In Which Connor Is Stuck On Tape

Today was a busy day of running errands and phone calls, but I still got the chance to enjoy the return of the warm weather by pulling out the roller skates and going for a long trail skate.  I discovered that closing up my pads in a closed gym bag for the entire winter was probably not the best of ideas; I'm glad no one was trying to draft off of me on the trail because they probably would have passed out due to the smell.  It was, um, impressive.  Derby pads do not smell wonderful under the best of circumstances, and three months of zero air circulation does not improve matters.  Trust me on this one.

I still enjoyed myself, though.  It felt pretty good to be back on skates!

Anyway, the kids both had a good day.  The physical therapist kinesio-taped Connor on Wednesday to try and help him sit up a bit straighter, which would help with his scoliosis.  He doesn't mind the tape at all-- actually he kind of seems to like it.  It really seems to be working; his posture was much better today and he spent less time slumping over even when he was tired.  I'm hoping that a combination of the tape and continued use of the adaptive vehicle (which he can only activate when he is sitting up straight) will help slow down the progression of his curve a bit and also help him be a tad more balanced.  We'll just have to see how the next few weeks go!

Eden had swimming today after school. Once she was home we ate dinner and then after Connor went to bed she and I sat next to one another on the couch and read for a while with our mugs of mint hot chocolate.  So while it was a very busy day, it had a lovely ending.  Mint hot chocolate, books and snuggling with my girl?  Can't get much better than that!

~Jess

In Which I Watch A Bookworm Blossom

When Connor's nurse woke him up this morning for school, he started crying, signed "no, tired" and promptly went back to sleep.  This was not a wonderful start to the day.  I told her to let him doze and then woke him up myself about twenty minutes later.  He made a really sad face when I told him it was time to get up, so I brought him into the living room and snuggled with him until he absolutely had to get ready for school.  After that he was okay-- apparently morning snuggles solve many, many problems.

He ended up having a good day at school, and then he had an absolutely fantastic physical therapy session.  He's really getting the hang of the adaptive vehicle he's been driving around, and it was pretty cool to see him starting to figure out how to stop it at just the right place so that he could see what was going on.  He was really interested in the other kids' therapy sessions, and just wanted to stop the car and watch to see what they were doing.  It was cute.  

Eden had a good day as well; she came home in a really great mood after finishing all her homework at the after-school tutoring assistance program she goes to every Wednesday and finding out that she was the only student who had perfect attendance there.  She came right over and gave me a big hug where I was on the couch, and then plopped down beside me to do her reading for the day.  We read out loud together every day; she used to read out loud to me for twenty minutes, but we now each read a chapter, which can take considerably more time.  She just finished Charlie and the Chocolate Factory, and enjoyed it so much that we've started a second book by Roald Dahl: The BFG.  This happens to be one of my favorite children's books of all time, as it is so deliciously dark.  Eden and I are both enjoying it immensely.

She's also picking up books and looking through them on her own now; especially the many adoption-related biographies I have on the shelves.  Currently she's leafing through Cindy Champnella's The Waiting Child, and while I'm not sure how much of it she's actually taking in, she's spent quite a bit of time on it.  

When she first came home she didn't really care for books at all (in Thai or English) because she said the subject matter was boring.  Apparently the books that were available to her in Thailand were not very inspiring-- other than the Harry Potter series, which she read in its entirety.  Charlie and the Chocolate Factory was the first book we've read together where she was disappointed that the chapter was over and really wanted to know what happened next.  I can't tell you how amazing it is for me to watch her begin to fall in love with books.

Good thing I have about 1300 in the house.  I don't think she's going to run out of reading material any time soon.

Of course, it probably helps that we have no television reception and her Internet use is limited to two hours on weekdays and three on weekends-- provided she has her homework, chores, and of course her reading with me done.  Boredom is a good motivator for reading.  Still, I'm thrilled to see her starting to open that door; there are so many wonderful books out there I can't wait to share with her!

~Jess

In Which Connor Hits The Road

Today was one of those days that I really needed a clone of myself; Eden and Connor both had appointments at the very same time in different parts of Puyallup.  Here's where one of the major advantages to adopting an older kid comes into play, though: Eden was able to just walk to the library after her dental appointment and wait there for me and Connor to finish up at physical therapy.

Both appointments went really well; Eden didn't have any cavities and, though she got a bit lost on the way to the library, kept a cool head and in the end was able to make it there without too much trouble.  She's really maturing, and I'm very proud of how she handled the situation.

Connor had his third session with the adaptive car he's learning to use right now, and this time I was able to get some video!  He wasn't quite as enthusiastic about it as he was last week, perhaps because he had a couple of short seizures earlier in the day, but he still did some excellent driving.

Right now he's using a head switch because his sensory issues keep him from pressing and holding down a button long enough to get more than a foot or so, and he's also only working on going forward at the moment. We're going to muck around with things in the future, though, and see what else we can do to expand his horizons!  So without further ado, here's Connor going for a spin:

He's doing so incredibly well with the car that we'll be adding in some occupational therapy specifically to see how far we can take this.  This is the first time Connor has been able to consistently move himself independently ever, and it's a huge step for him developmentally.  I can't tell you how incredible it is to see him make his own decision about where and when he wants to move.

Mostly, as it turns out, he channels Ariel from The Little Mermaid.  He wants to go where the people are.  And once he gets to the people, he quits moving and is perfectly content to sit there and look at his hands.  If there's too much noise or activity, he also shuts down.  I suspect that will improve with time; right now even though the car isn't hard work physically, it's got to be pretty mentally exhausting.  As he gets used to the idea that he can get himself around and doesn't have to concentrate quite so hard, I suspect he'll be less sensitive to what's going on around him.

Even though it's difficult, he's obviously having a fantastic time with it, though.  He'll stop at intersections and carefully peer down the hallway to see what's going on before moving on down the corridor.  He waves to everyone once he gets close to them so they can all tell him what a great job he's doing.  And when we go to take him out of the car, he signs "more" and then frantically tries to push the button to run away from us!  It's pretty cute.

So hooray for Connor!  The eventual goal is for him to be able to move himself around independently with a similar vehicle at home.  I can't wait to see what the cats are going to think of this thing!

~Jess

In Which Spring Says Never Mind

The hummingbirds were out in force today!  Our in-resident hummingbird, Gus, spent the morning following me around the yard buzzing me and yelling at me until I refilled his feeder.  Every morning he sits up in the neighbor's flowering cherry tree and announces to the entire neighborhood that our house is his.  This morning at Connor's school, another hummingbird was sitting in a tree right next to our car making the same announcement about his turf.  

I had no idea hummingbirds were so incredibly loud before I moved up here, but they really are.  Gus sounds a bit like a cross between a digital watch and an electric pencil sharpener.  Also he is really, really bossy.  I'm pretty sure Gus believes we live in this house solely for his convenience.

I hope our little fluffy dictator stays nice and warm in the next few days; the temperature is supposed to get down in the 'teens a few nights this week.  It's been really nice and sunny lately, and balmy enough around here that my dutch iris are actually blooming already, so I may have to run out and cover them up tomorrow before the really frosty weather gets here.  

I'll have to make sure our walk is clear of ice too; Eden definitely has more issues with falls in the winter time if the conditions outside are slick.  Her balance and walking really have improved an incredible amount though; she's been working hard on picking her toes up instead of dragging them, and it's amazing to see the difference in how she's moving.  I think once we go back to visit Thailand in a year or two (provided things have settled down over there) that her friends will be amazed at how differently she carries herself!

~Jess

In Which The Kids Are Doing Well And Loki Hogs The Bed

The kids are pretty much settled back into their school routine now, which is nice.  Connor's been making some recent strides in physical therapy; yesterday he stood up leaning against a play area with his knee braces on but without any other support for almost a minute, and he actually spent some time playing with his toys, which is more than we've seen out of him for a while.  It's hard to hold the kid's attention long enough to motivate him to work on something, so I'm happy to see him making some progress!  We'll keep working on his standing with braces for a while and see how far he goes, and when he gets bored we'll switch to something else.

Eden's been making some incredible progress in PT as well; she's currently working on hopping on one foot, which is really awesome. She's come a long, long way in the past year!  She decided she wanted to try on my high heels today and went wobbling around the room laughing; it made me remember trying on my mom's heels as a kid and doing the same thing, though I was quite a bit younger at the time.  I'm so glad I get to make some of the same special memories with her.

We've been keeping the gas fireplace turned on quite a bit, and the cats have spent most of the past week fighting over who gets to sleep in the cat bed in front of the fire and who has to take the blanket, which is clearly inferior in every way.  Loki, who almost always wins because he's about twice Cricket's size, likes to  stretch out on the blanket and then put just his head in the bed while Cricket plops down on the bare floor next to him and looks pitiful.  This is because Loki is kind of evil.  An adorable striped fuzzy ball of evil.  Apparently sharing was not one of the lessons Loki got high marks on in kitty etiquette school.

Crazy cat.

~Jess

In Which Not Much Happens

Connor's been working in a walker for a while now at physical therapy, and while he started off doing really well, lately he's been pretty much refusing to do anything in it.  So we're probably going to back off of it for a while and focus on some other things.  It's frustrating to see him lose that motivation-- especially when I've seen him propel himself on his own for the very first time.  

So we'll put the walker away at PT and try something else for a while.  I hope that we'll eventually be able to go back to it and he'll have some renewed interest in the activity.  In the meantime, we're going to work on some rolling over and supporting himself with his hands for a couple of months, and see how that goes.

Sometimes it gets frustrating that he makes so little progress, but I figure as long as he's happy and we continue to work towards him being as healthy and as successful as he can be that we're doing just fine.

Eden spent pretty much the whole day working on school work; she stayed late for science and math tutoring and then came home and worked on English until dinner.  She was a bit overwhelmed with her book report, but she kept plugging away at it and finally got her rough draft done.  I'm pretty proud of her for sticking with it.  She told me today just how much she liked going to tutoring, which is pretty much a complete turn around for this kid.  

Hopefully as we get closer to the holidays her homework load will ease off a bit!

~Jess

In Which We Ponder Pomanders

So this morning I dropped Connor off and headed over to the shopping center that my doctor's office is located in, where I sat in a coffee shop for a bit to while away the time before my check-up.  I moseyed on over to the clinic half an hour ahead of the allotted time, only to discover that my appointment had been scheduled for yesterday instead of today.

Whoops.

So apparently while I am obsessed with getting to the childrens' various appointments on time to a point that is borderline unhealthy, I have no compunctions about completely missing my own appointments.  I rescheduled for Wednesday.  Hopefully I'll be able to remember to, you know, actually show up.  I'm sure the doctor and staff whose time I wasted yesterday would probably appreciate that.

Anyway, then I went out and picked up the last odds and ends I needed for Christmas decorating, which will be happening in our house on Friday.  Eden and I will be picking out a tree, stringing the lights on it and making cranberry garlands.  I'll put the house lights up if I have the time too, and we'll put out all our other decorations except for the Christmas tree ornaments.  We're going to wait until Jer's home to put those up, so we'll have something to do together as a family.

After the kids came home, Connor napped while Eden and I made pomanders.  For those of you not familiar with pomanders, basically you take an orange (or in our case, a clementine), poke it full of holes with a skewer and stab a clove into each hole.  Then if you choose to, you can roll it in other spices, like cinnamon and nutmeg.  Somehow the clove-and-spice mixture magically causes the orange to last 8,000 years and also to smell delicious.  I have no idea how this works.

Stabbing cloves into an orange is not only entertaining and strangely mesmerizing work, but it's also sneaky fine motor skills practice.  I'm a huge fan of Sneaky Therapy That We Don't Refer To As Therapy Because It Is Fun.  It was interesting enough work that Eden, the self-purported Hater of All Things Crafty, actually made four of them, and since I'd already made quite a few before she got home we now we have a big bowl of pomanders sitting on the dining room table.  If you buy the cloves in bulk at an Asian foods store this is actually a fairly inexpensive way to make your house smell ridiculously good.

After that it was off to drop Eden at swim practice.  Then Connor and I went out for some quality time at the local bookstore, where we shared a piece of lemon tart while snuggling and reading a book.  It was nice to get a bit of one-on-one time with both the kids today; that doesn't happen very often!

~Jess

In Which Connor Stays Awake And We Try Some Down Home Cooking

It's nearly one in the morning right now; looks like Connor's seriously considering pulling an all-nighter.  It doesn't happen as often as it used to anymore, but it does still happen.  Unfortunately it's the weekend for our night nurse too, so it looks like I may need quite a bit of coffee in the morning.

Connor spent some quality time with the grandparents today while Eden and I went out for a while.  We ate some lunch and then tooled around the mall for a couple of hours.  It was fun getting the chance to spend a little bit of time with my girl, even if we did have to go into every shoe store known to mankind.  This kid loves looking at shoes.

After that we swung by and picked up Connor.  After his quiet time, we piled back into the car and headed for the grocery store, where I picked up the ingredients for the jambalaya I planned on making tonight, as well as fixings for the pumpkin pie and the green beans I was making for tomorrow.  We're having a slightly early Thanksgiving celebration with my parents this year, which was nice because it meant I didn't have to fight my way down the aisles like I would have if I'd been doing this shopping the day before the real Thanksgiving.

Anyway, Eden and I cooked a big ol' pot of jambalaya together tonight.  She's really interested in cooking, but I think she was fed up with the whole mess after about fifteen minutes of stirring the pot.  Basically in jambalaya (at least the kind I make) you end up stirring everything for about half an hour total before you stick the pot in the oven and bake it.  "Why we not get the kind in the box?" she asked.  "It easy."  Luckily she changed her mind and decided it was worth all the stirring after she tried it.  She's developing quite a taste for Cajun and Creole food; I think it's all the seafood and spice that she appreciates.  Oh, and the sausage-- the kid is in love with andouille.  We've got plenty of leftovers (it's pretty impossible to make a small batch of jambalaya) so it's a good thing she likes it!

Connor spent the time we were cooking hanging out on his rocking horse.  He's borrowing a full-sized hobby horse from his therapy center-- one of the kind you don't see made any more because kids kept getting their fingers caught in the springs-- that's been modified to provide extra support.  Not only is it great practice in torso control for the little guy, but he also absolutely loves it.  It's difficult to find toys that will motivate him to work hard in physical therapy, so this is a sneaky but effective way to get him to do some work.  He seems to be feeling a lot better and was pretty perky today.

Now if I can just get him to go to sleep!

~Jess

In Which I Buy Tree Trimmings And Connor Runs Out Of Steam

I took the opportunity today while the kids were in school to go out and pick up some of my Christmas trimmings for this year.  This will be Eden's first Christmas home, and I want to do it right!  Of course, it made me want to put up all of my decorations now, and it's still too early.  This will be Eden's first Thanksgiving too, and I should probably wait until she's experienced all of the holidays before I start skipping over them.

Connor had a bit of a rough day; he didn't have any seizures, but he threw up all of his meals at school and at physical therapy he did an amazingly realistic impression of a sack of potatoes.  Not only did the kid not attempt to work on any of his normal exercises, but he was actively trying to lie down every time we sat him up.  He spent the entire trip back home alternating between signing "tired" and "sad," and when I gave in and put him down around five in the evening he was out in less than five minutes.  Part of it may just be the season; we're getting into the time when it's dark outside at a depressingly early hour, and goodness knows it always makes me want to hibernate.  I hope he's not coming down with something; maybe it was just one of those days.

Hopefully he'll feel better tomorrow!

~Jess

In Which The Little Guy Is Under The Weather And Eden Holds Her Own

Last night Connor stayed up until two thirty in the morning, so it's not surprising that he was a bit groggy when I dropped him off for school.  Apparently he perked up quite a bit once he got there though, and he was fairly cheery until Eden's physical therapy appointment this evening, where he started throwing up and then conked out on one of the mats for the whole hour.  I think he might be coming down with yet another bug; it is rather the season for them.  I had to wake him up when it was time to go home, and once I put him to bed he was out like a light.  Poor little guy.  He's not running a fever though and he didn't have any seizures, so we'll see how he feels in the morning.

So I was sitting there at while Connor snoozed away watching Eden balance on a wobble board while she threw a basketball back and forth with her physical therapist, and I was awestruck by just how far she's come in the past eleven months.  When she got here, walking more than a few hundred yards was exhausting, stairs were a serious challenge, and something like balancing on a wobble board seemed completely out of reach.  She's not only running and jumping and balancing on that board like a pro; she's also standing so much taller, with her shoulders back and her head held high.  It's absolutely amazing how much of a difference it makes; I love seeing the evidence of the confident, self-assured young woman she's becoming in the way she carries herself.  That's my girl!

In other news, tomorrow I have my intake appointment for the home health care company who will be doing our respite care!  I am so unbelievably excited about this-- I did a happy dance around the house for about five minutes after I got the phone call.  Working with two different companies for respite care and night nursing may be a bit complicated, but I am really, really ready to have my respite care back so I'll make it work.

Anyway, it's late and I need to be up a bit early to get some extra cleaning done.  Tomorrow's another busy day!

~Jess

In Which Connor Bowls And Eden Has A Fitting

Connor's physical therapist caught us while we were on the way out the door from Eden's PT session today; she had an opening and thought we might want to go ahead and do his session early.  Normally he has physical therapy tomorrow.  I jumped all over it-- it's always nice not to have to make another trip up to the hospital!  Connor was a bit perturbed by the schedule change, but he perked up a bit when he got the chance to go bowling with a new friend.  Really-- they have a switch-activated bowling set.  It's awesome.  Connor refused to push any of the buttons with his hands, but he did hit the switch very deliberately with his head.  Hey, we'll take what we can get!

We might have to try bowling down at the local place with the kids sometime.  Connor seemed to get a kick out of it, Eden would probably enjoy it too and I'm pretty sure that they have a modified bowling set down there. 

Eden's physical therapy session was a bit unusual today as well; she spent a good portion of it choosing a model and getting fitted for a wheelchair.  Long distances are very difficult for her to walk, and having the chair is going to open up a lot of opportunities for her to participate in more activities.  She used a chair occasionally in Thailand, but it was far too large for her.  This will be the first one fitted specifically for her.

It will be a fairly lightweight, bare-bones model.  I'm not exactly sure what particular one was settled on in the end, but I believe it's in the TiLite series.  We don't want this to be a lounging chair or something that becomes her primary mode of transportation-- we only want her to use it when walking just isn't going to work.  So we got it without arm rests or push bars.  Right now she's making huge gains in terms of balance and leg function, and we want to make sure she continues to push herself while still having that support when she needs it.  She'll probably always need the chair for longer distances, but as far as we're concerned the more upright mobility she has, the better.

Eden was less concerned about the chair's functionality and more concerned with whether or not she could get it entirely in black.  Because she's a teenager, and that sort of stuff is important. Also, believe it or not, they may actually have an option that involves skulls, and the only thing this kid likes better than black is skulls.  So she's pretty gung ho about the chair.  If we don't end up with a skull option I may have to find her a skull pin to put on the back or something. 

It will probably be a few weeks before we're actually ordering the chair though as we've got to wait for the authorization to go through, so we've got some time before we're going to be picking out that sort of nitty-gritty detail!

~Jess  

In Which We Do A Lot Of Stuff And Things

I'm afraid I may have to turn on that darn "weed out the spambots" button-- the spam is getting kind of ridiculous now and I have quite a bit less time to spend deleting it all, dang it.

We had an extremely busy week around here!  Connor went almost ten days without seizures, which was pretty exciting.  He had about a twenty second one yesterday and a fifteen second one today, so that trend may be over.  We'll see what tomorrow brings.

The little guy had a progress report done in physical therapy yesterday.  He's now able to straighten his legs about twenty more degrees than he could a few months ago, so that's some movement in the right direction!  Connor's hamstrings are still somewhat constricted-- he can extend his legs to a 150 degree angle rather than a 180 degrees-- but any improvement in his flexibility is fantastic.  With kids who sit in a wheelchair most of the time like Connor does, hamstring shortening tend to be inevitable and if they get bad enough children can need surgery to be comfortable.  So I'm glad we're keeping him as limber as we can!

Ellen had her second swim meet this past weekend; it was a two-day affair and she swam eight events total.  She did a fantastic job, and we're pretty proud of her!  She's told us that in Thailand she didn't get to swim in very many competitions each year and they were all against other children with disabilities, so she's not quite used to this swim-meet-with-typical-kids-every-couple-of-weeks thing yet.  She had a really good time, though she was pretty tired by the end of the weekend!  She's starting to open up more to the other kids and seems to be making some friends; it was pretty neat to see all the other kids cheering for her as she raced.

I had a meeting with her teachers today; I hadn't met most of them yet and this was a good time for a check-in.  We also wanted to get the ball rolling on a 504 plan for her, and talk a little bit with her teachers about how Ellen's education might be affected by cultural differences between Thailand and the USA, her cerebral palsy, long number of years in institutionalized care, and her adoption.  All of her teachers seemed very nice and they all had wonderful things to say about her-- she's is a very eager student.  She really seems to love school and is pretty enthusiastic about learning.

Tomorrow morning she and I have an appointment up at the rescue center to pick up a pair of guinea pigs!  Unfortunately the rescue is not wheelchair accessible, so Connor has to stay home.  But I'm sure the whole family will spend quite a bit of time staring into the guinea pigs' ridiculously huge cage (no seriously, this thing is HUGE) once we get them home.  Ellen and I set the cage up today, and so it's all ready for its new occupants.  She's decided that she wants a pair of boy guinea pigs, though she may change her mind once we get there and she has to choose.  We've been talking a lot about how the guinea pigs might be "feeling" after leaving all the other guinea pigs and coming to a new, strange family.  I think the guinea pigs are going to be a rather important tool for expressing emotions around here for a while!

~Jess

In Which We Have A Better Day

Today, I'm happy to say, was a better day.  Other than the seizure Connor had at physical therapy nothing too untoward happened.

The little guy probably just overheated; he was trying out a walker and so was exercising quite a bit, and we spent some time in a hot and stuffy elevator.  So that's probably what brought it on.  We had to use the oxygen, but it wasn't too long of a seizure-- maybe a minute and a half or so.  He napped for a good portion of the afternoon.

As for the walker: he wasn't really able to take steps in it because he couldn't lift his toes up off the ground, but he was certainly interested in the proceedings.  We'll try it again after he gets his new ankle-foot orthotics and see if that helps!

We got the news that Connor's new wheelchair back has been approved, so that's pretty great.  His old back is way too flexible for his scoliosis, and the new one should give him a lot more support.  It shouldn't take very long to process, so we'll probably be making the trek up to Gig Harbor some time in the next week or two to switch out backs.

I got some news too; I went to the doctor a couple of days ago because I've been feeling increasingly fatigued and experiencing some muscle aches and what not, and my lab results came back in.  It turns out I had a vitamin D deficiency going, which makes perfect sense when you consider that my kid is practically a vampire.  We spent all summer avoiding the sun as much as possible because it was too hot, and so I didn't get my usual warm weather dose.  I'm glad that we caught it now, because I'm sure that going into the winter in the Pacific Northwest sure wouldn't help matters!  So I get to start taking a vitamin D supplement, and hopefully that will solve the problem. 

I love it when problems have easy solutions!

~Jess

In Which Connor Gets A Workout And I Call The Roll

Connor saw his physical therapist at school for the first time today; he's been out for the last three Thursdays due to various doctors' appointments so he kept missing her.  So now he has a stander that's adjusted at school and he can do some of his standing time there, which will be really nice.  Trying to cram two hours of standing in before bedtime has been a bit rough on the little guy, so he'll probably appreciate it being spread out a bit more.

He's started wearing his knee extension braces for a couple of hours before bedtime per his outside physical therapist, who he also sees on Thursdays.  Thursdays are probably going to be Early Bedtime Day for Connor; he crashed at 6:15 this evening.  I guess he's getting a workout!

I spent a good portion of today on the phone, talking with various people at Ellen's future school, doctor's office, etc. to try and get as much done in the way of enrollment as we can before she gets home and to give them a heads up that we're getting closer to her getting here.  Ellen will probably be starting up school right after Christmas break, so I talked with a counselor at the junior high she should attend about what that process should entail.  We're going to try and get her school records while we're in Thailand to help with the transfer, but there's no guarantee we'll be able to make that happen. 

We won't know for sure yet exactly what grade she'll be placed in, but we're guessing it will probably be 8th grade based on her age and where she is in school now.  The junior high schools here are 7th-9th grade, so this will give her the chance to be with the same kids for a year before she starts high school; something we think will be pretty beneficial. 

I was talking to Jer and called Ellen "Connor" for the first time today.  She's not even home yet and I'm already mixing up my kid's names.  I'm pretty sure this is a rite of passage for any kid with siblings-- I even got the cat's name every once in a while.  I haven't called Connor "Ellen" (or her actual name) yet, but I'm sure it's just a matter of time!

~Jess

In Which We Have A Busy Day

Today was an extraordinarily busy day for us, so it was lucky that Connor seemed mostly recovered.  Of course he was still a bit cranky because for some reason he stayed up literally all night last night, but with all the sleep he'd been indulging in earlier in the week that's perhaps not a surprising turn of events.

We started off the morning with Connor dunking one of his hearing aids in my glass of milk.  At least it wasn't tea this time-- he does manage to dip his hearing aids into my beverages rather too often for it to be entirely coincidence.  So he went without his hearing aids today as his left one was drying out and he refuses to wear one without the other.

After that diverting adventure we were off to the hospital for Connor's first appointment of the day: his ankle-foot orthotic (AFO) casting.  The little guy was surprisingly patient with the two women who placed his feet on wooden bases cut to his size, used gauze strips dipped in plaster of Paris to fit the boards to the contours of his arches and then wrapped his feet from toes to midcalf in a cast, which quickly hardened.  Then they carefully scrapped a groove down either side with a razor and used medical scissors to cut his feet out of the casts, which were then put back together and covered with another layer of plaster of Paris.  These will be used to make molds of his feet so that they are able to design his AFOs to his exact size.  He'll have his first fitting for the resulting orthotics in about two weeks.

We took a short break for lunch and then returned to the hospital for Connor's second appointment of the day, to discuss wheelchair, bathing and commode chair options for Connor.  His current wheelchair doesn't give his back enough support but otherwise suits our needs very well.  Luckily the manufacturer also makes a wheelchair seat for the same frame with a hard back rather than the flexible one we have now.  That way we don't have to replace his whole chair; just the actual seating portion. 

We'll also be requesting larger sizes of his commode chair and his bathing chair, both of which he is rapidly outgrowing.  We're hoping to add wheeled bases to both of these so that we can use Connor's lift (once we have the lift) to get him into them and then move him into the bathroom already in his equipment.  The little guy-- or not-so-little guy, as the case may be-- is getting heavy enough now that my back is not going to appreciate me hauling him around the house very much longer, so a lift will be a huge help.

After that appointment we took another short break and it was on to physical therapy, where Connor spent a whole lot of time not really wanting to work on anything.  He was understandably a bit tired after the busy day we'd had and his sleep strike the night before.  He lasted the full hour but was literally shaking with exhaustion by the time we finished, and he fell asleep in the car on the way home.  Of course he's awake now and shows no signs of going back to sleep, but I really hope he gets a bit more than he did last night or he won't have a good time at school tomorrow.

Go to bed, little guy!

~Jess

In Which We Have One Heck Of A Crazy Day

Well, that was a day.

This morning I loaded Connor up bright and early and we headed down to the hospital for his first appointment.  Because he's back in school, I'm trying to stack his appointments on the same day so he doesn't have to miss more days than necessary.  His earliest appointment today was with the GI doc, and it went very well.  All of his appointments went very well, actually.  It was in between the appointments that we had issues.

So the GI doctor said that Connor's g-tube site looks fantastic and that we don't need to move up a size.  We don't have to see him again for another twelve months, which I'm always pretty excited to hear! 

We got out of the GI clinic around 11:00am, and Connor's next appointment (with cardiology) was scheduled for 1:00pm. I had a couple things I needed to pick up for the house, so I figured I'd swing by the PX (the supermarket on post), buy the necessary items and eat lunch there before returning to the hospital.  As I was loading Connor in the car I noticed he had a small bright red patch on his left arm, but I didn't think too much of it. 

We got to the PX and I was standing in the diaper aisle when I looked down and noticed that the red mark seemed to have spread down a good portion of his arm.  I lifted up his shirt and his upper arm and shoulder were sporting huge, palm sized blotches.  Hives.  I immediately wheeled over to the medication aisle to see if we could pick up some children's Benadryl, but they were out.  So we left the PX and headed back towards the hospital to see if they could give us some, as the hives were spreading at a rather alarming rate.

 As you all know, Connor is very allergic to lavender.  He doesn't have a reaction to it if he smells it, but if it gets on his skin he usually breaks out in some form of hives.  Evidently somebody in the doctor's office at some point (I'm thinking probably a patient, as the medical personnel normally don't use scented products for exactly this reason) used a lavender product and it somehow made its way into contact with Connor's skin.  Maybe they sat in the chair we were in and put on lotion with lavender in it, or used lavender soap, or something of that nature.  At any rate, Connor usually just breaks out in a red rash in the immediate area of the contact, but it doesn't spread out much more than that.  Of course, the more times he comes into contact with lavender, the stronger the reaction grows, so apparently the confined-to-one-area thing has changed.  Either that or he's developing some new mysterious allergy.  Whee.

Normally I actually carry Benadryl with me because of his allergy, but took it out of Connor's wheelchair when he went to school yesterday since leaving easily accessible bottles of medication around in a room full of children is a bad idea.  While I'd replaced his epi pen and Diastat, the Benadryl hadn't made it back into the chair because (ha ha) we've only had to use it a handful of times over the years.

It took me about ten minutes to get Connor back into the hospital, and by the time I wheeled back into the GI clinic the hives had completely covered both arms, had spread themselves across his chest and back, and were starting to pop up on his face.  I wheeled him up to the nurse, said "I think he came into contact with lavender somewhere in here," and he took one look at Connor, and then turned around and half-ran through the staff door.  The GI doctor came out almost immediately, said "Whoa," and immediately agreed that some Benadryl was an order.

 Another nurse came out with a full bottle and a medication syringe a couple minutes later, and we dosed him up in the waiting room.  Then we hung out in the waiting room for about twenty minutes until it became clear he wasn't going to need the epi pen too.  The Benadryl ended up working really well and it only took about three hours for his hives to disappear completely.  I'm very glad that the Benadryl was so effective so quickly, and that we didn't end up needing to use the epi pen.  That was my first adrenaline rush for the day.

Then I scarfed down a sandwich from the coffee shop downstairs and hauled my grumpy, spotty, half-sedated kid over to cardiology, where they took a look at his heart, declared it to be functioning well, and told us they'd see us next year.  We headed out to the parking lot, where unfortunately due to the hot weather Connor ended up overheating while I was strapping his wheelchair into the car and I had to strip off all his clothing, aim all the air conditioner at him while it was going full blast and sponge him down with my bottled water until he no longer looked like a boiled lobster and quit acting like he was going to have a seizure at any minute.

By that point we were both more than ready to go home, but we weren't finished yet.  We went to physical therapy, which went well despite the fact that Connor was understandably rather tired and didn't really want to do anything.  We also had a consult with the local orthopedic expert and determined that Connor really needs a new wheelchair, as the one he currently isn't giving him enough support and is probably making his scoliosis worse.  And then we dropped by the prosthetic place where Connor is getting his knee extension braces from and discovered that they'd accidentally only ordered one instead of two. 

And then we went home and collapsed.  Connor fell asleep practically as we were walking in the door; he went to bed at 5:30.  I ordered a pizza as there was absolutely no way I was cooking tonight, and now I'm ready for bed too, as I'm kind of dead on my feet.  And also I'm exhausted all over again just typing this-- it was that kind of day.

Whew!

~Jess

In Which We Chill Out And Connor Plays At Gumby

Photo taken by the talented Emerald England.

It's blissfully cool in our house, because we have air conditioning! 

The gentleman who installed it arrived this morning and was finished in about three and a half hours.  It's very quiet-- I can't tell when it's on unless I go stand over one of our floor vents, where it becomes very obvious.  I'm so glad that we don't have to worry any more about what the temperature is outside, because Connor will be comfortable and safe in our house.  I'm really, really not going to miss those twelve hour days in the mall.

Connor had physical therapy today, which went well.  His hamstring, torso and neck flexibility is slowly improving as I've started stretching him out two or three times a day.  He's still not really thrilled with the stretching (except for the torso rotations-- he seems to like those) but he's tolerating it a lot better as he gets used to the regime. 

The next step will be to order him some leg extension splints.  Basically these are wraps that will fit him from thigh to ankle; they have rods that will run down the sides of his legs to keep his knees from bending.  They help with stretching him out, and he'll also eventually be wearing them to bed.  I don't think he'll be terribly thrilled with that development, but it should really help with keeping his joints loose and mobile so he'll be wearing them anyway.  It'll be a while though, because we still have to order them.

Em stopped by shortly after Connor and I arrived home from PT to pick Mary up; they were headed up north so Mary could shoot some portraits for Em and her family as part of their photo exchange.  While she was here, she dropped off the rest of the gorgeous images she took of Mary, Connor and me, and they're all so good I can't figure out which ones I like best!  I'll probably post some of them over the next few days-- like this ridiculously cute shot of Connor in his fedora. 

He's totally wearing that hat on the first day of school, and if I can find him a pinstriped suit he'll be in that as well.  You only get to do the first day of elementary school once, and Connor's going to do it in style!

~Jess

In Which Connor Straightens Out

Connor tried out some new leg braces today, and he was able to stand in them without a stander and just a little help from his physical therapist for balance!  It's been a while since he's been able to stand without support from the stander; not only did he regress quite a bit when he had all those seizures a year and a half ago, but his hamstrings are also getting tighter and that makes it more difficult for him to stand up straight.  This is a really common problem for children in wheelchairs because they spend so much time sitting with their legs bent at a ninety degree angle. 

He's getting to be so tall!  He comes up to my waist now when he stands.

The biggest issue with the leg braces is that they are hot, which is of course potentially a serious problem for Connor.  So we won't be using them at home until the air conditioner is installed, which should hopefully be happening any day now.  Once that happens, we'd like to work up to him wearing them all night while he sleeps.  It doesn't sound terribly comfortable, but if we can prevent (or at least delay as long as possible) him from needing hamstring release surgery that would be fantastic. 

Otherwise we spent a good portion of the day out and about again; it got up to 87 degrees today, which meant we needed out of the house.  Tomorrow hopefully won't be too bad, but it will start heating up again on Wednesday, and Thursday and Friday the predicted highs are in the 90's which means another twelve hour mall day. 

I'm getting really, really tired of the mall.  Hopefully our turn on the handyman's queue will be soon!

~Jess

In Which Connor Learns That Sleep Strikes Are Not The Best Of Ideas

Last night Connor slept in ten-fifteen minute intervals until around four in the morning.  Then he crashed, and I finally woke him up around ten.  I have no idea why he had so much trouble sleeping, but I didn't really want to continue the trend by letting him sleep the day away.  I should have known better-- waking this kid up when he's in the middle of a sleep cycle really throws off his groove.

So he was extremely crabby and clingy and whenever I moved out of his immediate eyeshot he acted like his world was ending.  Then around one in the afternoon I couldn't keep him awake any longer and he zonked out sitting upright on the couch.  I gave up, laid him out with a light blanket and he slept until around a quarter to three, which is when I woke him up so we could go to physical therapy.  He was not terribly happy about this.

So about ten minutes into therapy he started getting goosebumps and his color went all mottled and pale, and then he started thinking about throwing up.  At first we thought he was going to have a seizure, but that didn't happen.  I ended up bundling him up in a blanket and sitting him in my lap for a bit, where he promptly tried to fall asleep.  I'm not sure what exactly that was all about-- hopefully it was just the sleep deprivation thing-- but after he'd rested and warmed up a bit he was able to finish the session.  I ran a few errands, during which he was perfectly happy, and while I was putting the groceries away he crashed on the couch again.  We were supposed to go to a wedding in the afternoon, but it was very evident that was not going to be happening.  I let him sleep on the couch for a while, and then ended up bundling him off to bed quite a bit early.

Of course the second I put him down in his room he was promptly Not Sleepy At All, Thank You Very Much.  I figured he'd settle back down quickly, but he lasted about an hour and a half before having a complete meltdown, which is not something he does very often.  I ended up bringing him out into the living room with me, and he promptly snuggled down and fell asleep on my chest.  Evidently he just didn't want to be by himself.  I finally managed to put him to bed again around ten, and so far he seems to be out for the night. 

Thank goodness for night nursing.  After four days of Connor sleeping poorly, I'd probably be in the goosebumps-and-nausea stage of things right now too.  Hopefully he'll get a good night's sleep and we won't see any more of that for a while.

~Jess

In Which Connor And I Keep Our Cool

Today got hot enough that I left the house with Connor and took to the mall.  There's a huge mall up the highway from us that's a good air conditioned place to hang out.  We're still getting price quotes on having the AC installed in our house, but the sooner, the better!

After we spent some time circling the mall we ended up in Seafood City; the huge Asian supermarket near the foodcourt.  I picked up all the ingredients for som tam (green papaya salad), which I've made enough now that I don't need a recipe anymore.  And I picked up a large bunch of lemongrass too, which I'm going to try to make some sachets from.  I've discovered I really love the sweet citrus scent of lemongrass, and Connor doesn't seem to react to it.  I think using it to make my clothes smell good would be rather nice.

I bought a large package of Thai chili peppers too, but that was less because I think I'm going to be using that many in my cooking over the next week or two (one or two of those goes a long way) and more because you couldn't buy them individually.  I think I might have to get out the dehydrator and see whether or not I can dry them to store them longer.  If that doesn't work, then I can always pop them in the freezer.  With a few exceptions (like som tam) dried peppers should work fine in my recipes.

After our expedition to the mall, Connor and I dropped the groceries off and then headed to his physical therapy appointment.  We're doing some trouble shooting right now; the little guy needs a new TLSO (Torso Lumbar Sacral Orthotic-- basically a back brace) for his scoliosis, but we have to figure out a way to make one that isn't going to cause him to overheat-- a real danger in the summer time with this kid.  Hopefully we'll be able to figure something out that he can wear enough to help slow down the progression of his scoliosis.  We'd like to hold off on surgery for a few more years!

~Jess