A little bit of catch-up

So, it's been a super-long time since I've done a kiddo update, and as I am currently sitting in my room having some quiet time and reminding myself that I do, in fact, adore my children, despite their current incessant whining and orneriness... if orneriness is even a word.


I think I'll do bullets today... I'm feeling lazy. I blame it on the rain.


We'll start with Dax :)

• 23lbs 2oz and 32" tall at his last doctor's appointment!
• He's TWO now!
• Pulmonology has us weaning off of his O2 at night. We're allowing his O2 sats to drop to the low 90s since that's actually good for the holes in his heart, and it doesn't appear to be causing any problems with his pulmonary hypertension. Yay! So he still wears the O2 at night, it's just turned down to a ridiculously low little half-puff of a tad bit of an eensy amount of extra air. :)
• We have surgery scheduled in June to replace his tubes in his ears since one has worked its way out, and that ear has already accumulated fluid again. I called all our specialists to see if anyone wanted to piggyback any procedures since Dax would already be sedated and intubated and... they all said NO. Wow.
• Still allowing Dax to outgrow his dosage of Viagra... He's just a slow grower and it's taking a while.
• We've been trialing out bolus feeds instead of continuous feeds with the g-tube, and Dax's appetite has really picked up during the day. We're trying to increase his fluid and caloric intake and are still trying to figure out the how much-es and whens.
• Our most recent swallow study showed he is still aspirating on thins, so we'll keep on thickening his liquids. His most recent laryngoscopy showed his left vocal chord is still paralyzed, and will therefore likely remain that way, and that is probably a huge contributor to his inability to handle thins. Hopefully he'll learn to compensate over the next few years.
• We've actually started trying some intro to potty training to build tee-tee and poop awareness, since Dax has pretty much no awareness of discomfort at all. We've been having Dax sit on his potty after his bolus feeds and flushes when we know he'll have to go, and then making a big fuss about his success. I will go into details about that in a different post, which will include fun details like how he feels the need to pull his wiener out and point it at things while he's sitting on his potty and how he thinks putting toys and food in the potty while he is sitting on it is a fantastic idea.
• Since we're starting the potty, I picked up some big boy underwear the other day. Turns out they were a fantastic purchase! In addition to them making Dax look like a miniature Calvin Klein model, he can wear them over his diapers to make a nice place to tuck in g-tube extension tubing when we leave it attached between bolus feeds and flushes. I love it when a plan comes together!
• Still not walking, but he's up to 5 or 6 steps at a time and is standing for longer periods without holding on to things. His PT has ordered a reverse gait trainer assistive device for him, but stated, for the record, that she "knows he will start walking the day it comes in." That's my boy :)
• We're about to start on a new journey, and it's pretty scary for me but I think/hope it will be the best thing to do for Dax in the long run. Since we're out of RSV season now, we're about to start outpatient PT, OT, Speech, and swallow therapies. He's only been getting PT for months now, since there are just no pediatric ST or OT home health therapists in this area. During the winter I felt the benefits of outpatient were outweighed by the risks, but I want to really push him now, at least until next RSV season, and I'm hoping the increased therapies will help.
• In addition, we also have Dax and TyTy both on the list for a blended early intervention preschool. Again, we're out of RSV season and Dax needs the socialization, as does Ty, but it's pretty terrifying for me. Luckily, I know the ladies who work at this preschool and they're amazing, and I know both my kiddos will be in good hands. I think my biggest fear is Dax getting into a peer's juice and aspirating in addition to my usual fears of germs... But I know him being around other kids is important now, too... So I'm letting him go, and I know it's what's best... And everything will be okay. Right... Right?!
• We did the March for Babies a few weeks ago and ran into several of our old friends and met some special moms I had been wanting to meet forever. Our team raised over $1800 :) I hear it was the biggest March for Babies ever in the state of Tennessee... I'm so glad we were a part of it, and so thankful for everyone who marched for Dax, Aubrie, and Kins!

And finally, Dax is currently recovering from our scariest incident since he left the NICU in 2008. I woke up Friday morning and could hear him breathing. When I went into his room, he was sitting up and awake, and was hyperventilating. He sounded like he'd just run up a tall hill, and he kept burping from all the air he was swallowing. I checked his sats and they were okay, but not great, and I called the nurse to see what she thought we should do. I ended up giving him an extra puff off his inhaler and started beating his back to loosen up what I could hear and feel rattling in his lungs. He was warm, so I did an ancillary temp and it was 100.1... Which isn't that high, I don't guess, except this is the first fever he has run AT ALL since he was in cardiac failure at 6 months old. At any rate, the nurse arrived and listened to his lungs which she said were definitely wet, and I called the doctor. She let us go ahead and dose him with Lasix so we could see how he reacted, and thankfully he had improvements with the first dose. By 10AM his breathing was back to his normal pattern, and he was able to start coughing up some of the junk that had settled into his lungs. By the afternoon his fever was down and everything was pretty much working its way back to normal. I am so extremely thankful that we were able to remedy it quickly... I had to dose him with Lasix again today since he's still a little wet, and I'll play tomorrow by ear, but he is definitely feeling more like himself. And I am almost back to normal, too. Almost.

And now on to TyTy:

• Dax's "little" brother also weighs in at 23 lbs.
• Ty, who once wore his brother's hand-me-downs, is now re-hand-me-down-ing the clothes back to his brother.
• He's now got his 2 bottom teeth, and if I don't kill him first, he should be cutting in 2 more bottom teeth any day now. I think he'll look a lot like Lola the bulldog with his 4 bottom teeth and no top teeth.
• He's decided that his "big" brother is the coolest person on the face of the Earth, and as long as he can see Dax and do what he's doing, life is good.
• Oh, unless Dax is playing drums on his head. Still not a big fan of that.
• TyTy is crawling everywhere and pulling up on everything. He has not yet mastered the art of sitting down once he's pulled up, though, so about 3-5 minutes after he stands he cries until you sit him back down. Hopefully he will soon learn how to plop down on that big fat hiney of his.
• He turned 9 months old yesterday, and wears pretty much exclusively 18-month clothes now. We're currently searching for "Richard Simmon's Sweating to the Nursery Rhymes."
• He's saying "Dada," "Mama,", "Nana," "dog," and "Ty" pretty much whenever he wants to, and pretty much never when I want him to.
• He's working on tee-tee awareness along with his brother, since Tag-a-long TyTy was determined to be right by Dax during potty time, anyway. Oddly enough, Ty usually tee-tee's faster than his brother once he's on the potty, and is the first of the two to poop in the potty. Although, I guess that's not too awfully odd, since Ty poops, on average, about 42 times a day, while Dax's plumbing runs considerably slower....
• Ty loves Oreos. Actually, "Oreo addict" might be a more appropriate term. He would snort, inhale, and inject them if he knew how. Must be genetics; maybe he can go to Oreoholics Anonymous meetings with his Ma Mills.
  

I think that's the highlights for now, and duty is calling, so I best be off... I'll upload a few more pictures soon!

Love you guys, hope you're doing well, and I'm glad to be back!

Quite possibly the best picture ever made.

Potty animals

Asking for prayers....

Hi all,

I'm asking you all tonight to pray for all the people affected by the tornadoes that destroyed many areas in the southern states today, including two communities in my native Choctaw County, Mississippi. As of now, I know of several friends from my childhood who have lost their homes and loved ones... And there will still be more to come.

I just heard about an hour ago that a girl I went to high school lost her 3-month-old daughter in the storm, and the mother is currently in the hospital for her own injuries. When I went to her Facebook page to send condolences, I cried when I saw she had just uploaded pictures of her daughter this morning.

She had no way of knowing...

Life is too short. Don't take anything for granted.

Things that make you say 'Hmmmm...'

I hope this is an indication of a future interest in plumbing and not just a preview of what he'll be doing in college...

The "R" word

So there's been this blog post a'brewing the last few months... I'm anticipating this won't be everyone's favorite blog post ever, and it might piss off a few people... And that is not in any way my intention...

...but the opinions expressed in this blog are mine and mine alone and do not in any way reflect the values or attitudes of anyone else anywhere, anyhow, and if they do, well then I could be friends with that person, but you don't have to like either one of us and so on and so forth...

Moving on.

Let's start with some back story:

I was probably 19 or 20, back when I knew everything. It was Day One of Racial and Ethnic Minorities class, and all the black kids were sitting on one side of the class and all the white kids were on the other side, and the professor walks in wearing a denim vest and cowboy boots... She welcomes us to class and says "Today we're going to talk about stereotypes. You guys tell me some stereotypes about black people."

(Crickets chirping)

(Chirp chirp chirp)

(Stupid crickets)

Finally the professor says, "Come on now, we all know some! You know, pink house with purple shutters! Watermelon, collard greens, and fried chicken! Government cheese! Come on, you can do it!'

A few of the black students laughed... We white kids were petrified. Oh my god, what was she doing?!

A couple of the black students volunteered... "We all have four or five babies by different baby daddies," and "We all are in college on basketball scholarships..."

A few more folks chimed in... Then the professor asked about white people.

What? There are stereotypes about white people?

"They all sit at home watching Wheel of Fortune every night!" What? I love Wheel of Fortune.

"They can't dance!" Umm, guilty.

"They can't jump!" I, umm, yeah, can't argue with that either.

"They all drive around in the mud drinking beer and shooting at things!" Phew, maybe I'm not a card-carrying stereotypical white person after all... Although I have actually been a passenger of a mud-covered truck being driven by someone who was drinking beer and shooting at things... But that's not that important.

"They lock their car doors when they drive through my neighborhood." Honestly, yes I have.

"Okay," the professor said, "What about Asians?"

"They can't drive!"

"They're good at math!"

"Their vaginas are slanted!" (Don't shoot me, I'm just the messenger.)

We were all shouting answers out. Stereotypes are FUN :)

"What about Jews?"

(The crickets returned... We were smack dab in the middle of Bible Belt, Mississippi. None of us actually knew any Jewish people.)

"What about gays and lesbians?"

"Birkenstocks!"

"AIDS"

"Rainbows!"

"Flannel!"

"They're faaaaaaabulous!"

I hope you see my point by now :)

By opening that door for us to all be able to talk about our stereotypical views of people different from us, all of a sudden nothing was off limits. We spent the rest of the semester educating each other in an open, friendly, fun environment.

What's my point, you ask? Quit rushing me. I'm getting there. You might as well get comfortable, because this is going to be one long, drawn-out blog post.

What I learned in that class had very little to do with any other cultures or religions... What I learned is that we have stereotypes about everything, and that is normal. When we are introduced to a new concept or idea, and we mentally sort that unknown into an area and make positive and negative assumptions based on our history. That's a normal part of learning, like a child calling a dog "cat" because it has four legs, or an adult calling a dolphin a fish, even though it's a mammal, or a person "Mr." even though he's a "Dr."

We do that because the new item is novel and we put it on the shelf we think it fits best.

But here's the problem, and one of the points of this drawn out post...

If I call a dolphin a fish, it's because I don't know much about dolphins (or porpoises. I could actually be picturing a porpoise in my head right now instead of a dolphin. I can never tell them apart.) It has nothing to do with the character of the fish, err, mammal, or it's abilities to swim or breathe or do whatever else it is dolphins do. It doesn't make the dolphin any less beautiful, or any less graceful. It proves only that I am dreadfully ignorant when it comes to dolphins.

But let me bring this back around to what I am really trying to say...

My point is... We're ignorant about new things until we are exposed to them, and then we do the best we can with what we know...

My mom reminded me today about something my little brother Oops said when he was a little bitty thing... A very old black woman whom he saw almost every day passed away, and my mom and dad did their best to explain death to him. Fast forward until he had time to process it a while, and he asks my mother "Hey mom, when I get old and turn black, will I die, too?"

Yes, it's pretty funny, but its a great illustration of how we think and how we make incorrect inferences.

Segue to "the 'R' word." (Not a very smooth transition.)

I have spent my entire adult life working with people who are "different." Mental illness, mental retardation, developmental delays, brain injury, genetic syndromes... So I came into motherhood with a knowledge of "different" that is broader than your average mother's. When Daxton was born we knew he would probably never be completely "normal," and I cried buckets of tears over it. All of a sudden the word "retarded" was a much bigger, meaner word. People shouldn't say that word; it's a terrible word. How can people use it so loosely and callously to poke fun at others?

But wait.

I had spent my entire life wishing people were more open about their differences. I love comedians who can stand on a stage and make jokes about EVERYONE, regardless of their race, age, creed, or color. Laughter can unite us all, right? And I'm from a family that, if you walk around listening at any family gathering, constantly makes fun of its members for being too short, too tall, too fat, too thin, too smart, too dumb, too drunk, or too wild. There's never any hard feelings because, well, we are made up of people who are short, tall, fat, thin, smart, dumb, drunk, and/or wild.

And getting offended over the truth is a little silly.

But then I hear about comedian Sarah Silverman telling an absolutely horrific joke at a function, a joke making fun of developmentally delayed kids and terminally ill kids... And when I heard the joke I thought Sarah Silverman was the coldest, cruelest, most awful person alive.

But wait.

If I do some soul searching, I think I might have laughed at that joke 15 years ago. Maybe even 10 years ago. Definitely not now...

But if the joke had been about bad Asian drivers or exploding Muslim extremists, would I find it funny now?

I mean, not long ago my favorite joke was about AIDS and dementia. That joke is hilarious... Although probably not to someone who has AIDS and/or dementia, or to someone who loves someone with AIDS, dementia, or some combination thereof...

Come to think of it, I guess AIDS and dementia are probably not typically super-hilarious medical issues... Not like erectile dysfunction and schizophrenia, which make the best jokes...

Unless you have erectile dysfunction or schizophrenia...

Hmmm.

So I made myself think long and hard about my feelings about "The 'R' word," and I've made myself do some reshelving...

...And here's what I got...

My son is developmentally delayed, and will probably grow into a diagnosis of mental retardation when he turns five. I can sugar coat that any way I want to, but it doesn't change it.

Here's the thing, though... I will not allow Daxton to be defined by his diagnoses. He will have to define himself.

I remember the night we were told he had cerebellar hypoplasia and would have global cognitive delays and probably never walk, etc... One of our primary NICU nurses told me "He's still the same kid." That may not sound super profound, but it is. No matter what labels he is given, or what shelf people put him on, he is still the same kid.

And that kid is awesome.

But you know what's more important than anything else? No matter how awesome I think he is, he's going to have to know that for himself. He is going to have to be able to embrace his differences and be comfortable in his own mentally retarded skin. Why? Because he WILL be made fun of. He WILL be ostracized. He WILL be looked at as different... He WILL be stereotyped...

But you know what? That's a normal part of life, whether you're in a special education class or on the football field. Like it or lump it, Dax has to be able to go out and show the world which shelf he goes on... And unless I want him to go on a "To be pitied" shelf, or on a "To avoid" shelf, he needs to be able to accept himself, laugh at himself, and show others why he is so special. He needs to know that being called a "retard" does not change who he is, and that being "different" is not bad.

Have you ever seen Josh Blue do his stand-up routine? Click here to watch a clip, then tell me what you think about him. Would you put him on the "Poor guy has cerebral palsy" shelf, or on the "This guy is awesome" shelf?

He has CP. He knows he has CP. He's not offended by his CP, or by others pointing out that he has CP. It's a part of him... But it does not define him.

I was sitting at a facility for mentally retarded adults a few weeks ago and overheard the best conversation ever... It was between a blind guy and a lady with Down Syndrome...

The lady says, "Hey, you're blind."

"Yep," says the guy.

"I'm not," says the lady.

"I can see that," says the blind guy...

And we all cracked up. Together.

That highlights something I think would make this world a much better place... We spend so much time trying to hide our flaws and our differences... Why? Why are we not allowed to talk about them? Why is it rude when a child points at a person at the grocery store and says "Look, Mom, that guy is fat," or "That lady is really old"?

I mean, if the guy is really fat, and the lady is really old, why is that offensive?

Mom also reminded me today of the time many, many years ago when she was pushing Oops in the grocery cart and they passed a man with no legs in a wheelchair. She moved on by pretty quickly, not knowing what Oops was about to say, but knowing something was coming and it wasn't going to be pretty...

"Mom," he says, "Where does he put his shoes?"

Couldn't that have been a great teaching opportunity? After my mom stopped laughing?

I really wish we all wore shirts or buttons everyday that advertise our differences... Maybe a dry erase board around our necks that we can write on each day to tell others what we are most insecure about at that moment... I visualize people walking around with signs that say "I'm lonely" or "I haven't shaved my legs in a month" or "I have gas today" or "I didn't have any clean underwear this morning so I'm not wearing any" or "I have a really small wiener, but a really big, fast sports car."

And then, somebody might look at you and say "You have a small wiener!" but you can look at them and say "Yes, but you have hairy legs!" and everyone can go on about their business. Then on down the street, someone might come up and say, "Well, hi, I have a small wiener, too! Would you like to go compare sports cars?"

The truth is, we all have insecurities and fears... And to get back to Daxton and the "R" word, even if he were "normal" he'd still be picked on for something... Because all kids are.

I remember when we were kids... We called each other whatever names we could think of. "Deflicted" was a common one, which I now know we were not smart enough to know the word was actually supposed to be "afflicted," and we frequently broke out the big gun, "dill weed," which I just recently learned is actually available on the spice aisle at your local grocery store. We obviously used whatever words we could find that we thought could get the biggest response, even if we had absolutely no idea what the words meant.

Does that make it okay for kids to pick on each other? Of course not. And I think the campaign to end the use of the "R" word is noble but... As long as there are people on this earth, there will always be ignorance and stupidity. Maybe the overuse of "retard" and "retarded" will someday fade away, but the word will be replaced by some other word that will be equally as hurtful to someone.

And honestly, many people I know who want to do away with the "R" word don't give a second thought to saying "That's so gay" or "That's so ghetto" or "He's probably just another illegal alien" or "She's so bipolar."

But, really, what's the difference? Oh, that's right. The "R" word affects ME. The others do not.

But maybe no one likes to be stereotyped or pigeon-holed.

There are words we say and hear around us daily that may or may not affect us personally....but I can guarantee they hurt someone, somehow... because they are a novel concept to us, and we shelve them the best way we know how... and we remain ignorant.

So what to do? Do we eliminate all potentially hurtful words? Do we each learn all we can about every socioeconomic status and religion and race and ethnicity so we can understand their cultures?

Here's my vote. I vote to learn more about others, and try to never believe a negative stereotype about anyone until I know it firsthand.

I vote to expose my own children to people different from them and allow them to ask questions and learn from each other as equals.

I vote to educate others on the stereotypes surrounding mental retardation, intellectual disabilities, developmental delays, and the like.

And, yes, I vote to continue trying to educate everyone that "retard" is not a polite thing to call others, and that being mentally retarded is not bad or shameful...

But I also vote to teach my children that being "normal" is over-rated...

And I vote that, in this family, we will not find the words "retard" or "retarded" offensive. I vote to not be offended if the words are used in ignorance because, you know what? Thankfully most people are healthy and average and blissfully unaware of what shelf to put us on... And part of me is very thankful for that.

I also vote to not be offended when people use the words intentionally to hurt. I refuse to give them that power... And as Eleanor Roosevelt so eloquently put it, "No one can make you feel inferior without your consent."

And I just don't think any of us have anything to feel inferior about... Actually, I'd call us all pretty damn blessed.

I'm baaaaaaaack

Okay, so I don't actually mean right now, per se, but FINALLY, after 4 months in computer rehab (thank you procrasting-IT-guy-at-my-company) my laptop is now home safe and sound, and I might actually be able to have time to sit and blog every now and then :)

It's good to be back!

Hopefully, more to come soon... We have LOTS to catch up on!!!

Happy 2nd Birthday Dax!

We had a little pre-party birthday cake at our house today. I think we can safely say the boys enjoyed it!

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