the verdict

I'm sure you're all wondering what the neurologist had to say. We called our parents as soon as we could get a hold of each, but if we were to phone everybody, we'd be on the phone for days, so I'm going to post the details here. But if anyone has any questions, feel free to ask!

She did in fact have a stroke. It was a very large one, but the most common variety of neonatal stroke. It likely hapened right at birth, which they typically do, aparently. They don't know why they happen - it's an area of study for many universities, because there's such a pattern to it, but no-one knows exactly why it happens. They think it may be clots from the placenta escaping, as it detaches during birth. But they just don't know.

Her blockage was in the most common spot - in the central cerebral artery, I think it's called. It's the biggest of three arteries that feed the brain. Because it was such a large blood supply, the damage is fairly extensive - this was no mini-stroke! But it's isolated to her left side, which is good news.

Many of them are diagnosed right at birth, because the stroke often causes seizures, as early as a day old. When they see that, there's an MRI immediately. Other kids, like Joan, either never have seizures, or the seizure that typically comes shortly after birth is so mild, it's missed. In that case, the diagnosis is made when it was made for her - when it becomes obvious that the motor skills are delayed. There's a 10 per cent chance of her developing seizures. We've been told what to watch for, but because it sounds like she has yet to have one, her chances of developing them are small.

The prognosis:

• She should be able to lead a normal life, though any Olympic aspirations may never be realized.
• She will walk - probably by the time she's two.
• She will always have a weak side, which will probably result in a limp throughout her life
• She'll need to be in physiotherapy for most of her childhood, and possibly into adulthood.
• Mentally, she should be completely normal
• She may struggle in school, once more complex subjects start, such as math, reading and writing, which require both sides of the brain.
• Those difficulties may range from mild - that she just needs a lot of encourangement - to moderate - where she needs a tutor or at the worst, a modified program. That said, many kids never have any trouble in school.
• They'll do an extensive assessment when she's 5, to determine where she's at, and what, if any trouble spots, she has.
• She MAY need a speech therapist. The neurologist recommended it, to ensure she's on track. The therapists are leaning that way, too, but want to watch her a little longer.

We also saw the therapy team the same day. They're awesome! Here's a few of the things that came from that:

• She will need braces for both hand and leg, but not for a couple more months.
• She'll likely be getting a walker, to help her get around and build leg strength.
• They gave us a million stretches to do - she's lost a lot of range of motion - these will get it back.
• They're going very intensive to start - stretches at least 3x per day, and her next appointment's in two weeks - to get her to the level of flexibility they want to see.
• She's been referred to the neuromotor clinic as well. They'll mastermind all of her therapy, from physio to bracing to surgery, if need be, to keep her body growing properly.
• The "tone" ie how she clenches her fist a lot of the time - can, over time, cause skeletal deformations. The neuromotor clinic's job is to prevent that, and if it happens, to treat it. She may need orthopedic surgery down the road, but they do everything they can to prevent that, obviously.

That's about it, in a tight little nutshell. It was a lot to take in that day, but with time, we're feeling better about it all. There's a lot of guilt for us - me especially. There's been a lot of "if onlys" running through our minds. Like if only we'd taken the C-section route, instead of induction, this wouldn't have happened to her. But I guess we can't dwell on that stuff.

In other news, our building is up for sale. Yay. The owner died, and her son, who she left it to, doesn't want it. We got the news just as we got home from the hospital. So we were already having a pretty blue day, and then got that blow on top of it all. We thought we'd be out of a home, so we started loking around for a new place that night. But according to Alberta law, because we had a fixed lease, we're safe. The new owners can't evict us without cause, or raise our rent, or cut our lease short - they have to adopt the agreement we signed with the previous owners. So we're safe, at least until December, so it's not too bad. It could be much worse. We've had one showing, but no more on the horizon yet. The agent said things have gotten bad in Calgary over the last six months - property isn't the hot ticket it used to be, and buyers are refusing to pay the big money. Our place is listed at $599,000, which is higher than the assessment says it's worth right now. When we first moved here, tiny single-family bungalows were routinely being listed at $700,000. But they had already stopped selling for that cost, so they just sat...and sat...and sat....A handful have actually sold, but I doubt it was for anything close to full asking.

John's doing great. He's in a letter phase right now. He actually ate a slice of pizza into a T shape. I know my mom will get a kick out of that story - Uncle Adrian did that when he was a kid too. So John's inherited more than just his obsession with bodily functions!

tomorrow's the big day!

Wish us all luck - tomorrow is one of those "just survive the day" kind of days.

We have a long, stressful day scheduled at the Children's hospital. In the a.m. is Joan's first physio appointment, while John plays in the sibling room. They're both going to leave tired and crabby, only to be plunked in a noisy, crowded food court for lunch, followed by the whole family, John included, heading for a two-hour MRI reading with the neurologist. Mike is of course working, but is planning to sneak away for the neurology appt. It means losing money, because he's oficially a contractor now, but we both agree it's worth it. And true to form, the kids and I are all sick as dogs. All the makings of a totally awesome day, filled to the brim with meltdowns! Yay! On the upside, we'll get some answers about what's up with Joan's brain damage, and what kind of road we're headed down. It's been stressful watching CNN coverage of Ted Kennedy's brain tumor, because they get these neurologists on to talk about the map of the brain, and what's affected. According to them, right motor skills are physically intertwined with speech, understanding and writing in the brain. Hopefully, Joan's stroke is just a pinprick of a scar, like the pediatrician originally thought, so she won't have a lot of struggle ahead of her.

The next day won't be much more fun. We've got our car booked into a garage, to get a second opinion on $2,000 in allegedly "urgent" repairs. I've been scouring car message boards, for a local garage that might be better for us. Most of the most highly recommended ones were just lone guys in little shops. But we need one slightly bigger than that to do an out-of-province inspection. I managed to find one that several people recommended as being honest and reasonable, is apparently particularly good with oriental cars, and is even close by, so hopefully, we'll have better luck with him. Definitely no fun finding a mechanic in a new city.

So wish us all luck on both days! Good times.

this, that and other stuff

Sorry I haven't been in a while. I'm tired and pregnant and feeling sore and blechy most of the time, so just haven't felt up to stopping by, to be honest.



Let's see. Pregnancy is still a go. I had a third ultrasound last week, and was given all good news. They had called me back because the last technician couldn't get a clear look at the spine. This time, the baby was in the perfect position, so it was a quick in and out. Technician said everything looks good - nothing to worry about. I wanted to ask the gender so badly, but we'd already agreed to have yet another surprise.



The other kids are doing well. I was truly spoiled for Mother's Day. I got a big bouquet of dandilions and some sort of purple thing, picked from our yard and the neighbouring parking lot. John was so proud! "You like them, because they're nice!" he said, as he arranged them for me in a little cup of water. I also got a second surprise. I was doing dishes, when he came up and said "Mom! I made your Mother's Day present! Come see!" So I followed him to the bathroom, where he, in grandious fashion, lifted the potty lid to reveal... a huge poop. "Happy Mother's Day!" He said. It could have been worse - he could have left it somewhere more...creative.



He's passed into a delightful phase, in which he displayes a marked obsession with his bodily orifaces, and the disgusting things that ooz, squirt and slime out of them. It's very depressing for me, because I know this phase won't likely pass until well into high school, when he decides he wants a girlfriend. He puts his own John spin on it all, though. He asked me what snot was a few days ago. Not knowing what the answer was at all, I told him it was dead germs that his soldiers (our name for white blood cells) were pushing out of his body. He accepted that, but few days later, he asked if the germs in his snot were really dead. "I think so," I said. "Well, then who will take care of their kids?" he asked sadly. So I did some backtracking, and now the germs aren't really dead - snot is just the slime they make that can make you sick. So the germs are okay, and living happily with their families, but they can't make him sick anymore. Shockingly, he bought it. Then he went on about how the germs need to go to the hospital, and that the ambulances wil come take care of them when the soldiers hurt them, so that they will be okay.



We've decided that we're going to sign him up for preschool in September after all. We've been toying with the idea for a while, but the last straw was a few days ago, when we all went to the park. There was another boy there, who was 7, waiting for his league's soccer game to start. John was stuck to this kid like glue. They played tag, and chased each other around. Then the boy had to go. It was heartbreaking. John tried to convince me that he could go play on this boy's team, too. Then a little girl showed up, and John said "Oh boy!!! Another friend for me to play with!" and ran right up this 7-year-old 'tween, who was far too fabulous to pay him any mind, but he stuck to her like glue regardless. We really realized the full scope of the cruelty we were inflicting on our child. He's the most sociable creature on the face of the earth, and he's at home with boring old mom. This is a kid who'll run in from playing outside, squealing "Mom! I made a new friend! Come meet him!" And it turns out to be an ant or a worm. What we're doing just isn't right! So yeah, we're going to head out for a few tours and find one that's fun and social. We're not so concerned about academics - he's so smart, he doesn't really need help getting ready for school academically, which is good, because most of the "good" preschools are already into waiting lists. But he's got to have regular social time with a group of his peers. And the revolving door of faces he gets through little drop-in type programs just doesn't seem to be cutting it.

He got a special treat a few days ago - a nice long chat with Grandma Phillips. My mom got a full tour of his toy box, as he emptied it onto the floor. He thought that talk was great! He's still telling us all about his special call from Grandma. So if anyone else wants to light up his life a little, don't hesitate to call!

Joan's doing great, too. We're in this study at the hospital, andas much as it's inconvenient, I'm glad I'm doing it. It's a clinical study to test the effects of a course they've developed on the outcomes of physiotherapy. It's all about recognizing the non-verbal cues that kids send, and it's geared specifically for parents of physio kids. Like how to recognize when they just don't feel like doing something at the moment, vs they can't physically do it. How to tell if they want to do it with help, vs by themselves. So far, it's been really helpful, even though we're not in therapy just yet. It helps to see things in a different way. Like, the therapist in Hamilton said to do it one way, which hasn't been working. This helps to think of new ways to do it, based on the uniqueness interests and moods of the kid themselves. It's a much more holistic way of looking at therapy. They say they get much better results this way, and I believe it. I've been applying some of the ideas, and they've really helped remotivate Joan. I've actually seen her get down on her belly and try to crawl, which she hasn't had any interest in doing for months. One of the best parts is the other moms and the instructors. It's run by actual physiotherapists, so they know exactly what I'm talking about when I discuss specific situations with Joan. Even though they've never seen her, they've been able to give me great advice and ideas, because they're so familiar with the condition. Meeting the other moms has made me realize that we're not so bad off. We're the mildest case. There's another little girl at the same developmental level and the same age, but she has seizures as well. Another has cystic fibrosis. Others have too many problems to remember. A little stroke sounds so minor in comparison. It's nice to be able to talk about MRIs and neurologists and leg braces, and no one bats an eyelash, because everyone's been there, done that.

Anyway, better go - Mike just got home. But I'll check back in soon!

an announcement!

Ok - I've probably held onto this one a little longer than I really should have. But I needed to make sure everything was going smoothly.

So here goes....

Yup - I'm pregnant!!! Yay!!!

This is actually an old ultrasound, from 11 weeks - I had one last week, but all the technician could get were bits and pieces. I didn't really feel like posting a photo of...legs. In fact, the baby was so unco-operative for the second ultrasound, I have to go back and do it again in the next week or two - it was moving so much, they couldn't lock in a few of the measurements.

I'm just about halfway - I'll cross the magical 20-week mark this weekend. After that, if I go into labour, there's a chance the baby can be saved. It's a small chance at first, but it's still a big comfort.

The due date has been set at September 20.

So far, the pregnancy has been very smooth. We had a few nervous weeks between the first trimester symptoms fading, and the kicks being big enough to feel well. There have been other things stopping me from announcing this earlier. I was going to post this last month, after a doctor visit, because he should have been able to get a heartbeat. But he didn't have a dopplar, and it was too early to pick it up by stethescope. So then, i decided to wait until the ultrasound - it's the big 18-week one, where they can see potential problems arising. But I had one of those technicians who won't say anything, which can mean either, they just won't say anything, or there's something horribly wrong. So again, it went on hold. But yesterday, I had a great doctor's appointment, and the doctor I've been referred to for the rest of the pregnancy assured me all is well, and everything they were able to capture is normal and growing right on schedule. She had a hard time finding the baby with her dopplar, but caught it for a few seconds - long enough to confirm all is well so far. It sure is a wiggly little worm! Now that it's bigger, I feel it wriggling constantly, which is great! I went weeks trying to entice it to move, with orange juice and chocolate. In the end, we discovered it loves spicy food! The first big, unmistakable, definitely-not-a-gas-bubble kick came when we were watching a Calgary Flames game, and eating very spicy wings. Mike said "It must be a boy! It likes hockey and wings!"

John's excited, too. He calls it my Belly Button Baby, because it lives in my belly button. He imagines that it has a bedroom, filled with toys in there, where it rides around on a red bike, just like his. He says good night to my belly sometimes, and has even told my belly "I love you, Belly Button Baby." He's cute. He's in for a rude awakening, though. he really thinks this baby will pop out ready to play and jump and run, just like him. We're trying to get it straight, but I think the thought of another helpless screaming bundle, like Joan was, just doesn't appeal enough to sink in.

Anyway, that's the news! We'll keep you posted as it goes. Hopefully, it will all be smooth sailing!