In Which Connor Gets The Snuffles And We Do A Bajillion Things

Little guy woke up all snuffly this morning, and it looks like he may be coming down with a cold.  I'm hoping he's just having a bit of an allergic reaction to something instead of getting sick again, but it's not highly likely.  Oh well-- hopefully this will be a mild bug and he'll be over it quickly.  He's snoring so loudly right now that he keeps waking himself up.  Poor little boo.

The snuffles didn't slow us down too much today though; we had a lot of things to do.  We dropped off laboratory samples and paperwork at three different medical facilities across town.   I got the ball rolling on qualifying for night nursing care, and Connor is now on the waiting list for outside weekly physical therapy.  It looks like tomorrow is going to be just as busy, so hopefully little guy won't feel too under the weather.  We'll just have to see.

Uh oh-- I can hear a lot of coughing going on in the other room right now.  Jer sounds like he might be coming down with the same cold.  Hopefully that means he'll be mostly over it by the time I get it.

No more being sick allowed!

~Jess

In Which Connor Gets A Letter In The Mail

Last week, Connor got a letter in the mail.

It read:

"Dear Connor,
     I just want to tell you how much I admire your incredible spirit and your ongoing courage.  You always do your best at school and always with such a great attitude!  I am so proud of you!!
                                                                                       Love, Miss Janet"

Who is Miss Janet, you might ask?  Miss Janet is only the best preschool teacher in the entire universe.

Many of us probably remember one teacher who really sparked a love of learning, who made going to school fun and radiated the kind of enthusiasm and love that kids can't help but respond to.  Mine was my kindergarten teacher (Miss Sidweber, if you're out there, you are amazing).   Miss Janet is that kind of teacher.  Connor has had her for three years now and I think she's a huge reason why he gets so excited every morning when it's time to go to school.  You all know me and that I'm just slightly paranoid about letting my kid out of my sight, but from day one I've been able to walk away from Miss Janet's classroom knowing I've left him in the best of hands.

We haven't made it easy on Miss Janet in the past few years; there have been a few ambulance calls, lots and lots of absences due to various health-related issues, and the unique challenges of teaching a child with Connor's combination of extremely easygoing personality (read: difficult to motivate), communication challenges and physical special needs.  Not to mention that she has to deal with me, the ultimate helicopter parent.  She's handled it all with grace, and I think many of the strides Connor has made in the past few years can be directly attributed to her and her amazing team of paraeducators and therapists.  She pushes him to make new strides and manages to make things fun while she's at it. 

And I've never heard her complain about having a bad day or about any of the kids-- she showers them all with compassion and challenges them to do their very best.  I've seen kids who had to be carried screaming into the room at the beginning of the year blossom so that by the end of the year they are all smiles when they get to school.  It's obvious that the kids, no matter their developmental level, realize that Miss Janet's classroom is a safe place where people love them and will help them grow.

He'll be graduating from her class this year and heading on to first grade at a new school, and I desperately want to stuff her and her phenomenal team in a suitcase and take them with us.  Or if that won't work, maybe we can clone them all.  I'm sure the rest of his graduating class would probably like their own personal Miss Janet to take with them too.

Seriously, everyone needs a Miss Janet.  She takes the time (sometimes well into her lunch break, as I am a Slightly Needy Parent) to let me know how Connor did in school every day.  She and her team have come to our house to have meetings with us about his care.  She sends him personal letters in the mail telling him how proud she is of him, for pete's sake.  You can't get much better than that. 

So Connor and I read his letter and after I pulled myself together ("Mommy's not crying Connor-- my eyes are leaking") we put it up together on Connor's bulletin board where we hang all of his important artwork and awards and whatnot.  It's hung at wheelchair level so Connor can see it and we read it often.  He always smiles when we get to the part where she tells him how proud she is of him, and asks to hear it over and over again.

We're going to miss her so much.

~Jess

In Which We Have A Lazy Day

I had a lazy day today, which was much needed after our crazy week.  Jeremy let me sleep in late, which was good because Connor stayed up until the wee hours of the morning.  I think I'm going to get on that night nursing care thing ASAP.  I'd like to catch up on all the sleep I've missed.

Connor seemed to be feeling better, which was a very good thing.  He got through about one and a half hours worth of WALL-E in his stander, which was pretty awesome.  Then he did a whole bunch of tummy time where I stretched out his hips and hamstrings.  He was not terribly thrilled about that part of the day, but he tolerated it okay.

Our adoption agency is off to Thailand on Monday!  We sent a small care package with them and a short list of questions for Ellen and her caregivers about how her year has gone.  They get back a week and a half from now, so from that Wednesday on you can expect me to be glued to my phone.  I can't wait to get an update on our girl!

~Jess

In Which Connor Goes To Clinic And I Might Actually Get Sleep Someday

Another super crazy day today.  Seems like we've had a lot of those this week!

We got up bright and early this morning and drove down to the hospital for Connor's developmental clinic visit.  This year he was in the neuromuscular clinic, so we saw a developmental pediatrician, physical therapist, neurologist and genetic counselor.  Also the urologist and the head of the developmental peds department popped in as an added bonus. 

Basically the purpose of the developmental clinic is to make sure Connor is receiving all of the treatment and services he needs, and to get a general picture of his overall health as well as current medical issues.  Jer was able to come for the first two appointments, which was pretty nice.  He doesn't get to come to Connor's appointments very often, so it's always good to have him along. 

The basic conclusion the doctors came to was that for the most part we're on top of things as far as Connor's care goes, and that we've got our bases covered with his therapy, adaptive equipment and specialist appointments.  There was one thing that the developmental ped thought we could add to our repertoire as far as services go, though.  Connor is enrolled in the Extended Care Health Option (ECHO) with our insurance so that we can receive the medical equipment that he needs.  One of the things that ECHO covers for certain children is home health care.  Because Connor is a medically complicated child and he has a g-tube pump at night, we should be eligible for 40 hours of home nursing care a week.  This isn't meant to be used for childcare services, and it is in addition and not a replacement of our current respite care services. 

The big benefit for us is that five days a week I could have a nurse come in and monitor Connor at night while I got a blissful eight hours of sleep.  Seriously, eight hours of sleep on a regular basis sounds like some sort of crazy pipe dream to me right now.  I can't remember the last time I got eight hours of sleep five days in a row, but I think it probably happened before Connor was born.  So if we can get that set up it would be pretty fantastic for me.  At the very least it would seriously lower the amount of money I spend on caffeine each month. 

It wasn't all great times today though-- he started getting a migraine after the first hour or so of clinic and he threw up all over me.  Then when the urologist came in and did his quick check the little guy's diaper didn't make it back on properly and about twenty minutes after he threw up all over the place he somehow managed to pee all over my lap and yet mysteriously get none of it on his own pants.  I still have no idea how that happened.  Anyway, we still had about two more hours of appointments to get through, and I wasn't exactly as fresh as a daisy by the end of it. 

The little guy wasn't feeling so hot either, though it wasn't because he was covered in various bodily fluids.  He spent the whole car ride home with his eyes closed and his fist pressed up against his forehead, and then he napped for the next four hours.  I gave him some Tylenol, but sleeping it off seems to be the only really effective way to treat his migraines.  When he woke up he was totally wiped out, and just wanted to spent the rest of the evening curled up on my lap with his head buried in my shirt.  So it was not the best day for the kiddo-- being poked and prodded and then getting a massive headache is no fun. 

Of course now he's wide awake and chipper.  Oh well.  At least I can sleep in tomorrow.

~Jess

In Which We Have A Paperwork Day

Another busy day today-- this one filled with a ton of paperwork and phone calls.  I usually designate at least one day a week to handling all of Connor's appointment booking, insurance calls and forms, and I spent several hours at it today.  The little guy has his annual developmental clinic appointment tomorrow, so I needed to make sure we had all our ducks in a row.  We alternate which clinic we're seen in each year, and this year it's the neuromuscular clinic. 

Though come to think of it, I'm pretty sure we saw the neuromuscular team last year.  Oh well. 

Anyway, he'll have about four hours worth of appointments and he'll be missing a day of school, which unfortunately can't be helped.  Because they have to get the team together, they only schedule these for 8:15 in the morning on Fridays.  So there's no way around it.

So after getting his stuff squared away for that, I scheduled a urology appointment for him and got the ball rolling on his physical therapy outside of school.  We'd dropped our outside therapy because Connor was having such a hard time that we were having to cancel constantly, and when we actually did go he was so dang tired he'd just fall asleep in the middle of the session.  Thankfully he's got a lot more energy now and we have some specific things we'd like to work on, so it's time to add it back in.  All the paperwork is now filled out for that, and I'll drop it by the hospital when we're finished with the developmental clinic appointment.  They are at two separate hospitals, of course.

Oh, and the triage nurse for Connor's nephrologist called to talk to me about scheduling the next blood and urine tests for the little guy's creatinine levels.  She's at hospital number three, but we're trying to stack the blood test with Connor's next seizure level check to reduce the number of times he has to be poked, so the test will probably be at hospital number four.

 I am extremely lucky that I can be a stay-at-home-mom, because I have no idea how the heck I'd manage otherwise.  I'd have to assign the cats to making these phone calls, and then instead of Connor having appointments we'd just end up with large mail-order deliveries of canned tuna. 

Finally there was Connor's IEP reevaluation paperwork, which I need to get turned back in so that we can schedule an appointment to talk about next year.  Connor will be changing schools and starting first grade, the thought of which makes me want to put my fingers in my ears and go LA LA LA LA LA because he can't possibly be that big.  He won't be the only kid transitioning of course, so we need to get it turned in so that they have plenty of time to schedule everyone without having to cram them all in at the end of the year.  Connor has a few different options as far as schools, so we'll be looking things over carefully to figure out which program will be the best fit for him. 

This school year is just flying by!

~Jess

In Which Connor Gets A Chair

We had another busy day today!

Connor and I drove out to Olympic Pharmacy in Gig Harbor to pick up his corner chair, which arrived today.  Specifically, this corner chair.  We picked it over the others we looked at because it's simple, came with a tray and also because it didn't have any cloth pieces on it, so it's super easy to wipe down.  I think it's going to work out really well for him-- especially when he's using his iPad.  Once I get the H-harness adjusted correctly (he's not wearing it in the picture) I also think it will be good at preventing him from leaning over and exacerbating his scoliosis.  We'll see how that goes!

We also had a minor adjustment made to Connor's wheelchair; the back of the chair wasn't locking properly in place.  Luckily it turned out that the only problem was that the headrest was a little too low and not allowing the mechanism to fully lock.  So they just adjusted the headrest up a bit, and the problem was solved.  I love easy fixes like that.

After we were finished at the pharmacy we hopped back in the car and drove across the street, where we ate a late lunch in the cheapest restaurant available in the somewhat upscale shopping area.  I think we must have hit the restaurant on Active Elderly Women Lunch Date day, because they were everywhere.  Connor is an AEW magnet.  By the time we'd left the restaurant, we'd had no less than three pairs of women approach our table simply to tell me how adorable Connor was.  Connor gave them a halfhearted wave while they cooed over him and went back to watching the wind blow the patio umbrellas around outside. 

I swear it's like living with a celebrity. 

Anyway, it was a gorgeous day outside so we ended up walking around for a while, and then stopping by a plant nursery on the way home to pick up another shrub or two for the front yard and some seeds for the planned vegetable garden.  I have quite a bit of planting to take care of now, so I'd better get moving!

~Jess

In Which We Drop Off Some Things For Ellen And Have A Busy Day

We had a pretty busy day today!

Connor had a great day at school, and we stayed a little late afterwards so his physical therapist could try out some kinesio tape along the little guy's spine.  We've got a little while before his back brace will be made, so she wants to see if she can get him to use his back muscles a bit more in the meantime.  We'll be keeping a close eye on him to make sure he doesn't have a reaction to the adhesive from the tape.  So far so good.

After that we stopped in at the house so Connor could have some quiet time and I could make some phone calls and take care of some chores.   Then I loaded up the car with the donations for Ellen's orphanage I've collected over the past year and with her latest care package, which was Valentine's day themed.  It may end up arriving sooner than her last care package, which we sent off a couple of weeks ago, because it will be delivered in person.  Our adoption agency leaves next week for Thailand, and they'll be visiting Ellen on one of the first days they are there! 

Hopefully the visit will go well and we'll have a better idea of what the status is of her file when they get back.  Our dossier will have been in Thailand a year in March, so we probably still have another year or longer before we can expect to travel.  It's likely that they are still compiling Ellen's file and completing her background check-- basically an exhaustive amount of research making absolutely sure that the potential international adoption is legal, ethical and the best available option for her, and that there's no possibility of her being cared for by someone in her birth family or being adopted in Thailand. 

In the meantime I'm slowly continuing to learn Thai-- I've got a pretty good handle on the alphabet now, though I'm sure my handwriting is probably atrocious.  I haven't plucked up the courage yet to write anything in Thai on Ellen's letters other than her name on the envelope because I still don't know enough Thai to do more than copy phrases out of books, and I'm afraid I'll screw up, think I'm writing something like "We love to cook Thai food for dinner" and actually end up writing something like "We love to cook Thai children for dinner."  There's nothing like promoting cannibalism to make a good impression on your future kid. 

So we'll continue to rely on our agency's more than competent translator and I'll stick to just practicing for now. 

I can say a few short phrases in Thai now too, but I don't know how useful they'll be in communicating with Ellen.  There are only so many situations in which a phrase like "the boys are reading" is going to be relevant, and while I can also discuss the current reading status of a man, men, woman, women, boy, girl and girls this doesn't extend my conversational skills by much.  Hopefully by the time Ellen comes home I'll know a bit more! 

The agency will be taking a video camera with them and we're hoping that Ellen might be able to demonstrate some of her English, pass on some questions for us or tell us things she'd like us to know, but it will be completely understandable if that doesn't happen.  My guess is that if you pull any fourteen year old girl out of whatever it is she's in the middle of doing and stick her in a room full of strangers who point a video camera at her and ask her personal questions through a translator, she's not exactly going to be a Chatty Cathy.  We've been blessed enough to see some of her amazing personality shining through in pictures over the past year in situations where she's more comfortable, so we'll just be happy to see her on film even if she doesn't say a single word. 

And hopefully when our agency gets back we'll have a better idea of where we are on the timeline.  Keep your fingers crossed for us that things have been moving along!

~Jess