In Which We Have A Helpful Home Visit

Today Steve, an awesome occupational therapist from Good Samaritan's Children's Therapy Unit, came to our house for an equipment evaluation.  Basically he took a tour of the house, checked out Connor's current equipment, talked with me about things we're having difficulties with, and then suggested ways we can change things to make things easier for the little guy.  Of course our house is already set up beautifully for Connor, but as he gets older new issues will crop up that we need to problem solve.

The biggest reason we asked Steve to come out was to talk about lift options.  Connor is over forty pounds now, and while I can still pick him up by myself in most situations, he's only going to get heavier and I'd like something in place before I start throwing out my back.  I have the most trouble getting him in and out of his shower chair right now, which is pretty low to the ground.  And while it's pretty easy to get him from his bed to his chair, it's a little bit harder going the other direction. 

A Hoyer lift just won't work for us; they're made to slide underneath a bed, and Connor's bed has a solid base.  Installing a system permanently in the ceiling would probably be pretty expensive.  So Steve recommended a system called the Voyager Easytrack, which is strung between two fairly narrow poles and is close to, but doesn't actually touch the ceiling.  Here's a video for those who are interested in seeing it.  Our insurance should cover it, and it will work with Connor's bed.  And since it's portable, we'd be able to pack it up and take it with us to use while traveling, which is a definite plus.  If any readers have used a Voyager or have other recommendations, I'd love to hear your thoughts.

Anyway, we also talked about getting a rolling base for Connor's shower chair and his toilet chair.  Right now his toilet chair attaches directly to the toilet in our hallway bathroom, and every time we have guests I have to detach it.  Once Ellen is home, she'll be sharing the bathroom with Connor and we'll have to move the toilet chair off and onto the toilet a lot more often, so it makes since to have one with wheels that simply rolls over the toilet.  That means we'd also be able to roll it into Connor's room when he's bigger and transfer him to the toilet chair using the lift.  The same thing goes for his shower chair. 

Steve also tweaked Connor's stander a bit to fit him better, and we discussed activity chairs for when Connor outgrows his current model.  It was really fantastic to have him here, and I'm so glad that we've got such wonderful people in Connor's world who help make his life as happy and healthy as possible!

~Jess

In Which I Don't Sew After Midnight

Today I took Connor to occupational therapy, where he quite happily refused to touch anything, and then we stopped by a fabric store on the way home.  Now that the lovely fabric store around the corner from my house is gone, the nearest is in Tacoma, so it makes sense to get my shopping done there while I'm in town rather than making a separate drive.  I picked up three yards of lovely teal satin so I could get started on the bustle for my steampunk roller derby costume.  Even thought the bustle is only going to be knee length at its longest point, I'll use nearly every inch of that entire three yards.  Bustles use a lot of fabric.

Also this is the only piece of clothing I am ever going to make that will actually make my butt look bigger.  It's not like I need a whole lot of help in that department, given the amount of chocolate I consume on a daily basis.  Oh well.

Then I stopped by a coffee shop so I could stay awake the rest of the day.  I'm not addicted to caffeine yet, but if Connor keeps up his current sleeping habits I could easily get that way, dang it.  He's still awake right now, of course, and judging by the amount of sound coming from his room he's likely to stay that way for a while.  Oh well.

I have the pieces all cut out for the bustle now, but I'll wait to start sewing it until tomorrow.  I work on a lot of my projects late at night, but I've found that any time I pick up a needle after about ten in the evening I'm just going to end up stabbing myself with it.  Also my stitches end up really wonky after about two in the morning.  Projects that involve painting or glue are a lot more forgiving, so I'll stick with those late at night.  Despite not sewing, I've been getting quite a lot of work done of my costume lately.  You'd be amazed what you can do with a seven hour or so block of free time.

So at any rate, things are moving right along!

In Which Connor Stays Up Late

Okay, this is going to be a really short blog post, because I am very, very tired.

Guess what time Connor decided to go to bed last night?  Or perhaps I should say, what time he decided to go to bed this morning.  5:30am-- that's what time.  He went to bed at around 7:00pm, his usual time, napped for about an hour and a half and then decided it was Fun Play Time until literally about ten minutes before the sun rose.  Then he napped again until around 8:00am, and then refused to go back to sleep. 

As a result my sweet, happy child was replaced today by Grumpster McSaddykin, the crabbiest child in the whole entire universe.  He went into hyperactive delirious mode in the morning and got steadily more frantic until he had a complete and total meltdown around 11:00, which is when I tried to put him back down for a nap.  He fell asleep almost immediately, but there were Real Tears beforehand, which is pretty unheard of for my kid.  He slept until 2:00 and then woke up and almost immediately had another major meltdown.  Fun times. 

We went to occupational therapy at 4:00-- we were supposed to go this morning but Jolie graciously rescheduled when I called her and asked for a post-nap time.  The kid seemed to be interested in the new toys she brought out, and when I say interested I mean "didn't have a major meltdown when being forced to touch them," which is pretty much all we could ask for today.  He also refused to open his eyes for most of the hour, and in between touching things he kept telling us he was tired and waving goodbye to Jolie.  All in all it was not one of our more productive sessions, and needlesss to say he didn't show off any of his new bouncing skills.  About the only time he perked up was when I told him it was time to go home.

He crashed this evening, so I'm going to take advantage of it and get as much sleep as I possibly can!  Hopefully he'll stay down tonight.  There are only so many days I can run on less than two hours of sleep without getting kind of loopy!

~Jess

In Which We Mess With Connor's Meds Again

So bright and early this morning I rolled Connor into the van and drove up to Seattle Children's to see the neurologist.  Early morning appointments are nice because no one is at the hospital so you tend to get in quickly, but they're kind of offset by all the sitting in rush hour traffic you have to do to get there.

Anyway, Connor's blood levels weren't all back yet-- the only things back were the general workup and the Depakote, which turned out to be on the low range of normal.  We're still waiting on the Lamictal and the Keppra.  In the meantime our neurologist went ahead and decided to up Connor's Depakote.  Once we get the Lamictal levels back we'll discover if we need to lower that medication or not.  It's kind of a crazy seesaw sort of way to manage things, but it can't really be helped.

Oh, and we also discovered that one of his pancreatic enzymes is now reading high.  It's not completely off the register high, but it's high enough that we'll be coming back to the hospital in a few weeks to get it rechecked.  Depakote can apparently cause pancreatitis as a rare side effect.  Wouldn't that be fun? 

Yeesh.

Otherwise things went all right today.  Connor, I'm happy to say, only had one seizure today; after I gave him the upped dose he perked up and seemed to be feeling much better.  It doesn't help that he's got three loose teeth right now (all in the bottom) and also is cutting his first permanent tooth.  When we went to occupational therapy late in the afternoon all he really wanted to do was chew on their vibrating toys.  He ended up completely crashing on Jeremy this evening, which I'm not surprised by.  We had a very busy day and he spent a good portion of the second half of it with his mouth stretched open in a huge, jaw-cracking yawn.  It made me tired just looking at him. 

Here's something weird to think about, by the way.  You know how yawns are contagious and whenever you see someone else yawn you have to yawn too?  Well, Connor doesn't have that mechanism, or at least he hasn't developed it yet.  I've never seen him "catch" a yawn from someone else.  There's an interesting article on Discovery News that covers this very topic.  Interesting!

Anyway, we're hoping that the medication change will give Connor a reprieve from his seizures for a little while.  And also that he won't get pancreatitis.  Because that would be bad.

Yeah.

~Jess

In Which We Have A Nothing Day And It Is Great

Connor had another relatively decent day today; he slept in for a little bit, did a little bit of playing with me and then we headed over to his occupational therapy, where he got to spend time on a swing and interact with some fun toys.  He seemed to be having a little more difficulty controlling his mouth today and was drooling quite a bit, but that could very well be due to the medication change.  Otherwise I'm happy to say that we had a pretty quiet day.  About the most exciting thing that happened today was that I cooked a roast chicken.  Hey-- I get excited about chicken.  Chicken is awesome.

Oh, and also I got some fudge mint cookies, because I consumed pretty much every bit of chocolate we had available in our pantry on Monday after our fun ordeal.  Cookies are pretty awesome too.

Anyway, I'll be sending Connor back to school tomorrow, which I'm sure he'll no doubt appreciate.  So we're back to business as usual!

~Jess

In Which We Get Pictures And Connor Is Kind Of Coughy

Our pictures came in the mail today!  I'm super excited to get the chance to see how Ellen has grown; the last pictures we have of her are from when she was eleven, so it's been a while!  She really looks like a young lady now.  There are a couple of really cute ones of her seeing our pictures for the first time and grinning from ear to ear.  I might frame one of those and put it up in the house.

It was back to the gloomy, rainy weather here so we spent most of the day indoors.  I still have to put all my plants in the ground; since Connor doesn't have school on Wednesdays and I had a derby event this evening I didn't have the chance to plant anything today.  Hopefully the ground won't be too muddy tomorrow and I'll be able to put some of the garden in.

Connor had another good day; he was a little tired and ornery at occupational therapy but otherwise seemed to be fine.  I'm a little concerned that he still has a lingering cough from the cold he had earlier in the month, so I may end up making him an appointment with his primary care manager because he's still doing some pretty good chest coughing and seems kind of fatigued.  His sore throat and runny nose are completely gone though, which is a pretty good thing.  He certainly coughs when he gets up in the morning.  Other than being kind of tired he did a great job at occupational therapy today though-- no coughing there-- so it's hard for me to tell if I'm just being an overprotective mother or not.  I've gotten seriously used to him not doing well over the last few months, so maybe now that he's doing better I'm just paranoid or something.  He's due for his five year old check-up anyway, so when I bring him in for that maybe I can get her to listen to his lungs too.

I need to reset my mom radar for a kid who's not having seizures every minute or so.  It's quite the adjustment!

~Jess

In Which Nothing Much Happens

Honestly today was a pretty uneventful day.

Connor doesn't have school on Wednesdays, so he slept in a little bit and then we went to occupational therapy where he amused himself by refusing to touch a wide variety of toys.  Then we tried out the swing and he only wanted it to go side-to-side, not front-to-back.  He let us know this by showing us his super mad face whenever it went in the wrong direction. 

Someone isn't spoiled or anything.

In all reality it might have been only a mildly annoyed face, but with Connor it's impossible to tell.  Because his facial nerves have a variety of issues (this is what causes his Duane Syndrome and also his inability to chew) he's unable to move the muscles of his face in subtle ways.  As a result all of the expressions he makes are greatly exaggerated because that's the only way he has to get his point across.  It's generally all or nothing with this kid. 

He's so darn cute when he pouts, though!

~Jess

In Which Connor Goes To Therapy And Has Homework

Connor had physical and occupational therapy today, like he does every Wednesday.  Today we were working on a couple of issues that have been concerning me of late.

The first issue is Connor's scoliosis.  Scoliosis, for those of you not familiar with the term, is a curvature of the spine.  Connor has always had a slight curve to the left because that's his weaker side, but since he's started having seizures that involve left-sided paralysis the curve has become more significant.  This is because for up to two days at a time after a seizure none of the muscles work over there, so he slumps pretty significantly to the left.  He also does it now whenever he's tired or isn't feeling well.

As a result, he's got a visible curve to his spine and one of his shoulder blades is rotated out.  Thankfully his spine is still flexible and the curve is still fairly mild, which means that right now he doesn't need surgery.  We're still planning on getting him some form of orthotics to help prevent the curve from getting worse; he's got a consultation for that on Monday.  In the meantime, our physical therapist showed us some positions and stretches we can use with Connor at home to help out his flexibility.  While I'm not concerned about the aesthetic issues involved with scoliosis, I want to make sure that Connor's spine is as healthy as possible and that his lungs and ribcage continue to develop properly.  I figure prevention is the best route so that we don't have to turn to surgical intervention later if the scoliosis continues to develop unchecked.

After PT we had occupational therapy, where we tackled the second issue.  We've been working with the iPad a lot at home, and as a result Connor is using his pointer finger more and more.  However, he's having trouble switching back to using his palm with his other toys.  Keep in mind that Connor doesn't like touching things; his palm is especially sensitive to touch and he avoids it if he can.  Now he has a fantastic toy that responds with him having to do as little as possible.  Why not use the same technique for all the rest of his toys?  So what we're seeing is that instead of grabbing or banging toys like he used to, he's instead barely touching the activating part of the toy with one finger and then expecting something to happen.  Because after all, it works with his iPad!

While it's awesome for us to be seeing that finger isolation, we don't want Connor to start losing the progress he's made in the desensitization of his palms.  So it looks like I'll be balancing out Connor's daily work on the iPad with sensory play focused on his hands.  Things like immersing his hands in various substances that he doesn't want to touch.  No doubt he'll be absolutely thrilled.

It's hard sometimes to know exactly how full to make his days; we can always be working on something.  I usually try and pick two or three issues to focus on at one time, and that way he doesn't get too overwhelmed.  I think we've got our goals set for the next few months; now I just have to figure out some fun ways to get us there! 

~Jess

In Which The House Is Clean But We Miss An Appointment

Today I threw myself into housecleaning, as I've been neglecting it for a number of days and the previous activity I was doing to get my mind off of Connor's medical issues-- looking at children's interior design blogs to figure out how I wanted to do Sylvie's room-- wasn't exactly going to be a good idea anymore.  So I set Connor up with a mobile play area (so I could move it from room to room while I was cleaning), put on a CD of stories from This American Life to listen to, threw on some old clothes and started turning the house inside out.

You know when you get really involved with something after a while you get into a kind of zone and lose all track of time?  Well, I was halfway through mopping the kitchen floor and singing a rousing version of "Rambling Roarin' Willie" at the top of my lungs when the phone rang.  I picked it up, saw it was Connor's occupational therapist calling and suddenly realized that he had therapy at noon and it was now a quarter to one.

Whoops.

So that was not so wonderful, and I felt pretty guilty about it-- especially since Connor's missed a lot of occupational therapy in the past few weeks.  And it's not like I had a good reason this time, like Connor not breathing on me or something.  I'm relatively sure that "I was too busy mopping my kitchen floor and singing rousing versions of Irish drinking songs to check the time or show up to our appointment" would not rank high on a list of great excuses.  I guess everybody drops a ball or two every once in a while, though it doesn't really make me feel any better about it.

But on the up side, my kitchen floors look great. 

Connor had a perfectly fine day health-wise, though he spent a good portion of it pretty bored because I was using the time I would normally be playing with him to clean our bathrooms instead.  So he was kind of ticked about that.  He's definitely feeling about eight hundred times better than he was last week, though, as he was extremely vocal today and he had been slipping into this kind of scary apathy during the worst of the seizures.  He hasn't had one since his dose of Ativan on Tuesday, so that's pretty great!  I'll take a bored, whiny, loud kid over an exhausted, zoned-out, silent kid any day.  I did do a good bit of laundry today, so he perked up for that.  You all know how that kid loves the laundry folding.

As you can see, Cricket helped out with the laundry too.  I had to rewash all of our dishcloths. 

Cats are helpful like that.

~Jess

In Which We Film Some More, And Connor Is Pouty

So this morning was a continuation of the grand filming saga, only this time it was on the army post and with a whole bunch of other people-- basically we were filming one of the  meetings (called a Comprehensive Transition Plan, or CTP meeting) that the training video will be focusing on.  The most basic explanation I can come up with for these meetings is that they're sort of like the adult military version of an IEP meeting-- representatives from each of the areas of a soldier's care get together with the soldier (and his or her family, if relevant) to touch base with each other, discuss where the soldier is now, set goals for the future, and determine how best to get to those goals.  I'd direct you to a neat explanation of this process on the Warrior Transition Battalion website but I can't find one (this is the best I could come up with), which is probably why they're making the video in the first place.  That would make sense.

The film crew is moving on to film some other families at a couple of other locations around the country, and then they've got to edit all that stuff and put it together, so don't expect the video out any time soon.  And it may be pretty dry viewing, as it is a training video.  And also we probably won't play a prominent role in it.  But I'll let you all know when it's released, as several of you have asked.  Just expect a performance (at least on our part) less of the Academy Award-winning caliber and more of the Razzie Award variety.

Anyway, Connor and I arrived sort of at the last minute because we couldn't find our car keys-- they'd been misplaced in the whirlwind of outside filming the day before.  I eventually found them in the garage, sitting on a large pile of wood for the deck we've been in the process of staining.  This was not exactly the first place I thought to look, so it took a while to locate them.  Then the meeting was upstairs, so the key to the stair lift had to be located so that we didn't have to use the alternate method of getting Connor up the stairs-- the BBG (Big Burly Guy) method.  But we managed to squeak in just before filming started.

After we were finished (Jeremy still had filming to do at the gym, but Connor and I got to leave after the meeting was over) the little guy and I headed straight over to occupational therapy, where Connor spent the first half of the session with a huge pouty face on.  It was hilarious-- he wanted to play with his toys, and he was obviously having a good time, but he was still put out about the events of the past two days so he was trying his very best to look like he was miserable.  So basically he'd play with his toys, and every once in a while you'd see a smile creeping up onto his face, but then he'd glance up, see me, and immediately the pouty look would reappear.  He couldn't keep up the charade any more after we pulled out the big guns-- a swing!  That kid loves swings.  So he lightened up and we got to hear a few of those delicious giggles. 

The lack of smiles might also be because the kid's feeling pretty tired right now.  We started his new seizure medication on Tuesday-- it's a drug called Lamictal-- and we haven't begun stepping back any of his other medications.  The side effects in these situations tend to be cumulative, and all three seizure medications he's now on can cause fatigue.  So Connor actually took a two hour nap today, which is all but unheard of in our household now.  I took a nap too-- the last couple of days have been surprisingly tiring. 

I don't think I'm cut out for a film career.

~Jessie

In Which We Brush Connor

We have a new routine to add to our at-home therapy now.

We are brushing our son.

Sounds weird, doesn't it? I'm not referring to the kid's hair. Brushing is this technique advocated by many occupational therapists to decrease sensory integration issues. The technical name for the method is the Wilbarger Deep Pressure and Proprioceptive Technique, but everyone just calls it brushing for obvious reasons. Who want to say that mouthful every time they mention it? Basically one takes a special kind of brush with soft bristles and then runs it slowly over the back, arms, legs, hands, and feet of the child using firm pressure. Then joint compressions are administered to the fingers, wrists, elbows, shoulders, ankles, knees, hips, head, and sternum. We're to do this every two hours while Connor is awake. It's supposed to help with his extreme tactile sensitivity, hopefully allowing him to tolerate more stimulation. If you'd like to see someone using this technique, here's a video.

So we started on our brushing regime this afternoon. They've been doing it at school for a while so Connor was pretty comfortable with it. The cats, however, didn't care for it. Cricket seemed to be of the opinion that I shouldn't be brushing Connor; I should be brushing her. She kept coming over and flopping down on my feet to make sure that I didn't leave her out or anything. Connor thought this was hilarious. I ended up taking turns with them: I'd brush Connor's right leg, then brush Cricket for a second. Left leg, Cricket. No doubt Cricket needed some sensory work done too.

Crazy cat.

At any rate, we'll see if this helps Connor become less defensive about his hands and feet. Hopefully he'll be able to tolerate more textures as time goes by. While there aren't a whole lot of studies out there about the effectiveness of brushing, many parents and therapists swear by it. It's certainly not going to hurt anything, so we'll give it a try and see whether or not he gets something out of it! Anybody else tried this with their kids?

Still. Brushing my son. Weird.

~Jess