More Jet Settin'

Does it ever really stop?

I've got reserve duty starting on Monday, so here I am in NYC. I'm not sure what kind of access I'll have to a computer/the internet over the next two weeks, so please bear with me.

First SuperFunFabulous thing on the agenda is to attend the Amazing Race Finale party, affectionately known as TARCon. I've been going to there for years and years and it's always a very good time.

On the 21st, I'm planning to go see The Little Mermaid on Broadway with my aunt. So excited!

I'll keep you posted.

Now? It's pizza time. Mmmmmm.

Hangin'

It's still morning here so I totally made it.

Are you ready?

So the story behind the dishwasher is that my wonderful husband, he who cooks and cleans and is just an all-around MegaDad, seems to miss the fact that we have several silverware/small utensil recepticles in there. As such, if all he has is one of those items to put away, he opens the DW as little as possible, with nary enough space provided to fit his hand in.

And then he drops it.

So sometimes it ends up in the basket, sometimes it doesn't.

And it's always one of the front baskets because the others don't exist to him.

I don't get mad, I just laugh. This is not a battle to pick for me.

Besides, he doesn't even believe that he does it. That's why I took the picture.

The other night, he started talking to me about making him look "bad" in front of so many six? people. I told him no one even knew it was him yet. He then went on to say something about how it was me. HA! HAHAHAHAHA! Me?

On a regular basis, you can find me rearranging the utensil baskets, spreading them out and digging the random forks out of the bottom of the appliance.

It's ok though. I much prefer loading to unloading.

What's your preference?
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Lovely Sheree is the winner! Your next slurpee coffee thingee is on me.

I'll be sure to put your prize in the mail before I head out of town.

Walking Backwards, Upside Down

That's how I've been feeling lately. Like, Silly Sally in Playette's favorite book of the moment.

I've been spending way too much time trying to put my goals for my daughter into items that are measurable and attainable, realistic and specific. I have the sick feeling that by the time we're done with this IFSP, it will be time for the mid-year review.

The good news is that I finally submitted my input today. I'm so glad that's no longer hanging over my head. It feels kinda like finishing finals. While knowing that you only get a short break before the madness starts all over again, it doesn't keep you from appreciating being done.

Living in my IFSP-consumed world, I didn't post about when I took Playette to a local "Mommy and Me" type class. At least that's what I think those are called. I've mentioned it before, about how I've been trying to get back so that I could spend so quality time with the Littlest, singing goofy songs and seeing her interact with her peers.

Well, it was great. I wasn't sure if I'd still feel that way after a year of not going. Also, this was a new group of folks. I'd have to explain things. I was honestly scared when the first little boy I was introduced to was Playette's exact age. He was like 6'2, 220 lbs. I mean, this kid was huge compared to my little munchkin.

But I took it all in stride. I really was o-k. And that felt good.

The instructor, who also happens to be the lady we work with in the Parents as Teachers program, reassured me that not everyone is what they seem. Some people are facing issues that don't happen to be written on their faces. And, of course, she was right. It wasn't long after that conversation that I met a woman with twin girls, one of whom has B-W syndrome. The girls were born premature and they were not yet walking at a few months younger than Playette. I could see that mom was checking Playette out, so I quickly let her know that my girl is 22 months and has been walking just 6-8 weeks. We've since talked on the phone and have had the opportunity to exchange diagnosis info. Cause that's how we roll.

I went to WIC last Friday and got some tips for pumping the calories into Playette, in addition to a denial letter for services. This is a good thing since the Regional Center requested this - and a prescription from the Ped - in order to provide us some assistance with buying PediaSure. The lady there also connected me with someone who works with Medi-Cal, so in a few minutes, I'll leave here and go chat with that lady about what needs to be done for Playette to qualify. From what I've been told, we first have to be denied (I'm sensing a bureaucratic trend here) and then can counter that Playette, on her own, qualifies for a waiver under Institutional Deeming. I don't even really remember what that means anymore. It's in my head that they'll use that justification to say that the state is actually saving money on her because we kept her home and not in an institution. If I'm wrong about that, please correct me. I'm tired.

So, while I hope we never need Medi-Cal, I'd like to have it in place for the just-in-case factor of it all. It would feel good to scratch something off my list.

I'll come back either later this evening or tomorrow morning and give you the answer to Ye Olde Dishwasher Dilemma. If anyone wants to change their answer, go ahead. I'll take the most recent comment as your final answer. Plus, the more details, the better. If you can figure it out, you deserve coffee on me.

BTW, I went into Starbucks today to get the gift card. While I was there, I got sucked in and ordered a tall, non-fat Caramel Macchiato. I was so proud of myself for using the lingo. Until I realized that what I really wanted was a Frappucino.

I hereby request that they change the names to "hot coffee" and "that slurpee coffee."

Those names I can handle.

Nobody's Perfect

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$5 Starbucks gift card goes to the person who leaves the best, most accurate, description of what has taken place in these photos in the comments section.

New Resource

For those in the Ds community that aren't yet aware, there's a blog, Down Syndrome New Mama, that's sharing some really good information. Way better than those scary books we've all read that led a lot of us to tears in the early days.

Nope, none of that.

"New Mama" tells you the stuff that you want to know, like what toys can you use to stimulate your little one. And, even better, mamas that aren't so new to the journey are reading along too and sharing their experiences.

Yesterday's NM post was a request for Ds-related blogs of all types. NM is willing to add the blogs of our extended community as well since there are many similarities in what we go through as parents.

So, if you read here and that last bit applies to you, please feel free to leave a comment with your blog address if you'd like to be included.

Also, if you read blogs that fit this category, we can always request permission from the writer directly.

Learning & Sharing

Since Playette has been diagnosed with good old-fashioned Trisomy 21, I've been not only obsessed with all things Ds, but also all things syndrome, period.

I've met all kinds of folks that have exposed me to diagnoses of which I might not have ever known otherwise.

Here are a few:

Costello syndrome

Cri-du-chat syndrome

Beckwith-Wiedemann syndrome

I love that such a vast Ds community exists. We really do live in a great time where this is concerned. People before us have paved the way so that we now have Buddy Walks and conventions.

The Ds world population is pretty large (approximately 1.5 million people, according to what I've read). If it weren't, I'd hope that another larger group would welcome us into their fold and help us navigate our way on the road less traveled.

Anyway, I was just thinking of these families today and hoped I could increase some awareness on their behalf.

You're welcome here.

Shopping, Eating, Writing

I hate shopping for clothes. Really, I do. And not just because I'm not happy with my size right now either. I never really have liked to spend time in stores, trying on clothes. I think I may have at one point, when I was a kid, but after I learned that you're supposed to put the clothes back on the hanger when you're done? Eh. It became more like work and that took all the fun out of it for me.

I'm known to be a pretty frugal person. It's no secret. I don't make impulse buys. I love setting budgets and sticking to them is even better. When I had more time on my hands, I used to go through my bank statements line by line, verifying that there were no random charges. Nothing got by me.

These days I'm lucky BD tells me when my paycheck has been deposited. Really, I wouldn't even know. Which is kinda sad because money management used to be like a hobby of mine. Years ago, I was even interviewed on MSN Money. Topic: being frugal. I got some really cute pictures out of the deal. If it were still online (and I've looked - nada), I'd link to it.

But you know what? When it comes to stuff for Playette, I'm spending like crazy lately. I don't give it a second thought. Where other women may have a thing for shoes or clothes or makeup or whatever, I will continue to wear my "Friday pants" or good sweatpants (depending on the occasion) if that means I can get interesting things that will benefit Playette, either in a direct or round-about way, in two clicks.

My most recent purchase was Emma's Gifts. I'd browsed the website before, during Playette's first year, I'm sure, but it took a reminder or two to lead me back. I'm really looking forward to watching it!

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Playette has decided to go on a hunger strike, which is frustrating me to no end.

Remember how good of an eater she used to be? Well, apparently that food was going into a pit somewhere or not being absorbed or something because Little Miss P has not been gaining any weight. Like, seriously. She plateaued at 19 lbs about 6 months ago.

I remember back to when she was first born and we worried and worried and worried about her weight. Every ml of milk was documented. The time, the amount, the time, the amount, the time, the amount. When we ran out of sheets, we copied more.

Even when it seemed that she was making good progress and had doubled her birth weight at 6 months, we continued to log the time, the amount. I can't really explain why, but it was hard to stop. Even if we took a break for a day, something would bring us right back to logging the feedings again.

Well, those days are long gone and now look where we are!

Since we don't know what's going on yet, we were advised to start pumping the PediaSure into her in the meantime. We started out with one serving a day.

And now she's addicted to PediaSure. And is refusing food.

Oh, and she's spitting up because she's gorging herself on the stuff.

Apparently, she finds it quite tasty.

Great, huh?

Unfortunately, she didn't get the memo that said that the PediaSure was supposed to supplement her meals, not replace them.

I have to laugh to keep from crying.

New plan:

Give her the PediaSure before bed so that it doesn't accidentally fill her up too close to mealtime.

Go see a GI to make sure there are no underlying issues.

Go see a Cardiologist to make sure that her heart isn't doing something funky and unexpected that's leading her not to "thrive".

And just for fun, go see an ENT. Hey, why not. As long as we're keeping busy, let's make sure there's no fluid building up in her ears that's inhibiting her speech development.

And I guess we should add in a visit to the dentist too. Those two teeth are still all we've got and it's high time they get some care (even though they're still coming through ever so slloowwwly).

Endo and Ds Clinic appointments have already been made for the summer.

And now I'm off to write up the IFSP that I've been procrastinating about all week. Bah.