In Which The Kids Have A Party And Work Hard

Today the center where the kids go to physical therapy held their Christmas party!  I'd intended to take them right after school, but I got caught in traffic on the way to get Connor and by the time I got home Eden was thoroughly ensconced in her homework.  Once she starts something, she really likes to work straight through until whatever activity she's involved in is finished.  So I waited to leave until Eden got to a stopping point before we left for the party.

We ended up getting there about half an hour before the party was finished, but it was still absolutely packed.  The therapists manned tables set up around the center with all kinds of fun crafts and activities for the kids to do, and there had to be well over a hundred children of all ages there.  Connor got really overwhelmed about five minutes in, but Eden seemed to absolutely revel in the chaos.  So I ended up taking the little guy to the restroom to calm him down for a bit while she bounced from one station to the next, happy as can be.

Eden made a picture frame and a Santa beard, both of which she immediately gave to Connor.  The kids fished for prizes, and then we trooped up the circular ramp to the second floor, where they took a picture with Santa.  We finished up with that right about the time that the party was shutting down. 

Then we went back home, where Connor crashed pretty much immediately.  I think once he got used to the noise at the party he enjoyed himself, but it definitely wore him out!  Eden, however, was pretty wired when we got home; it's funny to see just how differently the kids handle the same situations.  She eventually calmed down and went to work on her book report, which she wrote on until dinner. 

It's pretty amazing to see her writing enough to fill the front and back of a page, when just last year writing a single paragraph took hours.  Now she just asks me to spell the occasional word for her, instead of having to help her read and spell everything, and even though her grammar and spelling are still pretty creative things are coming more easily to her.  It's great to see her more confident in her school work.  Also I have to admit I'm  not exactly missing our six-hour-a-night homework sessions. 

I'm proud of my girl!

~Jess

In Which I'm Really Tired And Cheat

It's pretty late and I have yet another ridiculously busy day tomorrow, so I'm copping out and posting something I keep meaning to put up and haven't gotten around to yet.  Remember that speech I was supposed to give for CTC's fundraiser back in October that I didn't end up reading because Connor decided to have a ridiculously long seizure?  Several of you have asked if you could read it, so I'm going to just go ahead and put it up here.  Ta da! 

~Jess

In the fall of 2006, my husband Jeremy and I loaded up our car and drove the 2,000 mile journey from Dallas, Texas to Fort Lewis, Washington, accompanied by Connor, our six month old son, and Cricket, our very carsick cat.  I figure since our marriage survived that car trip intact we’re stuck with each other forever. 

Also crammed into the car was Connor’s huge collection of medical equipment and a steadily growing laundry list of diagnoses.  I’d given birth to a medical landmark; our son had just been diagnosed with a genetic condition so rare he was the only known case in the world.  He has an unbalanced translocation—where one part of a chromosome is deleted and part of another chromosome is duplicated, and his particular issue is so rare that it doesn’t have a proper name—just a dozen word description of where on his genes the deletion and duplication occurs. 

It’s amazing how just a tiny error in the blueprint mapping out his body could have such dire consequences; Connor has over two dozen separate medical conditions caused by his genetic issue, affecting nearly every system in his body.  He had his first surgery at six days old to remove his right kidney, which was swollen up so large it was bigger than his lungs.  His second surgery to fix his twisted intestines was done two weeks later.  Whole swaths of his brain were missing, smaller or formed differently.  He had a heart condition, visual impairment and hearing loss, and profound developmental delays.

To make matters worse, at two weeks old he was taken out of his isolette for a diagnostic test, got too cold, went into shock and one of the fragile blood vessels in his brain tore, causing him to have a stroke.  This did further damage to a brain that was already struggling.  We saw a lot of grim-faced doctors who used words like “terminal illness” and “brain-stem response only.”  We were told he would never move his arms and legs with purpose, never recognize us or communicate, and would almost certainly die in the first few weeks after birth.  They were sure he’d never see his first birthday.

Despite the dire predictions Connor’s condition slowly improved until he was well enough to leave the hospital.  The kid snoozing in the car seat as we wound our way through the pass in Colorado and headed across Wyoming didn’t look like he was about to die at any minute.  He looked adorable.  He had a button nose, huge liquid-black eyes that would slowly change over the months to a startling green, and beautiful star-fish hands with long, tapering fingers.  He was also bald as a cue ball and missing his eyebrows, which had been rubbed off by the hat he wore in the hospital for his c-pap machine.  In my post-pregnancy emotional state I was nearly as concerned about the eyebrow thing as I was about his huge list of medical conditions, because I was convinced they would never grow back and he’d be made fun of in school not because of his disabilities but because he would be “that kid with no eyebrows.”

So we settled in at Fort Lewis, Jeremy reported in to his job as an army officer, and I set about the monumental task of figuring out how the heck to parent this special little guy.  Somehow I hadn’t been issued the magic wand with the ability to fix everything that I figured most new mothers were handed on the way out of the hospital, and my liberal arts degree left me woefully unprepared in the medical knowledge department.  I threw away my copy of What To Expect The First Year after it started talking about how baby should “have good head control and be pushing up on her hands” and holding my baby still felt like cradling a tube-sock filled with jello.  I felt increasingly isolated and helpless because I knew I needed to do something to help my son, but I didn’t have the knowledge or the tools to figure out what to do on my own. 

After about a month of waiting on a list, we were finally able to get Connor in at a program for physical and speech therapy.  We attended all of four sessions before the company abruptly went out of business, leaving Connor and hundreds of other local children out of services.  I put Connor’s name on the waiting list of every therapy clinic I could find, and a few days later I got a call from CTC.  They were opening up a clinic in the Tacoma area and doing their best to help as many families as possible, and they had a physical therapist who could work with Connor.  They’d add speech therapy in to his regime as soon as they could. 

CTC changed our lives.

Connor began working with Laura down in a tiny house located next to a junkyard that served as CTC’s temporary quarters while they worked on finding a more permanent area to house their offices and therapy rooms.  Soon sessions with Julie, a speech therapist, were added in, and later on Jolie, an occupational therapist, worked with him as well.  For the next five years Connor traveled to therapy several times a week, beginning in the little house, then moving to the upstairs rooms in a church, to their newly renovated building off of Hosmer, back to the church when the building flooded, and then to Hosmer again once the repairs were finished.  For the first time, I wasn’t alone—I was surrounded by people who understood how terrifying and isolating having a child with special needs could be, and who were eager to help empower me and Jeremy as we navigated our new world.

Under their care Connor began doing things that based on his medical conditions should have been impossible.  It was there that he reached out and activated a toy for the very first time.  It was there that he first sat on his own, wobbly but completely unsupported.  He received his first pair of ankle-foot orthotics and learned how to stand with assistance.  He rode his first pony at a CTC Harvest festival and loved it so much he refused to get off.  He began communicating with sign language, making choices, and allowing me to have a window into how he interacted with and saw the world.  I still tear up thinking about the first time he signed “Mommy” and reached out for me.  I don’t think there’s a more precious gift anyone could possibly have given me. 

Over the years CTC has become a life-line, and its therapists have become my friends.  They’ve thrown themselves into finding solutions for the unique problems Connor’s conditions present as they arise.  When Connor had his first-ever seizure and collapsed at a therapy session, they called 911 and held my hand until the ambulance arrived.  One summer when our unairconditioned apartment reached temperatures too hot to be safe for Connor, Laura even opened up her home to us so we had a cool place for him to sleep.  It’s not just a job for them-- they put their whole hearts into helping Connor, and he’s blossomed as a result.  I will be forever in their debt.

Thank you so much for helping CTC continue to make a difference in the lives of children like Connor and parents like me.  The therapists at CTC couldn’t give me or anyone else a magic wand to “fix” things—no one can do that.  Connor will always be profoundly affected by his medical conditions.  And that’s okay; he doesn’t need to be “fixed” because he isn’t broken.  But what they did do is help Connor become the best version of himself; to live as happily and as independently as he possibly can.  And they have given me and hundreds of other parents like me the ability to do something for my child; to help him become that person.  The things that Connor has learned at CTC have profoundly changed his life and mine for the better.

I will be forever grateful for that.

In Which I Turn On The Waterworks For A Good Cause

Today after I dropped Connor off at school I grabbed my lap top and writing notebook and headed down to one of the local coffee shops to get some work done.  I'm giving a speech on Saturday for a fundraiser being held by Children's Therapy Center-- the fantastic organization that did Connor's therapy for a number of years-- and I needed to transcribe my speech to a Word document so I could send it to the organizer of the event. 

I am not what you would call a particularly gifted public speaker; actually I have terrible stage fright and really dislike being in the spotlight.  But the topic I'm speaking on-- Connor-- is one I'm an expert in.  Actually (as the 1300+ blog posts here testify) it's pretty difficult to get me to shut up about the kid.  I had to cut large portions of my first draft when I read it out loud and discovered it was nearly three times longer than my allotted speaking time.  Whoops. 

So at least I won't run out of things to say.  The next problem I have to tackle is that I seem to be completely unable to read the thing out loud without weeping all over the place.  I can make all right until about halfway through when I start talking about all of the "firsts" Connor had at CTC-- first time sitting on his own, first time standing, etc. and then I lose it.  Heck, I can't even type the thing without crying; I was sitting in the coffee shop this morning clattering away on the keyboard with tears streaming down my face.  The other customers gave my table a wide berth.

So I'm not entirely sure how successful this whole speech thing is going to be.  But I'll do my best and we'll see how it goes.  If nothing else I'm looking forward to the chance to meet up with my friends at CTC and my lovely ladies from my roller derby league the Dockyard Derby Dames, who will be helping out at the event because they are awesome.  If you're in the local area, you should come!  If nothing else, watching me attempt to give an actual speech without freaking out and/or leaking all over the stage should be highly amusing.  And hey, it's a great cause!

~Jess


  

In Which We Do Some Chores And Enjoy The Weather

Today Jer and I cleaned off the deck and borrowed a power sprayer from our neighbors down the street to get it ready for staining.  We're having a rash of days without rain right now, so it's the perfect time to take care of it.  We'll let the deck dry for a few days and then get to work.

In the process of cleaning I took a load of yard waste to the dump, and it looked like everybody else had the same idea about working outside, because I ended up waiting in line for over half an hour to drop everything off.  With the sun out and summer finally, finally here, everyone in our town is trying to get as many of their projects done as they can before the rainy weather moves back in. 

Otherwise the day was pretty laid back!  Connor stayed inside because it was a little warm for him to be out, and he rode his tricycle, stood in his stander for a while and did a long stretch of tummy time, during which he fell asleep and took a nap in the middle of the living room floor.  Guess we wore him out!

He's been having a bit of trouble keeping his meals down in the past few days; probably because of the heat.  So I think we'll try putting him on his pump in the daytime too instead of giving him bolus feeds and see if that helps.  That way he'll get his meals spread out over a much longer period of time and won't have as much in his stomach at once.

It's still lovely to have some sunny weather, though.  Bring on the blue skies!

~Jess

In Which Connor Tries Some Performance Art

Connor managed to lose one of his ear molds at some point today, which is fantastic.  Thankfully we've still got the super expensive part of the hearing aid, and ear molds are not that difficult to replace.  We'll continue looking for it and see if it turns up, but I'm not overly optimistic.  Glorious.

Otherwise the little guy had a great day!  He spent over two hours in his stander, did some great fingerpainting, and splashed around in the bathtub with his daddy.  His method of fingerpainting is pretty funny.  I dip his hands in the paint, and he carefully wipes as much of it off of his fingers on to the paper as he can.  Then he wipes the rest of it on his stomach and hair.  After he's covered himself in paint, he looks at me and signs "more."  This is my cue to dip his hands in paint again. 

I took this picture right at the beginning of his painting process, but I should have taken one at the end too.  I'm pretty sure there was way more paint on my child than on the paper.  He looked a bit like a three dimensional Jackson Polluck painting.  Also I forgot to put saran wrap around his g-tube like I usually do, so it may be permanently stained blue.  Oh, and his hair may have a few lovely green streaks in it for a while, since his white-blond locks hold color beautifully.  They claim that the stuff is water-soluble, but I'm not convinced. 

Oh well.  I'll just spike his hair up or something and go for a punk rock look.

Yay for sensory play!

~Jess

In Which Patience Is A Virtue I Don't Possess And Connor Feels Lousy

No phone call today.

Okay, realistically I should know better than to expect the agency to call me the first day they are back in the office.  The Thailand adoption director calls every family in the program personally to talk about the trip.  If there are only, say, a dozen families in the program and she spends only half an hour on the phone with each one (and I would imagine these calls usually take more than half an hour because the families want to squeeze every last detail of the trip out of the director), calls the next family instantly and doesn't take any bathroom breaks or anything that's still six hours of phone calls.  And she's been out of the office for over a week, so I'm sure she has absolutely nothing to catch up on in between phone calls-- not to mention all of the compiling of the information that she has to do of the children that the families in the waiting child program are attempting to adopt and the sixty or so other kids that aren't matched with families yet.  And of course last year it took them a couple of days to call me. 

So yeah, logically I shouldn't have expected one today.  Now if I could just shut off that annoying inner voice that keeps screaming about how I should be FIRST because MY child is the MOST IMPORTANT child and I need all of the information RIGHT NOW, I'll be good to go. 

Patience-- not my best virtue.  I need to work on that. 

I think that Connor is getting sick again-- the little guy was super sniffly and tired today.  When I put him in his stander, he was okay for about five minutes and then his lower lip started quivering and his eyes filled with tears.  It was the saddest thing ever-- especially since he almost never cries.  He calmed down quickly after I stroked his hair for a little bit, sang him a song and covered the top of the stander tray with a nice soft cloth.  Then he put his forearms on the tray, lay his head down on top of them and took a nap while standing up.  That was his third nap of the day, so you know he wasn't feeling good. 

I felt really guilty about making him do his standing work even though he was obviously feeling under the weather, but if he's getting sick than he'll probably be completely wiped out the next few days and so it was important to get what therapy we could done today while he's still able to do it.   On Wednesdays he doesn't have school, so what we do at home is the only therapy he gets that day.  After the short meltdown and his twenty-minute nap he perked back up and seemed to be feeling okay by the end of his standing hour.  Once I took him out he snuggled up to me, crashed on my chest and slept for another hour or so.  It's difficult to know just how hard to push him sometimes.

I hope that today was just a fluke and he's feeling better tomorrow.  This winter has been a tough one for the little guy in the health department, so he deserves to catch a break!

~Jess

In Which Connor Works Hard

The director of our adoption agency's Thailand program should be home from her trip and back in the office tomorrow, so hopefully we'll get a call with an update about Ellen!  I'm going to be absolutely glued to my phone.  I always get a bit nervous about these trips, so hopefully we'll have some good news!

Connor worked extremely hard today; his occupational therapist at school said it was just about the best day she's ever had with him.  Then to top it off, he stood up in his stander through the entire Muppet Treasure Island movie!  That's about an hour and a half of standing, which is impressive.  I'm going to have to start figuring out a new motivation for him to keep standing pretty soon if he keeps going at this rate or else he'll be watching way too much TV. 

I'm so proud of him!

The combination of standing, all the hard work at school and a few short seizures completely wore the little guy out, and he fell asleep on our bed at seven in the evening.  That hasn't happened in a really long time, so you know he was really, really tired.  I'll take it a little easy on him tomorrow as he's likely to be a bit sore, but then we'll go right back to building up that time again.  I'd like to work him up to two or three one-hour sessions a day.

It's important that Connor get as much time in the stander as possible because it will do several great things for him.  Not only does it help stretch out his tight hip flexors and hamstrings, but it also helps his bones become more dense.  Children who spend a lot of time in wheelchairs and don't bear weight on their legs often are at risk of having their bones break easily because they aren't as strong as a walking person's bones would be. 

It will also greatly lower his chances of having pressure ulcers, which are caused when someone stays in one position for too long a period of time.  Luckily we haven't had any issues at all with bed sores so far-- probably because we never leave the kid in one position for long-- but the best way to treat pressure ulcers is to prevent them from happening in the first place so anything we can do helps!

I'm thinking that maybe once we have sunny skies again I'll start taking Connor and his stander to the park.  It's got some nice wheels, so the two of us could have a lovely walk.  We might get some weird looks, but we're kind of used to that at this point.  Connor loves walks, so I think that might be a pretty good motivator!

~Jess

In Which We Have A Lazy Day

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

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

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

~Jess

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

We had a pretty busy day today!

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

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

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

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

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

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

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

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

~Jess

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

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

I admit to nothing.

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

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

We'll just have to see how things go!

~Jess

In Which Connor Feels Much Better And We Find A Therapist

Connor is feeling so much better today!

His rash looks dramatically better, and he didn't throw up a single time today!  The Benedryl did keep him pretty zonked, but he seemed to be way more comfortable anyway.  Sleep is probably just what he needs to help him recover. 

The plan today was to take down the Christmas lights now that the snow is all melted (yes I know it's over a month after Christmas-- don't judge me) but it rained.  So instead I took a bunch of stuff to Goodwill and Jeremy made another dump run.  Apparently the line for the dump was out of the facility and down the street because everyone was dropping off the tree limbs that had during the ice storm; our dump takes yard waste for free and makes compost and wood chips out of it.  So we're going to hold off taking the one small tree branch that came down in our yard and our Christmas tree (don't judge!!) to the dump until Monday, when hopefully everyone will be at work and I won't have to wait for two hours to drop them off.

Other errands today included a trip to the bookstore-- which sadly takes over half an hour to get to now since the one near us shut down-- and a visit to the post office to restock my supply of boxes for Ellen's care packages.  Ellen's Christmas and birthday letters finally came back from translation, so I can put her care package in the mail first thing tomorrow morning!  I ultimately decided to whittle down and combine the two care packages rather than send her two separate boxes really close together.  We don't want to overwhelm her with stuff, and she'll be getting a February package in a few weeks.  Hopefully our adoption agency will be visiting her orphanage soon as well!

Speaking of Ellen, I made an exciting discovery last week!  I found a marriage and family therapist nearby who specializes in adolescence, has experience with adoptive families, lived in Thailand for a number of years and is fluent in Thai!  Ellen is an extremely resilient, intelligent and brave girl and she wants to be adopted, but any child who is adjusting to a new country, culture, language and family-- especially a teenager-- is likely to have a difficult time (who wouldn't?) and we want to have resources immediately available for her should she need them. 

I called and spoke with the therapist, and not only is she more than happy to see Ellen should she need a listening ear, but she'd also be willing to meet with us before we leave for Thailand to help us figure out the best way to ease our daughter's transition into our family.  I'm really thankful that we've found someone who Ellen wouldn't need a translator to communicate with and who is extremely familiar with Thai culture.

Can't wait to get our daughter home!

~Jess

In Which Connor Is Fitted For Some Wheels And Has A Flair For The Dramatic

Connor had a pretty busy day today!

We woke up to about three inches of snow on the ground, and we're supposed to have a whole bunch more tomorrow-- up to twelve inches in what could apparently end up being the worst snowstorm here since 1985.  Connor's school was canceled this morning, so he got the chance to sleep in. 

And yes, I know that for all you hardcore Canadians and Easterners, a foot of snow isn't all that bad.  But nobody here is exactly prepared for that amount of snow, so people are completely freaking out about it. 

Anyway, we braved the snow this afternoon and drove down to the local hospital, where Connor had measurements done to convert his chair for long sitting (where you sit with your legs straight out from your body) so that he'll be stretching out his hamstrings whenever he sits in it.  Then we talked about getting him an adaptive floor sitter too, so he can play down with his friends whenever he has a play date.  And then finally it was time to talk about ordering his new adaptive tricycle!

Connor's long outgrown the Radio Flyer trike that we modified for him a couple of years ago-- his knees are all up around his ears if we try to put him on it.  Since it's pretty well impossible to find a bigger bike that will adapt well to modification, it's time to switch to a bike made specifically for children with special needs that will grow with Connor as he gets older.  It's practically the only physical activity that really motivates the little guy to work hard-- he loves riding and when we tried out a bike at the hospital today he was actually able to start it moving forward by himself!  So we'll be ordering him a trike from Rifton.  I'll let you know how it handles when it comes.

Shortly after we got home from our appointment I got a phone call from Connor's doctor.  The cultures they took of his impetigo came back positive for both a strep and a staph infection, because the little guy doesn't do anything by halves.  Also one of the infections cultured as resistant to the antibiotic we've had him on. 

Bactrim, the antibiotic that did wipe it out and thus is the one we're switching to, could potentially interact with one of Connor's heart medications and give him hyperkalemia (high potassium levels).  Normally that side effect only happens if someone is on the medication for a long period of time, so it's not very likely it will be a problem because Connor only has to take it for ten days.  They're being really cautious though, because hyperkalemia can do some really, really nasty things, like, um, stopping your heart. 

So when we picked up the Bactrim we also got a baseline potassium level drawn, and while he's on it we'll be checking Connor's pulse rate at least once a day and taking him back in for another test if it starts getting slow or irregular, and also if he starts throwing up a lot or seems really weak or tired.  Whee!

Seriously, it's like living with my own miniature soap opera, only with fewer serial killers and alien abductions. 

~Jess

In Which Connor Has A Busy Time And Does A Lot Of Standing

The day started off pretty slow for Connor, but his afternoon was really busy.  After his nap we drove over to one of the local hospitals to get the little guy's stander adjusted and to talk about his adaptive equipment.  Connor has some muscular and skeletal issues that are slowly starting to become more of a problem as he gets older.  Despite his school therapy and the exercises we do with him at home, his scoliosis continues to progress and his hamstrings are starting to tighten up, making it difficult for him to stand upright. 

So we want to modify his chair, stander and at-home seating to help stretch him out as much as we can.  We worked on his stander today, and on Friday we'll return to work on more of his equipment.  We'll also be looking at fitting him for another back brace some time in the near future.  A brace won't reverse his scoliosis, but it can slow down the progression of the spinal curve.  Connor will probably eventually have to have surgery for his scoliosis, but we want to delay it as long as possible-- ideally until he's stopped growing. 

So when we got home I put him in his newly modified and extended stander (he's gotten a lot taller!) and he watched two whole episodes of Fraggle Rock without fussing at all!  All in all he spent just over an hour in it today, which is pretty fantastic.  We've been keeping the stander mostly at school since he has other equipment at home, but since he's pretty much outgrown those things I think we'll need to start hauling it back and forth again.  It's a hassle, but until we have other adaptive equipment to help stretch out his hamstrings and his back it's the best way to do that passively.  Then we can focus on other things instead of having to spend all our time trying to stretch him out. 

After his stander work he and I changed into our bathing suits and I ran a nice warm bath for him.  We've been working on floating in the tub, and he's starting to get the hang of it.  He's not panicking any more when I lay him on his back, and he's okay with letting his body just float as long as I'm supporting his head and neck.  He's gotten to where he really enjoys bath time at home (as long as we get in after the water is done running-- he's terrified of the faucet) but it's still some major sensory work for him.  All the echoes and splashing definitely make it less than a relaxing experience for him, but he's gotten a lot better at tolerating everything.  I'm actually able to use a cup to pour water over his hair now without him completely freaking out now!  Trust me when I say that's a big step forward for him.

So between the appointment, the standing and the bath all that hard work got to the little guy; he was so tired he fell asleep in the middle of his bedtime story and Jer had to carry him over his shoulder to bed.  I think that if it's going to tire him out so much that he actually sleeps at night, more time in his stander at home is definitely in the cards. 

He's getting so big!

~Jess

In Which We Have A Good Day

Connor had a great day today!

We spent the morning running errands downtown, and then we stopped in Pioneer Bakery for lunch.  Connor tried some of their chicken soup (with noodles made from scratch, which tells you how awesome it is), and he thought it was pretty good.  He was not as impressed with the marionberry cobbler, which was fine with me.  That way I didn't have to share.

Then we came home and I worked on some of the finishing touches for my steampunk roller derby costume while he took his nap.  After that we opened up our latest theme box from the library and got to work on Connor's therapy for the day. 

The "Going Fishing!" theme box includes, among other things, a pair of fishing rods with a couple of different "catches" you can hook to them to reel in.  I remember those things from the annual block party the neighborhood I grew up in would always hold in the fall.  They would open up a card table, decorate it like an aquarium and set it on its side.  Then the little kids would "fish" over the top of the card table, and a volunteer hiding behind it would attach a little goody bag to their fishing rod.  It was good, cheesy wholesome fun.  I decided to set something similar up for Connor so he could practice holding the rod.

Apparently fishing is not a sport Connor is interested in getting into.  Ever.  He was okay with feeling the rod, and the clicking noise it made when I turned the handle was pretty interesting, but holding was way out of his comfort zone.  I made him do it anyway, because I'm evil like that. 

Then we watched this weeks educational video while he did some kneeling and standing practice.  This was the first video in a new series about the ocean and I was not particularly impressed.  I don't think I'll be checking any more of that particular series out.  Connor could have cared less about the educational content, but they only sang one song, which to his mind meant the video tanked.  Oh well.

Anyway, so overall it was a pretty nice, relaxing, happy day.  I could use a few more of those around here!

~Jess

In Which I Take Connor To The Pool And Am An Evil Horrible Mom

Last night Connor stayed awake until a glorious five in the morning, so this is going to be short.  I need my beauty sleep!

He had three little seizures today and was pretty tired, for obvious reasons.  I decided I was going to take him out anyway, though, because I wanted to make dang sure he'd sleep tonight.  He's got school tomorrow and I was not having the kid fall asleep at five and wake up at seven.  I picked the most strenuous, sensory-high activity I thought he could handle today; we went swimming.

Swimming is not only a physical workout (we do a lot of standing, kicking, splashing etc in the pool) but also a major sensory workout for Connor-- especially when it's warm outside so there are a ton of kids in the toddler pool.  Our local pool is indoors, which means that there are a whole lot of echoes and the noise can be pretty overwhelming.  Connor usually freaks out a little when we get in, but today the pool was especially busy and his lack of sleep probably didn't help.  Basically I picked him up, walked into the pool with him, stood him up about waist deep in the lukewarm water, and watched his little face crumple like an empty brown paper bag.

So we sat in a corner of the pool and rocked for about ten minutes while Connor hid his face in my chest and cried huge, silent tears.  Every once in a while he looked up at me with a quivering lip, his expression telling me that his mother, who he loved and trusted with all his heart, had committed the Ultimate Betrayal, thereby making me feel like the Worst Mom The World Has Ever Known.  He's so good natured and sweet that when he does have the occasional rare meltdown it's really hard for me to not just immediately stop whatever activity it is that we're doing even if it's something that's good for him.  But he hadn't done any other sensory or therapy work today, so I knew I needed to stick with it. 

Sometimes being a good mom means that your kid won't like you very much.  That's the way it goes.

I told myself that if we sat quietly for long enough he'd eventually calm down and adjust to the pool.  And that's exactly what happened.  Oh, don't get me wrong-- he still wasn't exactly overjoyed with the idea of being at the pool.  But he stopped crying once he figured out that the other children were actually kids like him and not, say, oversized piranhas who planned to strip the meat off his bones in less than three minutes if they got within five feet of him. 

Once he relaxed just enough to stop jamming his nose into my collarbone I changed his position and helped him float around the pool on his back, which calmed him down quite a bit more.  I think a combination of things made the sensory input not quite so overwhelming.  His ears were underwater so the noise was muffled a little, and instead of staring at all the Scary Splashing Piranha Children Of Doom he could look at either a nice, calming ceiling complete with skylight (one of Connor's favorite things in the world-- he loves skylights) or he could watch my face.  And then after some floating time he was able to do be upright again and do some of his standing and balance exercises, though we held off on the splashing and kicking as I didn't want to push him really hard today.  Splashing is one of the things he has the worst time with because he really doesn't like getting water on his face.  We did do a little gentle bouncing, and a couple of times he even cracked a smile.  We stuck to the quiet part of the pool away from the other kids, and other than a Giant Splashy Inflatable Ball of Iniquity that landed too close to him and almost triggered another meltdown, he seemed to think things were okay.  Towards the end of his pool time he even shifted his weight around on his feet a little and put his hands on my shoulders to keep his balance! 

We ended up spending about an hour in the pool, and he was pretty exhausted by the time we got out so hopefully he'll actually sleep tonight.  Which is what I'm going to go do now, because I'm also pretty tired. 

Good night!

~Jess

In Which Connor Rides A Pony

Obligatory Connor On A Pony Photo

Connor woke up this morning in good spirits but still really snotty and coughy, so I decided to keep him back from school.  I'm pretty sure he'll be able to go tomorrow though, as not only was he mostly back to his normal self but he also didn't have a single seizure!  I just didn't want to expose the other kids to a possible contagion.

Of course, now Jeremy and I are both getting sick.  Oh well.

At any rate, Connor continued to perk up throughout the day and since the ponies weren't going to catch his cold I decided to go ahead and take him for his first riding session.  So we drove down to Spirit's Party Barn, pulled up outside and took the wheelchair through the muddy terrain and into the enclosed paddock where Greg was waiting for us.  This time Connor rode Spirit, who is the barn's namesake and an elderly, gentle pony.  Spirit was quite a bit bigger than Thunder (the last pony Connor rode) and Connor wasn't sure what to make of the situation at first, but after Spirit investigated the little guy's shoes and lipped at his shirt the kiddo decided that he was okay with the situation and settled into the riding.

Oh, and please note that I did in fact get a picture of Connor on the pony as requested.  Your brain probably won't implode due to the fact that it was not, in fact, a miniature pony this time, but hopefully there is more than enough cuteness there to satisfy all parties requesting said photos.  I got more but this is the only one in which he is not actively drooling (probably because balancing on a pony is such hard work).  I'll try to take some more at a future date.

Anyway, he did a fantastic job!  Greg commented that Connor seems much steadier in the saddle and needed much less support than the last time he rode, which was lovely to hear.  Greg led Spirit around the paddock in a slow, wide circle while keeping one hand on Connor, and I helped support the little guy from the other side.  Connor rode Spirit four times in about ten minute intervals with a nice long break in between each to give him a chance to recover; riding is hard work!  By the end he was signing "want more," every time we stopped, and he was feeling confident enough to gently feel the saddle and Spirit's mane.  Connor also got to see a baby goat and a couple of silkie chickens (the dustmops of the chicken world).  He was mostly interested in watching Spirit, though. 

I mentioned to you all the last time I wrote about Connor doing some riding how I thought Greg was a great guy and would be a positive influence on Connor; well, he certainly proved that again today.  Not only was he amazing with both the animals and the little guy, but he offered to let Connor come ride twice a week and refused any compensation.  I kind of teared up a little; I have a feeling that the riding is going to be hugely beneficial to Connor on so many levels and this means that he can continue to ride well past the couple of months that we had room for in our budget.

There are some pretty fantastic people out there.

~Jess

In Which We Have A Very Busy Day

I woke Connor up late this morning since he made poor choices about how late he was planning on staying awake (midnight) and I needed enough sleep to be able to drive.  Then we were off to physical and occupational therapy!

I think we need to start being a little harder on him when it comes to working on things, because he's learned how to work the system.  Whenever he doesn't want to do anything he goes all cute and snuggly and of course we just melt and let him get away with murder.  He decided that he wasn't interested in therapy today, so he turned the cuteness up to full wattage.  When that didn't get him out of the activity we were doing he decided that physically resisting any effort made to get him to touch anything was a good secondary technique.  We were trying to have him decorate a snowflake for our therapy center's Christmas party and he was reacting like the snowflake was made out of carbolic acid.  He was seriously uncooperative.

Oh well.

We went from there to the library, where I returned all of my long-overdue books that have been sitting on the coffee table for the last month waiting to go back.  We of course had to stop by the children's section so Connor could ogle their fantastic LED lighting on their ceiling that looks like stars.  Then he got to choose a book, I picked up one (or two, or five) for myself, and we were off to the pharmacy, storage unit, grocery store and a number of other places I needed to check off my errands list.

I didn't even realize it was the first of December until about halfway through the day-- the holiday season really snuck up on me this year!  I haven't even really gotten started on my Christmas shopping and I have eight thousand things to do. 

Guess I'd better get my rear in gear and start trying to catch up!

~Jess

In Which Connor Plays Mr. Freeze

We keep our house relatively chilly in the winter time for a couple of reasons.

The first reason is that we don't like spending money on frivolous things like comfortable indoor temperatures when we can just throw about eight blankets on instead.  Turning our heat up above 62 degrees or so would seriously cut into our coffee shop and book funds, and as we all know those are necessities that Jeremy and I can't possibly live without.

The second reason is that our kid overheats at a ridiculously low level of activity because he doesn't appear to have functional sweat glands.  It's a heck of a lot easier to take a layer of clothing or two off of him to cool him down rather than changing the thermostat all of the time.  Since when he overheats he starts having massive seizures, the ability to cool him down quickly is rather important.  And since the bags of frozen peas are now reserved for icing my numerous roller derby-inflicted bruises, we just keep the house cool instead.

If it were up to the cats, though, it would be a bazillion degrees in here, I swear.  You would think that their nice thick winter coats would make them all warm and toasty, but apparently not.  Today was one of the first really cold and wet days of winter, though, so I turned on the fire and let it get up to a steamy 65 degrees.  This was Cricket's reaction to me turning on the fire.

Really, Cricket?  Aren't you being just slightly melodramatic?  It's not THAT cold in here.

Because it was pretty nasty outside, when we drove out to physical therapy I had the heater going full blast and Connor was dressed in his fleece coat.  For some reason, however, when we got to therapy suddenly the whole upper half of his body was freezing.  He has those weird circulation issues, but normally they're split vertically; the left half of his body will be cold and the right side hot (or vice versa).  Well, today apparently all the blood decided to hang out in his feet, because his face and hands became extremely pale and icy and I was a little worried he was going to pass out-- he kept trying to fall asleep on us.  So instead of PT we wrapped Connor up in a blanket like a burrito and he had a 45 minute snuggling session while we watched him like a hawk to make sure he wasn't going to start seizing or something.

The weird temperature difference faded as mysteriously as it began, and by the time we were supposed to do speech therapy and occupational therapy (we had a joint session scheduled for today) he'd perked up quite a bit.  Mostly he perked up enough to sign that he was ready to go home, and he rejected all of his favorite toys-- at least until another child came into the room for her therapy session and started playing with them.  Then suddenly he wanted all of them back.  Also he didn't like the girl and her family, and he wanted them to leave.  Now.  I'm pretty sure he didn't actually want to play with the toys himself, either, because he was still signing that he wanted to go home.  He just didn't want anyone else to play with them.

Not the most productive of therapy sessions.

Anyway, we got home and he had a couple more of those weird freezing/pale episodes, which is the other reason why I ended up turning the fire on and also messing with our thermostat-- much to our cats' delight.  And I wasn't really surprised when Connor had a massive seizure late in the afternoon, and I had to use the Diastat and then he spent the next hour curled into a miserable ball on my lap intent on covering every single inch of my shirt in tears and snot.  I kind of figured the odd episodes earlier in the day were leading up to some culminating event like that.  He finally calmed down enough for me to put him to bed, and then the little guy fell asleep in about five minutes.  Hopefully he'll sleep through the night and have a better day tomorrow.

On the plus side, I did manage to make it to the bookstore and the grocery before all of the weird-temperature-and-seizure fun, so at least I was well supplied with books, tea and Cherry Garcia ice cream to help me recoup from the day. 

You know-- the essentials.

~Jess


 

In Which I Talk About Skating Some More

So this is going to be sort of a short post, because it's nearly one in the morning and I just got home.  I went to the Adult Skate at our local skating rink, which runs from ten until midnight.  It was practically deserted so I got to fling myself around the track without embarrassment, but I should have blogged before I left for skating time.  Oh well.

I would have skated earlier in the day, except for three problems.  The first was that it was nasty outside, which does not make for fun outdoor skating.  The second was that until ten in the evening there are a whole bunch of little kids out on our local rink, and I'm not quite up to jumping over sprawled munchkins yet.  The third was that I'd tried some baseball slides on the asphalt the day before.  I do not recommend this, by the way.  Not only do they tear up your skates really fast, but they also tear up good portions of your skin whether or not you happen to be wearing snowboarding pants.  I'll be sticking with the knee slides outdoors from now on.  But the end result of this fun experiment (beyond the delightful patches of missing skin on my thighs) was that I tore right through my laces on both skates.  So I had to get some more laces and also some toe guards (because the duct tape just wasn't cutting it) before I could skate again. 

I picked up two pairs of laces at the rink-side skate shop.  The first pair is hot pink, and the second pair is black with little skulls all over it.  Because that's what people think of when they see me.  You know, death and destruction.  Because I'm so intimidating and all that.  You've never seen such an intimidating toothpick in your life.

I found out while I was there that the rink (which is much closer to us than the one on post) also allows stroller/wheelchair skating during their family skate time!  I'm excited about this because it's yet another chance for me to involve Connor in a family activity.  Jeremy thinks he might be able to get up on a pair of rollerblades since they have the high ankle supports, so we could all hit the skating rink together!  I seriously love how inclusive and welcoming this area is; roller skating isn't something I would have thought would be a group activity of ours if you'd asked me shortly after Connor was born.  One of the women who worked at the rink was telling me that they have some children with cerebral palsy come in and skate; their braces fit right down into the skates and it's great for muscle strength.  What a fun activity for therapy!

It makes me really happy to think about it!

~Jess

In Which Connor Is Not Sad About Being An Only Child

Thanks everyone, for your comments, e-mails, and kind thoughts of yesterday.  We appreciate all your love and support.

We had a pretty quiet day today.  Connor had his physical therapy and occupational therapy this morning, and they both went well.  He has back-to-back sessions now, which usually leaves him pretty tired but not totally overwhelmed like it would have done a couple of years ago.  He was a bit ornery today, which I'm pretty sure was fall out from the drama of the past week.  Connor's a pretty good barometer for our moods, and we'd also been preparing him for travel and for having a little brother for the past week.  And you know how much this kid loves change-- which is to say not at all.

I am absolutely sure that when we bring another child home we are going to be dealing with some jealousy issues for the first few weeks.  Not that there's much Connor would be able to do except mope about it-- his mobility issues and lack of functional opposable thumbs wouldn't allow him to do anything more threatening.  When we first told Connor that he was going to have a brother, his response was "No.  All done.  Go away."  Obviously he was less than thrilled.  When I told him that the baby's Mommy and Daddy had decided to take care of him and so Connor would not be a big brother soon, the little stinker actually applauded.  While I have no doubt that after the first few weeks of adjustment Connor would love having a brother or sister, clearly he is not exactly sad about being an only child for a while longer. 

Oh well.  I suspect if four year olds were allowed to make decisions on having more siblings there would be very few multiple-child households.  Luckily Connor is not in charge around here.

I think he's not, anyway.  Sometimes it seems like a gray area.

Anyway, so he had a good time despite himself at therapy.  Laura and Jolie pulled out the big guns-- the swings, which always get a smile out of him no matter how hard he tries to convince us he's in a bad mood.  It's really funny how he'll grin until he realizes that you're watching him and then immediately tries to put a serious look back on his face.  By the end of the second hour he'd forgotten about his bad mood and I walked out of there with a tired but obviously happy kid.

Silly little guy. 

~Jess