chewing on, kicking, clawing, and otherwise attempting to incapacitate this Rug of Doom. Sometimes when he gets particularly wound up he grabs it by one corner and drags it halfway across the room. Glad to see he's putting it in its place, though I must say that it's now more of a dirt distribution tool than a dirt catcher.

Loki also spends a lot of time watching this rug. Every once in a while he'll bound up to me and race back towards the foul creature, as if to say: "See! Didn't you see it sticking out it's little tag tongue at me? I can't believe you just missed it again!" I have to hand it to him; what he lacks in brains, he makes up for in persistence. Case in point:
video
Here he is with a laser pointer. He's trying out his most powerful weapon; the Stare of Death. You'll notice he keeps about eight inches away from the green dot at all times, and he believes he must keep complete eye contact with his prey for it to work. Forget claws and teeth; he'll conquer his enemies with his searing mindbeam powers.

Crazy cat.

Friday, July 10, 2009

There And Back Again

Connor's curled up asleep right now around our little dictating tape recorder; through the little speaker I can just hear his Daddy's voice reading chapters of The Hobbit. Jeremy made those tapes for Connor during the last months of my pregnancy. We knew well before Connor was born that he would have some medical issues, and I had to move back to Dallas when I was seven months pregnant to be close to the hospital I would deliver in, as the doctors were concerned that Connor would come early. Jeremy had to stay in College Station where his job was: about three and a half hours away. He would drive up on the weekends to see me, but he wanted to make sure that the baby recognized his voice, so he made these tapes and had me hold them up to my belly each night before bed. He chose to read a book he vividly remembers his own father reading out loud when he was young.

After Connor was born, the little dictating tape recorder took up a permanent position in the corner of our son's incubator. He was probably in incredible amounts of pain the first few weeks due to a kidney swollen hugely out of proportion to his little body and multiple surgeries. Every little noise or touch sent him into a screaming frenzy and caused his oxygen levels to plummet. The only thing that seemed to calm him down when we weren't there was listening to the tapes of his Daddy that I'd played for him each night for the last three months of my pregnancy. The nurses kept them running constantly when visiting hours were over. In the picture I've posted he's about five weeks old, and you can see his faithful tape recorder up in the corner of his bed.

We used the tapes again when Jeremy had to leave for training; Connor was only about three weeks old and wouldn't be reunited with his father for more than brief visits until nearly six months later. Each time I lay him down in his crib for sleep I'd put his tapes on. It got to where I had the first five chapters of The Hobbit just about memorized, I'd heard them so often.

The first few nights after Jer deployed Connor had a really hard time sleeping. Things got especially bad after we returned from Texas; he started waking up and crying three or four times a night. Nothing seemed to help. Finally I remembered those old tapes, pulled one out of the back of his drawer, and popped it in our faithful little dictating tape recorder-- still bearing the label from the hospital where he spent his first five and a half weeks of life. He was asleep within five minutes, his body curled around the tape recorder as if to make sure he caught every word. Now it's firmly ensconced in the place of honor, and he won't go to sleep without it.

I included one of Connor's books in the care package I sent him a couple of days ago, and he left for Afghanistan with a dictating tape recorder and several little tapes tucked into his pack. Hopefully he'll send us back some new stories to listen to, as I've played the others so many times they're starting to get scratchy and I'm worried they won't last through this deployment.

I'm so glad that we have them, though-- they bring Connor (and me) a little bit of comfort, and will help him remember the sound of his Daddy's voice until Jer is back home.


~Jess

Thursday, July 9, 2009

In Which Connor And I Make A Mess of Things

I walked into Connor's room this morning to discover that he'd managed to pull out the connection between his feeding tube attachment and the pump, so while the pump was happily pumping formula all over the bed, he was busy leaking stomach contents onto it too. Then he used the whole mess as finger paint.

This was not really the way I'd planned to start my morning.

Anyway, I cleaned him up, bundled his sheets and pajamas into the washer, and then fed him a huge breakfast, which he was terribly hungry for as there was absolutely nothing in his stomach: its usual contents being all over the laundry. Then we headed off to the Children's Therapy Unit at Good Samaritan Hospital to get measured for a stander and to drop off his tricycle for modification. Hopefully we'll have the trike back next week-- something that I'm really excited about. Connor doesn't get to do many activities that other little kids his age are doing, so riding a tricycle with some of his buddies would be a really big deal. I can't wait!

After we finished up at Good Sam, we drove to the Puyallup Library for Connor's Toddler Treasures reading group. The library hasn't been able to find an interpreter yet, though they're still looking, so in the meantime I'm doing the interpreting for Connor. I'm not remotely qualified to do it-- I've only had a little over a year of sign language, and I have nowhere near the skills, speed, or experience to be an interpreter. If I was asked to do it for anyone other than Connor, I'd decline; watching me would probably be worse than having no interpreter at all. I'd rather leave it to the professionals.

Interpreting is hard.

For one thing, the songs and rhymes we are singing have a lot of words I've had to make up signs for, as there is absolutely no way I'm fingerspelling, for example, "Skittermerinky Dinky Dink." Not happening. There's also the fact that I have to adjust to someone else's speech pattern and rhythm. While it helps that I get a chance to look at the books beforehand, it's not like there's a happy little script I can follow; the kids are asking questions, the librarian is throwing out answers, and none of that is something I can prepare for. I just have to muddle along as fast as I can and hope Connor gets the jist of what's going on.

I'm getting some major practice in learning new vocabulary quickly though, which is probably a plus. I don't see the books until about half an hour before the reading time. This week one of the books was about patterns, and it described many of these patterns in detail. There were about 18 words I didn't know, so I had to memorize the signs really, really fast. Good practice for me, but sheesh.

I'd also like to point out that I'm not big on being the center of attention in a room. When the books and songs are happening, I'm sitting right next to the librarian. And for the most part, the kids aren't watching the librarian, they're watching me. As are all of the parents. This is rather disconcerting, especially when I know I'm screwing up. And believe me; there is a whole lot of screwing up going on.

Connor has a good time though, which is the important thing.


~Jess

Wednesday, July 8, 2009

In Which I Pursue Yet More Creative Endeavors

I'm going to make this fairly short, because I stayed up too late last night looking at random YouTube videos and as a result I'm pretty tired.

Anyway, I devoted a good portion of today to making jewelry, which is yet another on-again, off-again hobby of mine. A friend and I headed down to Shipwreck Beads, which is this huge warehouse full of beads and jewelry making supplies. They claim to have the world's largest selection of beads, and I'd believe it-- we're talking millions of beads here, people. It's overwhelming enough for me, but Connor goes into overdrive in this place. The colors! The shapes! The sparkly things! For a kid with sensory issues, it's either paradise or hell depending on whether or not this is the first errand we've run or one of several, and how napping went that morning. I bought entirely too many beads, and generally enjoyed myself. Connor was luckily in a pretty good mood, so he enjoyed himself too.

After all of the jewelry making fun (it was a productive evening, as you can see from the rather blurry picture) I went to my first Signed Exact English class of the summer. It's a really, really small class this year, so that should be nice since everyone gets to know each other pretty well. We have to pick a song, story, or poem this class to read (or sync) and sign to at the end of the semester. I'm going to have a hard time choosing, as there are so many good songs and books! I'm happy to be back in the class, as I don't have anyone to practice with at home right now with Jer gone. Connor understands the signs, but all of the signs he uses are "home signs," meaning they are modified for his motor skills, so I don't have anyone to practice my receptive language skills on. They get rusty pretty quickly, as I discovered tonight when we had a review. Oh well-- that's what I get for getting behind on my studying!

Maybe if I feel confident enough with whatever book or song I do I'll post a video of it on here for you all to see and giggle over. Maybe. If you promise not to giggle too much.


~Jess


Tuesday, July 7, 2009

Bad News...

Just read the news that our little friend Gage passed away... if you get the chance go visit Mary and Charlie's blog and take a moment to read about this beautiful boy and his family. Gage had an extremely rare genetic disorder called Wolman disease.

Can't believe he's gone.

~Jess

Monday, July 6, 2009

Hair and Boyhood

Connor and I went and got our hair cut today.

I am a great admirer of those brave souls who choose to cut their children's hair themselves. While many women think that it's a big waste of time and money to take their child to the salon for a trim, I am not one of them. This is because I like my son's ears firmly attached to his head. The only way to keep him still without forcibly restraining him is to sign the ABCs over and over again in front of his nose, and attempting to sign with my left hand while using scissors with my right hand sounds like a really, really bad idea to me.

So we went to a stylist.

Connor was really very, very good for her-- he held perfectly still so long as I was signing and singing the ABCs. My eighteen renditions of the song in various rhythms and styles probably clashed a little bit with the pop music emanating from the overhead speakers, but at least my child emerged with his ears intact.

Haircuts always have the effect of making Connor look much, much older-- it's like little pieces of his babyhood are swept away among the clippings on the floor. It makes me a bit sad. I saved a lock of his hair to tie with a ribbon and tuck in this week's care package. Hopefully there's a tiny sliver of youth in there too-- I'm sure my husband could use a bit of innocence where he is now.

I've heard there's not a lot of it to go around over there.


~Jess

Sunday, July 5, 2009

A Whole Day of Nothing

Our wonderful respite care worker, Joanna, watched Connor from 10:00 in the morning until 7:00 at night today. As a result, I've made a discovery. My entire life revolves around Connor's activities, and I no longer have any idea what to do with myself when I have an entire day alone. Seriously. No idea.

Here's how the day was supposed to work: I'd spend the morning at the zoo with a friend and her foster daughter. Then I'd eat a leisurely lunch, stop by the bookstore, and spend the afternoon watching a movie with another friend. Then I'd have just enough time to get back home before 7:00. Sounds good, right?

What actually happened was I got up and realized that on my shopping trip for diapers and wipes yesterday I picked up lots of groceries, none of which happened to be diapers or wipes. This meant that we were down to five diapers and three wipes. Not good. So I ran to the grocery store as soon as Joanna got here and picked those up. Then I called my zoo buddy, who as it turns out was also out running errands, and we determined that by the time we got to the zoo I would be out of time for lunch and movie. We canceled our zoo trip.

This meant that I had several hours to kill before it was movie time. I made a beeline for the bookstore. I wanted to pick up a copy of Slaughterhouse Five for my personal collection, because it's a fantastic book and I'm tired of checking it out at the library. Unfortunately they were out of stock. "So it goes," I told the lady behind the counter, and chuckled.

She didn't get it. That's what I get for throwing around literary humor.

Anyway, I settled for a copy of The Jungle, a lonely planet guide to Afghanistan, and Charles De'Lint's newest novel. By this point it was lunch time, so I stopped by a little tea shop to get some lunch. There was no dress code posted, and I didn't realize when I stepped inside that this was the type of tea place where you're supposed to wear a dress, a little pillbox hat, and possibly a pair of white gloves. At least that's what the two elderly ladies sipping their tea in there were wearing. I was hungry though, not within walking distance of any other restaurant, and there were about twelve empty tables, so I decided to eat there anyway. The waitress lingered over the only occupied table in the room, pointedly ignoring me. "Can I help you?" she finally asked after I failed to go away, looking in disgust at my jeans. Her expression suggested that she hoped not and that I would take my non-pillbox-hat-wearing disreputable person somewhere else, but I disappointed her by requesting a table. "All by yourself, are you?" she said, and tut-tutted when I replied affirmatively. So not only was I a slob, but I was a social pariah too. She made the mistake of letting me choose my own table and I picked the one most visible from the window in revenge and seriously considered tucking my napkin into my shirt and chewing with my mouth open.

I ordered a Princess Tea, which while described in dulcet tones on the menu proved to consist of a pot of tea, a small scone, two apple slices, a slice of orange, two paper thin slices of strawberry, two blueberries, and a tiny little sandwich with the crusts cut off. This cost me fourteen dollars after tax. No doubt these were blueberries harvested at midnight under the full moon at the peak of ripeness by pixies, because that's about the only way I could think of to justify paying $1.40 per blueberry, which is what it works out to if you split that fourteen bucks up evenly.

Pixie harvested blueberries taste just like regular blueberries by the way, and they don't seem to bestow any magical powers or wishes or anything. Disappointing. Guess I won't be back.

After my ridiculously priced meal, I dropped by the house to grab my journal, and then headed off to the park to do some writing. I found a nice spot down by the lake and wrote for a while, and then munched my way down a few trails. The dewberries and salmonberries I found were just as tasty as those blueberries, I might point out-- even if they were picked by ordinary me.

By this point I was expecting to hear from my movie-going friend; we hadn't picked a theater yet, and the movie times were fast approaching. Unfortunately due to a medical emergency she had to cancel, leaving me with another four hours left to kill. The mosquitoes were biting me through my clothes and the park was rapidly losing its appeal. I needed air conditioning. The library was closed and I didn't feel like walking around a store, so I ended up at a Starbucks curled up in a chair with one of my new books, nursing another cup of tea and a cookie.

After two hours or so I couldn't really pretend I was still drinking my tea, so I went down to the craft store and picked up a new canvas. I like to dabble in painting and we had a blank stretch of wall in our house calling me, so I thought I'd whip something together until I could find a painting by a real artist to hang there. You see the results-- it'll make a good place marker until I find something better. After that, I was completely out of ideas. I considered walking around Fred Meyer for the remaining two hours, but that seemed a little pathetic. I ended up going home (slowly) changing clothes (slowly) and walking (slowly) down to the gym, where I killed the last hour on the elliptical machine.

Though I enjoyed the day, I think I'll break up the rest of the respite care this month into smaller amounts of time. I've apparently lost the ability to entertain myself.


~Jess










Saturday, July 4, 2009

Thanks!

Happy Fourth of July, everyone!

This year I watched the fireworks display sitting on a lawn chair behind Anna's house, eating homemade ice cream and watching the bald eagles disturbed by all the lights soaring out over the lake. It felt sort of like being in a sixties TV show-- I kept expecting Andy Griffith to walk by or something. It's almost 11:30 in the evening now, and I can still hear the whistling, crackling, and popping outside. Someone has a radio turned to patriotic music. The air is hazy and smells like gunpowder and ash.

While we're here celebrating, over in Afghanistan today was just another day of hard work for my husband and those serving with him. Though I wish he was here with me, I understand why he does the job he does and I'm so proud of him. He and his fellow soldiers work tirelessly without complaint, far from their families and under terrible and perilous conditions, in the service of those celebrating the holiday safely here at home.

Thanks, soldiers-- for all that you do.


~Jess



The photo for this blog post was taken by the lovely Lucie over at LZH photography.

Friday, July 3, 2009

Berries!

Today I quite possibly ate my weight in fruit. I love summer because this is the time of year when everything is ripe and ready to eat right off the vine. This afternoon Anna and I went down to the farmer's market and came back with blueberries, apricots and my poison of choice: Rainier cherries. I swear that if the fate of the world depended on me not stuffing myself until I'm sick with these cherries every year, then expect Armageddon because I would doom us all.

After a stop at the food coop where I picked up a couple of apples, we headed over to our CSA and were given a choice between taking home raspberries or strawberries. I chose raspberries, as I know that I can stop by the farm stand three minutes from our apartment tomorrow morning for strawberries.

As if this wasn't enough, we took a walk down by the lake after dinner and discovered to our delight that Thimbleberry, Dewberry, and Blackcap season was fully upon us. Thimbleberries, for those of you who aren't familiar with them, are these bright red berries that look sort of like raspberries but with smaller seeds. They grow along woods and have a delicious wild flavor. Some people make jam out of them, but we prefer the "pick and eat" method. Saves us having to carry them home, where we'd just eat them straight out of the bowl anyway. Dewberries are native trailing members of the blackberry family-- they are very sweet, though a little seedy. Blackcaps, or black raspberries, are Anna's favorites. They look like little round purple raspberries and they grow on bushes that are pretty few and far between, making each one an exciting find. They have a complex flavor-- Anna claims they have undertones of bacon, and I think they taste a little like licorice. Either way they're delicious. This year seems to be a bumper crop for all three kinds of berries, and since Anna and I ate about a pound of them between us today we're doing our part to make sure they don't get out of control.

I used to be able to take Connor with me on the trail to pick berries, but unfortunately it isn't wheelchair accessible and he's a little big now to fit in a sling. I'd probably be dangling him directly into the brambles anyway whenever I bent over-- not something he'd exactly appreciate. He's too wiggly to carry on a hip for long periods, so that's out too. Luckily Anna's husband Dan was able to watch him while we went down to pick, and I'm sure I'll use some respite care for the epic Blackberry Picking of Doom expedition we'll embark on later in the summer. Last year was a poor year for berries, and we picked 80 cups. In three hours. The blackberries this year are already eight feet high and they still have at least a month's worth of growing to do before the first ones ripen up. I may need to buy a new freezer in preparation.
Connor is pretty funny with these berries-- he loves the thimbleberries and the blackcaps, but he doesn't like the seeds, so basically he'll hold the berry in his mouth for a long time, suck on it until he gets most of the juice out, and then spit out the skin, pulp and all of the seeds. This can be pretty messy. Blueberries, which seem like they would be the best fruit to feed him, don't work because he hates them unless they are in blueberry smoothie form. He doesn't care for strawberries either.
Oh well. More for me.


~Jess

Thursday, July 2, 2009

Home

We're home.

We're tired.

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

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

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

~Jess

Wednesday, July 1, 2009

Home Again Home Again...

Jiggity Jig!

Well, we're flying back to Puyallup tomorrow. It was nice to see everyone, though I wish the circumstances could have been better. Also I'm not big on planning a trip in less than 24 hours. Anyway, we'll be getting up bright and early and bidding farewell to everyone in Texas. I wish we lived closer to family, though I don't really want the 100 degree weather that would entail. I'm looking forward to my 75 degree summer days again.

My grandfather is still in the Neuro ICU, and will probably be in the hospital for a number of weeks, if not months. They put a g-tube and a trach in today. He's got a long road ahead of him, but I think that eventually he'll get there-- we'll just have to see. I am glad that I got the chance to come down and see him and that the worst seems to be over, though I wish this hadn't happened.

I made the mistake of telling Connor that we're going back on a plane tomorrow, and he is freaking out. Currently he's sitting on my lap-- he's been bawling whenever I put him down and leave the room. I think he's worried that because Daddy went on a plane ride and left for a long time, that I'm going to go on the plane and leave him here. We're talking a little about it right now, and we'll see whether or not he'll go back down in a couple of minutes or if he's going to do this all night. I hope not-- we've got to get up early.

See you all in Washington tomorrow!

~Jess
 
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