In Which I Spend Way Too Much Time Decorating

Connor had a seizure (he's still getting over that cold) before school today and so I let him take a short nap on my bed while I got ready for the day.  We'd been back there for about ten minutes when I became aware of a smell filtering through the bedroom door.  This was not a pleasant smell.  It was more of a Something Is Very, Very Burned And Or Possibly In Flames Right Now kind of odor.

So this morning Eden discovered that if you put those vegetarian buffalo wings in the microwave and they are not hot after two minutes, which is the heating time on the package, it is not a good idea to put them in on high for six more minutes unless you prefer your fake chicken wings hot enough that they are actively on fire when you take them out.  Thankfully there was no harm done except for the fact that the veggie wings had to be put out in the sink and were inedible lumps of charcoal and my entire kitchen is now heavily perfumed in Eau De Charred Soy.  Yum.  Any suggestions on how to get the smell out of the microwave?

After I got the kids off to school (and then returned to Eden's school with a new outfit as her old shirt apparently smelled rather strongly of burnt veggie wings) my dad came by and we got to work hanging the wall sconces I bought for the master bedroom a few weeks ago.  Apparently what happens when I don't write for five months is I spend all that time and energy redecorating instead.  I've been slowly but steadily redoing our bedroom to make it more functional and welcoming, and I've pretty much got it the way I want it now.  Since Jer hasn't been home I've been making all of the decorating decisions, so the room is quite a bit more feminine than it probably would have been otherwise, but I think he'll probably be able to live with it.

Wall Sconces of Glory

So now I have a shag rug in there, and a super comfy zebra print chair, and a whole station with an electric kettle for tea and hot cocoa and a nice little plate with various kinds of chocolate on it, and lots of books, and plants (my bedroom is a cat free zone, which is why my plants are not all little chewed nubs) and my computer, too.  I'm currently wrapped up in my super fuzzy throw, sipping hot cocoa and stuffing my face full of Andes Mints while I'm typing, and since there's a bathroom back here as well I'm seriously wondering why I even need the rest of the house.  I guess I would eventually die of scurvy or something if I never came out of my room again, but it would take a while.  I've got a lot of chocolate back here.

Squids Make All Spices Taste Better

So anyway, Dad and I put up the wall sconces, and then I stood around for a little bit being proud of them and trying to figure out how to work every conversation I have for the next week around to wall sconces so I can talk about them, and then I got a phone call from Connor's school because his g-tube had accidentally been yanked out during a transfer and they needed me to come put a new one in so I had to stop daydreaming.  Hey, it happens.

After that we went to PT, where Connor tried out a new walker, and then we came home to find a package on the doorstep with my new food-safe tins I ordered to put all my spices in (told you I had the redecorating bug).  I spent Connor's entire nap time hanging my spice rack (two Gamble bottle crates hung vertically on the outside of my pantry wall) and transferring over all my spices to their new containers.  Then I hung a gilded squid over the whole mess, because squids are awesome.  See?

So now I can find all my spices, which will be really, really nice; this arrangement is a vast improvement over their previous corner cabinet home.  The rest of my house may look terrible (with the exception of the bedroom wall sconces, which look awesome) and there's a rather odd lingering smell of burnt buffalo spices throughout the whole place, but at least I'll be able to find my za'atar when I need it!

~Jess

In Which We Enjoy The Sun And Put Connor Through Calisthenics

Connor had a tiny seizure today, but we're not sure if it was because he's getting sick or if it's because he got his noon medication a bit late.  He did a whole lot of throwing up today too.  So we'll see how he feels tomorrow.  If he is coming down with a bug I hope he's not sick for their whole visit; that would be pretty sad!

Otherwise the day went well.  It's lovely having my parents up to visit, and we spent a lot of the day catching up and just exploring Puyallup.  They brought absolutely fantastic weather with them; we took full advantage of the mild temperatures and gorgeous blue skies and stayed outside as much as possible. 

We're actually supposed to have a bit of a hot streak here this week, so we might not be spending quite as much time out of doors the rest of the week!  Anything over 75 degrees or so is a bit much for Connor to be out tooling around in.

I also will probably actually have to water my plants for the first time this summer.  It's been a pretty wet season!

Connor also had his first physical therapy session with his new PT, and it went really, really well.  I was very impressed with her; she seemed extremely competent and put all his joints through their paces to get a good baseline and figure out what we need to work on.  I think she's going to be very good for him! 

We'll be seeing her once a week during the summer, and then once Connor hits school again we'll probably drop down to once a month, since he'll already be in school for six hours a day so PT on top of that would be a little much.  I'm excited to see what new things the little guy will be learning over the next few months!

~Jess

In Which I Have A Birthday

Today was my birthday!  I am now officially somewhere between the ages of 25 and dead, and I plan on sticking to that age for the next several decades.

I spent my birthday being a mom, which is pretty much what I do every other day of the year.  But that's okay; I had a great time with my little guy.

And also the day involved a lot of chocolate, which was awesome.  Chocolate is the official food of birthdays as far as I'm concerned.

Connor and I went to physical therapy in the morning, and then stopped for lunch (and chocolate) and to pick up a new book, because a birthday without a new book would be no kind of birthday at all.  Then it was off to the hospital, where we met up with Jer in the Orthopedic waiting room.  We spent about a half hour talking with the doctor, interrupted every two or three minutes by a round of ear-piercing shrieks from Connor.  The little guy is expressing how much better he feels in a big way, at the moment.  I'm pretty sure you could hear him from the waiting room. 

So the end result of the exam was that yes, Connor is partially dislocating his knee, but we don't have to worry about it!  Turns out that everything is just kind of loose in there because that's just how he's made, and so he's not injuring anything by slipping it in and out of the socket.  He doesn't need braces or surgery, and as long as he's not experiencing any pain he can pop the thing in and out of place all day if he wants to.  So that was fantastic news.

I guess we've just got a little Houdini on our hands-- bet he could use that trick to get out of some tight spaces!  And also he can add this to his bag of Awesome Things To Present For Show-And-Tell at school.  Showing off a partially dislocated knee would beat out little Johnny's Pokemon card collection or Susan's pet goldfish every time.   

So the rest of the day was spent quietly at home; Jer brought me Pad Thai for dinner from our favorite local Thai restaurant, and it was delicious.  I spent some time reading, working on sewing projects and just generally relaxing with my family. 

I think that's a pretty good way to spend a birthday!

~Jess

In Which Connor Is Amazing!

Connor had a great day in therapy today!

Connor doesn't have school on Wednesdays, so those are his big outside therapy days.  Connor now has back-to-back PT and OT, which is pretty intense!  This is a schedule that would have completely exhausted him last year, but this year he hasn't had any trouble with it.  Other than a mild round of poutiness halfway through, he did really well.

He spent quite a bit of time on the swings today, which is always a favorite pastime.  We saw a couple of new things today while swinging, though, which were pretty exciting!  Connor was using one of the typical plastic bucket toddler-type swings, and it was suspended just low enough that his feet could rest on the ground.  He actually started using his feet to push himself around and make the swing go!  You could tell he was concentrating really hard to figure out how to deliberately straighten his knees out and push off to get the swing started, and then to pull his legs in so that his feet wouldn't brush against the ground.  He only did it a couple of times, but that's a great start.

The other exciting thing that happened was that Connor decided to hang on to the rope attached to the swing!  This is fairly rough stuff, and so it's some pretty good sensory input and normally we would have to force him to touch it.  This time he did it completely voluntarily!  He was wildly praised for it, of course, so hopefully we'll see some more of that.

I am so proud and excited at how far he's come just over the last few weeks.  The fact that he's learning to consciously bend and straighten his knees is a huge step towards standing on his own, and the strides that he's made in sensory work have been nothing short of amazing. 

I can't wait to see what my big boy will do next!

~Jess

In Which Connor Gains Some Skills!

As you may or may not know, Connor used to be tongue-tied.  Ankyloglossia is the technical term for this, if you'd like to look it up.  Basically the little band of tissue, called the frenulum, under his tongue was too tight: so tight that he couldn't even stick his tongue out of his mouth.  Due to the wide variety of other medical issues we were dealing with at the time, we waited until after he was two years old before we had it corrected, so he wasn't able to really move his tongue around his mouth at all until he was two.

That just makes his new habit all the more adorable. 

Whenever Connor is concentrating very hard on doing something now, he sticks his tongue out.  And not just a little bit out, but way out.  Think Michael Jordon.  Anyway, it's really, really cute and it makes me giggle every time I see it. 

And we've been seeing it a lot recently, because the little guy has been picking up some new skills!  One of the things that's new is that awesome torso twist in the picture above.  Think about all of the coordination this involves; he has to see and focus on the toy, twist his torso, reach across midline, and push the yellow button (the green one only sounds one note, and he wants the toy to play music) to get the toy to play.  He's pretty accurate!  The torso twisting is his newest skill, and it's really exciting because it means he's really getting comfortable coordinating his movements!  He much more confident about twisting to the left and using his right hand than he is about twisting to the right and using his left, but maybe that skill will also come in time.

He's also making some big jumps on the sensory front!  Check out this video-- and that adorable tongue once again-- of him playing with a vibrating pig toy while sitting on a swing at physical therapy today!  He hadn't quite figured out how to activate it yet; he knew exactly where the button was but he kept trying to grab it and pull instead of pushing it so he needed a little help initially.  By the end of the PT session he was really jamming on that button, though!  He also very quickly figured out that if the pig giggled before it started vibrating, than it wouldn't be playing music and he needed to hit it again.  This is extremely encouraging not just because he's allowing both hands, including that super-sensitive left hand, to rest on the pig (a task that would have caused a total, teary-eyed meltdown a year ago) but also because it demonstrates that he's problem solving.  In the past it's usually taken him a couple of weeks to figure out how to activate a new toy even with coaching and reinforcement, but today it only took him about forty minutes! 

I can't wait to see what he's sticking his tongue out about next!

~Jess

In Which Jeremy Takes A Stroll

Great questions, people! I'm not sure how many Jeremy will answer tomorrow, but he'll get to them all eventually!

I spent a good portion of today at the mall, where I found a store with a 90% sale going on, believe it or not. I picked up a really pretty silk dress for three dollars. Now that's what I call a sale! Perhaps I should go to mall more often.

In other news, Jeremy had a meeting with a lymphologist this week. A lymphologist, for those not familiar with the term, is a person in the medical field who specializes in the lymphatic system. At any rate, Jeremy was there to possibly be fitted for some special compression socks to help minimize scar tissue and to keep the swelling in his feet and legs down. Basically they're like knee-high super control pantyhose made out of spandex or lycra.

Unfortunately according to the lymphologist Jer's feet and legs are still too swollen to be able to use the compression socks. So she's going to make up both a lymphatic massage to help increase drainage and also a series of bandages for him to use until the swelling goes down enough that he can fit into the compression socks. Basically he'll look like a mummy from the knees down.

A mummy wearing velcro sandels. No really-- you can't wear closed-toe shoes with the bandages. It'll be like some sort of B horror flick: Ramses Goes To The Beach or something.

He also had a meeting with his physical therapist, and she was highly impressed by how well he's standing and moving around! She told him to be up on the crutches as much as possible, so he took her at her word and when I dropped him off at the gym today, he left the wheelchair in the van and spent his entire workout time without it! It's amazing to see how much he's improved just in the last couple of weeks. He tried to get around using a couple of canes at PT, but it didn't work out very well; he's not stable enough for that. So he's using crutches for now, and preparing for the future by trying to find a martial arts school that teaches the art of cane and walking stick fighting.

That's my husband.

~Jess

In Which Connor's New Medicine Doesn't Work

This afternoon Connor was sitting and playing so nicely with his toys that I had to take a video to show you! Ignore my piles of clean laundry in the background.

Anyway, the really cool thing about this video is that not only is Connor sitting well totally unsupported, but he's actually reaching across midline for a toy without losing his balance. Jeremy has to help him lean forward a little as he's not sure where in space the toy is, but otherwise he does remarkably well, even rocking back and forward a little. He sat up and played with various toys for about twenty minutes straight-- this is towards the end of that time period. It's amazing to see how far he's come in such a short time, and I'm excited to see where he'll be in a few more months!

So that was the good part of the day. About fifteen minutes after I shot this video Connor had a seizure. It actually took us a minute or so to figure out that he was having one because he was sitting next to me on the futon with his Annie Ooo toy in front of him and he continued trying to play with it while he was seizing. Or at least he did until he quit breathing, which is when we realized he wasn't just leaning against me because he was tired. I lay him down and gave him nine or ten breaths-- he was only not breathing for about a minute. He came out of it, had a good cry, and went to bed, which is where he is now.

I'm really disappointed because we'd hoped that his new medication would stop his seizures, and evidently that's not going to be the case. At least this one wasn't very bad. I also feel guilty because we didn't realize he was having one despite having seen so many of these, and also because I sort of feel like maybe he had it because we pushed him too hard today on the physical therapy front. It's hard to know what triggers these seizures, or if there's really any external trigger at all.

Oh well. Sometimes I feel like we're always taking two steps forward, one step back around here. It's slow going, but we'll get somewhere eventually; I just know it.

~Jess

In Which I Warn You That This Is Another Post About Poop

This morning we drove to Jeremy's first physical therapy session. Basically it was an assessment where the PT asked about Jer's medical and surgical history, took a close look at his feet and leg, and talked a little bit about what he's already doing. Then we set up appointments for the next month. Jer will be going to physical therapy there three times a week and also continuing with his exercise regime at the YMCA. We're hoping in another month or so he'll be able to start using some forearm crutches and will be able to get out of the chair! Hopefully with the amount of work he'll be putting into building back up muscle and improving flexibility we'll see some quick results!

And that, if you are not interested in hearing about poop, is the last paragraph you should read in this blog entry. Really. Go look at pictures of cute kitties or something instead of reading on.

You can't say I didn't warn you.

Over the last couple of days Connor's appetite has dropped off, and when he started throwing up this morning I figured that the problem might be, joy of joys, impacted bowel. You can read more about this scintillating topic by googling it, but I'm not going to go into too much detail. At any rate, I donned my trench coat and fedora, took a trip to a Walgreens I am now never planning to set foot in again, and bought another pack of pediatric enemas. The day just went downhill from there.

At any rate I believe that I might have solved the problem, though if things don't clear up in the next few days I may need to bring him in to make sure he doesn't also have some sort of infection going on. There are many, many things I didn't realize I was signing up for when I became a parent. Sticking various medically recommended objects up my son's rectum is definitely one of those things that was not mentioned in any parenting book I remember reading. There are a number of other things I don't remember seeing in there, too. I believe I may slip an addendum in the back of What To Expect The First Year.

We could title it Chapter Twenty-Seven: When Things Go Horribly, Horribly Wrong. We could break it up just like the rest of the chapters, each section dealing with appropriate topics. I'm picturing something like this:

FEEDING YOUR BABY: Unconventional Diets

Determining The Nutritional Content Of Things Baby Ate Off The Floor * Cat Food As An Important Source Of Protein * What To Do When Baby Decides To Only Eat Things That Are Purple And Start With The Letter W * Identifying Things You Remove From Baby's Mouth * Proper Treatment Of Laundry Stains After Baby Eats An Entire Box Of Crayons

WHAT YOU MAY BE CONCERNED ABOUT

Baby Smears Poop In Your Hair In A Public Area * Proper Disposal Of Spit-Up After You've Caught It In Your Hand * Enemas As Weapons Of Mass Destruction * Baby Throws Poop On The Ceiling * Baby Throws Up On Santa Claus * Baby Learns The F Word And Thinks Your Reaction Is Funny * Removing Small Objects From Baby's Nose

WHAT IT'S IMPORTANT TO KNOW

Proper Toxic Waste Disposal * The Gas Mask As Fashion Accessory * How Much Ben And Jerry's Ice Cream and Hard Liquor Is Required After Baby Goes To Sleep To Erase All Memory Of The Previous Events Of The Day

I am especially fond of the last entry under "What It's Important To Know." There'd be a handy trauma scale showing correlation between events that occurred during the day and the corresponding type of ice cream flavor and variety of alcohol required to achieve proper amnesia. I believe this evening would probably rank somewhere between Cherry Garcia washed down with shots of Vodka and Chunky Monkey with Everclear. Since I don't really drink I'd just have to double the amount of ice cream I'd eat to achieve similar results. What else should go in this addendum, do you think?

Um, anyway, I got way, way off topic there but the point I'm trying to make it that it was not a particularly fun day for me. And I'm pretty well 100% sure it was not one of Connor's best days either.

Good night.

~Jess

In Which Connor Still Doesn't Feel So Hot And Jer Prepares For Some Intensive Therapy

Connor is still, sadly, feeling a little under the weather. He has been experiencing some GI issues, and when I say GI issues, I mean Rabid Martian Tooties of Death, along with other problems in the diaper department too disgusting to mention. Other than his incredible toxic waste output and a tendency to tire more often than normal he seems to be feeling okay though, so hopefully this will be over really, really soon.

Either that or I'm going to have to start stocking up on gas masks.

In other news, Jeremy has his assessment appointment tomorrow with the physical therapy center that's going to be doing his aquatic therapy! We are extremely excited about this; while Jer and I have been going to the YMCA five days a week and he's been swimming, biking and weight lifting there, he doesn't have any specific exercises to do in the water to help improve his flexibility, balance etc. so it will be great to have a professional giving him some of those to do. Hopefully in another couple of weeks he'll be able to use the parallel bars and actually start practicing walking out of the pool! I'll be sure to bring my camera when he starts that up so I can record the moment for posterity.

We can't wait!

~Jess

In Which Connor Does Things When He's Good And Ready

This morning at physical therapy, Connor sat up for thirty minutes! What a big boy he's getting to be!

It was really interesting to watch the way his sensory issues affected his balance: when he was playing with a familiar toy his balance was fantastic, but if you put a new, strange toy in front of him (he hates touching unfamiliar toys) then he got all wobbly because he couldn't handle focusing on the new toy and focusing on sitting at the same time. The second you put the old toy back in front of him his balance magically improved! It was a pretty dramatic demonstration of how his sensory integration disorder affects him; he can't handle more than one or two major stimuli at once without being totally overloaded. All the same he's come a long, long way from where he was six months or a year ago, and we're so proud of him!

I also talked with Connor's feeding therapist today; Connor has decided that he's not going to swallow any of his food at school. He'll open his mouth for it, but then after a minute or two of holding it in his mouth he'll just spit it out. His therapist pointed out that the child thrives on routine, and that if the classroom is noisy he may be having the same problem that he did when he was trying to sit and play with a new toy; too many stimuli. He can't watch the other kids and focus on eating at the same time. At home, in a quiet, familiar area, he swallows his food without any trouble.

So she suggested that rather than having them use any techniques to get him to swallow, that they either have him sit in an area off by himself or turn him so he's not facing all of the other kids and doesn't have as much visual stimulus. Then it's a matter of letting him get used to school and the routine-- which for this kid could take somewhere between six weeks and six months. Once he's comfortable, he'll start swallowing. It's slow and steady wins the race with the little guy, and he's inherited a healthy dose of stubborn mule from both sides of the family, so if he doesn't want to do something there will be no persuading him otherwise.

So we'll try it and see how it works. He's a funny, funny little guy, isn't he?

~Jess

In Which We Have Some Huge Ups And Downs

What a roller coaster of a day.

This morning I dropped Jer off for his hospital appointment and took Connor to his physical therapy. The little guy has been hovering right on the edge of sitting on his own. He's to the point where he can sit very well as long as you keep your hands on his thighs to stabilize him. Our fantastic PT, Laura, had the great idea of taking a weighted pillow and placing it on his lap to mimic hand pressure, and with it the little guy sat by himself for fifteen minutes! His previous record was two minutes. This is the kid who was never supposed to move his arms and legs with purpose, remember? I was so proud I almost burst at the seams. He finally had to stop sitting not because he lost his balance, but because he tired himself out. He was literally falling asleep and still trying to sit up; nothing wrong with the kid's work ethic, that's for sure!

We're borrowing the pillow from our therapy center until I can make my own-- it's a simple pillow filled about half-full of beans, so it shouldn't be too hard for me to toss together. I can't wait until he can sit by himself at circle time just like a typical kid-- what an accomplishment!

After that fantastic therapy session I drove back to the hospital, picked Jer up, and we went back to the apartment for some lunch and so Connor could have a well-earned nap. Once he woke up I loaded him back into the car and we went over to the new house to continue sorting out the garbage while Jer stayed at the apartment and took a nap of his own.

Today's finds include:

-48 cans of old paint, stain, or varnish.
-16 different types of poisons for various unwanted living things, including weeds, ants, insects, mice, and moles. Eight of those were for the moles, which were evidently particularly unwelcome here previously.
-1 half-full can of outboard motor gasoline from 1994.
-One wet king sized mattress, 9 more cans of paint, a breast self-examination kit and a bag full of broken glass under the tarp in the driveway labeled "Salvation Army Pickup."

I'm mostly finished with the house now. Two-thirds of the garage left to go!

After Connor and I finished up at the new house for the day we stopped by the grocery store near our apartment complex to pick up some more cozy winter pajamas for him and some other odds and ends.

Connor had a massive seizure in the middle of the clothing aisle.

I immediately set him down on the floor, shouted for help, and started mouth-to-mouth. 30 seconds went by. Nobody came. I shouted for help again and went back to doing resuscitation. A minute went by. Nobody came. I shouted for help again.

I could hear a man talking on his cell phone less than fifteen feet away. He said loudly to the person on the end of the line: "Some @$^* is shouting for help in the middle of the store."

By this point Connor had been unresponsive and not breathing for a minute and 45 seconds. I shouted for help again, and added "He's not breathing!" Within five seconds I had fifteen people in a circle around us, including three store employees, all of whom had been within earshot and had chosen to ignore my earlier shouts for help. The man who'd been on his cell phone was down on the floor next to Connor and me yelling "Breathe, baby! Breathe!" Connor's seizure finally ended at just after the two-minute mark-- less than thirty seconds away from when I would have needed to use his emergency medication.

It was the longest seizure he's ever had while on seizure medication, and one of the scariest not just because of how long it lasted, but also because I couldn't seem to get anyone's attention despite being able to hear people talking all around me. In the future I'll remember to shout "Help, he's not breathing!" the first time instead of just "Help, help, I need help!" I also hope that in the future if those fifteen people hear someone repeatedly shouting for help at the top of their lungs they'll try to make an effort to see if the person, might, you know, actually have an emergency and need help rather than just ignoring them.

By the time someone called 911 Connor's seizure was over, and I told them we wouldn't need the ambulance as there's not really anything they can do for him once he's breathing again. I bought the things already in my cart and drove home with an extremely sad, limp little guy in the back seat. He was scared, sobbing hysterically, and totally exhausted. I calmed him down, gave him his evening medication, and put him to bed. Then half an hour later he had another, smaller seizure. This one only lasted about 20 seconds-- I only had to give him a few breaths-- but it was very scary because he doesn't normally have seizures so close to each other and so it caught me totally off guard. The typical period between his seizures is 2-4 months.

He came up from the seizure disoriented and scared again, but calmed down and went back to sleep once I gave him some oxygen; it always seems to make him feel better. I'd imagine he probably wakes up with one heck of a headache because of oxygen deprivation. I'll be calling his doctor tomorrow, and I'll have to watch Connor very closely over the next few days. The last time he had seizures that fell closer and closer together, he ended up in status epilepticus. This could easily be fatal for him, and at the very least he'd end up in intensive care again, so we tend to fall on the paranoid side with these things. It's not something we want to mess around with.

So it was a roller coaster of a day. Some days are like that, I guess.

~Jess

In Which I Talk About Something Other Than The House

I got so involved in my ramp planning yesterday (Now I'm thinking about living wall panels-- wouldn't that be cool on the side of a ramp wall? Totally impractical and hard to maintain, so I probably wouldn't actually do it, but very cool.) that I forgot to give you the update on Jer! Sorry about that.

There's Jeremy hanging out with our son, No-Pants boy, yesterday morning. Connor will wear a shirt to bed but he draws the line at pants. He's signing "Daddy" in this picture-- isn't he cute?

So Jer went in for a hearing test yesterday, because he's been having some trouble with loud sounds setting off a "static" sort of noise in his ear; it's rather uncomfortable and certainly distracting. They tested his hearing and he doesn't have any hearing loss, which is good. Basically they said that it's likely the concussion wave from the blast injured his middle ear and there's not really anything they can do to fix the problem, but it should get better over time. In the meantime I'm going to have to figure out how to moderate my voice a little better-- I tend to get really loud when I'm excited about a topic, and with the whole house buying thing I've been excited a lot recently, so now I get "shushed" a whole bunch. Oh well.

Jer also went down to the casting room, where they removed a staple in his graft that had been accidentally left in and also pulled out the wire sticking out of the top of his foot. This was the wire holding the navicular bone in place while it healed, and it's been a little over two months since it was put in. It stuck out about 3/4 in out of the surface of his foot, and was becoming increasingly uncomfortable. He was having a difficult time doing all of his physical therapy exercises because the wire went through either a muscle or tendon involved with the movement of his big toe, so it made his range-of-motion exercises kind of painful. Also whenever he had his air cast on the cast was essentially sitting on the wire and pressing it down into his foot. Ow.

Jeremy was a little bit nervous about them taking the wire out, and I can't say that I blame him. They don't use any anesthesia or anything, and while they tell you it won't hurt at all the fact that they're pulling 3 in long wire out of a bone in your foot makes you tend to think they're lying. Additionally exciting was the fact that it was a resident who obviously hadn't done this before taking it out of Jer's foot, so we got to hear the instructions. "You just twist it around like a corkscrew and yank it out," the orthopedic surgeon told him. Whee.

But as it turns out, it really doesn't hurt-- the guy took a hold of the wire, twisted it around for a second, and then pulled it out, and Jer didn't feel a thing. Weird. He now has a band aid over a rather large hole in his foot, and he's much more comfortable both moving his toe and wearing the cast. He's also a little less anxious about getting all the wires sticking out of the sides of his feet pulled, which they'll be doing on Wednesday. I think he's rather looking forward to it-- those all push against the cast too.

Jer can feel sensation just about everywhere except for a couple spots on the side and top of his left foot and his graft area, where the skin is totally numb. This is great because it means that for the most part the nerves are all working correctly! I was under the impression that he'd get sensation back in the graft area eventually, but Jer's PT said it was likely he never will feel anything there again because he lost so much tissue and the graft is so large.

We'll just have to see; the body is a pretty amazing thing!

~Jess

In Which I Totally Freak Out

Jer had a fairly quiet day today. I had a rather emotionally fraught day, however.

See, they keep talking about sending Jer home on Saturday to be an outpatient until his big surgery, which will be at a hospital up in Seattle. That's in five days.

Every time they say this, a billion little mice in my brain start squeaking in sheer, utter terror. They sound something like this:

Saturday? That's five days away. Five days away and Jer still needs the help of me and two physical therapists to get out of bed. Five days away and he'll still be in huge casts that need to be elevated all of the time and he'll still have heels that are shattered into a billion pieces and we have no equipment at home and no vehicle that will work for him and I won't be able to leave him by himself and Connor starts school next week and they say we may not qualify for home health care and for the love of God why is this a good idea?????

Then the mice all degrade into gibbering and I have to go sit down for a while.

I told the case manager that our biggest issue is the vehicle, and explained the problem. We have a Nissan Xterra, and it's not wheelchair accessible at all. Currently Connor is small enough that I can simply lift him in and out of the car, and I just fold up his wheelchair and put it in the trunk. Now, Jer is not allowed to have his feet down from elevation for more than fifteen minutes at a time. It's a thirty-five minute drive from the hospital he's at now to our apartment, and a forty-five minute drive to the hospital where they'll be doing his big surgeries. So Jer is going to have to be in the vehicle with his feet elevated. This is impossible the way things stand now. I asked the case manager how we'll need to convert it (Rip out half the back seats and stick a ramp in the trunk? Will that even work?), or if we'll need to just rent or buy an accessible van, and what our insurance would cover. He suggested we just set up a "cabulance" system to get Jer to his therapy sessions and doctors appointments. That means an ambulance/shuttle would come by and pick up Jer to take him to and from the hospital. This is all well and good, except I can't leave Jer alone in the apartment (since he can't get out of bed by himself while wearing unbelievably heavy casts on both legs-- this would be bad if there was, oh, a fire or something) while I take Connor to his PT, the doctor, school, etc. and I'll need to go to the grocery store every once in a while.

He ordered Jer's other equipment (hospital bed, bedside commode, lift, special wheelchair, bath chair, and sliding board) today, and said he wasn't sure when it would get there. I'm thinking we'll set the hospital bed up in the living room and I can sleep on the futon-- it won't be pretty, but it will work as a temporary solution. As for the car-- he said he didn't have any ideas about the vehicle and maybe we should just look into Continued Care for Jeremy. In other words, A NURSING HOME.

I don't think so.

I talked to Jer's Rear Detachment Commander today, and he thankfully was able to give me some actual helpful information. The VA is able to help convert vehicles, for one thing. He also talked to me more about our traumatic injury insurance that should help us cover a van if we need to buy one. So I'm feeling a little better about the whole situation.

But FIVE DAYS.

Gibber gibber gibber.

~Jess

In Which Logic Has Nothing To Do With It

Busy, busy day today.

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

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

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

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

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

1) Introduce myself and briefly outline my son's 12-inch thick medical history and 25 or so current conditions, practically all of which are ridiculously rare.

2) Renew all of our EFMP (Exceptional Family Member Program) paperwork, which is due at the end of July if we want to keep our respite care, priority housing, compassionate assignment, etc. The insurance company suggested during our discussion about appointment length that we should have done this back in June but as I reminded them there was that small problem of NOT HAVING A PCM TO FILL OUT THE PAPERWORK. Rar.

3) Fill out all of the paperwork that Connor needs for his health plan so that he can start school.

4) Get a referral for the orthopedic doctor and let the PCM know about all of our current pieces of medical equipment on order (I believe there are eight) in case the insurance company calls him wanting to know if they're necessary.

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

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

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

Sigh.

~Jess

Therapy Sessions

Monday Connor and I went to his combined Physical and Speech Therapy session. We love Laura, his PT, and Julie, his ST-- they are awesome! Connor and I were sporting his new groovy FM system, which was much admired. After I told them about my grocery store newscaster fantasies, Julie told me it makes me look like a "diabetic spy"-- which, after looking at pictures of blood glucose monitors, makes perfect sense. Here's Connor's FM system:

And here's a blood glucose monitor:

So now apparently I look like I do undercover work for the ADA. I just need a trench coat and a fedora.

At any rate, Connor had a great PT and ST session. He is starting to recognize pictures as representations of objects, which is a huge step for him. Once he understands that pictures on cards can be symbols for things he wants, we can begin using a picture communication system for him-- possibly a modified version of PECS. He's already making choices between two pictures. He also did a great job standing up to play. We won't see Julie and Laura again until after Christmas as we'll be leaving for Texas soon-- it's crazy to think that our trip is that close!

When we come back from our vacation, Julie and Laura will begin administering the Bayley Scale of Infant Development to Connor so that we'll have that data for when he starts school in April. I'm glad that they will be giving the test to Connor so we'll have an additional set of data other than what the school's assessment will show. This is because Connor refuses to cooperate with developmental exams given by people he doesn't know. Connor reacts to strangers giving him developmental assessments like they are terrorists trying to get him to give up government secrets. In his case, name, rank and serial number are all represented by the sign "no," and that is the only thing the therapist will see him do during our two hour time together.

Therapist: Connor, can you see this ring?

Connor: No.

Therapist: Let's touch the ring. Can you touch this ring?

Connor: No.

What color is this ring?

Connor: No.

And that's if Connor's in a good mood. If he's in a bad mood, he'll stare at a fixed point about three feet to the left of the therapist and pretend she doesn't exist. If she tries to move into his line of sight, he'll look in the other direction. He was in a bad mood at his last assessment, and they placed his cognitive level at three months.

For the most part, I could care less about what the developmental tests say. Anybody who spends ten minutes with Connor in a setting he's comfortable with knows that he's got a cognitive level way above three months. If anything, it's nice that they assess him that way because then we are certain we can get all the services he needs without a fuss. The problem with this being the only assessment the school sees, however, is that we want Connor to split his time between the developmental preschool and the Deaf/HoH preschool, and if he's assessed too low, than there's a chance they won't let him attend the Deaf preschool. So we'd really like to have some data that shows he will benefit from being in a school with Deaf peers who are not developmentally delayed.

~Jess