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.

Blame It

Do you know who Jamie Foxx is? If not, or if you're really angry at him because of his comments about Miley, feel free to bypass this post.

If you're still reading...

You may have heard his name at least once since he won an Oscar for his lead role in Ray. But if you're not a fan of Hip-Hop(ish)/R&B, then you may not realize that he's also a singer and a musician and a comedian.

He also has a sister with Ds. Her name is Diondra.

I learned this fact back during the Tropic Thunder debate last year. I read how some people were shocked that he would attend the premiere, regardless of his friends being in the movie. Admittedly, my first reaction was also disappointment since here I was with Playette and I had followed Jamie's career for so long. Even when I first saw the preview for his new movie, The Soloist, I had the thought of, "How could he be in a movie with Robert Downey Jr.? The person who uttered the lines that everyone found most offensive?"

Well, I don't know what types of conversations have transpired between those two men. I'll probably never know. But I can't help but think that Jamie loves his sister. I mean, even since then, I've come to understand what point the people behind Tropic Thunder may have been trying to make. It doesn't make me like the idea of immature people going around quoting the movie and possibly hurting a lot of people though. I'm not ok with that at all. All I'm saying is that time has opened my eyes a little more. I've watched shows like "How's Your News?" and enjoyed them. Like, really enjoyed them. I've watched the Perry brothers' "The Trouble with Syndromes" and laughed out loud (and then felt guilty, but then let myself off the hook). Honestly, I call this thing I'm going through a "journey' because it is. I am so far from where I'm going to end up. I'm sure of that. And the reason I'm so sure is because I can't even begin to see my daughter as disabled. She's behind her peers, sure, but I can't imagine her as an adult who is going to face umpteen challenges. I can't picture her as being a "defective instrument." (more on that later)

Granted that stuff I just mentioned is not for everyone, but I can appreciate what they're trying to do.

This post should not be mistaken for a glorification of crude humor or Jamie Foxx in particular. He's just a man. A man who makes a lot of money...and, of course, mistakes. I'm simply fascinated with all things Ds and he crossed my radar today. And, shoot me, I like "Blame It".

So, anyway, Diondra is in his latest video. I caught her dancing around the 2:25 mark and beyond and then at the very end, he can be seen pointing to her and saying what looks to be, "That's my sister."

My friend, Jocelyn, fresh new mama to Baby Dylan, informed me that Jamie is on the Tyra Banks show today and he mentions his sister in the interview. I'll have to set the TiVo to see that.

And at mark 5:07, he thanks her in his Oscar acceptance speech.

So, um, yeah, that's it.

Catching Up

I have a bet going with BD that I can get this post done in 30 minutes. I'll do my best.

Ever since Tricia posted about a great deal on diapers, I've been following Never Pay Retain Again. I've been slacking on my bargain hunting lately, so I got really excited when I saw a post about a promotion at Safeway on Friday. I ended up going twice. The second time was at midnight and I walked away with the following stash for $7.77 and $12 towards my next shopping trip. So I actually made money. Woohoo! I love stuff like that.


Since I spent the wee hours in the grocery store and was so amped I couldn't sleep and then passed out on the couch, I woke up tired on Saturday morning. Which was not ideal since we had a full day planned.

First, I went to kickboxing. Go me. I'm still struggling after skipping the past month.

Then, I took Playette to a Month of the Military Child celebration. There were bounce houses, face painting, bubbles, balloons, and a band. Playette was digging the music. Those girls were impressive (and cute!).

The idea was that I would take her for an hour, come home for her nap, and then head to the evaluation.

That never happened.

Shoot, we spent at least 30 minutes just eating pizza!

It was very worthwhile for other reasons though. There were representatives there from all kinds of organizations that support children so I had the opportunity to speak with someone from Easter Seals as well as a nutritionist from WIC who gave me some tips that may help in increasing Playette's weight which has been plateaued for the last 6+ months (ugh).

Amazingly, with only the car ride time to sleep, Playette did quite well during the eval. I was prepared for a meltdown.

We got started a little late and I was totally on the defensive, but eventually the walls came down and I even apologized to everyone I was throwing shade to since I walked in the door at the end.

The best thing was that I got to speak at length with the center director. She knows Playette since we go there for ST, but since she doesn't work with her regularly, I was able to get a fresh point of view that I could appreciate since she wasn't a stranger and I didn't have to start our story from scratch. The best news is that apparently our Regional Center has just entered a contract with this place and we're now going to work on seeing if Playette can participate in their program on a more regular basis. We could never afford it on our own. We're talking 3 hours/day, 5 days/week for $1500/month.

I almost fell out my chair just typing that.

Add in the fact that we'd still have to take her to daycare and pay for that in full since 3 hours a day just isn't going to cut it with our schedules.

But I like what they're doing there, so I've got my fingers crossed that we can at least get her in for a couple of days a month.

Today, we got up and went to Parents as Teachers, which was great as usual. Playette was all over the room and into everything. She loves it and I'm glad that I have the opportunity to take her to a class with other parents and kids this coming Wednesday.

I'm so, so tired thogh...and tomorrow's the first day that I have to be at work 30 minutes earlier than I have been (doing this will allow me to have every other Wednesday off).

I don't feel like I'm doing what happened this weekend any justice right now so I'll try to elaborate a little more in my next post.

It's all basically related to the IFSP meeting from last week. I need to write a proposal, requesting the types of services that we want to have in place for Playette. I don't want more of the same because I feel like it's pointless, among other things.

That meeting was just a colossal waste of time and instead of sitting in a room and being read to (again) by a group of people that are so being the times it's not even funny and being told what our child can't do even when she really can? Eh. Enough of that. Consider it a lesson learned.

We all know that we're the best advocates for our kids, whatever their needs may be, but sometimes it takes it being put in your face for you to realize that no matter how tired, deflated, emotional, or inexperienced you are, there comes a time when you have to step up and make your presence known. I thought I was doing an ok job up until now. Walking into an IFSP meeting with this particular group of folks and assuming that all is going to go well if we allow them to take the lead simply cannot happen. And it won't. Ever again. This is one area where I can't let laziness take over.

Ok, so that took me 59 minutes. Bah!

I have no idea how that happened.

Sleepy time.