Friday, February 27, 2009

Once Bitten

Yesterday, I called to get Playette enrolled on our dental plan. I figured someone needed to look in her mouth and confirm that something was actually in there. Buried beneath her gums maybe, but there.

From what I recalled, as long as I got her added before the end of the month, she'd be able to go to an appointment in March.

I was wrong.

Apparently, the deadline was the 20th. So now the earliest I can get her to see a dentist is April 1st. Well, if I remember to fill out the enrollment form before March 20th, that is. I didn't fill it out right away because...hello, I have until the 20th!

Such is the life of a procrastinator.

Anyway, fast forward to five minutes ago. We're back from a great Aqua Therapy session and playing on the floor as a family, trying to decide what to have for dinner.

Playette obviously has her second wind and is all. over. the. place.

Climbing BD, stepping on him, screaming, laughing. Then she comes over to me. Grabs my finger. Puts it in her mouth.

Nothing new. She's been teething practically since she was born.

And then she bit me.

WHA?!

"I felt a tooth!"

BD: "Really?"

"Yes! It hurt!"

BD: "Hm. C'mere, let me look."

*insert screaming, writhing child here*

BD says he saw felt something. I didn't, though feeling it was good enough for me.

Top right. Over to the side.

My baby finally has a tooth.

Thursday, February 26, 2009

The Day the Comb Stood Still

Check out my busy girl. I was determined to have a quiet day on Sunday, but she had other plans. Like climbing in the dirty clothes to play, followed up by an adventure in the shower (where she promptly closed the door and trapped herself in).






This was all her. I just happened to catch her in the act. Trust me when I say that she's well supervised. She's just fast. And obviously has ideas of her own.

And don't even get me started about the hair. She does not leave the house like that.

I honestly wouldn't mind if we had matching hairstyles, but I'm not that bold...yet.

Wednesday, February 25, 2009

T21 Traveling Afghan


We just signed up to participate. Better late than never!

Instructions & Info Post

What interests me the most about this experiment is the journal. I'm looking forward to reading what other families have to say.

Do you know someone with T21 that lives in any of the "missing" states? If so, please share this info with them in case they'd be interested in participating.
I personally know of people that fit the criteria in Arizona and Delaware, so I hope you're reading this, y'all.

I can see yoooouuuu.

Ok, not really, but my monitor does have this killer reflection thing happening and I can see myself really well and - dang it! - I forgot to wear earrings again, so, well...anyway.

Stay tuned for pics of Playette with the afghan.

Tuesday, February 24, 2009

Article on Prenatal Testing

New Safety, New Concerns In Tests for Down Syndrome

Thanks for letting me know about this, Crystal.

Monday, February 23, 2009

Choosing Naia: A Review

This has been difficult for me to sit down and write. I've had it in a draft form for at least a week now.

It's not the book. Not the topic so much either. It's the timing.

I didn't have a prenatal diagnosis with Playette. Suspicions of her having an extra chromosome first came the morning after she was born. It was a shock to say the least, but, looking back, I'm grateful that was one thing I didn't have to be concerned about during my pregnancy. I asked about Ds throughout, but I was always "poo-poo'd" with the "You're too young to worry about something like that" talk.

Since having my daughter, I've met many people who received their child's diagnosis via prenatal testing. I did not participate in any prenatal testing past an initial blood test at my first prenantal appointment.

All I've ever learned about the topic of prenatal diagnoses, I've learned from others on message boards or phone calls. It's not my own story to tell.

Choosing Naia is a very good example of two parents telling their own story. It's done via a journalist who followed their journey, first through newspaper articles and then expanded into a heavily-researched, very thorough, full-length book.

First off, I liked the book. I really did. The edition I read has a photo on the front cover of the parents with Naia, celebrating her first birthday. So, honestly? I knew how it ended. There was a choice to be made and they, well, chose Naia. Regardless of knowing how it all ended, I didn't feel spoiled in the least.


The story begins around the time that they receive their "poor" prenatal testing results and ends when Naia is about 3 years old. It's engaging, educational, emotional, resourceful...pretty entertaining (for lack of a better word) for what comes across as non-fiction. Of course I'm sure my appreciation is greater given the circumstances of my life, but I'd like to think that it's just a good book. Period.

I received the book from Lisa, a fellow blogging mama with whom I enjoy sharing ideas, thoughts, and even literature. She first posted about the book back in December. I looked at that post last week and noticed my response in her comments section. I thought it was interesting enough to post here in part:
I understand what you're saying about being glad you (we) weren't presented with having to make a choice. I like to think that for parents of a child with Ds, whenever they found out is what was right for them. I say that because those I know who received a prenatal diagnosis say that they were glad for it so that they could research beforehand. I know me though and I would have been doing more moping than learning. Thank goodness everyone's not like me.
Looking back at that statement now, after having read the book, is interesting. Personally, I don't see the benefit of a prenatal diagnosis. There's only so much "research" you can do. I think the analyzing/depression/seeing your child as a diagnosis only far outweigh any benefit that could be incurred by contacting your local Early Intervention program in advance. I understand that parents can gain acceptance and be able to welcome their child differently, possibly more positively, having had plenty of time for the news of the diagnosis to settle. I get it. I really do.

But I also see that prenatal diagnoses lead to a 90% termination rate. So most parents are not "researching." They're moving on.

And as the parent of a child with Ds, that makes me uneasy. Uncomfortable. Sick to my stomach.

People don't want babies like mine.

Lisa posted about this after she finished the book.

My comment on that post:
I wonder the same thing...about what people around me have chosen to terminate after a prenatal diagnosis. 90% is a lot! They have to be around me somewhere, right?

I also don't sit well with the notion that folks who choose to terminate have a baby "that died." No. It's not the same. I've seen mothers who know their child is sick or won't survive birth and they continue to delivery, sometimes at full term. The former parents have no right to compare their journey to that of the latter parents. If you choose to terminate, so be it, but don't act like it was natural causes. That just fires me up because it's so dishonest and unfair.

You ever seen one of those "TMR" [Termination for Medical Reasons] forums? If you can handle it, you'll see women patting each other on the back and supporting one another through the "loss" of their children with Ds. It's terrible. If you're going to do it, own up. Don't act like a martyr.

Ugh. Now I'm mad.
It's not a pro-choice/pro-life debate. Really, it's not. Please don't confuse my transparency with my policial views.

It's about how I feel. A lot. And it's even more relevant now than ever. I've got all kinds of things going through my head these days. It has to do with friendships and support and how to be appropriately congratulatory when someone to whom you've offered both friendship and support receives the "good" news that their child won't turn out like yours.

To be continued...

Sunday, February 22, 2009

Through Her Eyes

The one thing that gets me the most this whole mama thing is...so much is NEW.

Y'know what I mean?

Playette may see a butterfly tomorrow. And if she does, it would be the first time. Now, I can't remember the first time I saw a butterfly, but there's a good possibility that I'll remember her firsts.

Seeing through her eyes puts a wonderful new perspective on so many things.

We took Playette out today to a new place. She rode in her stroller and watched the people as they walked by. She waved to many of them, her eyes all lit up and sparkling. She really enjoys people and they enjoy her. It's a wonderful thing to witness.

After we done at the boardwalk, we went to get something to eat.

Playette's been to have sushi before, but eating with chopsticks?

That was new.







Thursday, February 19, 2009

See that?



It's a tumbleweed.

The symbol of a dusty, lifeless space.

AKA my blog.

I'm sorry that I haven't had many interesting things to say lately.

It's sick season over here and, frankly, we're just not all that exciting.

There's a lot of coughing.

And hacking.

And then there was that desolate block of time that we were Internet-less.

Plus, no Aqua Therapy this week.

I was sad.

But I'm ok now.

Today, I go get a chest x-ray. I can't be too careful after that whole pneumonia-followed-by-bronchoscopy experience.

Tomorrow, Playette has an appointment to see the Ped.

Be back soon...promise.

Saturday, February 14, 2009

Respirar

I'm feeling a little better due at least in part to a few things, I think.

1. A fabulous no-name nose spray. Why BD held out on me for so long, I don't know. All I care about is that I can breathe again!

2. This stuff.

3. The Blogess' fantabulous Valentine's Day gift to us all.

A cat that you can make say anything you want in the accent of your choice.

I had way too much fun with that.

Laughter is totally the best medicine.

To be fair...

TBaA wasn't that bad.

Yes, it's cheesy as all get-out, but the messages were on point.

That second episode I mentioned actually came on today so I watched that one too.

Apparently, in 1997 at least, Chris Burke was a recurring character. He was an angel named Tyler.

(Perpetuate stereotypes much? I can't help but think of this great family).

But the show is about angels, so I'm inclined to let that slide. It's not like he was the only one and they were saying that all people with Ds are angels.

Still, it was nice. Extra sugary, syrupy type nice, which is fine if you like that sort of thing.

And they did share some truthful, up-to-date (even for having been filmed in 1997) information. For that I can be grateful. Besides Angel Tyler, there were also other characters with Ds. A married couple, a little girl, and a newborn-ish baby.

I also watched "How's Your News?" today. I didn't find it offensive. Should I have? Any thoughts to share?

Friday, February 13, 2009

DOWN* SYNDROME

I happen to think that TiVo is one of the greatest inventions ever.

Combine that with my interest in all things Ds and what you get is a WishList search on Ds. Since many people still call it "Down's syndrome" (like nails on a chalkboard to me unless it's accompanied by a lovely British accent), I added the asterisk just to be sure and catch any show that mentions Ds in its description.

So far, I have netted an episodes of "Touched by an Angel" and "Nanny 911". The TBaA episode does not seem to be something that I would ordinarily enjoy. BD and I watched the first 10 minutes together and found it borderline comical.

I'll probably still watch it by myself though because, well, I'll watch anything.

Plus, I'm sick, so it's whatever.

There's another TBaA set to tape in a few day I think. Apparently, TBaA had a Ds theme going during 1997. In the next one, a family receives a prenatal diagnosis, I think.

I'd have to go downstairs to verify and you just know that's not happening today, right?

I still need a nap.

Blah-ging

I'm home sick today after going in to work for a couple of hours this morning. I thought I was going to make it through this bout of office illness unscathed, but nah. The cooties got me.

It's been a busy week, but that's nothing new really.

Playette is still walking around with her "buggy" and loving it. It's really fun to watch her go.

I had the pleasure of taking her to Aqua Therapy the other day. Usually, that's BD's gig. The pool is about 94 degrees and Playette loves it. So do I. We practiced kicking, walking, an limbing up steps. She also enjoyed "diving" from the side of the pool into my arms. It's a really great experience. I wouldn't be surprised if BD and I end up fighting for the chance to be the one who gets to take her to those appointments.

Ok, nap time.

Blah.

Monday, February 9, 2009

On the Go

Here I am thinking I'm doing a good thing by going to the gym and check out what I missed!

video

Playette and I went shopping on Saturday night. Just as Target was turning out the lights, I grabbed this box off the shelf. It was totally an impulse buy. This wasn't the toy I had my eye on at all. I just wanted to see if she would pay any push-type toy the slightest bit of attention.

I admit that I'm trying to encourage her to take those first independent steps.

Well, at first, she really wasn't interested.

We tried again on Sunday, this time on carpet. She was a little more engaged, but just slightly.

Apparently, tonight she was ready to make her big debut. Thankfully, BD was able to catch her in the act with his cell phone.

Yeah, I'm cheesin'.

I'm proud of my girl.

Parents as Teachers: February Edition

Yesterday was time for PAT again. I forgot my camera, but I was able to capture a few moments on BD's cell phone.

Awwww, look at the baby painting!


In the tube with Daddy.


I thought this smock was so stinkin' cute.


Sometimes I just like to see her stand. She was showing off yesterday and staying up for quite a long time.


Close the Schools!

We got snow*.



*or hail that sounds like someone is shooting at the house with an automatic weapon in the middle of the night, but it does look rather wintry, right?

Friday, February 6, 2009

"How's Your News?"

I'm not sure how this is going to turn out, but I figured I'd share the info so that we all can have the opportunity to view the show and share our opinions afterward.

From the article:

MTV's new "How's Your News?" show can be seen not as exploitation of people who have mental disabilities but rather as the expression of a subculture that has much to contribute to the mainstream but never had much of an opportunity.

Click here for more.

Thursday, February 5, 2009

Excited!

I may not be a fantastic cook, but I can watch the heck out of Top Chef and I have several Food Network shows saved on TiVo for posterity. Believe that! I've even gone a Top Chef restaurant tour of San Francisco (by myself and totally unofficial).[/dork]

In the latest episode, they mentioned Pebble Beach Food & Wine. A long weekend of great food and chefs in my 'hood? Wheeeee! Even moody Stefan should be there.

Yeah, I wanna go.

And no, I'm not independently wealthy.

Turns out you can volunteer. I've submitted my name in two different places so far. Tom Collicchio, Ted Allen, Roy Yamaguchi, Eric Ripert, and Cat Cora...be on the lookout for me, ok?

Lemme know if you want to come too. We can sort recyclables and be crazy foodie fanfolks together.

Why Playette Rocks

After producing a list of 25 random things about myself on Facebook and then reading what wonderful things Lisa said in regards to her son, Finn, I found it so easy to think of things I love about my own Playette. I'd like to share my Top 20 with you now.

1. Her excitement as she goes up the stairs. The anticipation of reaching her room is adorable.

2. How she waves goodbye to upstairs on the way down.

3. How she must push the buttons on the house alarm each time we leave. We tell her, "Make us safe," and she does.

4. That laugh. It's contagious.

5. She eats my cooking.

6. She looks great in a tutu.

7. She l-o-v-e-s other kids. Just being around them makes her face light up.

8. She can go from "I'm gonna party all night long" to knocked out sleep in 3.2 seconds.

9. When I say, "Give mama kisses," I either get an open mouth slob attack or a "you may kiss me" cheek tilt. It all depends on her mood.

10. I love playing the "Criss Cross Crawl" game we created. There was no discussion, it just happened organically one day and now we do it every once in a while. We both end up in a fit of giggles every time.

11. Her unabounding love for BD. It shows me I did something right. He loves her right back.

12. Her new stutter crawl move. Super cute. It's like Mark Time marching if you know military or drill team terms, just with crawling.

13. When she shows me new skills. Always in her own time, like she's been waiting for the perfect time to reveal then TA-DAAA!

14. When she lets me try cute hairstyles.

15. She give fantastic hugs.

16. She gave me a new perspective on life and perfectionism.

17. Playing "Where'd she go?" - our version of peek-a-boo.

18. She crushes stereotypes every day.

19. She has a flexible demeanor and is open to all kinds of experiences.

20. Her gummy smile.


If you post a list about your own little (or not so little) one(s), please either let me know in the comments so I can be sure to see your blog or tag me on Facebook.

Right about now, I need to focus more on the positive. It's not always easy, but I'm trying.


Wednesday, February 4, 2009

Wellsphere

A few weeks ago, I was contacted about participating in the Health Bloggers Network on wellsphere.com.

According to them, they are "revolutionizing the way people find and share health and healthy living information and services...[connecting] millions of users each month with the valuable insights and knowledge from health leaders..."

They didn't ask for any money and it seemed harmless enough, so I said ok.

They basically just republish what I post here. If that gets more Ds-related info out to the public, I'm all for it. There's too much misinformation floating around and my goal is to do my part in drowning it out.

Hopefully this will all work out for the best. If you're a member of Wellsphere, let me know so that I can friend you. Right now, when I click on the "My Friends" tab it says this:

Chrystal .. has no friends yet : (


That is so hilarious, then a little sad, and then hilarious again.

Busy Day

How is that on days like today when I'm not going to work (which is a huge stress-inducer for me) and my child is in daycare that I still feel so busy?

Why do I ask questions to which I know the answer?

I've got to hurry and get Playette's hair done so that I can take her to daycare in time for her OT appointment. We're going to try and move some of the session into the classroom. For the last year or so, we've spent the 45 minutes in a conference room, but the new teachers would like to know what's going on so that they can help Playette practice what she needs to thrive in the new environment. I think that's fair. Originally, we were told (a long, long time ago) that the primary caregiver would be relieved so that she'd be able to participate in the conference room with us, taking the knowledge back to the room.

That never happened. Not once.

Anyway, back to thriving. I wish she would. Since going in the new room, she's actually lost skills. A month ago, she was standing up on her own all the time and I just knew that walking was not long to come.

Now she's back to only pulling to stand. She will take steps if we hold one finger though.

And yesterday? Yesterday, she played wet noddle all day long. She was just blah. She didn't fight me when I did her hair. No excitement, no energy. No symptoms of illness either. Everyone was at a loss. But this morning she's back to normal, so maybe that's over?

Does this sound like familiar behavior to anyone? You know I'm new to this whole mama thing.

I have an appointment that I'm not exactly looking forward to today. Apparently, I'll be in a bit of pain afterward, so no going into the office today for me. Not that I don't have plenty to do. If I'm up to it, I'll pull out the laptop and do some writing.

BTW, I'm still in my pajamas. Let's see how much I can get done in 15 5 minutes.

Monday, February 2, 2009

Living in Invisible Cities

On this journey of mine, I've learned a lot about things that just, honestly, I never would have thought of before. You don't know what you don't know...y'know?

I read articles, am a member of several parent groups (both real and virtual), devour books (though not as quickly as I would like), and basically have a heightened interest in a all things "special needs."

One day, I came across an article. I think it may have been a blog post on some web site actually. That part's not important. What is important is that I read the comments. And among those comments were the words of a new mother. She spoke from the heart about her baby girl and I was drawn in through her words. I clicked the link that led to her blog and now I am a faithful reader. She doesn't post every day, but when she does, I am moved. I think she's wonderful and I have her permission to share a recent post with you. I think every parent should read this.

I think it's very timely since I've been talking about the definition of family recently.

It's not about having things be easy every day. It's unconditional. It's dealing with something unexpected and maybe not liking it, but doing your best regardless. It's not fair sometimes.

This...is love.

...
...
...


The photograph above is part of our nighttime ritual. Turn on the dishwasher, turn down the heat, shut off the lights, draw Willa’s meds. These take us from 9:00pm to 6:30am, peppering the evening and deep night hours with their interruption. Those tableaux of weirdness I mentioned before? This would be one.

My husband will not even take Tylenol if he has a headache and I know looking at this layout every night on our countertop makes his brain collapse a little each time. He cannot believe it’s ok to give a baby so much medication, ok for a baby to have so many tests and procedures, ok for a baby to have radioactive materials pumped into her like water. And I say, “Look at her, we feed her through a tube, none of this is ok.”

And it’s not.

It’s not ok.

During the first real scare we were ambulanced (is this a verb?) to the local hospital. Frustratingly (if not dangerously), because of insurance and liability issues we have to be taken to the nearest medical facility. Never mind the fact that they do not even have pediatrics. Never mind the fact that Willa is way way more than they can handle. Never mind the fact that each time we are sent there we waste five to six hours waiting for the transport that will take us to CHOP (Children’s Hospital of Philadelphia and the most unfortunate acronym I have ever heard) when the baby is failing. It’s a nightmare and this past time we found ourselves in the ER I found myself doing something that shocked the hell out of me.

The ER doctor looked at Willa and began ordering tests, blood work, cultures and all manner of time-consuming, unnecessary and misdirected busywork leading us down lost avenues and forgotten streets. I knew that he was leading us there and so I said, “No. I don’t want you to do any of those things. I just want you make sure she is stable and arrange for the transport to CHOP.”

Now I never in my life would have thought I would do something like this. I’m no shrinking violet but I was brought up to allow figures of authority to do their bit and listen quietly while that bit was done. Not anymore. I’m learning what so many of you already know. When it comes to medicine, all bets are off. You have to trust yourself when you know things are not ok.

Part of finding my way as a mother has been finding my way as an untrained, unskilled and highly emotionally invested nurse. I can insert an NG tube into my baby’s nose, put it in her stomach and tape the outside section to her face in less than a minute. I can draw meds perfectly, I can administer them in the dark, shutting off a pump, disconnecting tubes, flushing lines and getting the feed rolling again before the alarm goes off. I can insert a g-tube into a hole in my kid. I can identify when Willa is tachycardic. I can talk my girl through an MRI, an X-ray, a DMSA, a VCUG.

It’s not ok.

I never wanted to be a doctor because I never wanted to have to do any of these things, make any of these decisions, live with consequences. What if I had been wrong in that ER? What if I make a mistake with her dosages? What if I have to decide to let her live or die?

We don’t even take Tylenol, but we have a girl who takes everything, needs everything, will have every test, will need every procedure.

So what is ok? Different things different days I think. It’s ok that my husband and I talk about everything. It’s ok that we demand what’s best for her; even if we are using what information we have at the time. It’s ok that I can learn new things. It’s ok that I know I’ll make mistakes. It’s ok that I am scared of very little at all anymore. It’s good even.

It’s a morass: medicine and its world. But we are in it, whether we like it or not. I’m not a doctor, or a nurse, but a mother with an interesting skill set. Now if I could only figure out how to work my crock-pot I’d be unstoppable.

Sunday, February 1, 2009

Just for Fun: Travel Edition

I like to travel and have a goal of seeing all 50 of the United States.

It's possible, but that might end up requiring a road trip, which - ICK. Not one of my favorite things.

I don't count states I've only traveled through, remember? Otherwise, I would have been able to select IL.

(BTW, I found my little highlighted map and now it's taped up to the wall right here next to my monitor.)

Now with the countries, I'm a little more lenient. I never stepped foot off the ship I was on in France or Belgium, but I was there, dang it! When you spend two weeks on a merchant ship, traveling the North Atlantic in the winter, freezing and dirty? It totally counts that you're there when the ship ties up. Trust me on this.

There was no way to select Diego Garcia, but I spent 4 months there and I have some great memories. It's probably one of those dots under India.

Playette's Maps



Awww, look at the little traveler!

Create your own personalized maps.