April 2010 - Visit to Canterbury NZ, and COUSINS!

In April we finally took our mini-brood to go visit our COUSINS! in NZ. Duncan and Toby (and their parents Julia and Will, of course, but Iain and Ria aren't too fussed about parents ;-) have been here many times as they pass through from/to Canada or England or some world tour or another, but we still hadn't visited them, so off we went!

Week 1 was cousins....week 2 was just us 4 in Auckland. Auckland will be another post

Here's a few pictures of the visit.

William with 4 kids:
4 kids making funny faces:

The inseparable boys....there's about 87 cute pictures of these guys together, I just picked 2 at random(ish):



Ria having a music break....what fabulous posture!

Auntie Julia and Ria snuggling! The boys mostly ignored Ria, so she focused on kitty Libby and on Julia as the highlights of her visit.


The whole gang. Will, Julia, Grandpa John, William, Mona, Toby, Iain, Ria, and Duncan.

And here is the world premier of the Harvie/Rucklidge boys band called "Spider Eyes". They are a cover/air band....doing "We Will Rock You" by Queen.

And here's a mini-clip with Spider Eyes and their back up girl dancer (Ria), doing "I'm Going to Lose Control" from the soundrack of "Over the Hedge". Note her signature move during the chorus ;-)

More words

This will be a potty/poo related post. If you don't want to read it, just stop!

I'll sneak in this wordy post just before putting in some pictures....that way people who don't want to read about my daughter's digestive tract might not even notice the wordy post just under the new pictures ;-)

Ugh.

Sometimes I just feel sorry for Ria. I know most of her trials and tribulations are temporary and will be done and over with before she starts Kindergarten (except the bifocals and possibly the orthotics), but the list of cr*p she has to deal with is just rather long....
-Bifocals for crossed eyes
-gross motor delay/ balance issues
-physical therapy for the gross motor delay
-expressive speech delay
-2 speech therapy sessions a week for that delay
-orthotics due to complications from the gross motor delay
-2 ear surguries so far
-ear plugs anytime water gets near her head, unless chlorinated, due to ear tubes
-tricky constipation
-people (including her parents, sometimes) underestimating her thinking skills because of her non-stellar speaking skills.
-recurring bouts of nasty eczema on her hands
-detergent sensitivities, resulting in eczema all over her body if we don't avoid SLS, etc.

The current poop related joy is as such:

The potty training has just stalled out. She kept getting poop smears (the GI doctor calls them "sharts" ;-) in her undies, never seeming to make the step to figuring out when to go poo. Then we had 5 perfect poo days (even taking herself to the toilet!) after a bout of antibiotic related diarrhea! We thought she'd finally figured it out after 5 months....then it all went to hell and she's been in pull-up diapers since late May.

So last week we went to a GI doctor to find a new approach to her constipation since the never-ending Miralax since 10 months old doesn't seem to cut it for potty training. She thinks that the issue is that we never did a "clean out" for her colon, and that our Miralax dosage is too low. The concept is that bad constipation left chunks of nasty dried out poo in her colon. The walls of the colon by those dessicated poo bits gets unhappy. You need to not just flush out the dried nasty poo bits, but also keep the poo grotesquely gushy for a long-ish period of time so that the colon walls can heal up....otherwise dried poo will re-accumulate at those unhappy wall sections of the colon. This would explain the "5 perfect poo days" after the diarrhea....the chunks went away, and for 5 days she was free flowing, and then they started to build back up.

The issue is that having chunks stuck on the colon wall gives your body mixed signals as to whether or not you need to poo....hence the never finishing the potty training.

So....
This weekend we are doing a magnesium citrate bowel clean out, and on Monday we start a new Miralax regimen at almost 2x the dose we've been using, and we'll be doing that for at least 4-6 weeks. We also had the "joy" of doing a blood draw for some tests, so we'll have some blood test results in a few weeks to rule out any nasty causes for the constipation.

With any luck, the cleared out and healed bowel, together with regular potty sits after finishing main meals will get her bowel all nicely trained and regular.

*sigh*. But she's still a happy cute bubbly little girl despite it all!

Quickie speech update: the dyad speech therapy session is working in spades! Her speech is growing in leaps and bounds. One strange result of the improvement is that, now that she is speaking more and markedly better, her speech problems are more obvious. Before you could have just imagined that she had chosen to not speak, but that she could if she wanted to. Now, as you hear her labored speech, you can truly see how much work she has to put in to make her words. I've been feeling funky about the decision coming up next year on whether to put her in Kindergarten on time (2011 fall), or put it off a year. Now that it is easier to hear her speech abilities I feel like I will be able to make an intelligent decision next year about her Kindergarten readiness. My goal, off hand, is that she have 4-6 months of *easy speaking* under her belt before starting Kindergarten. This means easy speaking in all situations, not just at home with us. It feels good to have a reasonably measurable metric by which I can make my decision.

So....that's our girl ;-)....our lovely, happy, snuggly, sweet little girl.

Updates

Hello World....

I've got two, count them, **2** vacations to post a few pictures from, but I'm on the wrong computer for that, so instead I will do a wordy little update on how the kids are doing. Pictures next time, I promise!!!

Iain has been doing wonderfully. It is almost unbelievable to me how much difference a year of OT and social skills group has done for him. Intensely social situations without structure are the big bad thing for kids with Aspergers, and he's been doing camp this week with 30 or 40 kids in his group, from 9am-4pm, and he has been having FUN! OK, 3 of the 5 days had a minor upset....but he recovered from each of them quickly with a small camp counselor intervention.

One year ago, he never could have survived this camp. I'd have had to pick him up early the 1st day and not bring him back. This year, he's not only made it through camp, he's ENJOYING IT!!! I am so impressed by how he has internalized his therapy and uses it on a daily basis. We are so lucky that his Aspergers is mild. He seems to just need to have concepts brought to him and practiced in therapy, and he can use them. We don't need to practice and train at home very much. He's kicking butt!

Ria: you keep hearing about Ria! We're still happy we did the 2nd ear surgery ;-). Since then we have upped her speech therapy to 2x per week, the 2nd session being a "dyad" where she and another little girl with similar issues are literally taught step by step how to play together with words. Ria's speech issues seem to be complicated with a strong anxiety about using words in a stressful situation. Any stress derails her words: hunger, thirst, more than one person interacting with her.... you get the idea. The speech therapists have seen that dyads seem to help kids with her sort of issues. In addition, we've restarted the physical therapy, and have started "gymnastics" classes to help her balance/coordination development. She just didn't seem to be able to finish up her gross motor development without a little extra help.

She's been doing the 2nd speech therapy for almost 2 months now, and we are starting to see an upsurge in her speech skills. She is TRYING so much harder to verbalize, and she has dramatically increased her level of "commentary". Even when she is obviously having a hard time figuring out what words to put together (lots of "ums" and "uhs"), she still pushes through and tries to get her thoughts out in words! The trip last week to NH seems to have been a key impetus...she really seemed to start talking more last week, and this week when we're back, her speech therapists and her preschool teachers have really noticed the upswing in speech! (Its been hand in hand with a backwards step in potty training, but we will happily accept that for speech gains!)

Life is good ;-)

HUGS to all!

The Baby says "WAAAAH!"

Hee hee:

So, when Ria was going to bed tonight, she was busy being a baby.....which means happily saying "Waaah! Waaah!" while snuggling into bed. Odd, but it makes her happy.

When I was putting Iain to bed, I went in to pull Ria's glasses off (she falls asleep reading her books, so this is standard practice). When I took them off, it woke her up a bit......she opened her eyes and sleepily said "Waaah! Waaah!"

heh.....just too darn cute!

Ear Tubes II and Adenoids

We're baaaaaack!

Today was another chapter in the seemingly never-ending story of Ria's Ears. The final exciting one, though, most likely.

Here's a few weeks shortened into one paragraph: One of Ria's ear tubes fell out in January (as expected), but the other was holding on still. The left ear drum (without tube) was slightly retracted, but no fluid this time. The lack of fluid resulted in a perfect hearing test. This left us in the "grey zone" for deciding whether or not to have a 2nd set of tubes placed. Her persistent crankiness and apparent ear discomfort (we'd gone to the pediatrician for suspected ear infections twice since January, but the ears were clean, just in pain) led us to decide to go ahead for a 2nd set of tubes. We were feeling somewhat "American", in that we weren't sure if we were swatting a fly with a nuclear missile, if you know what I mean....but we were going for the surgery anyways.

So, this morning at 7:30am, Ria had the 2nd set of tubes placed (the right one was removed and a new one placed). Whenever they place a 2nd set of tubes, especially with someone with a history of snoring since birth, they check the adenoids to see if they are blocking the eustacian tubes. Ria's adenoids were definately too big, so they were lasered out this morning as well. That gave us a feeling of "we sure did the right thing!"...if we hadn't gone in for the 2nd set of tubes, she'd never have "grown into" her eustation tubes, and the pain would have continued, and a some point we'd have had to go in again anyways. Now we know the root cause of all the problems, and its been fixed!

Luckily, the technology of adenoidectomies has changed a lot in 20 years. 20 years ago they were cut out with a knife and your nose got packed with gauze....and removing that gauze was "fun". Nowadays they just laser them out, and the cuts are immediately cauterized. No packing, just a bit of pain.

Our baby is doing great, if a bit touchy and desirous of Tylenol ;-). ...And the ear saga is over. In 8 months or so the tubes will grow out, and with the adenoids out her ear drums should be just fine without them!

Happy parents. Happy happy happy happy happy parents.

Happy February!!

Hello!

Before I write an update on how we're doing, some photos ;-)

It doesn't seem to matter what I say. Kids seem to think that they belong in the drier...


We made our gingerbread house this year in January, and ate it 2 days later.

And here's what life really looks like in our house....2 kids running around in their underwear, hanging out by the heat vent. Iain is in addition modelling his Christmas hat...my 2nd knit hat that is actually pretty good (William got the 1st good one, and I have the one that isn't particulary well-knit).


So, updates!

Iain is doing GREAT! He has just "graduated" from Occupational Therapy. He now is functioning in the "average range" for all of the tested areas. Several items are on the low end of average, but still far from where he was last spring. This is very noticeable in how well he is functioning in school this year. 1st grade is going fabulously. He's only had 3-4 bad days in the whole year so far. Many kudos go to his fabulous teacher, of course. We're planning to re-try swimming lessons this summer, and he's feeling pretty confident that he will be able to get his head under water this year. His social skills group is a long-term therapy, so we'll be doing that through all of next school year as well.

Ria....

She is just a different little girl than she was before those ear tubes. Last spring when she was 2.5 years old, she functioned in many ways like a 1.5 year old.....and in gross motor skills she was even lower down. She ran in a crooked line, at walking speed, and fell down every 20 or so steps. If she was walking across the room carrying something, I would run ahead of her and clear the floor of all obstacles, pieces of paper, books, so that she wouldn't slip and fall. At preschool, if another child wanted what she had, she would just hand it over silently and back away. If there was a crowd of children, she would back away to the outside, and she'd never get a turn at the activity in question unless an adult encouraged her to take a turn, she was so overwhelmed by the motion of the other kids and unable to follow the words flying around abover her head. Don't get me wrong, she was a happy little thing, especially when in her known-space at home and with family, but she just couldn't function in the preschool setting very well.

Now...not only do i not have to clear the floor in front of her path, she has graduated to wearing tights/stockings with her dresses around the house....and she DOESN"T SLIP AND FALL DOWN! At preschool she still usually plays on her own, but she no longer pulls to the back, she participates in circle times, and takes her turn in activities rather than always letting the other kids go 1st. She even initiates play verbally with one child at a time, sometimes. ...and she usually lets us know what she wants with WORDS, often with full sentances even....she even uses verbs! We're still working with her speech....she doesn't initiate speech well, and she doesn't answer questions usually without prompting, but the end is in sight.

The potty training has been......slow. The poos have been rather tricky. Still working on it, but in undies every day, and sometimes at night. some days we finish with the same pair of undies, others involve many changes, but progress is being made. *phew* I wish the progress were faster, but as least its progress! we haven't stalled out.

That's pretty much life for us!

Happy Christmas!

For Christmas we had Grandpa John visiting. Here we are at our Julbord (Christmas Eve dinner). As usual, Iain snarfed up the sill (pickled herring) with great abandon. That boy can EAT!


We open about 1/2 our gifts on Christmas Eve, so here's the kids opening gifts at night: Ria loving her hat, her jammies, and her farm.

...and Iain helping set up the farm

Daddy and Ria posing for Grandpa John

Iain in motion trying to figure out his Meccano Erector set. Its a bit beyond his abilities, but he loves it ;-).

Another Daddy and Ria shot.

You can't quite see him, but Iain is the dude in the penguin jammies playing with his remote control ATV.

Finally, Grandpa John and the kids watch to see if Santa will make it down the course they made for him (computer game).

Merry Christmas and Happy New Year! God Jul och Gott Nytt Ar!

Potty Time!

On 23 December, Ria and I carried out all her "day diaper" paraphernalia to leave them for the "diaper fairies".

In the morning, Ria found that Fairy Amiya (the left one, looks a little like her friend Amiya) and Fairy Ria had stayed behind to help her put her poos in the toilet. (Mommy had spent quite a bit of time the previous night making flower fairies while Daddy wrapped all the gifts.)

Results?
Well, she's kind of potty trained.... With reminders, her pee is 100% contained. Her poo....well.... we're working on it. It's kinda-sorta working. Mostly. ;-). Another week or 2 will no doubt get things more consistent on that end. So to speak.

Tomorrow we send her to school with undies. Wheee!

Early December 2009

Early in December we got to see Aunti Julia as she passed through for a conference.

Kids playing happily together building with the Quattros. (Isin't it great how on blogs you can make it look like your kids never fight!)

And finally, a video: Here's Iain helping Ria spin on the "Dizzy Disc" (those who tend toward dizziness might not want to watch). They're saying "I'm a-watching a movie, I'm a watching a movie, I'm a watching a movie...OW OW OW". The "OW"s are supposed to occur while whapping your head on your forehead. Can you guess which kid came up with that one? ;-)

Halloween and November 2009 pictures

So, I'm giving up on post-dating ;-) Here's some pictures from Halloween and November last year.

Our friends Chris and Wonder-Woman Sarah went trick or treating with William the Convict, Ria the Bumblebee and Iain the Dinosaur. Yep, Iain has finally given up on his Tomtebobarnen costume that he used for the last 4 years.

Early November found William in Toronto for the sorrowful event of Irene's funeral. Nonetheless it was joyful to have the 4 siblings together with John.

Ria looking cute in her hat.

One day Iain had a day off school, but Ria didn't, so he and I had a lovely hike.

Kids making faces for the camera always makes a good shot:

As does any image of the intrepid explorers, off to investigate the wilds of our house.

School photos

Oooh! I haven't put up Iain's 1st grade photo! Darn cute:


He looks so little....until you look at his Kinder photo, and then he looks so BIG!

Oh, it looks like I never posted his Kinder photo....here's last years photo:


There, see!!!

Kids are doing great. Ria leaves her glasses on now and often actually looks through the bifocal bit. She's running faster, and is finally able to walk in shoes that aren't strapped to her feet (flip flops, dress-up shoes), so gross motor is kicking butt.....and her speech is improving by leaps and bounds!

Skyping away the week

I got me a camera for my laptop, so I'm a-skyping.

Here's me and the kids in a little snapshot, skype-view:

Fancy eyes, birthdays, and books.

Hi Everyone!

Check out our new face:
Yep. Our Little Miss has joined the world of the bespeckled.

I had mentioned earlier that we were going to look into Ria's tendancy to go a bit too crosseyed when looking at things close. We've looked into it. We caught it early enough, she still has 3D vision (although not so strong, we may need to do some vision therapy down the line). The crossing is due to prescription issues (technically "accomodative esotropia", differing from William's "congenital esotropia" which required eye surgeries to straighten his eyes). She technically also has some "ambylopia" (lazy eye), but we don't need to do any eye patching for it because the eye that crosses mostly is also the stronger of her 2 eyes. For the crossing she's got bifocals: "-1" at the top (nearsighted), and "+3" at the bottom (a farsighted prescription). Assuming we can get her to reliably wear the things for near vision, the "+3" will force her to accomodate by un-crossing her eyes. With such a minor prescription as "-1", the eye doctor would never have given her glasses if it weren't for the need to fix the eye crossing before she loses 3D vision.

Now ALL the girls in the house have bifocals!

In non-medical topics:
Here's Iain's 6-year old photo (what a ham!):

And Ria's 3-year photo (in her cool new glasses):

Ria had a mini-birthday party with 2 pre-school buddies:

And here's the boys of the house, doing what boys do once little girls go to bed!

Well, that's the news that's fit to print ;-). Have a Happy Halloween!

Good Evening!

A Thought:

Any rule worth having is worth breaking.

(I've sworn off wine and beer on weekdays as a weight loss strategy. I'm breaking my rule and having a glass of wine. Bad Mommy!)

So, some lovely pictures, like I promised:

Ria's 1st "school" picture:

Iain's birthday party picture....we exploded diet coke with mentos. FUN!

Ria's 1st day at MVPNS (the parent participation preschool)....she looks JAZZZED! With her friend Mary Rose.
Iain quietly hiding in a tree at our camping trip to big basin. Don't know why i picked such a somber photo, but he looks sweet ;-)

Happy September

Yo!

Ok, photos NEXT time....just going to chat a bit while wjr plays with his new Playstayshun 3 ;-).

Iain's in 1st grade, and Ria is starting 2 separate preschools (2.5-3 hours each day). Iain is LOVING 1st grade (they get their OWN DESKS!!!!). Almost no problems so far. We noticed over vacation that Iain does best on days where there is a LOT of physical activity, as though a lack of such causes him to spiral down into the place where he lacks any flexibility or ability to accept that other viewpoints exist. In 1st grade (due to a decision by the district to lengthen the school day for grades 1-3 to allow one bus route) he has ***3*** recesses a day (one at the end of the day). I think the recesses are partly to thank for the problem-free 1st 2 weeks of school (the other part is probably a mix between 1 year older and all the stuff we were doing over the summer). WHEEE!

Ria has been to only 1 of her 2 preschools so far (the one I don't work at....the co-op starts on Tuesday), and she LOVES school and is very proud that she has her own place to go everyday.

Physically, Ria is doing well. Not yet out of the woods, but great improvements all around. Her speech is improving A LOT. She believes in the whole concept of questions and answers maybe 60% of the time, and her enunciation is improving. She frequently goes on binges of refusing to use words for an hour or 2 at a time, but I'm at least imagining that they are reducing in length. Her gross motor skill are improving greatly too....she moves more gracefully, as though she lives "in" her body, rather than at odds with it. She truly seems more comfortable in space and gravity. The severe pronation she developed in her gait wasn't improving with increased foot strength, and she quickly deformed the mere $60 off the shelf orthotics we got her, so she's now in custom made "all foot orthotics" (AFO's) to fix that. She honestly seems to like the way they feel on her feet (YAY!), so we only had to fight about them for the 1st day or 2. Her "core strength" is improving, but still pretty bad, so me and her PT (physical therapist) are going to focus a bit more on that, specifically lower back strength. As for new issues, in October we've got an optometrist appointment as she seems to go cross-eyed when focusing on things in the near field (like books). She seems to be still seeing double (at least a month ago she was pointing about 3/4 inch to the right of what she was trying to point at), so it is unlikely that she is blocking the input from one eye (this is what William does as he has strabismus, i.e., no 3-D vision), at least yet. Her eyes LOOK straight when she looks at mid-field or distant objects, so most likely we'll get this all fixed with just a set of glasses. Finally, in addition to the developmental leaps she's making in the areas we're focusing on, she is (unfortunately) also catching up on some of the more annoying developmental steps that she missed between 18 months and 2.5 years. The whining feature has been turned back on, and the "NO!" explosions are back. Blech!!!

Its funny, in late January when we started our trip to the Aspergers diagnosis, we felt like Iain's issues were going to be so much more overwhelming to deal with (in the current approach people take to it, with therapist appts, etc.) than anything Ria could dish out, but Ria has just blown him away with her more straightforward physical problems. Iain is doing GREAT, and Ria's list of difficulties just seems to get longer and longer. All of it, though, is movement towards the positive. They're BOTH going to get glasses eventually, so getting them at age 3 is just moving the curve up a bit. Speech therapy should be over by December, and the orthotics will hopefully just be a year or 2. Her issues will all have melted away before she hits Kindergarten, whereas Iain's only showed up then.

All in all, we are SOOOOOO much more calm about life than we were 3 months ago. Iain's social skills therapy and Occupational therapy have obviously been helping him, as he is just so much more capable of dealing with unexpected situations. ...and we think we know all of Ria's problems at this point, and progress is being made on all fronts (except the cross-eyed thing, and that's just a month away). We're even starting to make dents in the insurance and paper piles!

OH!
and, Iain turns **6** on Tuesday!!! Whee! We've got a small party planned, and will be exploding 2-liter bottles of diet coke with Mentos (and will be trying Altoids too). This should be way more fun than the non-celebration of OUR birthdays back when we were WAY too overwhelmed this spring!

That's the update.....we'll post a few pictues from our trip to RI/NH/Toronto and our camping trip to Big Basin.....uh....soonish ;-) Just don't hold your breath!

Take care,
Mona and William

Catching up: Our Spring and Summer Visitors

So, in addition to the medical "joys" of the spring, we had LOTS and LOTS of visitors this year! Here's a recap.....But 1st: a darn cute picture of Ria:

First, in late February, Mormor came to visit. We forgot to take a group picture, but this one sums up the visit: Ria attached herself to Mormor and pretty much didn't let go!

Then Eva and I visited Morfar in Chicago for a few days in early March:

Then Alastair, Bev, and cousin Rowan visited later in March:

Then Grandmother was here in early April:

School ended in early June, and 2 days later Iain lost his first baby tooth:

Then in mid/late June, Grandpa John and Julia were here:

Then in early July, my cousin Per, his wife Lena, and their kids Klara and Johan came to visit from Sweden:

Any mention of their visit is incomplete without a reference to how Ria attached herself to Klara for the whole visit. When Ria finally realized that they had left, she cried for 45 minutes for her lost Klara.

A few days later, Yassal, and her girls Nabila and Yasmin stopped by (visiting from Sweden) for a playdate at Rachel's and Josephine's place. (Well, Sven's place too, but he was at work ;-).

And, finally, Jo handed down to Ria some essential fairy gear, and we now have "Fairy Girl", rather than Ria, some days:


A million fabulous pictures aren't here, but at least I'm up to date before our trip east next week!