Friday, July 31, 2009
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!
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.
Tuesday, July 28, 2009
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.
Monday, July 27, 2009
Sunday, July 26, 2009
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.
Saturday, July 25, 2009
Friday, July 24, 2009
Thursday, July 23, 2009
Wednesday, July 22, 2009
Tuesday, July 21, 2009
Monday, July 20, 2009
Sunday, July 19, 2009
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.
Saturday, July 18, 2009
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.
Friday, July 17, 2009
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.
Thursday, July 16, 2009
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.
Wednesday, July 15, 2009
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.
Tuesday, July 14, 2009
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.
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.
Monday, July 13, 2009
Sunday, July 12, 2009
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.
Saturday, July 11, 2009
Friday, July 10, 2009
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.
Thursday, July 9, 2009
Wednesday, July 8, 2009
Tuesday, July 7, 2009
Can't believe he's gone.
Monday, July 6, 2009
Sunday, July 5, 2009
Saturday, July 4, 2009
Friday, July 3, 2009
Thursday, July 2, 2009
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.
Wednesday, July 1, 2009
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!