28.7.11

70%



I'm away this week. Just me, a whole week without Nava. It's for a very good cause, a Nava cause. I'm learning how to help her and in the course of that I've evaluated how she is doing.
Obviously, she is doing great for Nava. And I don't doubt that. I knew she excelled in certain areas...like eating (!) but now I know that she is actually "above average" in 3 major areas. Three! She understands more than 10 words, including two word phrases and she understands what things are through touch at a great level too. And the real stunner? She sees at an average 18 mo old level too (glance up at those red glasses and all her little eyes went through and revel in that with me for a minute).



But she's got some things dragging her down, and they are not a surprise: mobility and speech. She definitely started out on track in motor skills but has slipped back and has been stuck at this stage for a few months. And I know she'll move out of it on her own eventually. But she'll still be behind at that point and she'll have that much more time to have to 'make up', so to speak. So I'm here learning how to help move things along. This has been one of the toughest decisions we've made about caring for Nava: to not return to the US and get her in early intervention, where she would have been in regular PT for months now. And I still think we made the right choice overall. But all the more reason I've gotta step up now. I AM her Early Intervention team leader after all.

I have many many more things to say (nice way to say this course is doing my head in) but I've gotta go do my homework and get to class. I'm in class but Nava is the one getting graded. So far she's earned a 70% for a 16 mo old. Passing grade? Sure. But Nava is not a C kid. She's all As in my book.

27.7.11

Prejudice is a poopyhead

Parenting is hard. I think it's normal for all parents to feel sick when their kids are picked on, whatever the reason. Parents of a kid with genetic 'special features' aren't any different, of course.

The difference is though that our society (and given who/where i am, i mean that Our very broadly) on many levels still thinks it's okay to mock children with mental disabilities. I think not long ago there wouldn't have been any taboo against mocking physical disabilities but I feel (perhaps overly optimistically??) that physical disability is finally generally understood to not be an 'ok' target anymore.

Mental disability still is. No, not to a kid's face. Not in front of their parents, sure. But while many have enough awareness that they'd never mock a specific kid even out of their presence. But yet that same 'aware' person still uses retard as a slur, tells Special Olympic jokes, laughs at sites featuring photos of people with T21 with 'funny' captions.

To think your peers, coworkers, fellow parents (!) feel its okay to mock your child-individually or as a group; to your face or behind your back is an excruciating gut punch. So reading about GQs lovely Down syndrome put down (in an effing fashion article of all things) royally pissed me off.

And right when I was still hissing and spitting about it, I clicked on a post with a clip out of a Nordstrom catalogue . A catalogue showcasing the latest fashions, as presented by incredibly good looking models, some of them kids, one of them with Down syndrome.

And my smile came back. Thank you Nordstrom-you not only have the size 11 shoes I need, you have real class too.

(and I would totally put the pic up but this dang blogpress app, iPad browsers, et al do not give me the privilege)

26.7.11

Feeling the love

Navagating is now over 6 months old (Nava herself is nearly 16 months in case you've lost track) and it's been really fun keeping this blog. It's been a long time since I wrote regularly and I love the practice on top of all the other reasons I started this blog: to be Nava's baby book, to keep family members updated and to network with other families.

We are really feeling the love at Navagating this week though. First, the post at Bloody Show was so neat to see. Then I joined my first blog carnival last week, and the post was clicked on more than 500 times. Peanuts in Internet terms but not bad for a glorified baby book ;)

Anyways, I just wanted to say thanks for reading, subscribing, following, and (even sometimes!) commenting. In return I'm really going to try to post more. My goal is 4-5 times a week to break out of my pattern of writing about the weekend and then forgetting to write again until the next weekend goes by!

Here goes nothing (but good intentions...) and of course, some more pictures!











And just for fun, let me me jump on the photo app bandwagon for a moment...














Bye everybody!

25.7.11

Off to work we go

So, last week (ever notice how this blog's always a week behind? No? That's good) we were down at the dam again. Nava the Toddler seems to be doing the trip just as well as Nava the Infant so that's a huge relief. Four hours to site would otherwise be torture.

She was actually in top form this trip and spent any time she wasn't asleep being insufferably cute (so unusual!) so the camera came out...


At one point her teeth were really bugging her (plural now! woot!) so I dug into our groceries for a nice crusty end of a baguette.

And now Nava would like to announce to the universe that all baguette heels are hers and hers alone and anyone wishing to be her new best friend can and should keep her in a constant supply.


She gnawed for the better part of an hour, getting it nice and soggy and stopping to offer to share with Nanny Noi and I several times (ladylike manners). Eventually it was small enough to finish off (see above) and she really didn't see how Mommy could be such a killjoy and make her take the huge piece back out...

While we were on the road, said mommy was on the Internet via the magic of a 3G Internet dongle thingy wingy. One of the best inventions ever.


And we got a big surprise. I clicked on a new blog post in my reader and a pic of Nava popped up! Not on Navagating. Fanmail via blogdom! Bloody Show (an awesome blog covering diverse issues in birth and ont midwifery) wrote a post about us! Very very cool. I would totally post a link except I'm writing this in an airplane on my iPad via the blogpress app and can't figure out how. As soon as I do... I can't make am fancy linky but the blog URL is http://bloodyshow.wordpress.com.


Car seat yoga continues by the way...


Over and out. Oh, and, don't forget about the crusty baguette folks. She's not kidding.

23.7.11

vegetarians might wanna skip this one



Last Friday was the Kaopansaa, the beginning of Buddhist lent. Lent goes for about 3 months and falls in the rainy season and is traditionally a time when no big parties are held, marriages don't happen, and husbands attempt to give up alcohol for awhile (okay, the last one might be a personal experience only).

Sout likes to celebrate by buying a cow head at the slaughterhouse (having one bought by a cousin would be more accurate) and then having all the meat, skin, whathaveyou on it cut off. The stripped meat is marinated and barbecued and the remains of the head (think cartilage, teeth and gums, etc) are put in a pot with fragrant herbage (you'd wanna cover the smell too) and cooked for a very long time until it is edible. Well, "edible" might be a strong word.

But, I'm a mommy blogger obsessed with chronicling my daughter, not Lao culture and culinary traditions, so why am I telling you this? Well, I wanted to explain just what it is my daughter is eating in the pictures below.


Thats a piece of cow skin/meat, sourced somewhere off a cow head. Enough to make a mommy proud (see first photo). It wasn't all questionable culinary pursuits though, Nava got to play with some neighborhood buddies...


these 2 girls are totally unrelated but look just like sisters


Nava is very good at sharing her food. After sucking and chewing on the skin strips for a long, l o n g time, of course, she was nice enough to offer tastes to everyone near her. Funny, no one took her up on it...


But all that chewing turned out to be EXACTLY what Nava needed. The next day tooth #2 popped out!

22.7.11

poor baby

Nava's constipation seems to be getting worse recently and I'm a loss to identify why. And then on top of that she passed blood in her stool the other night (SCARY looking but Dr Google says not serious since she wasn't in pain). Yes, I took pictures. No, I'm not posting them. You're welcome.

All this is making Mommy stressed and making Nava not wanna get on her potty. :( She's started locking her legs when taken to the bathroom.

If anyone had any magic dust, send it priority mail, k?

21.7.11

baby gang in the house

I made it back from Bangkok Sunday and Nava came home from the dam Monday (a very happy reunion) and then Tuesday we decided to celebrate being reunited after 3 nights apart with Baby Group!

It was the first since the new playroom debuted. It's so much fun to watch the kids as a gang gather together and destruct as much as they can in one afternoon. Kidding. A little. Our kids now range from 2 months to 2+ years old!


20.7.11

mommy runs off

Now that I've shared that Nava has weaned herself, I can also share why I didn't post any pictures of our weekend adventures earlier this month.

I have no pictures because I wasn't with Nava. After 15 months of sleeping every night in the same room if not the same bed, Mommy had a girls' weekend in Bangkok. Sans kidlet. It may have included movie theaters, margaritas, bookstores, live music, fabulous haircuts, bloody mary brunches...

While I was off , Nava stayed at the dam with her Daddy and her beloved cousins. It looks like they had fun!

on the way for Sunday BBQ at a coworkers' place

faster daddy, faster!
bbq is tiring

19.7.11

cute pics extra

Mommy's longtime friend, Toto, is here visiting from Bangkok. He snapped these at a BBQ this weekend. He posted them on FB but I wanted to repost for my non-FBing relatives.


my favorite! is that not an awesome grin?!!


18.7.11

No one told me I couldn’t: my nursing story

A warm Sabaidee and welcome to Carnival of Breastfeeding readers! Thanks for coming over!
(Regular Navagating readers-this is a little different than my normal posts. Its an essay I wrote for a blog carnival on breastfeeding and special needs. Hope you like it all the same!)

I nursed for the first time shortly after my beautiful daughter was placed on my chest after a very quick and fairly easy natural birth. I’d had an easy pregnancy too (my GP pronounced me the Easiest Pregnant Lady Ever). It wasn’t until 9 days after that that we were told our daughter Nava had Down syndrome. 

First feeds
As I tried to process the news, I read and read, including about feeding problems in babies with Down syndrome. Nava had taken to nursing well, gaining right after birth though failed to put on as much as they wanted by 7 days old. She took a very long time to eat, about 45 min a time, so I worried she wasn’t getting full and she didn’t wake up to eat some nights and it was impossible to wake her to feed.
Searching online I found reference to a booklet by LLL Australia on nursing a child with T21, which you had to request to be mailed to you. I remember it struck me as laughably archaic that the only publication written specifically for my breastfeeding situation was so obscure you could only get in hard copy through the post, internationally. Surrounded by depressing information I decided to focus on what I did have: a daughter who could nurse (albeit slowly) and the warm support of a few doulas I’d made friends with in pregnancy. They watched me feed Nava and reassured me everything looked fine. This quelled my doubts and convinced me that her special status didn’t affect her feeding habits much.

Weight gain anxiety
Since Nava was full term and only had mild problems from low tone she could nurse okay. But only just okay, never well. I continued to read books and watched videos of correct latch and eventually started doing breast compression to help get milk into her. Her gain continued to slow and it was hard to know if it was due to the genetic implications of Down syndrome on growth (nothing I can do about it) or that she wasn’t getting enough milk (should I pump more or supplement?).  I started pumping at 2 months and turned out to be one of those women who couldn’t pump much. I went back to work part time at 3 months and between 3 and 4 months she barely gained weight and I got nervous. Our GP made faces when she saw her weight but continued to support exclusive breastfeeding. But after a month without noticeable weight increase I didn’t feel like I could keep waiting for her to grow. I finally decided to try one formula feed a day. I was still committed to breast feeding and was scared this would start the slide into less supply but my other fears won out.  She took it well but I hated giving it to her. I read sites saying I might as well give her solids rather than formula and soon started debating that course and experimented with baby cereal (I’d read so much about babies with Down syndrome not being able to eat solids well either I actually wanted to try to just to see if that was a whole new issue I was going to have to address but as it turned out she didn’t have difficulty). By 5 months, after 30 bottles of formula she finally started gaining and hit the 5 kilo mark. I slowly started to resign myself to formula feeding (pumping was getting harder and harder) and even ordered a case of it for our upcoming trip to the US. But I wasn’t ready to give up yet.

Domperidone
One of the advantages of living in an underdeveloped country is prescriptions are unnecessary. If a drug is available, anyone can buy it! So when an Australian friend mentioned she had taken domperidone for her daughter who had Failure to Thrive I knew I could try one more thing before embracing formula. I bought a 2 month supply over the counter just as I took off work for a month, looking forward to being with her all day rather than at work pumping.
The drug coupled with being together all the time worked. My supply shot up and after a month Nava was refusing formula and bottles. She only wanted to nurse. I could finally relax and enjoy nursing her without worries that she was still hungry or unable to grow. I gained confidence as a mother and felt I could stop worrying about her weight and growth for the very first time. I’d always liked breastfeeding but the relief finally knowing what it was like to feed without worry was indescribable.

Back to Work
Eventually though annual leave and maternity leave were exhausted and I had to go back to work full time (way way WAY later than if I’d been living in the US. Thank you progressive labor law in the poor ‘backwards’ country I live in). But by then Nava was 8 months old, she had grown significantly and way above average for a child with Down syndrome and had proven herself quite the solid food connoisseur. And more importantly, I had grown in confidence as a mom and felt confident in my ability to find solutions and make the right decisions for her. I decided to slowly quit taking Domperidone and let my supply do its own thing. I went back to work and quickly remembered how much I hated pumping but kept at it another month until we had a week off at Christmas. With the arrival of the New Year, I had a healthy, chubby 9 month old and I gave myself permission to stop pumping. I still nursed her every morning and night and whenever she wanted on weekends. The arrangement left me looking forward to nursing and snuggling her without the negativity I felt about my pump and the dismal amount of milk in the fridge each morning.

In the end
I planned to nurse Nava indefinitely. I could see myself nursing a two-year old easily. But Nava had other plans. Around 10 months, we finally had our first appointment with a speech therapist. She urged me to switch to Playtex nursers (the bottles with the plastic bag inside).  I’d read many times that they were better for oral motor development but thought the ones we were using were pretty good already. Nava seemed a great drinker to me and didn’t relish trying to import bottles and bags. But I sucked up my lazy gene and we made the switch. After just a week, there was an obvious change-her suck had grown so much stronger! It slowly started to dawn on me that despite the positive medical evaluations, she HAD had problems nursing. My supply issues made a lot more sense given a baby with a weak suck and I started to re-examine my assumptions about what had been going on in those first months nursing.

At a year old we went on another long trip and I was looking forward to a bump in my supply and nursing more frequently. It didn’t happen. Her attraction for solid food increased by the day and she made the switch to cow milk but her affinity for boobs dwindled.  While we were traveling, Dad was putting her to bed more and more and soon we were down to just a morning nursing session-our morning cuddle in bed together I loved so much. I could see the end was coming and tried to brace myself for it.

By 14 months old, nursing was over.  She just wasn’t interested anymore. I am so grateful that Down syndrome for us did not mean an NICU stay and tricky feeding issues. Instead we got to enjoy nursing. Occasionally my 20/20 hindsight about things I could have done better or help I could have gotten earlier can be painful but I still take a great feeling of accomplishment from nursing as long as we did, with the issues we faced, living in a place as lacking in services as we do. I am so grateful that Nava’s T21 wasn’t diagnosed until after her birth. Because of the “oversight” I got to deliver naturally and immediately have skin-to-skin contact. I have no doubt that a prenatal diagnosis would have meant a medicalized birth and robbed us of those beautiful calm moments when we first met.

It has now been two months since she stopped and some mornings I still wish we could go back to that wonderful feeling of cradling a small nursing baby. But instead I’m raising a toddler now. When faced with my nipple a few mornings ago, Nava got a little grin on her face, leaned in close, and gave it a kiss. 


As a reward for reading this far...here's a few outtakes of Nava's 3 month photoshoot!


can you see how hard I was concentrating on her latch?

she's on by this point and I'm happy
This essay is a part of a blog carnival on breastfeeding and special needs. Check out other posts on the subject are up at:

Go check them out-right after you leave me a comment ;)

14.7.11

toofie in living color

The tooth has come out a lot more now and Nava obliged us by grinning all the time so now the moment you've all Grandpa's been waiting for...

hi daddy? waz up?
 
you want some apple?

just kidding!

I'm funny like that
what? you wanna see my tooth?

like this?
Ok! Here it is!
 Its small and twisted and razor sharp. And #2 is working on joining it already.

post dinner damage. thank god for tile floors.

12.7.11

dam playdates

That's just Dam. No N.

One of the great things about the remote site where Daddy works (and Mommy sometimes too) is that it is full of young families. There are no less than 8 pregnant women working in  my company right now and that's not counting the guys who are dads-to-be. So there is no lack of play opportunities. Nava mostly enjoyed playing with Mio (her bud from way back) but also met a few new friends.

we forgot the high chair...and by "we" I mean me.
This little girl is a few month older than Nava but basically is still not eating solids. :( They say she won't take anything but milk with very rare exceptions. Since she came over close to dinner time, Nava volunteered to show her how good food is. She even shared her dinner: butternut squash mash, salmon, and whole wheat pancake I think.

Unfortunately she didn't think much of Nava's food choices. But she did like the colorful spoons.

missed holidays

I am a big supporter of Thanksgiving but that really the only American holiday I uphold here in the la la land of Laos. In honor of my national day this year I was at work all day talking monitoring, how very un-american.

Nava on the other hand seems to know what the 4th of July is all about. Because when I got home from work on the 4th, she wasn't there. A short walk later and I found her and her cousins...

 at the pool!

swimming pools during monsoon season are never very clear. its just mud. mud and a few microorganisms...






She was very proud of herself (can you tell!?) sitting up and holding forth to Goong And Sang.

At least one of us got to celebrate the 4th!

a week away

...from home and from the blog!

Our trip to the Site went great but sadly involved some very full days for me so I once again fell down on the blog-job. And just when some super nice people were coming over to check out Nava thanks to the heads up over at Pudge & Biggy's. Oh well...

Nava had a great time away, getting to see her Daddy every night. She unfortunately refused to drink any water for a day or two so that was a little more drama than mama needed but she eventually came around and all was well.

kickin' it with Daddy on the couch with local Mango fruit roll-up


That was pretty much our Sunday!

2.7.11

road trip!



We're on the road again. Nava, Goong & Saeng (the cousins) and I are off to the dam so Mommy can run a little survey (you know, just not to ask 4600 families a few questions). Its a four hour trip and Nava has always done brilliantly but as she develops into a toddler more and more each day i find myself getting more and more apprehensive about the drive. At least it's in a company car and I can ask the driver to stop at any time. Daddy can't wait for us to arrive and will have the condo cleaned and ready for is. (Right, Daddy?)

Unfortunately it has been raining non-stop for over a week at the site (why do they always build dams where it rains so damn much!?! Oh wait...). So Nava will be having lots of indoor playtime but there are quite a few kidlets living nearby so hopefully her playdate schedule won't be too affected. And our good friend Mr Mio lives next store so that's gotta be good.

daddy wants Nava to grow up to be a car model??


Next week: Navagating at the dam ;)

1.7.11

for comparison

We are loving the new playroom. But it means the upstairs is a little bare these days...

Tiger! Where did you put my stuff?!

lots of space for...? oh and the sofa's for sale btw...
Now its the dumping ground storage area. But pretty soon we are going to have to make Nava her own room. Two places in the house could be made into another bedroom and we aren't decided. Either will take a lot of effort and since we live by Lao rules...it could take a while before we get serious. Until then...
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