In Which Connor Has Some New Shoes

Connor got his new ankle-foot orthotics today!  They're pretty spiffy looking and with their blue, green and black mottled foam and their bright orange straps they coordinate pretty well with his hearing aids.  I need to get him some new socks that come up higher on his legs as the AFOs are mid-calf height, but otherwise they're ready to use.

He won't be wearing them all day for a little while yet; they'd like us to break him in slowly on them.  So he'll be wearing them during his home standing time and for his stretching until Thursday when we can get some more specific instructions from his physical therapist about exactly how she'd like his wearing schedule to run.  He seemed pretty excited about them today; he was actually up in his stander a little over the time he normally is while he watched his "hat music" again today because he wasn't protesting at all.  I think they give him a nice sense of stability that he's probably been missing.

We'll try the walker again with them on in a few days and see if they help with that too.

While he's otherwise in excellent health, the little guy's eczema is acting up in a big way right now.  The outside and inside of his right ear, a strip on his neck, and a bit of the skin around his temple all look like they've been burned as they are bright red and the skin is peeling off.  I'm going to try and get him into the doctor soon to get something to help with the rash and to make sure that it isn't something else.  Lotion doesn't really seem to be helping, and it certainly looks very uncomfortable.

Otherwise he's doing great!

~Jess

In Which We Finally, Finally Figure Out What The Heck Has Been Going On

We kept Connor on the Benadryl this morning and while he was rather zonked out and drowsy, he seemed to be doing okay. When the Benadryl wore off in the afternoon, he started coughing and rubbing his eyes again so we gave him another dose and called his pediatrician in Seattle.

As a result Connor is now the proud owner of a shiny new epipen. Joy of joys.

His doctor also asked us to take him into an acute care clinic. We were a little concerned about all of the germs that float around in the waiting rooms of those places, which due to the long wait time would give Connor ample chances to pick something up. Luckily his doctor's office from three years ago (when we lived in Texas) was fantastic and allowed us to bring him in right away. We only spent about five minutes in the waiting room, and the only other kids in there were there to get flu shots and weren't actually sick. Whew! So we've got a prescription for a steroid now and we're going to pick up some Zyrtec as well, which will hopefully not make him quite so drowsy.

Armed with an epipen and Benadryl, we decided with the doctor's permission to perform an evil, evil experiment on the little guy to try and rule out some triggers. First we took him out to a restaurant and allowed the Benadryl to wear off. No problems there-- he was just fine. Then we took him over to my sister's house to see if their cat and two giant dogs would trigger an attack. No reaction. So we took him back to the house, from which my parents had removed all really strong-smelling items and aired out by opening all the doors and windows. And the little guy was fine! No problems. Finally we went out to the garage, grabbed a bag of lavender, which Mom had been putting into little bags at a table in the living room earlier in the day to throw at the bride after the wedding, and opened it up in the room.

Five minutes later he began coughing and rubbing his eyes, and his nose stopped up. Bingo!

So all of the lavender is back out in the garage, and we will be getting an epipen for school because my child decided to have an allergy so strong that being in the room with lavender will cause his eyes to swell shut. Lord knows what he'd look like if someone used it in soap or laundry or God forbid, put the essential oil on something and then touched him. My child would pick something to be severely allergic to that's totally weird. I mean, I know some people are allergic to flowers, but this is ridiculous. Of course, he couldn't possibly be midly allergic to anything, because that wouldn't be nearly dramatic enough. What's more, it's not like he hasn't been exposed to lavender before-- I've used it in his sensory therapy sessions in the past. He's always hated it, but it's never caused his face to start swelling before. This makes me wonder what exciting new allergies he'll potentially come up with as he gets older. I can't wait.

It also explains why the heck there didn't seem to be any pattern in when he'd break out in hives/eczema. I have very old lavender in two of my bathrooms, and when Loki gets a hold of it he rips pieces of it up and I've picked them up with my fingers and later touched him. The grocery store has bunches of fresh lavender in the flower section. It's a common ingredient in laundry detergent and cleaning solutions-- probably someone at school uses a bath or hygiene product that contains the stuff. It's everywhere. And he gets this reaction just from inhaling the scent of the stuff. Fantastic.

Well, at least we have some answers now! And darn it, I like the plant a lot-- I've got a big pot of it outside on our patio. Oh well. I'm just glad it wasn't the cats, because despite how neurotic they are, they're family so that would have been really hard.

Would anyone in Seattle like a potted lavender plant? I think it needs a new home.

~Jess

In Which I Do Entirely Too Little

Today was a day in which I was supposed to get a whole lot of things taken care of, but instead I mostly lazed about and spent quality time with Jer and Connor, totally devoid of any desire to do anything productive. I'll have to get up pretty early tomorrow morning to get everything finished before it's time to leave for the airport, but it was worth it to have a lazy day with the guys. I don't have nearly enough of those.

I did get a few things done; I dropped off yet more paperwork needed to buy the new house and set up the plumber to get the bad leak outside fixed before the appraiser turns the water on. I also stopped by the bookstore to get a couple books for the airplane. That was pretty important. Now I just have to get a couple of nit picky details taken care of. Like packing. Packing would probably be a good idea.

Connor's face is almost totally back to normal-- you can barely see a pink outline of where the worst spots were. Hopefully in a few days they'll have totally disappeared. He seems to be much more comfortable and happy, which is nice. It was hard to see him itchy and miserable for so long. I'm still a little mystified as to the cause of the breakout in the first place, but I think we're going to stick with the eczema explanation for the lack of a better one.

Oh-- I just heard Jer's alarm go off. We set ourselves a bedtime for tonight because we've been staying up too late recently. I'd better go; I'll post tomorrow from Texas!

~Jess

In Which Connor's Toothpaste Is Not, In Fact, The Culprit

Connor's mysterious hives are back.

Not only that, but the skin on his hands, especially around his thumb, is so dry that it's cracking. The dryness and the total lack of a pattern surrounding the breakouts makes me wonder, yet again, if this is actually an eczema outbreak centered on the parts of his body that are wet pretty often: his face, hands and stomach.

So I'm dosing him with Benadryl again and treating the sites with some hydrocortisone. We'll see if that helps. I sure hope that does the trick; the little guy looks miserable. Otherwise it'll be back to the drawing board.

It's finally starting to look like fall around here; the rain has started and doesn't show any signs of letting up. The Pacific Northwest rainy season always makes me want to go into hibernation mode-- I find myself making three or four cups of tea a day and you can track my movement through the house by where blankets are puddled on various pieces of furniture. For whatever reason, this weather seems to have the opposite effect on the cats. They're going absolutely bonkers: bouncing around the house after each other, knocking over lamps, and forming little furry whirling dervishes. Cats are not known for their logic, however, so I probably shouldn't be surprised.

When they do finally settle down they usually do so in highly inconvenient places; Cricket favors my living room chair and gives anyone who attempts to move her a look that informs you she'll be spending the next several hours plotting their demise. Loki, on the other hand, sprawls out in the middle of the hallway, sometimes pressed half up against the wall in what looks like the most uncomfortable sleeping position ever. When Jer wheels down the hallway he gets up at the last possible second, whisking his tail out of the way of the wheels and strolling off nonchalantly as if he meant to get up just that very moment and wasn't actually in danger of being run over at all. One of these days he's not going to flick his tail out of the way fast enough, and Much Sadness Will Occur. Oh well.

Crazy cats.

~Jess

In Which I Discover An Alien Conspiracy

Well, little guy has progressed beyond what could be explained as eczema and is now well into "allergic reaction" territory. He looks like a prizefighter after the big match-- one eye is starting to swell. I have no idea what caused this particular reaction, but if he's still not looking better by tomorrow evening I'll take him to the doctor on Friday.

We enjoyed our nice, easy day around the house. Jer's got another appointment requiring van transportation tomorrow, so my mother-in-law will be taking the little guy to school while I go along for the ride. It's going to be really nice once we have our own transportation, as the van always comes at least an hour to an hour and a half before Jer's appointments to make sure they have plenty of time to find the place. That's time we could be sleeping! Oh well-- we should be picking up the van on Saturday. Can't wait!

On a crazy side note; you may remember me discussing Tubie the alien from one of the scariest children's books I have ever seen. Well, when Connor's new earmolds for his hearing aids came, there was a pamphlet in the box about Toobie the earmold tube, who cautions kids not to pull out their earmolds by the tube. And other than the crazy buck teeth Toobie is sporting, they look exactly the same. Tubie and Toobie.

Coincidence? I think not.

~Jess

In Which I Have Married The Bionic Man

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

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

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

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

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

~Jess

In Which Connor Sports Some Spots

Poor Connor.

Every once in a while his eczema comes back with a vengeance-- usually when I think it's gone for good and I've gotten complacent. Currently he's covered all over his torso and back with teeny tiny little red hives-- too small to see in this picture. They started on the backs of his knees and kind of spread from there. I feel bad for him, though he doesn't seem to mind them.

What you can see in the picture is the irritation around his g-tube. This is the first time he's had a major breakout since the g-tube was installed, and he's broken out especially badly around that area. It looks really sore. I'll be keeping him in just a diaper at home to expose his skin to air as much as possible. Hopefully it will clear up in a week or so.

Jer and I will go down to the hospital in Seattle tomorrow morning to get his stitches and his big, chunky casts off. They'll be replaced by some removable casts, which means that for the first time in over a month he'll be able to bathe his feet! This is a job that will probably fall to me, as I'm not sure he'll be able to bend far enough to get to them. Can't wait--I'm sure they currently smell fantastic.

He still won't be allowed to put any weight on them for at the least the next two and a half months, but the casts should be lighter and make it more easy to maneuver his legs, which will be nice.

I went and looked at a couple more rental houses today, with little luck. One would have been perfect except for the fact that all of the interior doors only gave Jer's wheelchair 1/4 in clearance on either side. Even given Jer's impressive steering abilities, I don't even want to think about what those doorways would look like after just a couple of months of us living in the house. The other house I looked at once again had bathroom issues-- these were entirely too small and had glass enclosures, which are a problem when you are trying to get into a tub with two giant casts on your feet. I'm going to check out another house tomorrow afternoon-- wish me luck!

The perfect place is out there somewhere-- I know it!

~Jess

Because We Didn't Have Enough Problems As It Is

We hit a new milestone in our household. Connor has officially developed his first ever case of diaper rash.

I'm not sure exactly how we've managed to go without having any all this time-- probably we've managed to avoid it thus far due to our lotion regime in managing his eczema. But now, due to the solid month of GI issues Connor has been experiencing, we are apparently making up for lost time.

The poor kiddo has got it bad. Not only does he act like the super sensitive no-scent soft wipes I'm using are actually Brillo pads and his anti-diaper rash cream is composed of acid, but he doesn't want to sit down at all. This combined with an extremely sore tummy made for a very sad day-- and night last night, as every time he uses the restroom it makes everything flare up down there.

Due to little sleep last night and extreme screaminess today, he wore himself out pretty well. We set him down (gently) in his chair as both of us needed our hands free, and five minutes later he was out. Hopefully he'll sleep through the night and feel better in the morning.

We kept him on the ibuprofen today, which seemed to help a little bit, but I really wish the little guy could catch a break. It's been a rough month for him.

~Jess

Medical Monday: Eczema

It's that time again: Medical Monday! I blog each Monday about a different condition Connor has and then post a link to it on the side bar as I go. This way people can get a better idea of what Connor deals with on a daily basis and his family and friends can understand what I'm saying when I call and spout ridiculously long medical terms.

DISCLAIMER: I would like to emphasize for those people who stumble upon this blog that I'm not a doctor, and I have no medical experience other than the approximately 900 doctor's appointments I've been to in the past two years. I just know about these things in relation to how they apply to Connor and not anyone else's child, so if you want accurate info on this sort of thing, please please please ask your doctor or go to the medical library instead of looking it up on the Internet. The library is your friend.

Today we're going to talk about eczema.

Eczema is one of the few rather common things that Connor has. He doesn't even have the really rare variety or anything, which is sort of a relief. So what is eczema, anyway?

In a three word explanation: It's a rash. A red, bumpy, itchy rash that can cause cracked, weepy, bleeding skin and is not a whole lot of fun. There are a number of types of eczema and related skin conditions, but the one Connor has is the most common. It's called atopic dermatitis.

Atopic dermatitis is a skin condition that has some hereditary factors. In Connor's case, he has members on both sides of the family that have issues with a variety of skin conditions, and though neither Jer nor I have any issues with our skin, Connor is another story. For the first six months after he was born, I had to use unscented shampoo, creme rinse, lotion, and deodorant on myself or he would break out in a rash just from skin-to-skin contact. I had to wash my house with vinegar-- just being in the room with bleach would make him breakout. I still use unscented laundry detergent on all of his clothing, though he has improved to the point where I can use scented bath products again, thank goodness, and can even use them on Connor if they're gentle.

Connor's rash can be triggered by more than just contact with scents and chemicals. It can also appear when it gets cold or really hot outside, when the seasons change, when he's under stress, or when we travel. He tends to break out in it on the back of his knees, inside his elbows, under his armpits, and on his face-- especially behind his ears. He'll go for long periods with his skin being completely clear, and then all of the sudden will break out again.

So how does having eczema affect Connor? Well, there's a 50-80% correlation between having eczema and developing asthma. Since there is a history of asthma on both sides of the family (though it skipped Jer and I once again) we have to make sure to keep a close eye on Connor. He doesn't show any signs of it thus far, but he could still develop it as he grows up. Connor's eczema is also obviously uncomfortable when it flares up-- it's red and itchy and irritating. Other than infection if he scratches himself too much (which, due to his motor skills, is rather unlikely) it isn't otherwise a threat to his health.

How do the doctor's treat Connor's eczema? Well, we slather the kid in lotion on a fairly regular basis-- especially when it looks like he's going to have a flair up. Holding him then becomes rather like trying to corral a greased pig, so you have to be careful, but it all soaks in pretty quickly. If his flair ups get really bad, we have steroids we can put on his skin, but thankfully we haven't had to pull those out in over a year.

What's the prognosis for Connor's eczema? It has improved immensely since he was born; he seems to have built up an immunity to many of the things that triggered it before. He still has mild break outs when he's stressed, when someone who holds him has on particularly strong perfume or lotion or is a smoker, or when we travel, but we usually have a long break of smooth, happy skin in between those flair ups. Since he's improved so much already, it's likely that he'll continue to improve, though he may never be entirely rid of the issue and it may flair up again at adolescence.

Here's some resources about Connor's type of eczema:

MedicineNet-- Atopic Dermatitis

NIAMS-- Handout on Health: Atopic Dermatitis

American Academy of Dermatology-- Eczema/Atopic Dermatitis

~Jess