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!