Wednesday, October 31, 2012

In Which Connor Puts On The Ritz

I say, old chap-- would you care for a spot of tea? 
Pip pip and all that!
Happy Halloween, everyone!

Connor dressed up as a dapper gentleman for Halloween this year.  Mostly he just wanted to wear his top hat.  Let me tell you that painting a handlebar mustache on an extremely ticklish small child in liquid eyeliner is not as easy as it sounds, but after a few missteps it turned out pretty well. 

We didn't go trick-or-treating this year though; we stayed home and passed out candy.  It was drizzling outside, and since Connor doesn't eat candy I didn't want to take him out to be wet and miserable just because it was what all the other kids were doing.  So he held the candy bowl and helped pass out the candy, which he seemed to enjoy just as much.  He didn't stay awake very long though; he started drooping around seven in the evening and was out shortly thereafter. 

We had quite a few cute kids come through the neighborhood, and I don't have very much candy left over-- which is good since we all know who's going to eat the lion's share of what's leftover.  I make a point of only buying candy brands that I like, because Jer's not a big one for candy and Connor's not eating it! 

Anyway, it was still a good night even with the rain, and Connor didn't overheat in his outfit or anything this year.  Hooray!

Tuesday, October 30, 2012

In Which Connor Gets A Lift

Connor has a newly installed roller coaster in his room!

While Connor was at school today a very pleasant man from the pharmacy we order most of our equipment from showed up sopping wet (it was pouring outside) at our door with a ton of large interesting looking boxes.  Connor's new rolling toilet chair and his lift had both arrived!  He and I set the lift up in Connor's room and he showed me how to work it. 

Connor is about forty pounds of squirmy, wiggly kid now, and while I'm not to the point yet where I'm having a ton of trouble lifting him I know that day is rapidly coming, as he's certainly not getting any lighter.  He doesn't help or hold on in any way when you pick him up, and he has a tendency to try and launch himself backwards on occasion to make things exciting.  I figure it's a really good idea to have measures in place before lifting him really starts taking a toll on my back; that way I will be used to using it by the time he gets to a size where it's absolutely essential.  I'd like to save my back for times when we're out in public areas and I can't use a lift rather than straining it because I'm lifting him at home all the time.

So I know you all don't really care about why we got the lift now rather than waiting.  What you are all really dying to know is how much it can lift, and how long the pharmacy guy had been gone before I tried carting myself around in it.  The answers to those questions are: 440 pounds and about five minutes.  The sling is actually pretty comfortable, though your butt sticks out through a hole in the bottom so it feels kind of weird. 

Connor's still not quite sure what to make of the contraption; we tried it out at bedtime and he seemed to be okay with it, but he did keep asking us what the heck it was.  I'm sure he'll get used to it quickly.  Now I just have to remember that it's there and not walk into the pole at three in the morning when I go in to check on him during the weekend. 

Hooray for lifts!


Monday, October 29, 2012

In Which Connor Feels Better And We Have A Pajama Day

I'm happy to say that we had a quiet, uneventful day today.  Connor stayed home from school and I spent the day talking with various doctors and triage nurses about Saturday and watching him like a hawk.  We didn't even get out of our pajamas until well in the afternoon.

I'm still waiting on final word from Connor's neurologist, but for now it looks like we'll keep the medication change made this weekend as is and see how he does from there.  I'll be checking Connor's stomach contents for blood twice a day for the next few weeks to make sure that the bleeding isn't a reoccurring issue.  I'm so glad we have the g-tube; it makes keeping tabs on that sort of thing so much easier.  If it shows up again I'm supposed to take him in immediately so they can try and figure out the source of the problem.  Internal bleeding isn't something you really want to mess around with.

I'll be taking him back to school tomorrow; he's regained the motion in his left hand and seems to be back to his usual self.  I'm so happy that the seizure didn't seem to have any lasting effects on him, and I'm hoping I won't ever see one that long or violent again.

So hopefully tomorrow it will be business as usual in our house.  No more excitement for us, thank you very much!


Sunday, October 28, 2012

In Which Connor Meets More Firefighters And Takes An Ambulance Ride

Short blog tonight-- I'm exhausted.  Instead of giving my speech last night, I was in the local emergency room until the wee hours of the morning.  That afternoon as I was literally walking out the door, Connor's respite care nurse called me back because Connor was having a seizure. 

And he continued having a seizure for the next forty-five minutes.

Thankfully he kept breathing through the whole thing or I'd probably be writing a very different blog post.  I gave him the Diastat at five minutes in, and at around fifteen minutes in the EMTs gave him a dose of Valium.  Neither stopped the seizure.  It finally stopped on its own well after we got to the hospital. 

It was one of the violent jerking variety, and I'm pretty sure he was aware during the whole thing.  I think it scared him rather badly, which is completely understandable-- it had the same effect on me.  The doctors suspect it might have happened because of the reduction in seizure medication a week ago.  They went ahead and raised the dosage of one of his other seizure drugs to try and curb the problem. 

Amazingly, five minutes after the seizure was over Connor was signing that he didn't want to be there and was ready to go-- the seizure and the massive dose of sedatives he had on board didn't seem to slow him down much.  His left hand was paralyzed for a while, but it slowly started getting some function back.  The doctor was starting to talk about discharging him for the night and letting us go until Monday, when we'd go to Connor's primary care manager, when the little guy threw up a brown, chunky substance that ended up being blood.  Fantastic.

Luckily his complete blood count still looked good so they didn't think he was massively hemorrhaging or anything, and the blood didn't look fresh.  However, it was pretty worrisome to see, though the problem didn't seem to be urgent.  I'm pretty positive that Connor didn't bite the inside of his mouth or his tongue while seizing because we didn't see any blood coming out of his mouth during the seizure, so it's possible that he has some irritated patches in his throat from stomach acid, an ulcer, or even just that his g-tube got yanked on at some point during the transport and caused a bit of a tear his stomach lining.  At any rate, we're checking his stomach contents twice a day to make sure we don't see any more blood, and the little guy will be heading into the doctor's office on Monday to see whether or not Connor needs a scope done to figure out the source of the problem.  Whee.

So that was not, perhaps the best day ever.  We got out of the hospital at Early 'O Clock, and today for the most part we spent a very quiet time at home.  Connor slept for most of it, and he's out for the count now.  Other than the hand issue and the whole internal bleeding thing, he seems to have suffered no ill effects from his prolonged epileptic state, which is a real relief.  It was not, however, an experience I'd care to have again. 



Friday, October 26, 2012

In Which We Head To The Doctor

The area around Connor's g-tube was really red and sore today, and the antibiotic ointment we've been putting on it just doesn't seem to be doing the trick.  So I made him an appointment at the doctor's office this afternoon to take him in and get a culture done to check for infection. 

While we were there, I went ahead and got my flu shot and also a Hep A and Hep B vaccination, which is recommended for those who travel to Thailand.  They'd also like me to get a typhoid vaccine, but the doctor's office is out of it right now.  My arm is pretty sore right now-- I think with the second needle they hit a nerve or something because my arm started spasming, which was pretty weird to watch.

Connor hasn't had his flu shot yet, but we didn't want to get it today because if he started running a fever afterwards we wouldn't be sure if it was from the shot or the possible infection.  On Monday I should hear back from his doctor about whether or not the little guy just has an irritated g-tube site or if there really is something else going on there.  Once we know for sure what's going on there I'll take him back to get one so we can avoid the bug.  The fewer illnesses he gets this winter, the better!


Thursday, October 25, 2012

In Which Connor Gets Riled And We're Excited About It

Connor wasn't feeling well today; he threw up at school and again on the way home, so I canceled his physical therapy and took him home.  I suspect he might have a yeast infection starting around his g-tube; it's been red for a while and the over-the-counter antibiotics don't seem to be helping.  So I'll be calling the doctor tomorrow morning to see if I can get him in. 

For the most part, Connor has been doing wonderfully in recent days.  As we continue to go down on his medication he seems to be slowly waking up.  A couple of days ago Jeremy sang him his usual goodnight song, and Connor requested another song.  When Jer told him he'd get another song tomorrow he went into a full-blown pouting session, told him that he was "sad" and once again demanded more music.  Jer told him again that he'd get another song tomorrow, and he actually got mad and starting arguing with his daddy in sign.  "No!  Want Daddy music!" 

Jer and I were delighted.

I know it sounds strange that we'd be happy about our kid being so obstinate over something, but here's the deal: Connor doesn't usually get that worked up about anything-- certainly not enough to pout or argue about it.  He kind of embodies the Thai concept of ไม่เป็นไร, or "mai bpen rai," which literally translates to "no is nothing."  A greatly simplified explanation would be that it means to go with the flow and not let anything bother you.  While this is great in theory, Connor takes it a bit too far; it's extremely difficult to motivate him to work for anything because if a toy he wants is just out of reach or he has to do something even slightly difficult to get what he wants, he loses all interest. 

So it's great to see him really engaging with the world enough to get angry and argue when something he wants isn't happening.  And he's answering questions again rather than just ignoring me when I'm talking to him; through a series of yes/no questions today he was able to tell me that his g-tube site was itchy and sore.  Being able to give me that kind of information about how he's feeling is so amazing and wonderful because (as long as I can figure out which questions to ask) he can let me know what's wrong so we don't get into a situation like we did last winter.

And I love finding out more about what's going on inside that little corn-silk covered head of his.  He's been very carefully puckering and giving me little kisses lately, which absolutely melts my heart.  It's first new skill he's picked up in a long time, and it's something I never expected would happen.  The first few times I wasn't sure if it was deliberate or not, but now I can get kisses on request-- provided he's not ticked at me about something!  I think it's a pretty fantastic new skill to have. 

That's my boy!


Wednesday, October 24, 2012

In Which I Turn On The Waterworks For A Good Cause

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

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

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

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



Tuesday, October 23, 2012

In Which We Go Out And About

I spent pretty much the whole day out and about today-- I had a lot of errands to run and we were almost out of groceries.  It's amazing how quickly I run out of things when I skip a shopping day or two!  I also hit the post office, the park, the pharmacy and spent some time trying to study my Thai too.  Then Connor needed some more winter gear, so after school was over we spent some time shopping and didn't get back until evening.  So it was a busy day!

We got a letter in the mail from the US Embassy in Thailand letting us know they'd received all our paperwork and would be processing it over the next few weeks.  We've got a reference number for Ellen's case now, so if we need to we can check the progress of our case.  We've got a little less than seven weeks before we leave, so hopefully we'll hear something soon!  It's so exciting to realize that in less than two months we'll be in Thailand!


Monday, October 22, 2012

In Which Not Much Happens

Connor stayed up until just past midnight.  Then he fell asleep in the car on the way home from school and slept through the entire afternoon and into the evening.  He's making up for lost time.

I spent the school day trying to catch up on sleep, studying my Thai and cleaning up around the house.  Really I don't have much to report! 


Sunday, October 21, 2012

In Which Connor Is On Strike

Connor stayed up until past four again yesterday, and it looks like he's headed that direction again today.  So I apologize if today's blog is less-than coherent.  Luckily our night nurse is on duty this evening, so I'm going to actually get some sleep.  He napped in five-ten minute intervals during the day, so I couldn't really catch up.  I think it's probably the medication change that's throwing him off in a major way.  He's definitely becoming way more awake and alert as we continue to lower his keppra, but this is a bit too much of a good thing!

Thank goodness for night nursing!

Needless to say we didn't do a whole lot today.  I'm pretty sure that all the information I heard in my Thai class went in one ear and right out the other, but hopefully I retained a bit of it somewhere in my subconscious that will stick.  I'm actually kind of amazed I didn't fall asleep in class!  It's pretty interesting subject material though, so that helps a lot.

We worked on some phrases today, which will hopefully be really helpful on my trip.  I'm slowly gaining enough of an ear for Thai pronunciation so that I can at least hear when I'm saying something wrong.  Thai is a tonal language, so if you change the pitch in which you say a word it can change the meaning.  It has several consonant and vowel combinations that we don't use in English, so I'm still struggling to figure out how to make those sounds. 

My Thai accent probably won't ever be perfect, but hopefully over time I'll be able to improve enough to make myself understood.  I've been listening to a lot of Thai stations on my Internet radio that Jer gave me a few years ago, and I think that's helping.  On one of the stations they have a daily program that teaches English to Thai speakers, and I tune into every once in a while.  I figure it's something Ellen and I might be able to listen to together, since we'd both get something out of it!

Anyway, thankfully our night nurse has now arrived and I'm off to bed.  Hooray!


Saturday, October 20, 2012

In Which Connor Stays Up Forever

My brain is fried right now!  Connor stayed up until 4:30 in the morning yesterday, and he's showing every sign of doing it again tonight.  I think it might be related to his medication-- we just decreased his keppra again.  Unfortunately this month's reduction corresponds with our night nurse's weekend.  I'm going to have to drink a lot of coffee before my Thai lessons tomorrow or I'll probably fall asleep during the middle of things.

So I'm having a bit of trouble forming coherent sentences right now.  Thankfully our night nurse will be back tomorrow night and we can hopefully all get a bit more sleep!


Thursday, October 18, 2012

In Which Connor Tries Out Some New Wheels

Connor got his new chair for his wheelchair base yesterday, which is pretty exciting!  The chair back and sides are much firmer and less flexible than his former chair, so it gives his back a lot more support.  He sits up much taller in it and it doesn't allow him to slouch over onto the side where his scoliosis curves to.  I don't think he's a huge fan of it as of yet as it's probably not quite as comfortable, but it will be much better for him in the long run.

He's been working with a gait trainer at physical therapy after school; this is the first time he's tried it with his new ankle-foot orthotics.  He hasn't figured out how to pick up his feet yet, but he's putting good weight through his legs and he can roll backwards a bit.  I'm not surprised it's difficult for him to figure out what he needs to do to move around-- this isn't something we're able to practice easily at home, so it's not a concept he's seen a lot of.  Either way it's excellent practice in torso control whether or not he figures out how to walk in it, and he's very interested in being upright and engaged in the exercise.  I'm excited to see how he progresses in the next few weeks!


Wednesday, October 17, 2012

In Which We Get Some More Fantastic Adoption News

We got some great news today!  The social worker in Thailand has approved an adoption board date of December 19th for us, pending our Article 5 paperwork.  We also received word today that the US embassy has received our I-800 paperwork and can begin work on issuing our Article 5-- the last piece of paperwork we need before travel.  We should hopefully have that within two weeks. 

So our plane tickets have been bought and our hotel is booked!  I fly out on December 10th, and Jeremy will follow a few days later-- he's currently in a school for the army and his finals are that week, so he'll fly out as soon as he's finished with those.  We should meet Ellen some time during that first week.  We'll have our board date on December 19th, and if all goes well we should be home with Ellen two days before Christmas! 

It seems so surreal that in a mere seven and a half weeks we'll be in Thailand!  I've spent so much time dreaming about the day I would finally meet my daughter, and in less than two months that dream will finally be a reality.  This whole time that day has seemed so far in the future, and suddenly it's right around the corner. 

It's the same sort of feeling I got at the tail end of my pregnancy with Connor-- the whole idea of having a baby "someday" seemed to last forever, and then towards the middle of the last trimester all of the sudden it hit me that hey, I was actually having a baby soon!  I'm simultaneously elated and terrified, but I'm so happy that we're almost there.  December can't come fast enough.

I can't wait to meet her!


Tuesday, October 16, 2012

In Which Connor Is A Night Owl

Last night Connor decided to stay up until the wee hours, and then for some reason he didn't feel like getting out of bed this morning.  Surprise surprise.  I think he's putting us through training in preparation for having a teenager. 

I hauled him out of bed and off to school anyway.  While he was there, a friend and I took a trip down to the gigantic bead store south of my town.  We spent about two hours in the store and didn't get lost and die of starvation or anything-- though I did bleed on their floor a bit.  I accidentally dropped a glass ornament on the floor and managed to cut my finger picking up the pieces.  Luckily the cut was extremely minor-- I didn't even realize I was bleeding until I saw some on the ornament.  Oh well-- otherwise we had fun!

I'd hoped to take Connor out to the pumpkin patch this afternoon,  but he conked out in the car on the way home from school so I canceled his play date.  He didn't sleep for very long though, and now it looks like he's planning to stay up late again.  Seriously, I don't know how that kid does it.

Hooray for night nursing! 


Monday, October 15, 2012

In Which I Go Shoe Shopping (But Thankfully Not For Me)

Today while Connor was at school I got together with a friend for brunch, and also went shopping for a pair of jeans and some shoes for Ellen.  We have a pretty good idea of her clothing and shoe sizes now, so my plan is to bring a couple outfits in slightly different sizes and then she'll have something to wear until we get the chance to go shopping in Bangkok.  There's a gigantic mall there called Mahboonkrong (MBK) that's fairly close to where we should be staying.  It's eight stories high and has around 2,000 shops, so we should be able to find something there for sure!

I've decided that shoe shopping is much more fun when I'm doing it for someone else. 

I got her some shoes that slip on and off fairly easily, as it's polite to take your shoes off before entering many buildings in Thailand.  Hopefully they'll fit well enough that she can at least wear them to the store!  I might pick up a pair of sandals for her as well-- if I can find any this time of year.  I think it's much easier to wear a pair of sandals that are a little small or big than it is to wear closed-toed shoes with the same issue.

That's one more thing to check off my list as we get closer to travel!


Sunday, October 14, 2012

In Which Connor Needs A Lift

Our respite care worker's care broke down yesterday, so Connor came along to Thai lessons.  It's getting pretty tough to carry him down the stairs, but with only a couple of months left before travel I feel like it's pretty important not to miss any lessons.  Towards the end he started getting a little loud, so we ended up leaving a bit early.  Otherwise things went well.

My little guy isn't so little anymore; I need to tie a brick to this kid's head!  I think his lift will be coming at just the right time, because he's getting increasingly difficult to haul around during the day.  It will be really nice to be able to make the transfer from his bed to his chair, out of the shower, and other places around the house. 

The lift will be portable too, so we can take it on trips with us, which should be really nice.  My back is starting to give me a little bit of trouble towards the end of the day after moving him around, so it will be great to have some mechanical help whenever Jer's not here to do the heavy lifting for me!


Saturday, October 13, 2012

In Which Connor Sees A Musical Big Top

Connor had a fantastic time at the symphony today! 

He seemed to be feeling much better today, so I decided it would be okay join our friends there.  The program was circus themed, and there were a lot of sing-along songs.  It actually had a bit of sign language included, which was nice for us!  Connor danced and clapped through most of the show, and it was just long enough to hold his attention without him getting antsy.  He got pretty excited and started signing "Daddy!" when the tuba came out on stage; he knew that's the instrument Jer played in college.  It was pretty cute.  It's definitely something I'd take him to again.

After the show was over we spent a little bit of time in the Soundbridge building, where they have a variety of instruments for kids to explore.  Connor tried out a tambourine and felt the vibration on the strings of a bass, but we ended up heading outside pretty quickly because the sound of twenty toddlers pounding on instruments in a relatively small space was a bit much for him. 

After that we all took a nice walk down to Pike Place Market for some lunch.  The staff at the restaurant we ate at were pretty taken with the kids, and they all ended up with balloons.  Loki tried to eat Connor's the moment we walked in the door, so it's been sequestered away in his room, where the cats aren't allowed.  Connor fell asleep in the car on the way home; I guess all the activity wore him out! 


Friday, October 12, 2012

In Which We Have A Pajama Day

Connor felt a little under the weather today, so we skipped the pumpkin patch that we planned to go to and instead stuck to the house.  He had a couple of seizures and spent a good part of the day sleeping.  Luckily he was off of school today, so he was able to take it easy.  Hopefully he'll be up for the symphony tomorrow!

So I spent most of the day snuggling him on the couch and watching a Korean comedic drama one of my friends recommended.  We do an Asian Soap Opera exchange.  It's interesting to watch the soap operas from different countries and see how the culture and censorship laws change the shows.  For example: in Thailand there's no mouth-to-mouth kissing allowed, so the camera does some very creative cutting. 

After watching a couple of Korean dramas, I think the biggest difference between those and the Thai lakorns (other than the kissing) is that the Korean dramas have a waaaay larger budget and better production values.  Otherwise they seem to run along a lot of the same themes.  Crazy, crazy themes.  The current one I'm watching involves a nun who cross-dresses to take her twin brother's place in a boy band, since he's recovering from botched plastic surgery.  Currently all three members of the boy band are in love with her, including the one that might possibly be her half brother.  Yeah.

Anyway, hopefully Connor will feel better tomorrow!



Thursday, October 11, 2012

In Which Everybody Conks Out

We got the good news today that our night nursing should continue!  This made me pretty darn happy; I've gotten to where I like my sleep.

The little guy's been out for the count since four this afternoon; he had a seizure at physical therapy today and so he was pretty tired when we got home.  He seems to be sleeping an awful lot right now; I'm still wondering if he might have a bit of something going on.  It could be coming down off the seizure med that's doing it too, though-- who knows? 

Anyway, that's about all I can think of; my brain is fried tonight.  I think it's from too much studying Thai-- I got in a good four hours today while Connor was in school.  This is even though I'm actually sleeping now instead of just staring at the ceiling off and on for several hours at night.  Who knew that vitamin D could have such a big impact on one's sleep schedule?

Good night!


Wednesday, October 10, 2012

In Which Connor's A Film Critic And I Speculate On Sibling Relationships

I tried introducing Connor to Singing in The Rain during his standing time today, and he was not impressed.  Apparently the lack of giant exploding chandeliers and musical murdering psychopaths was a distinct disappointment.  I guess we'll be going back to Phantom of The Opera tomorrow.

We received word today that his lift has been approved, which I'm pretty excited about!  It will probably take a couple of weeks to get in, but once it's here we'll probably start using it pretty quickly.  The little guy is growing like a weed, and it probably won't be too long before it will be pretty difficult for me to transfer him without some help.  Connor's night nurse is significantly shorter than me, so she'll probably be pretty happy about it too.

That is if we still have a night nurse by the time the lift comes.  No word yet on whether or not our insurance will allow us to continue night nursing after this week.  Sigh.

Oh well.  We'll deal with that if we need to.  Anyway, a few of you have asked whether or not Connor knows about Ellen and how he feels about his big sister to-be.  Connor has known about Ellen for over a year now; he waves "good morning" to her picture every time he goes to bed (there's a fourteen hour time difference between Washington state and Thailand).  He gets pretty excited when we talk about her coming to live with us and him having a big sister, but it's of course difficult to tell how much he understands.  I suspect he'll be pretty shy for a little while after she gets here, but only time will tell.

What I don't think we'll see is the same sort of decidedly negative reaction he displays whenever babies visit our house.  In my experience, once a kid is over the age of three or so he's generally perfectly fine with them.  I think it's because when a kid under that age comes over they are automatically the center of attention, so they become rivals for Mommy and Daddy's affections.  This is especially true when one of us is (gasp!) holding an intruding baby.  Horrors.

However, once a visiting child is old enough to walk and express themselves pretty well, usually they want to interact with Connor more than they do with us.  So instead of being interlopers, they become another source of attention focused on him, which the little guy is perfectly fine with.  I suspect that his sister will fall into this category.  Since she's over five feet tall we probably aren't going to be doing a whole lot of carrying her around the house, and while she'll of course be getting our attention too it's a different kind of attention than we would be giving an infant or a toddler.   He has very little problem with other children once they've graduated to kindergarten and up. So while we'll have to wait and see, I suspect the little guy will warm up to her pretty quickly. 

Hopefully Ellen will feel the same way about her little brother!


Tuesday, October 9, 2012

In Which Our Adoption Is Moving Along

I went out to check the mail late this evening and guess what I found?  It was our I-800 provisional approval! 

This was the next major piece of paper we were waiting for on our adoption, from the US Customs and Immigration Services department.  It seems like now that we're in the home stretch things are moving very quickly-- certainly that was an extremely fast turn around on her immigration paperwork.  Now we're just waiting on our Article 5 and our invitation to travel to Thailand!  I can't believe that in just a couple of months we'll be face-to-face with our girl.

So we're down to final preparations: picking up a couple of outfits for her (mostly cold weather gear, as Pacific Northwest winters are quite a bit cooler than she's used to-- we'll do the vast majority of her clothing shopping after she's home), getting the final bits and pieces of storage for her bedroom, and trying not to go absolutely insane while we wait to get on a plane.  It's been about 20 months since our dossier went to Thailand so you'd think this waiting would be a piece of cake, but I'm pretty sure that the closer we get the more agonizing it will be.  I'll do my best to be patient and wait just a little longer. 

I'm sure we'll be there before we know it!


Monday, October 8, 2012

In Which Connor Has Some New Shoes

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

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

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

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

Otherwise he's doing great!


Sunday, October 7, 2012

In Which Connor Loves Hat Music And Makes An Excellent Dog Whistle

Today our night nurse came over to do some day time respite care, which was very nice!  I spent pretty much all four hours of it at Thai lessons, and they were still going when I left. 

In addition to language (which I'm still very bad at as I'm learning to write Thai before I speak it) the teachers are discussing Thai culture and etiquette with me right now, which I think will be tremendously helpful both for the trip and for helping us better understand Ellen when she comes home.  I knew a lot of the big things, like not pointing at anything with your feet or touching anyone's head, but there are a lot a little things to learn too, like how you should never write a living Thai person's name in red ink and it's considered bad luck to have your hair cut on a Wednesday.  Interesting stuff!

Connor got to watch Phantom of The Opera again during respite care while he did his knee extension stretches, and I think it's his new favorite musical.  He's even come up with a name for it-- he calls it "hat music," which I think is his way of referring to the phantom's mask.  I'm pretty sure that means it's passed up Les Misérables for top billing in his mind, since that hasn't been assigned a name.  I'm not sure what a good nickname for Les Mis would be in his vocabulary, which is probably part of the problem.  "24601 music" would be a bit past his signing ability.

So anyway, if you throw in church too it was a very busy day.  It was the Blessing of The Animals service today, and so a lot of the congregation brought their pets.  Connor approves of short sermons because then the breaks between the hymns (his favorite part of the service) aren't so long, and so towards the end of the sermon he decided to help wrap it up by emitting a series of ear-piercing yelps, which set all the dogs in the congregation off.  He's big into the "making a joyful noise" part of things!  Oh well-- luckily no one minds.

He crashed right at seven, and I'm not at all surprised by that.  We've got another busy week coming up, so hopefully he'll sleep well!


Saturday, October 6, 2012

In Which We Visit The Farmer's Market

We took advantage of the gorgeous day to take a trip down to the Olympia Farmer's Market.  It was one of those absolutely perfect crisp-but-sunny fall days, and since the Olympia Art Walk was due to go on that evening, the streets were filled with art exhibits and musicians. 

If there's one thing Connor appreciates, it's good music, and that was to be had in abundance.  The folk band at the market place included a bass and a set of bongos-- both of which are on Connor's list of Favorite Instruments Ever.  We sat down and listened to the last ten minutes or so of their final set.  He was very disappointed when they finished their last song, and couldn't figure out why asking for more music wasn't immediately making said music happen.  Oh well.

Fig season is apparently over because I couldn't find any more at the market, which was very sad, but I did pick up some tiny seckle pears, which are as sweet as candy and nearly as good as the figs.  Washington, while more famously known for its apples, actually produces about half the nation's pears and so the farmer's markets are absolutely chock full of the winter varieties right now.  It's time for the second strawberry crop of the season too, so of course I had to pick some of those up.  They didn't last the ride home.

Finally I bought an enormous slicing tomato to eat all by itself with just a little bit of salt.  Huge sun-ripe tomatoes were one of the things I took completely for granted when I lived in Texas, and now they're one of the few things I miss about living there besides my family and friends.  The season is so short here that they're a luxury, and I have to eat as many as I can before the rain starts up again.

Connor now has a little prism to hand in his room from a booth he was completely fascinated by.  He ended up with something else too; on the way home we stopped at Best Buy and picked up a copy of the 25th anniversary edition of Phantom Of The Opera.  It's another one of those not-a-kid's-movie-but-I-know-Connor-will-love-it sort of things, and sure enough he was riveted through the whole thing.  It's a great way to keep his mind off his knee extensions and/or his stander, which is what he's usually doing while he's watching television.  I just covered his eyes at a couple of strategic points and we were good. 

And of course Colm Wilkinson sang as a special guest at the end of the program, which made me extremely happy.  I swear it's a good thing that man is almost forty years older than me, happily married with four children and living in another country, or Jer would have competition.  The man could sing an accounting textbook and make it sound amazing.

Anyway, so it was a good day!


Friday, October 5, 2012

In Which We Have A Better Day And Get A Bit Of Adoption News

No seizures today!  Connor seemed perkier and enjoyed his school day.  I'm happy he felt better and I hope that this will be the trend for a while! 

I had a pretty good day too; I picked up a big basket of ripe figs today, which automatically makes it a good day in my book as figs are one of my favorite Odd Looking But Amazingly Tasty foods.  I made a dinner out of them with a hunk of bread, some locally-made blue cheese, honey from a friend's hives and a mug of carrot ginger soup. 

This is why fall is my favorite time of year here; the sunny-but-cool weather and spectacular trees are nice and all, but the meals are fantastic. 

In other news, the Department of Homeland Security sent us a notice a few days ago (how did I forget to mention this?) letting us know that our I-800 paperwork for Ellen made it to them and they've passed it on to USCIS.  So with any luck we should hear something on that end some time in the next two or three weeks.  That will put us one step closer to Thailand and our daughter!  The

Jer and I have started looking heavily into our travel arrangements, so if any of you lovely readers have been to Thailand I would love to hear your recommendations-- especially in the way of hotel accommodations and things we really need to see.  We'll probably have three or four days during the trip where we won't have big things we need to do, so we'll be seeing the sights in and around Bangkok during that time period.  Obviously Ellen will weigh in once we get there, as she might have a few favorite places she'd like to visit, but I'd still love any suggestions you'd care to make!


Thursday, October 4, 2012

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!


Wednesday, October 3, 2012

In Which We Do Not Have The Best Day Ever

Connor had a seizure this morning that needed oxygen, and he slept through the car ride to school.  He perked up once we got there though, and apparently his school day went all right.  He's out for the count right now, so we'll see how he's feeling in the morning. 

It was a glorious day today so after Connor and I took a nice walk around the neighborhood, which both of us enjoyed.  It was a much needed pick-me-up after some of the other things that happened today.  I called the ticket office to try to buy us tickets to a children's program that will be put on by the Seattle Symphony in a few weeks only to be told that even though the performances weren't sold out and the wheelchair seating (or rather seat, as apparently they only have one in the hall where the concert is to take place) was free, all of the seats around it were sold.  So we won't be attending the program, which is a shame as I think Connor would really have enjoyed it.

So a word of advice to places of entertainment: if you are only going to have one wheelchair accessible seat in your venue, please make sure you don't sell the seat next to the wheelchair space until you've sold the rest of your tickets.  It's kind of a jerk move.  Or conversely, if you are reserving seats in a theater and there are plenty that are open, please don't take the seat next to the wheelchair accessible space unless you will be with someone in a wheelchair.  While there are no doubt some people who enjoy attending concerts by themselves, I'd be willing to bet that most  attend this sort of thing with at least one other person, like a spouse, parent, blind date, etc.  It would be nice if the people in wheelchairs could sit with that date during the concert-- especially if the rest of the theater is half empty. 

The weirdest thing is, I went and looked at the seating chart diagrams of the venue online and it clearly outlined multiple wheelchair seating areas and designated wheelchair companion areas.  So I don't know if that's changed, they're only using part of the venue, most of those are reserved for season ticket holders, or the guy just didn't know what he was talking about.  But yeah, no concert for us, and it didn't particularly make me want to go see anything else there in the future either.

Oh well.

Anyway, so after that whole debacle our nursing supervisor came for her monthly check-in with us and let us know that our insurance company has apparently decided that Connor isn't medically involved enough to need night nursing.  They are currently choosing to deny our referral renewal, which means that unless we're able to convince them otherwise all of our nursing care will stop at the end of next week.  Fabulous.  Hopefully this is just a fluke and we'll be able to make them see reason, because we need to lose night nursing about as much as I need a hole in the head.  Our nursing supervisor is going to go to bat for us, and I'll be giving our doctor's office a call tomorrow too to let them know the situation.  Whee.

So yeah, we took a walk, and then we went to the bookstore and the coffee shop, and then I came home put Connor to bed and stuffed my face full of chocolate cake.  So the day was somewhat redeemed.  Hopefully tomorrow will go a little more smoothly!


EDIT: In a genuinely classy move, a representative of the Seattle Symphony e-mailed me today to offer personal help booking our tickets-- which will now be complimentary.  That's pretty awesome.  Looks like Connor will be hearing some great music after all!

Tuesday, October 2, 2012

In Which Not Much Happens

Connor had a bit of a rough night; he woke up crying and then only wanted to sleep lying on me.  So we cuddled in one of the library chairs until our night nurse got here, and then he finally went back to bed. 

He had a tiny seizure yesterday morning but did all right today, so I'm not sure if he just had a nightmare or isn't feeling good.  When he got home from school he crashed and slept until nearly seven, and then he fell back asleep again at half past eight.  If he's not sick, maybe he's having a growth spurt or something-- who knows? 

He did go to school today, and he apparently had a pretty good day.  So I'll just keep an eye on him over the next few days and we'll see whether or not I need to take him in and get him checked out.

I spent a couple of hours practicing my Thai while Connor was in school, and then I took a nice long nap.  After that I spent a while doing chores around the house and running errands.  All in all it was a pretty quiet day.


Monday, October 1, 2012

In Which Nobody Puts Baby In A Corner

Today I decided was the day to look for a swimming team for Ellen.

While we're not sure which grade she'll be in yet, we're guessing that Ellen will probably end up in the eighth grade based on what level she's in school in Thailand.  The school district's swim team opens up for children in ninth grade and above, so she'll probably be here about seven months before she's able to join.  Because swimming is so important to her, we don't want her to have to wait that long before jumping back into the sport.  She's already going to be going through such a difficult transition; we don't want to take anything else away from her if we can help it.  If she chooses not to continue swimming that's an entirely different story, of course, but we want to have a place for her figured out before she gets here so we won't be left scrambling to find her a place.

At first we just figured we'd look into the recreational swim team options, but that was before we found out exactly how committed she is to the sport.  Not only is she apparently swimming seven days a week, but she's been competing on an international level.  Needless to say, if she wants to continue we're going to be slightly more involved in swimming than we originally thought, and a recreational team just isn't going to cut it.

There aren't any competitive swimming teams in our city, so I found a directory of teams in the local area and selected a few that I thought we'd be willing to drive to and would work with our budget.  I must admit to being more than a bit nervous when I picked up the phone to dial the first number.

I'm sad to say that I've run into more than a few organizations over the years who have either rejected Connor completely or were very reluctant to let him participate.  We ran into this issue long before the seizures started and his medical needs escalated, so this isn't simply a matter of people being unqualified to watch him-- something that is completely understandable.  I think it has much more to do with the fact that many Americans seem very uncomfortable around those with disabilities.

Case in point: I attended a church for about a year that encouraged me to leave Connor (who was about one and a half at the time) in the nursery.  They told me that the teacher was trained in CPR and had taken classes in early childhood development, and that Connor would have a great time with the other kids while I focused on the adult service.  So I finally decided to give it a try, and the teacher told me that she had everything covered and that she would come get me if there were any issues.  Every Sunday she assured me that he'd enjoyed himself.  The arrangement worked very well for about three months. 

Or so I thought. 

Then one Sunday I needed to leave the service a bit early and walked into the nursery to discover Connor lying by himself in a crib in the corner, staring at the ceiling while all the other children had story time.  It turned out that Connor spent an hour and a half in that crib every Sunday while all the other kids played, did crafts, and had a grand old time.  The teacher informed me that she "didn't know what to do with him and didn't want the other kids touching him, so it seemed like the best thing to do."  For three months, she'd been sticking him in the crib directly after I left for services and took him out about ten minutes before it was time for the kids to rejoin their parents. 

Needless to say, that was the last Sunday we ever attended that particular church.  And let me tell you, the incident in no way helped me get over my Helicopter Mom tendencies.

Anyway, most of these swimming teams cater to the serious, elite able-bodied athlete.  Since I was calling to ask them about taking on a swimmer with a disability, I wasn't sure what kind of reception I would get.  I absolutely didn't want to put Ellen in a program that would isolate her from the other kids or would simply accommodate her; I wanted to enroll her in a program with coaches that would be genuinely happy about her being there and wouldn't leave her in the corner, so to speak, while all the other kids had a great time.

On the second phone call, I hit the jackpot.

The swim team practices about twenty minutes away.  They already have several children and young adults with disabilities who swim competitively enrolled, and one actually went to the paralympic time trials for swimming this past year.  The coach was enthusiastic about the idea of Ellen joining, and explained how it would work.  He'd meet with her one-on-one to assess her skill level, and then she'd be assigned to one of the teams, which are mostly made up of swimmers without disabilities.  She'd be fully included and practice with the rest of her teammates, and if there was an exercise that she wasn't able to do they'd simply give her a modified version. 

She'd also be able to compete in the local swimming competitions with the typical kids, and there would be opportunities several times a year for her to travel to competitions for disabled swimmers in the USA and Canada, if she qualified in the necessary time trials.  It sounds like a fantastic program, and hearing the excitement in the coach's voice as he asked me when she'd be coming and joining the team made me so happy that I'd picked up the phone. 

I can't wait to get her home!

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