a little brag!

Ok. Just too excited not to share! Joan stood all by herself TWICE yesterday! A new milestone reached! Yay for Joan! The first time, i don't even think she knew she was doing it. She tends to brace herself against walls with her hip, and she just pushed off with her hip, and was floating free for a few seconds. The second time was deliberate. She was in the drained tub, waiting to be pulled out. She had let go with her right hand, and was looking like she really wanted to let go with her left. But she was bent forward, so it looked awkward for her. So i offered her my hand, so she could pull upright - so she took it, stood up...and then she let go! She stood there all wobbly and looking a little freaked out for a good four seconds, before putting her hand down again! She hasn't done it again today, but now she knows she can, so I think it will turn up more and more often.


She had a physio appointment today! It went great. Because she's mastered a lot of the things we've started with, they're upping her goals quit a bit. Due to everyone's holiday time, we won't be back until early August. In the meantime, they want me to teach her how to cruise along a flat surface, like a wall, and climb stairs. They said a good way of doing the flat wall thing is to start at the fridge, with lots of fridge magnets that she can push around. If it's a fun place to be, she'll be more likely to get up on her own to play there. Right now, she's only pulling up against tables. Cruising down hallways is also good - it's to build trunk support. I'm supposed to brace her against a wall and let her go. She'll need a ton of tummy time to help her get it done. That and stairs - they said it's good exercise to build those pulling-up muscles. We can start with any low platform. She's always trying to climb up on John's bed, so they suggested we start there, and move up to real stairs as soon as she's able. We're supposed to do tummy time with a little pillow under her belly to start, to get her right up on all fours. She plays on her tummy now a lot, but she plays propped up on her elbows. It's good for loadbearing work for her upper body, but not as good for mobility. They tried to do it there, but she was having none of it. But we usually have better success with their assignments at home, which they said is the norm, so hopefully it will go well. So be prepared! These are big, big goals they've set for her, and these are the things we'll need to work on while we're in Dryden and Geraldton. Looks like we'll be spending a lot of our visit in everyone's stairwells and hallways. :-P We're also supposed to provide a lot of sensory stuff, too. The stroke can cause a change in sensation to the affected side. Some kids can feel more - others can feel less than normal. Part of what her hand brace does is provide pressure and sensory stimulation, so for kids who have very little sensation, it can get some neurons firing. Joan seems to be in the low-sensory category. Now that she's got the brace, she seems to have a heightened awareness of her right side. She's finding object with different sensations and stroking her right arm with them, which is something she's never done before. So fabric, or cotton balls, or crumpled paper - anything she finds. It's pretty neat to see, and the therapists said that's exactly the type of thing they wanted to see from the brace, so to keep the sensory input coming, and to lay it on thick.

We signed John up for preschool yesterday. Not the one we were thinking of before. We found an academic one that filled up months ago, but they opened up a new class, due to the high demand, and we managed to snag a spot! yay! it sounds a lot like his school in Hamilton, and a LOT like real JK. They take trips in the community, like to the library, and to Safeway, where they'll learn about nutrition, and to the firehouse, where they'll learn about fire safety. They do an annual trip to the zoo, too, which sounds cool. It's located in a school, though not our school. It's right next door to a library and a public pool, and near several major shopping centres, so I can do things with Joan and run errands while he's there, though it isn't far from home either. I thought at first, when I saw the pool, that I should take Joan swimming while he's there - it's one of the things they recommend for her in therapy - splashing is a great way to build muscle. But I realized, hey, I'm going to have a newborn in September. So that might nix that. We'll see. Maybe I can get a waterproof carrier of sorts for the new baby, so we can still go now and then. But anyway, this school solves a lot of the problems I had with the other place - one, it's taught by properly trained and board certified teachers and ECEs - the other was taught by ECE students and recreation grads. To me, that's a big, big deal. It's the teachers who made the real difference in the Best Start program. They were amazing, and really helped him blossom. Two, there's a common snack. The other place, we had to provide snacks ourselves, which I think would lead to snack envy, and a hoarding mentality. Snack seems like such a trivial thing, but I think it's an important thing in preschool, because it peer pressures them into trying new foods, and it shows them how to share, like at a normal family dinner table.

Anyway, better go. Lots of niggly jobs to do before the flight this weekend. Bloodwork to get done (the dreaded glucose test), W inc paperwork to do. Lots of mailing, lots of faxing, lots of forms. Lots of fun, fun, fun!

Mike...

I'm going to try to get that camera up and running again. This blog is looking dull. And you have to see Joan's cute little curls! Her hair is really coming in - she has her dad's wavy curls.

Speaking of dad, he's down sick. He's been off sick for FOUR DAYS! I don't know if it's the weather, with all this non-stop cold and damp, or if the bugs here are just more stubborn than what we're used to. He finally went to the doctor last night, after taking an obscene number of painkillers for two achey ears and a sore throat. They think both ears are infected, so he's on antibiotics now. Hopefully, he'll feel better in the morning. And more importantly, hopefully no-one else will catch this one! It hasn't been all bad having him around - it's let us tag team with the kids - while he's up, playing video games, I can sneak off for a nap. It's really helped - both the marathon contractions and headaches have completely stopped!

Kids are still doing great. Joan's physio is going well, and she's liking her new hand brace - when she wears it, she brings her right hand in to play a lot more. She tolerates it for about half an hour a day now. We're supposed to work up to two hours a day, and they'll assess how well it's working at the next appointment. But I can already tell it's making a difference. We've been working on the language, too. We're supposed to keep track of her gestures, and she has quite a repetoire. She also has more words than we initially realized - we just needed to listen harder. And get her away from John! He kind of dominates the conversation, to put it mildly. Today, I went for groceries with just Joan and I, while Mike watched John, and she was doing great. She asked for apples! She pointed wildly at the apples and shouted "Ap! Ap! Ap!" So I put some in a bag, and she was happy. She asked for bananas, too! But it sounded more like "ah-AH-ah! Ah-AH-ah!" It was pretty neat. Usually, she's quiet, but maybe she's just letting John do all the talking. Hopefully, we can get more opportunities to have one-on-one time with her. She's learning her colours too! We played a game with her Duplo last night, after John went to bed. I showed her all the colours, then asked her to find certain ones from the bucket, like "can you find another yellow?" About half the time, she got it right. You could really see her thinking. Though a lot of times, she was ignoring me, and just building rocket ships. It was hillarious - she'd build a big stack, then she'd make it fly through the air, with the appropriate "flying rocket" sound effect, that John taught her.

John's doing well, too. He's getting very excited about his fourth birthday. He knows it's coming, and is looking forward to cake! He talks about it all the time! He wants something very specific as a present, but I'm not sure we're going to get it. it's called trap jaws - a truck/shark hybrid thing. Not sure he needs yet another truck, though. Maybe painting supplies. I think he'd like dess-up stuff, too. A tool kit, or a doctor kit. They don't get the attention of trucks at the toy store, but I think he'd get a lot out of something like that. When I went to pick him up at the sibling room today, he was Dr. John - complete with a little plastic stethascope. He had a blast! (Dr. John is one of his favourite personas - followed closely by Worker Man John. He loves it when one of us is sick - we become his patients. He has excellent bed-side manner).

Our building is still unsold, but apparently there was an offer. But it all fell through right at the last minute, according to the agent. We had a second showing a ouple days ago. A very wealthy-looking oriental couple. The agent said the word from those interested, is they'd like to keep it as a duplex, but renovate the neighbour's side (their lease wasn't renewed, so they''re moving at the end of the month), then offer us the other side, and renovate our side while it's vacant. Obviously, it's to get more in rent. It makes us a little nervous - not sure just how high it could go. But we'll play it all by ear, and see what comes our way.

The city is starting to gear up for Stampede - stringing lots of banners and stuff. I think it's the second week in July or something. I'm not looking forward to it - I hear the crowds shut down the city, and we live fairly close to the action. But if anyone wants to see the Stampede, but are deterred by the solidly booked hotels, you're welcome to bunk with us! Mike booked some time off in July, and is planning to rent us a cabin in the mountains, to take John fishing and canoeing, and escape the city before it becomes a bad idea for me to be too far from the hospital. But I don't think the dates completely overlap.

Anyway, Joan is getting bored, and I think Mike is stirring, so better go!

baby three...

just a quick note on baby 3 - I had an OB appointment yesterday. (Have I mentioned that we've been in a lot of doctor's offices lately?)

She said the baby looks awesome - heart rate was 161, it's head down, and squirming all over. It's growing on schedule, and all test results so far are normal. I've been getting lots of really severe headaches lately. She told me to up my Tylenol dose for now, and watch for spots. If that happens, go to emerg right away. She said my blood pressure is consistantly as perfect as can be, but sometimes blood pressure complications can happen even in people with good blood pressure, which seems a bit odd to me. She also told me to keep a close eye on my Braxton Hicks contractions. She said they're a bit too aggressive for this stage of pregnancy (27 weeks). They come in long, long spurts, and sometimes by the time they end, they're actually getting painfull. She said if they go on for more than a 45 minute stretch, to head to the hospital for an assessment, just to make sure my cervix isn't getting over-eager. She's really convinced this delivery will be very fast, because my body's already done it twice. So she warned me if it does turn into real labour, I may not have time to get to the hospital, so I need to pay attention. I'm not sure what to do - I have contractions almost constantly some days. Now and then they hurt, though mostly they're just really annoying and uncomfortable. She switched me to appointments every two weeks, and told me to get more sleep, to see if that would help settle down the headaches. I did manage to get a nap yesterday, and it did help soften it up a lot. I'm sure it's more likely tension than blood pressure, and she seemed to agree. I'm not TOO concerned about the contractions. I remember with John and Joan, they definitley increased with stress, and things have been a bit tense here lately, with Mike's long hours and no days off. And it's harder for me to keep up on my end of stuff - my hips are just completely out-of-whack this time, which makes it really painful to walk and bend a lot of days. If I do a lot of cleaning in one day, it's all I can do to shuffle off to bed at night, it hurts so much! It's terrible. I'm falling apart! I'm trying to get John to help with some of the tidying, but he's only three - I can only expect so much. But he's happy to do what he does do, which is great.

Anyway, better go. It's fast approaching lunch and nap time! Mmmmm.....nap.....

joan's physio

Joan had her second physio appointment today. It was a biggie! Lots got done. They pulled in the speech pathologist, and they also made her a brace for her hand. We were there a whopping three hours! But it was good. I got lots of questions answered, and got some straight facts, which was nice.

Joan was extremely shy when we first arrived at the therapy room. She spent a good chunk of the first hour with her face burried in my shirt. Though they did manage to coax her to play with a puzzle. By the end, she was interacting and playing with them, but it was slow going. So the speech pathologist never actually heard her utter a single sound. But she asked a million questions. She feels things are going alright. She has all the building blocks of speech. I'm supposed to pay close attention over the next two weeks to gestures, and note their frequency and purpose. Obviously, gestures are the precurser to speech. We're supposed to try to get her to mimic us more, and make a special point of using lots of gestures, and point things out in the world for her. They're going to hold off on formal testing for the time being, because the pathologist doesn't think it's needed. She may be naturally delayed - genetics plays a role - both mike and john were relatively late speakers, so it may just be how she's designed to be naturally. But just in case, they're ordering a hearing test, similar to the one she had at a few weeks old. But this one is a little more elaborate than a set of headphones. It'll be done in a soundproof booth, and they can test more frequencies now that she's older. She says it's routine for all patients whose parents are concerned about a lack of talking. But she said not to be concerned about words vanishing - that's completely normal. Especially with kids like this - there's often a more extended period between when a word first appears, and when it becomes in common use. In between, it can vanish for a much longer period of time than a normal kid, which is normal for them, but alarming for parents. But she's being watched and assessed by a therapist, which is a very good thing.

The therapists saw good things from our work over the last two weeks - they could notice her progress pretty easily, which was nice. We need to keep plugging on, and they added a few other games and things. They added some things to strengthen the right side of her trunk, because she spends so much time on her left hip. They gave me a few games to strengthen her upper back as well.

As I said, they also made her glove, which was pretty exciting. They made it right while we waited. It took them ages, with fitting after fitting after fitting. After it all, I asked how much. It cost us $1! I howled when they said that. In Hamilton, they warned me that the hand braces are expensive, because they're custom made. But there, they have to bring in someone from the outside. In this place, they have a sewing room, and the OTs make them themselves.

They showed me the pool, too. Yup, they have a pool right inside the hospital! Most of the kids in therapy really enjoy the pool, so they do a fair bit of water therapy, and Joan may be prescribed that too, down the road. Have I mentioned what an amazing place this is?

They also invited me to a parent thing, where other parents with kids in therapy come and talk about the struggles of the diagnosis process, and how they feel about everything. They said it can be really helpful. I think i might just go, though it's not for a few weeks. Thought I may not meet another famly just like us. Joan is a rarity, even for a big hospital like this, they said. They may get a case of two each year of these strokes. They said if we want down the road, they can hook us up with some other parents with Joan's exact condition - they have one on their roster whose son is five right now. Then, we can have someone out there who'se been through what we're going through right now, and it might give us a better idea of what to expect from Joan, and from the hospital experience. Other than that, any group things will be with kids that are similar, but not exactly the same.

One very serious thing came out of this meeting. I'm hesitant to put this here, because I'm concerned how people will react. But I've had a few weeks to let it all sink in, and i feel better about it, now that I've actually gotten some real answers from her therapy team. I think there's value to a certain degree of transparency, so I'm going to put it in. Joan's actual "diagnosis" is cerebral palsy. That term has swirled around her since her initial diagnosis, way back in Hamilton. So I finally came out and asked if that's what she's got, and they said yes. It went unsaid, because they don't generally attach that label until after the kid turns two. Obviously, what society thinks of when they think of cerebral palsy does not even remotely match what Joan is. But in medical terms, it's brain damage caused between conception and two years of age, and manifests itself in the motor skills. It can have a million causes - one happens to be stroke. She has the spastic variety, which means a tightening of the muscles - not the herky jerkies a lot of people might think of - that's a different kind. The reason the label doesn't usually get attached until two is because sometimes, the stroke is so mild, that it's largely just swelling, when it's fresh. Then, over a couple of years, the swelling goes down, leaving the scar. In some cases, there is a miniscule scar, and the motor damage doesn't stay, in which case, the diagnosis isn't made. But it Joan's case, because the damage was extensive, and has affected her motor abilities, even a year and a half later, when most of the swelling is gone, the term, by definition, applies to her.

I was very, very upset when I first put two and two together, and realized she did, in fact, have cerebral palsy. It carries a very serious stigma with it. But I'm starting to come to terms with it, and I hope all of you can, too, at the very least for Joan's sake. It's just a word. They still see bright things in her future. She's not mentally handicapped. She's going to be OK. She's still the giggly little goofball she was yesterday. Her case is very mild. She'll never be catatonic, drooling in a wheel chair. The damage is done - it won't get worse. At the end of the day, it's just a word, and you have to make a choice on what emotional weight you want to grant it.

That said, it is a "disablity". (Oh, how I hate that word!) And because of that, we actualy should qualify for a disability tax credit, because we have a "disabled dependent". It means whomping tax breaks, and a huge increase to our child benefit cheques, once all the paperwork goes through. We haven't started it yet. The therapists said they'd help get us through, but it's got to be done by a doctor - typically a pediatrician. We have a referral to a pediatrician in August, so they said to print out the government form, and take it along when we go. The pediatrician can take it from there, and the therapy team will back it up. It also lets us claim our portion of her braces and walkers, and even tutors, if she needs them down the road, on our taxes. It gives her extra tuition and book tax credits for university. All in all, it's a good thing. I don't like the stigma of it, though. I don't like the labels at all. I don't want her to have that "oh, I can't do it because I'm disabled" crutch, as an excuse to stop trying when things get tough for her. But for the time being, it could come in handy, if we go for it, and the approval goes through. Mike and I have some talking to do about it, obviously. We had decided when we saw the MRI, and realized the full extent of the damage, that we wanted to make her life as normal as possible - to treat her condition as trivial as possible. It may be harder with an official designation like that. So we have some decisions to make, for sure.

Anyway. The natives are getting restless, so I'd better go!

stilll...kicking....

Just stopping in to let you know we're all still alive! Things have beena little busy here, to say the least. But my belly and back are aching from standing at the sink to do dishes, so thought I'd do something productive with my recovery time. I definitely don't have the stamina I used to. I'm so glad we're living in a bungalow! No more four storeys of stairs to climb. I get winded just climbing the hill to the driveway most days. It's pretty sad. Being sick doesn't help, though. I have a bad cold that I just can't shake. It's starting to ease off now, but it sucks not being able to breathe, and being so tired.

Kids are doing awesome. Joan's physio is going great. Our next appointment is Thursday, and I can't wait to show off her progress. We've been following the instructions, and doing all our stretches, and it's really paid off. Her hamstrings are much, much better now. They were so shortened, they were giving her bad posture, but now she can sit right up straight, and sit with her legs straight out in front without crying. She only balks at one of the stretches now - it's twisting her arm so her palms face up. That muscle is still very, very stiff, which is to be expected - it was the most severely affected by the stroke. I feel like it hasn't progressed at all in the last week or so. But with the rest, she's doing great.

John's doing well, too. He's very eager to start preschool! He keeps trying to convince me that the leaves are turning colour, because it's fall and time to start school! We found one offered by the city that I think we're going to go with. It's preschool mixed with games, held at one of the rec centres. So they take them skating and swimming in the building, and give them open gym time, as well as all the usual circle time and singing and stuff. Mike thinks that would be really fun for him, and we can suplement it with these little short-term academic-type ones, they offer, if we see the need. But really, he's doing so well. He's become obsessed with letters, and he's learning them so quickly! I don't think he'll be reading by four, but I think he'll have most of the building blocks in place. he's working on letters and their sounds, and from there, reading is just a matter of stringing them together. He's also very big on anatomy as well - probably because we've spent so much time in doctor's offices lately. He loves to pour over their little models and diagrams. He knows an aweful lot! The doctors love it - they've all been great about taking the time to explain everything he sees, and answer all his questions. I think he learned more about the thyroid than he'll ever need to know, the last time we were at the OB. They just opened an anatomy display for little kids at the science centre, so I'm hoping if Mike ever gets a day off, we can take him - apparently, it talks about all the organs and where they are and what they do, and how they all work together, all told with Sesame Street Characters, so it's all age appropriate. Not sure I want to see Big Bird's innards, but I think he'd like it. Though it may be a little below him. He's so smart. I find we don't have to explain things to him very much at all - he just gets it with a quick explanation, so we try to be as frank and scientific as possible when he asks us questions, (and the doctor have all done the same, which is great - they never talk down to him.) The exception are his "soldiers", which are white blood cells. We invented that analogy so that he would eat and drink during a really big flu a while back, to give his soldiers the energy to fight the germs. it worked like a charm. Now when he's sick, he's not eating because he wants to, but because he needs to take care of his soldiers. It plays right into his uber-compassionate side. Though, sometimes, he gets things a little mixed up. He has this theory that beer, which he calls "beard" is in fact what gives dad his beard, because only dad drinks it, and only dad has a beard. He also has this theory that in place of brains, we have a set of gears, because that's what he saw one night in a chocolate bar commercial.

Mike's doing well, but I'm not sure how long he can keep up this pace. He's definitely feeling the effects of contractor favourtism. It's long hours, but awesome pay. So far, his pay works out to about $50/hour, which is nearly double what he was making as an employee. Not that we'll see any of it - most will sit in the business until Mike goes to school. It's completely insane. It's a good thing, though. We've had a lot of unexpected expenses, like the car, and we really didn't realize until we left Hamilton what a huge, huge hole we'd dug ourselves into financially. So big, we're STILL digging our way out! So more money is a good thing, to meet his university savings goals. But he works very hard for what he makes now. He comes home wiped every night, and he isn't expecting a day off in all of June. He wants to take a week off in July, because he knows he's really going to need it. But he's a little blue about it, because it means giving up $3,000 or so in pay, which is a hard loss to swallow. But going contract was definitely the right choice for us, financially. And for those of us who still think we're nuts for going limited instead of sole proprieter, in the end we actually didn't have a choice - it was a requirement of the contract. Yet despite these insane wages, they can't hire enough techs! They've been on a hiring spree for months, but it's hard to convince people to move for a job. They're getting so desparate, they're starting to take people without experience, and training them. The shortage is probably due to a renewed hiring spree in the oil sands. Apparently, they're trying to grow at a rediculous rate while oil costs are high, but they can't find people fast enough - and that's where the super-crazy money is. All this on the verge of a houseing price crash, because they've been building at such a frantic pace, there's now finally a surplus - at least in Calgary. So there's going to be cheaper housing...and crazy wages. The economy out here is just...goofy. And yet they can't find a couple billion to start JK in time for September, which really frosts me off! It's definitely a whole other world out here. I don't regret moving one bit - it's definitely been an adventure. But I know Mike is looking forward to getting back to school, so he can finally get a normal job. Like, one with time off!