Sunday, May 31, 2009

Very Cool

Thanks to Lisa for the heads-up and to Daniel for creating the Down Town website!

I'm already loving Genie. <-- click here to see the video
The "chromosome party" is a great way of putting things so that kids, and even adults like me, can understand how a child with Ds comes to be.

Friday, May 29, 2009

Why My Daughter is Skinny and I Stress Eat

What a long-feeling week.

I'm still fighting the Regional Center on, well, everything really. They sent me on a wild goose chase for the following after I asked for help with PediaSure:

1. A denial letter from WIC. Ok, whatever. I could tell them that we didn't qualify, and they could easily look online and verify, but no. I needed to make an appointment, take off from work, and get a letter. - Done.

2. A prescription from the Ped saying that PediaSure was recommended. So I called and requested one. Which required me to play phone tag with the Ped for a while and then explain to her what I needed it for. Granted, it was nice to chat and go over the issue as a whole, but then I had to send BD over to the office, 30 minutes away, to pick it up in person. - Done.

Mission Accomplished.

I was pretty proud of myself too. I got it all done in record time.

Then, I spent the next few days attempting to get in touch with our Service Blocker Coordinator, who eventually tells me that I've "forgotten" something.

Yeah, whatever. That is so not the case. Unlike her, I write down important things that people tell me.

Back to the now-longer list.

3. Obtain a denial letter from our insurance company. Uh-oh. Now this one is tough. Apparently, they just don't give stuff like this out all willy-nilly. [deep breath] First, call the insurance company. They tell me that I need to request the Ped's office to request from them an authorization for PediaSure. Then, they will say no decide how to rule and send notice back to both me and the Ped's office within 14 days. Hm. So I did that last week and then, in the midst of typing this out, I call the Ped's office (again, some more) and see if they've heard anything. Amazingly, they have. Today. Not so amazingly, the answer is no. Yay? - Done.

I mean, I would have been happy with a "yes" of course, because that would mean that we'd be done, BUT I knew it wasn't covered and now this means that I remain at the mercy of the Regional Center and our PITA lovely Service Blocker Coordinator.

So, in the midst of all of this, I went to Social Services, remember? That

The thing with MediCal is that if you qualify for it? You qualify for WIC.

And with WIC you get to drink all the PediSure you want.

Well, maybe not really. I'm sure there's a limit, but I couldn't pass up the opportunity to write that because for some reason, that would be really hard to explain here, it cracks me up and I need a laugh.

Anyway, so not only would we have the elusive MediCal that comes in handy when you really need something to come in handy, we'd have insta-access to PediaSure, which is how this whole most recent mess got started in the first place.

Win-win. Right?

Of course not.

Insert Service Blocker Coordinator.

Again, trying to get in touch with her is difficult, but I do realize that she is not my personal concierge so I cut her some slack. Nevermind that I'm still waiting, after 3 weeks, for a new IFSP meeting. Slack? Being cut.

Oh, so wait. I did accomplish something at Social Services on Wednesday. I turned in enough personal paperwork so that, in the wrong hands, we'd be financially ruined. When I called the Case Workerto inform her that the info had been submitted, she informed me that the only thing that remained was the letter of support from the Regional Center.


Back to the Service Blocker Coordinator. After a lot of blah blah blahing with other people in the office, I find out that she is there and get transferred to her, but only because no one else there has a clue about the Institutional Deeming waiver I'm seeking. Not that my Service Blocker Coordinator does either, but still. I'm her responsibility, for lack of a better term.

More blah blah blahing about how busy she is and how she went on vacation and...(I stopped listening. Don't worry, it wasn't relevant.).

Then she asked me about the IFSP meeting. Huh?

I reminded her that I was still waiting to hear back from her about that.

Totally different can of worms.

So then she tells me that her boss said that only permanent clients of the Regional Center can qualify for Institutional Deeming and permanency is determined at age 3.

I call BS. Immediately.

My child does not have a singular condition that is considered temporary in nature. She is not possibly going to "age out" of the Regional Center at/before age 3. This does not apply to us. Try harder.

Plus, I have this nifty guide on Institutional Deeming (from another Regional Center) that I found somewhere and thankfully held onto that reads:

The child must be an active client of the regional center. Although this status is generally determined for the child at age three, if his or her medical condition warrants, a child may be given active status prior to age three at the discretion of the [regional center] physician.

So there.

And this? Is why I want Reese's Peanut Butter Cup Cake for dinner.

Wednesday, May 27, 2009

One of *those* moms

Gosh, I hope I'm not one.

I make deliberate effort not to compare my child to others. Sometimes I do ok and sometimes I fall flat on my face. But I do try. Hard. And if I screw up, it's never on purpose. Usually, I'm just sticking my foot in my mouth.

I mean, I know what it feels like to be the mom in the room whose kid is different from the others.

I've removed myself from conversations about height and weight and abilities from time to time.

Sure, it still gets under my skin a little sometimes. And then I come hear and rant about it...which feels great, by the way.

And that's why I hope I didn't come off crappy the other day when I was talking about what Playette is doing these days.

I mean, I don't take credit for any of that. It was more of an opportunity to give a shout-out to my amazing husband who is made of caramel or Reese's peanut butter cups or funnel cake or whatever it is that I happen to find fabulous yet completely unlike me at the moment.

Feeling inadequate, much?

Which brings to mind:

For those of you that have been there/done that, how do you know when a child is ready for potty training exactly? What did that look like to you?

I have articles printed out and I even have a DVD that I ordered free from Pull-Ups or wherever that probably explains this a little, but I'd love some real talk on this, since we're apparently we prefer winging it over here.

We're not trying to force anything on her and I just really need to know if we're causing psychological damage with this whole, "Playette, meet Potty" thing. I mean, she seems to like him (I just decided, it's a him) and if it saves us a few diapers, I'm all for it.

When we came home from the Cardio appointment yesterday, I had to go and thought, "Hey, maybe she does too," and put her on the pot. A couple of minutes (max) later we had #1 and #2 and she didn't seem stressed out by the process at all.

I'm not saying it's impossible for a child with Ds to be potty trained this early because I know it happens. But in this case, we weren't even thinking about Ds. We were just thinking about what comes next and in the midst of a trip to BRU, we grabbed a cute little pot and then one day sometime after that we decided to test it out.

I just want to make sure we're not screwing our kid up.

And honestly, there's this one part of me that is afraid that this is going to end up being her thing. Like, she'll be potty trained at 2 and then never speak/read/write.

That's real talk.

Tuesday, May 26, 2009

Wandering Eyes

Poor BD.

Malea has apparently fallen for the Resident who saw her today before the Cardiologist that I continue to adore entered the room.

She was all flirty and winky and let him use his stethoscope without complaint, which is a rarity these days.

And then I got all of my questions answered, in addition to an artistic breakdown, which I greatly need because I failed Fluids 1 in college and just the phrase "pressure drop" alone is enough to lose me.


Plus, we got great news on top of that. The heart, it is fine. So much so that we probably won't have a need to see our guys again before moving next fall.

*single (happy) tear*

Stone, Unturned? Never!

In my quest to figure out why Playette isn't wasn't gaining weight, we made an appointment to see our illustrious Pediatric Cardiologist. It actually happened really quickly, thanks to the support of our Pediatrician. We'll also have a GI appointment soon, along with a million other every-six-month things that tend to overwhelm me every June and December.

You'd think I'd attempt to spread these out some, but that's just too much like right.


So, Cardio. This afternoon at LPCH. Two hours each way. (driving incentives)

We're off to get an Echo.

And then follow up with the Doc.

If you read that without the sing-songy voice in your head, you're a much more mature person than I am.

I came back to work today for a grand total of 3.5 hours. And then I'm off tomorrow. Which is good because our Medi-Cal application packet, that I saw and opened on Sunday, is due yesterday and I need to spend some time at the local office confirming that we are, in fact, U.S. citizens. That, honestly, will probably take at least two hours. Just because.

The good thing is that the case worker we've been assigned seems to be a good match. Does she know anything about Institutional Deeming? No, of course not. That's too much to ask. But does she laugh at my jokes, entertain my rants, and return (all 1 of) my phone calls thus far? Yes. So in my mind? She's a keeper.

What else, what else, what else...


Let's talk about that.

Because that's the word that comes to mind when I think of the Cardiologist we're going to see today. Him + aforementioned driving incentives + the hope that I have that my loving husband will do some the majority all of the driving is what makes this whole thing bearable.

Seriously, the doctor rocks. We saw him the first time about a year and a half ago and I remember him being so attentive and patient and completely not treating my child like the specimen that we were crazy to have brought home with us from the hospital. Cause, yeah, those doctors exist.

Anyway, this guy was great and I hope that I wasn't loopy and he's actually like this for real, consistently, and not just in my head.

I knew there was something different about him and then, at the end of the appointment, in a nonchalant sorta way, he said, "My nephew has Down syndrome."

And it all made sense.

More people, doctors even, need to have a "nephew" with Down syndrome. Because then maybe they would get it.

Our kids are not the proverbial lips off of the Michael Jackson 8th birthday cake that I saved and wouldn't let anyone eat and then one day realized that no one would ever be able to eat them because they don't exactly last forever, no matter how much Saran Wrap you use (do I even have to mention this is a true story?).


They're kids. And we love them. And they should be treated with respect.

OMG, I'm tired. Why am I so tired?

Feel free to ignore the parts that made no sense.

Monday, May 25, 2009

Make Room for Mama

I got back home just after midnight on Saturday morning. Can I just tell you how much I hate the puddle jumper flight that brings me home on about 75% of my trips? Ugh. And this time they overbooked it and offered $600 vouchers. So tempting. If only I hadn't been so homesick, I surely would have delayed my flight by 8 hours or just sucked it up, rented a car, and drove two hours.

Yesterday was spent mostly in the bed for me. I was exhausted and slept most of the day away. Today was just slightly better. I did at least get up and go to the grocery store this evening. I was feenin' for some Costco rotisserie chicken too, but since I only saw fit to drag myself in there 5 minutes before closing, they were all out. Boo.

I've learned a few things since I've been home that I'd like to share:

1. No matter where I go, no bed or shower feels better than my own.

2. BD got along just fine without me. Like, really. He has his own way of doing things, sure, but they work so yay for him!

3. Playette now poops on the potty every night after dinner like clockwork. She also signs the word potty, which I had nothing to do with whatsoever. (I have photographic evidence, but I've never seen anyone else post photos like that on their blogs so I'm a little hesitant to look like a wack-a-loon. Some more.) I don't know where we're headed with this whole potty training thing, but it's a start at least. We'll figure it out as we go. I hope we're not screwing it up by using this approach.

4. My child is at least 2 pounds heavier than the last time I saw her. Go, PediaSure and go, BD, with the food stuffing.

5. She's also progressed nicely in the self-feeding department. I forgot how good it felt to just eat and not eat-scoop-feed-offer-beg-scoop-feed-eat.

I know the food doesn't look all that appetizing here, but she was straight grubbing on the chicken, rice, beans, cheese, sour cream, and guacamole. We didn't have to feed her one mouthful. When she got tired of using the bendy spork thingee, she went back to using her hands, but I'd say that great progress is being made nonetheless.

6. Playette is a master at backing down the stairs properly now. It shows me that all of the practice at PT sessions has been worth it. I also caught her using the same maneuver trying to get down off of our bed today. It makes me feel good to know that not only is she learning and retaining new skills, but that I also don't have to worry so much about her plowing down stairs headfirst.

It's amazing how much can change in 12 days.

Oh! And I've also learned that my husband makes a pretty tasty mojito.

So, uh, I'm gonna stop typing and finish it now.

(I'm crazy behind on my blog reading so if there's anything you want to make sure that I see, shoot me an email. Not that I'm not behind in my emails also, but it's still better than the outstanding status of my Google Reader, so that's a good route to take.)

Monday, May 18, 2009

Imagine That

I'm actually accomplishing quite a bit during my little vacay. I may not be making appointments or "negotiating" with the local 0-3 program, but I'm keeping busy.

I took a total of 5 classes at the gym over 3 days last week. Sure, I was a little wore out, but I feel good. Doing so reminded me that I'm not completely lazy and that I have the capacity to get in shape again if I could only get the stars to align in my favor in my real life (as opposed to the fantastical fountain of free time I'm floating in until Friday).

I'm almost done reading The Year My Son and I Were Born, which I really identify with so far and am enjoying. When I get home, I'll have to share my previous two reads. I've been very fortunate that people have shared their books with me, so I'm glad to pay it forward. Be on the lookout for me to offer up Jewel and The Memory Keeper's Daughter.

I drove to Philadelphia to visit my friend on Friday and Saturday, which is always great even when we're just hanging out and running our mouths. I not only got to spend time with the new baby, but also got to go watch the baseball game of her older son. (Little kids playing sports is one of the cutest things ever to me.) Plus, I got a chicken cheesesteak just the way I like it and some water ice. Shoot, I was loving life.

After that, I drove to DE to my aunt's house and hung out with her and my cousin, the big time college graduate as of today. I got a home-cooked meal, in addition to some Red Lobster. I know it's fast-food seafood and all (guess who was a hostess-with-the-mostest in high school), but we don't have a RL near us and BD wouldn't want to go even if we did, so this was kind of a big deal for me. Mmmm, cheddar biscuits. We also did some shopping and talking, catching up on the time we've missed. This was my third trip there in the past 6 weeks or so and I was glad that this time it wasn't for such a sad occasion.

Tonight may be a quiet one for me. I missed the only class at the gym that I wanted to take, but I did perform a gasping, sweaty negotiation ritual run earlier today so I'm good for meeting my activity goal. The rest of the evenings this week look like they'll be full with dinners with friends and hopefully the much-anticipated viewing of The Little Mermaid. I say "hopefully" because Ticketmaster is so not my friend right now.

Never one to relax completely, I signed on to speak to some minority students at my alma mater on Wednesday evening. I guess someone figures that if I could do it, anyone can and I might be able to inspire someone. Honestly, my college years kinda sucked with the whole crappy personal issues, sucking at classes, etc. and I still made it out with a degree on time, so maybe they're on to something. I'm not looking forward to telling them what I do for a living now though. It's not exactly the most inspiring role I've played in my career.

Have I mentioned that the longer I think about it, the more I want to quit my job?

No? Well, it's true.

I don't know if that's possible since we kinda based where we currently live on two salaries, but I am so demoralized it's not even funny. More about that later.

My library time is ticking down so I'm off to find some good eats.

Thursday, May 14, 2009

Mother's Day at Central Park

Here are a few photos from Sunday. I love them!

I'm sure more will follow as my friends get everything uploaded. It's great being surrounded by photographers. I wish I could convince them to just follow Playette around full-time.

Playette peeking from around BD's shoulder. She spent most of the weekend riding around in the backpack carrier.

She's obsessed with my teeth.


My favorite of the bunch. Doesn't he look like such a cool dad here? The huge/tiny contrast is great too.

And because I am hacking (again, some more), they sent me to the doctor and it looks like I'll probably be off tomorrow. Who does that?! I mean, the job is only two weeks long and I have to take sick leave? I feel like such a wuss, but, hey, I guess they don't want to chance me getting them sick so I understand.

Wednesday, May 13, 2009

Heads Up

I don't really have access to email right now. So, if you're trying to reach me and I seem non-responsive, that's why. I got the bright idea to come to the library on my lunch break and see if I could do it from here and I can.

Please bear with me as I try to catch up on correspondence.

Today is another beautiful day in? on Long Island. For all of my independently wealthy multi-millionaire friends hahahahahahaha, I highly recommend the real estate here. Kings Point is absolutely gorgeous and I can't even get over it right now.

That last statement has me feeling like such an old lady. I really sound like one, don't I?

Anyway, so I not only don't have access to hotmail, but I also lost the computer I was using in the office since the guy whose desk I had for the last two days decided to come back from vacation. Boo on him. For realz.

I received a ridiculously tedious task today that may very well take me until the day I leave to complete. But that's why I'm here, right? So help I shall. I really can't complain except about how uncomfortable my uniform is, except that's no one's fault but my own. And maybe Playette's. And BD's. And my former job's. And any other entity I can pass the buck to.

Oh! On that note, I tried a Zumba class at the gym last night. hahahahahahaha It was kinda fun and the time went fast, which is a great combination, but did I ever feel uncoordinated?! I might give it another try tonight since I have a 1 week pass to the gym across the street from my hotel.

Lemme know if you have done/currently take Zumba classes. Do you like it? Does it get easier?

One last thing. Today as I was sitting with my tedious task, one of the younger reservists that's also here came in to ask the admin assistant a question. He prefaced it by saying, "We must be r*tarded, but..." Ugh. Ok. What to do? He was talking about stamping some envelopes and clearly meant that it was a task that anyone should be able to do and he couldn't. So I said, "I'm sure a r*tarded person could do that." He just looked at me with the "huh?" look so I elaborated. It took me a minute to decide if I should or not, but I did. It's still so very uncomfortable for me to do so, but I didn't want him to walk away thinking that I was calling him dumb because he couldn't get the stamp to work and I knew it was quite possible that would be what he received from my statement. I told him that my daughter is developmentally disabled and I find that term offensive. He didn't say anything back and I was a little shaky after I did it. But I did it. So there. Gold star and all that.

And then another guy, a former classmate of mine, came in and was telling me how his 3 month old is 18 lbs. Good grief. I'm not sad about that or anything. It's just a comparison that I'm dealing right now with since he's almost the same size as Playette at almost 2 years old.

Tuesday, May 12, 2009

Spring in NYC

Ok, this is more like it. Warm, sunny. Oh, I love it.

The place where I'm doing my reserve duty this year is actually the same place I went to college. It's kinda surreal knowing that this year's freshmen could probably not even write in cursive the year I graduated. Geez.

I went for a run walk earlier and I was amazed at how beautiful everything is here. I mean, this town. Whoa. It's full of mansions and perfectly manicured lawns, all close to the water. Plus, it's just a short car/train ride into Manhattan. How did I not appreciate this place when I first began to live here 15 years ago?

Well, today, I started appreciating. I went further down the main road than I ever have before. I would ask what I was doing the four years I went to school here that prevented me from venturing two miles away, but I know the answer to that.

I looked at all the houses. I talked to the guys building the new construction. I sang songs that brought both strange looks and thumbs up my way from the drivers and yard workers, respectively.

And when I got to the end of that road, I cried.

I mean, there I was in this beautiful place and the thoughts started to come. Thoughts of all of the other things I've surely taken for granted. Thoughts of being young again and naive enough to believe that I was invincible. That the undesirable things of my past were behind me and that the world was open for me to live out my wildest dreams. I thought of how I did the "right thing" for so long, but it never really made me happy. Oh, man. It got heavy.

But it didn't last long.

It was an itty-bitty pity party.

Sure I've had more than my share of winters, but spring is here today and I'm going to enjoy it.

Over the weekend, I had a great time with BD and Playette. We arrived very early on Saturday morning and were picked up at the airport by a friend who drove us into Manhattan to our hotel at Herald Square. It was a really nice place, new and clean, just like I like 'em. They even let us check in at 7 am, which was an unexpected treat.

Playette was loving riding in her carseat with our new Travelmate. In fact, whenever we would just be hanging out in the room, she'd climb back in it just to sit. We also found out on this trip that she loves cheesecake, courtesy of her Auntie D.

Saturday was a whirlwind. After we woke up from our naps (red eye flight wore us all out), we went to meet with my aunt who had just come into town for the weekend as well. After socializing for a bit, we left my aunt, cousin (the one that hates me, but whatever), and his girlfriend and went to meet Auntie D, who so graciously offered to take the bus in from DC.

Not long after, the group of us headed over to Staten Island on the ferry for a gathering of friends. It was a lot of fun and Playette was the center of attention, which she loved. Everyone was so excited to meet her.

I had such a good time riding the ferry, the subway, and walking. I miss the city, y'all.

On Sunday, we celebrated my second Mother's Day by having lunch with some more friends (I'm laughing because it sounds like we know so many people...and they all live in NYC. Ha!) followed by a trip to Central Park. We met many of the same friends from the previous day at Bethesda Fountain. Again, it's hard to believe that I lived so close to such a place for so long and never went there. I love it now though. It was a great day of listening to music, checking out street performers, eating snacks, taking pictures, people watching, and talking. Playette loved the jazz band best, I think. There were so many pictures taken and I'll surely share some when I can.

That night, BD and I went to the finale party for The Amazing Race while Auntie D enjoyed some alone time with Playette. Yay for the grown-ups! We've been lacking in the "time alone" department lately due to the (hopefully temporary) loss of respite with Ms. J..

It ended up being a very long night for me since I had to report to reserve duty at 8am Monday and still needed to pick up my rental car from the airport and check into my hotel after the party ended, but it all worked out.

I even got to go back into the city for a fantastic dinner last night. If you know Top Chef, it's Harold's restaurant. I still have goosebumps from the desserts and I only had tastes from other people's plates!

BD and Playette are now back in Cali and I'm hoping to make the best out of the time that I have. I could have left work long ago, but I couldn't resist my last day of access to this computer.

And those are my notes.

Countdown to home: 10 days

Saturday, May 9, 2009

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.

Friday, May 8, 2009


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?

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.

Thursday, May 7, 2009

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.

Tuesday, May 5, 2009

Nobody's Perfect

View 1

View 2

$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.

Monday, May 4, 2009

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.

Friday, May 1, 2009

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!


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.