Twinkle Little Star

I know, I'm a Terrible, Horrible, No-Good, Very Bad Blogger

It's just that I've been.....

Cleaning.

Don't you wish it was something more exciting? Me, too. But what can you blog about when your day is filled with antibacterial soap and chorhexidine baths? Yeah, not much.

So, we cleaned and we shoved Bactroban up our noses and we decontaminated ourselves and D got up early (3:30 am) on Tuesday to go to the hospital and have surgery. You know, that surgery that was supposed to be the end of the whole Infusion Pump Debacle of '08? And he went to the hospital and checked into pre-op and they got an IV started and the OR was booked for 4 hours and three surgeons were scheduled (and a fourth infectious disease dude to consult on hand) and....

He was home by noon. No pump. No surgery, No finish line. He has a bladder infection. Two more weeks of IV antibiotics. And then they schedule the surgery again and we do all of the above cleaning, decontaminating and antibiotic-ing again.

What is most frustrating, of course, is that this is another thing that is more medical administrative related than health related. It has been about a month since D was off the last round of antibiotics. There was a three or four week window of opportunity where they could have gone in there when he was infection free, but they couldn't get their asses together to schedule it then. D told them back then that another infection would come, and if they didn't do things quick, they would miss the window. They missed the window.

Not only that, the UA that showed D's UTI was done the prior Wednesday. D didn't find out till Monday that he had a bladder infection. He had an appointment with the pain management surgery that day, and told him about it. He also told the neurosurgeon and faxed the pathology report to infectious disease. No one did anything. Then on Tuesday, they made us all get ready and get up early and all that and drag him there and then they finally got it together and were like, "oh, I guess you have a bladder infection." Surgery canceled.

Then one of the doctors said something that D doesn't care about but pisses me the fuck off. He said that they were really embarrassed and had mud on their faces about it because they had scheduled the OR and the OR staff and had messed up everyone's schedule at the hospital.

Yeah. Well, Waaah, fucking, waaaah. I'm sorry you'll be a little embarrassed at your next staff meeting and maybe get tsk, tsked by your OR administrator or whoever. But D has to go for at LEAST TWO MORE WEEKS with a PICC line (a new one because they took the old one out last time), spasms, pain, infection, antibiotics, home health scheduling fiascos, an inability to drive, and the whole taking so many extra drugs orally that he is spaced out half the time. And I have to go for two more weeks decontaminating everyone and having my skin dry out and fall off from chlorhexidine and having my nose run from batraban and, well, we are just a LEEEEETLE inconvenienced by this.

Not to mention that I'm planning (still) to go to that family retreat with the kids over the fourth of July and this surgery will put us right about there. Not to mention that no one wants to have surgery or be in the hospital the first weeks of July because that is when all the new people and interns start. Not to mention that they said the pump would have to out for two months and now we've gone over six. But, that's okay. I'm sure sorry that you had to cancel your OR today. Hell, maybe now everyone can take an nice extra long lunch hour.

</rant>

Not much else is happening, here. I do owe some of you some emails and I do have some posts written in my head. So I'll try to get back into the swing of things. I have another little "project" that I'm working on for August, but best estimates are that it has about a 30% success rate. So if that pans out, I'll let you know. I should know in the next couple of weeks.

The only other update I have is on the ever-so-exciting Potty training front. I think I previously reported that Naim is all the way daytime potty trained. And with few exceptions that remains successful. And Aaron? Well I will say we have made definite progress. He is at the stage where if I leave him naked, he goes in the potty chair pretty much 100% of the time. Put any clothes on him and it all goes to crap. But, Naim was here once, too and we got through it. I figure if they do the naked pottying long enough, those muscle memory habits will kick in eventually and they will think about it when they are clothed. Right? Right? He IS making progress.

And the only other thing I have to say about that is that I've had so many discussions with those boys about penises that I could really go with never seeing another penis for as long as I live. (At least the three-year-old variety. Ah-hem.) Gems from today:

"Mama? Do you have a scrotum?"

"Mama, when I get bigger will my penis go away like yours did?"
"No, your penis will just get bigger, too."
"NOOOOO! I don't WANT a bigger penis! I want a LITTLE penis!"

When sitting in stroller riding down the street, whips out penis for no discernable reason.
"Naim, you need to put your penis away. That's private and we don't do that outside."
"Okay, I'll wait till we go in the store."

....PLEEEEEAAAAASE make it stop! When does it stop? At four? At four does it stop? Tell me they will be all potty trained and not penis obsessed by four. Please?!?

Disability Awareness

*Scene: Naim and Aaron looking out the front window, waiting for our friend, K, to arrive. Light rail train goes by.

A: The train! The Train! Is she coming, now, mama? Is she coming?

Me: No, she's not coming on the train, she's coming in her car.

N: She drive her car?

Me: Yes, she is driving her car here.

N: K need a car, and Grampa Fred need a car, and J need a car.

A: (solemnly, in serious explanation tone) Yeah. They need a car to move. They have to have a car to move.

N: (Nods empathetically) Yeah. They can't ride the bu-US, or ride the tra-AIN, or walk on the sideWALK like we can.

A: (also empathetic) Yeah. They do it a different way.

N: Yeah. They need to drive their car. Then they can't go to the playground on the way to daddy's house.

*Please excuse my complete inability to accurately recreate toddler talk. Trust me, it was cuter when they said it.

The Naim Tapes

I've been playing around with video. I interviewed both kids using my little digital camera that also does about 5 or so minutes of video. Now I'm trying out vimeo, which apparently only lets you upload a certain amount of video a week. This one of Naim was the only one I was able to upload. I'll have to show you Aaron's next week.

Believe it or not, Naim's speech has improved dramatically in the last 3 or 4 months.

Naim 2/29/08 from Lisa Ferris on Vimeo.

Christmas? What the...?

Christmas is catching me decidedly off-guard this year. Between hospitalizations, eye emergencies, belated Thanksgivings, Birthdays, and bacterial infections requiring daily IM injections (D), I just haven't been able to think about it and it is upon me and meh.

I haven't been able to shop much because for the last two weeks I've been heavily working on potty training Naim. I'd write the requisite post about it but I just...can't. Its not that it isn't going so well...there has been marked improvement...but it is a long road and very tiring. He is 100% potty-trained if I leave him in the house naked. He goes on his own, I don't even have to remind him. Put underpants on him and he drops to 75%. With pants as well it drops to 50%. Take him out of the house and it drops to 0% (except at Dad's house where we have a potty chair.) He is deathly afraid of the toilet. Its not the flushing, he likes to flush. It is the sitting on it that freaks him out. I've tried stools, little potty seats, he is freaked by it. Not sure how to jump that hurdle. (Ironically, Aaron has no problem sitting on the toilet but refuses to go.) He understands accidents now and doesn't like having them, so if we are out and he has to go, a crisis erupts. It makes it hard to go out. I've even resorted to pull-ups when we are out. The saddest thing about all this? When I figure this out and am done with him? I have a whole 'nother kid to do. Depressing.

So, I've done almost zilch Christmas Shopping. Not that I really wanted to get much stuff for them. I'm up to my neck in toys in a very small house. They don't need anything. I decided to get them one gift, a big gift that I know they are going to be ecstatic over. It is a trundle train set that can slide under their bed.

(low sitting train table on casters with tracks, bridges and train set stuff on it.)

Other than that and a few small stocking stuffers, I wasn't going to get them anything else. I know that D got them some model space shuttles (they are space shuttle/rocket NUTS right now) and I think some kind of little dinosaur playset. (Cute as hell to see kids this age talking about Tri-SAR-it-TOPS and ty-RONNA-saurus RECK-s). So thought that was done, but then we have just received a very generous slew of donations in the past couple of weeks. Its a bit weird, we didn't ever ask for anything and these aren't given to us like presents, but people have been dropping by with small used toys and puzzles. So now I think they also are getting a few puzzles, a few books, and a couple of games (well, those I actually got off freecycle).

And then, the worst (yet very generous) toy came. It is big, it is plastic, the kids will LOVE it, and worst of all, it isn't assembled.

When I opened the box I was confronted with sheet after sheet of plastic shit that needs to be snapped apart and put together with screws. I can't even understand the directions and the parts are all labeled within the molded plastic itself and I can't see them unless I kind of Braille my way through it. I am totally dreading the prospect. I'm thinking of giving it up, but then the person who gave it to us will come over and its not like its a toy you can HIDE easily, so its absence will be noticed. I might let them play with it for a few months and then donate it somewhere. There just really isn't room for it. I'm not sure if this picture is it, but it is like this:

(smallish toy kitchen)

My other problem is D. I have NOTHING for him. Nothing. Whenever I think about it my mind draws a complete blank. I've had no time to shop and when I shop online, he is too hard to shop for. A lot of things I think of getting him need to be checked out for 'accessibility.' Will he be able to push the buttons on that? Will these pants fit over his prosthetic? Will this work on his computer? etc. He is really someone you have to shop for with him there to try things out. Otherwise, I'm going to have to join the Fleece Pullover Club(tm). The FPC(tm) are his family members who give him a fleece pullover for every. single. birthday and Christmas. They actually gave me quite a few as well back when they got me anything. Its not that he is against fleece pullovers, but if you are getting two or three a year, you end up having thousands. We always joked before we went to Christmas stuff, "Well, lets go get our fleece pullovers!" And on the way home, "I'm glad I got another black/gray/navy fleece pullover to add to my extensive black/gray/navy fleece pullover collection." Its not that we are seriously mad about the FPC(tm) its just become a running joke. But it is an easy choice for him. Shirts fit him pretty standard, unlike pants. He's always cold. Just grab an XL fleece thing and be done with it. I'm getting so desperate that I might have to sink to the level of the FPC(tm).

Or maybe I'll just hand him a wad of cash. I dunno. Any ideas?

I pulled out the tree last week, and I'm finding that I really hate doing it. My sister always complained about having a tree and so for years we never had one. At my mom's last Christmas, I insisted that we go out and get a tree. And I remember my dad saying in the Christmas Tree store (we don't do live trees), "We will always remember this as the time we bought your mom her last Christmas Tree." And he was right. I have that tree now, and that is what it always reminds me of. I feel like I can't get rid of it but yet I feel like I don't really want it, either.

Besides, it is too big for our living room, the automatic lights on it don't work anymore after we had a power outage last year. It is a bitch to put together and not that fun to do alone. I have only a few ornaments for it. I'm just kind of meh about it. I don't mind the stockings and a few other Christmas knick knacks. I'm contemplating perhaps just getting a few more decorations like that (wreath, etc.) next year and not having a tree. But D thinks this is sacrilege. "The kids need a tree."

So I'm trying to find a compromise. We have a pretty blue spruce in our backyard. What if we had a solstice tree? We can put outdoor lights on it and decorate it with edibles (bird seed pine cones, cranberry garland, etc.) for the animals? That is what the whole tree tradition started as anyway. It has nothing to do with Christmas. It was to honor the animals struggle through the darkest part of winter as the night shifted away from the darkness into daylight. Or maybe just a small tree indoors. I don't know. But I'm thinking after Christmas I might give this tree away to Freecycle. I still have a mom attachment to it, so I want it to go to a good home. I know, its a bit silly.

But I'm starting to get a little tiny bit psyched. Friday, weather permitting, I'm meeting a friend with a little girl my kid's age and we are going to zoo lights. Its where you ride the zoo train and see the billion lights they have decorated the zoo with. The kids will love that...and I'll be cold. So it is good to have another mom to be cold with.

Christmas eve we will do our church's evening service. We've done it every year and its about the most Christmas-y thing we do. There is no nursery care, so the kids stay with us. They do try to fill it with kid friendly stuff. Lots of music, bells, candles, little Christmas stories and skits. The kids have done well the last two years we've gone, so hopefully it will be okay.

We will probably come home and have nice dinner of fillet minion. I get a gift every year from one of my mother's friends. It is kind of a secret. For the last three Decembers, I've gotten a good sized shipment of Omaha Steaks . They felt sad not being able to send my mom gift they sent her after she died, so now they send it to me (well, it is really technically for Aaron and Naim, so they will grow into strong, Nebraska beef fed boys. Heh. But they don't like the steaks, but will eat the burgers). The most fun thing about it is that it comes packed in dry ice, and this year we had fun making "clouds" in my kitchen with the dry ice under water in the sink. The kids thought that was the coolest thing evah. So, we've had steaks for Christmas eve now, and that has become sort of a tradition. Maybe someday the kids will stop being finicky enough to join us, but usually I just make them a hamburger or hot dog while D and I eat the steaks. Its about the only time I eat that much red meat all year.

This year on Christmas, after unwrapping presents in the morning, we are going to our church's refuge Christmas dinner. Its just a potluck for anyone who doesn't have better plans. It is just kind of sad and boring and anticlimactic to sit around by ourselves on Christmas. And I want the kids to know other adults and have good and special memories of other adults on Christmas. Otherwise, after presents, it is not too different than an ordinary day. So we are going to try this, and the woman who organizes it has really gone out of her way to encourage us to come. It just seems to me that our kids don't have any extended family here, really, and there are other adults (many older folks) who are lonely because they don't have any grandkids to spend the holidays with...why not get together with them? Besides, then I only have to make one dish and not a whole dinner to clean up after. And I'm all for that.

Sometime here we need to make sugar cookies or something, too. That is a tradition I'm stealing from my MIL (not that 48 billion other people don't bake for the holidays as well). But that is one thing I always enjoyed about spending holidays with D's family. That they had cooking/baking traditions. So I'm trying to incorporate some of that. Naim absolutely positively LOVES to cook. Aaron likes it, too. But Naim is always running in wanting to help me cook whenever I am in the kitchen. And it is such a teachable experience. You do math, reading, fine motor skills, sequencing, sensory/texture stuff, etc. Cooking has been a real Naim and Mom thing where we get to really spend time talking and doing stuff together. Its something I would like to make sure we always do at Christmas.

So that's the plan. Except for D's present and the potty training, I think I've managed to make it enjoyable, traditional, and not too pressure filled. Hope yours is as well!

Okay, I so totally used to roll my eyes at moms who blogged this, but....

...after a year of talking about it, reading books about it, watching annoying Elmo DVDs about it, and even watching anatomically correct dolls perform it...

...and, after months of being scared of said anatomically correct doll, sitting on the potty chair, and flushing...

NAIM PEED IN THE POTTY CHAIR!!!!!

Okay, I know it is just one time and we have a ways to go (and a whole 'nother kid to go who couldn't give a flying fart about it and is perfectly content to sit in his own shit lest I break him away from his Tonka Fire Engine). But this is what I have learned:

1. Don't fight the kid. My dad has been pressuring me to pressure the kids about the whole PT business since they were, oh, neonates? And I have held fast to my rule that they will do what they are going to do when they are ready to do it. I refused to force Naim to sit on the toilet when he would have screamed his hair-raising high-pitched scree of death while sprawled out stiff like a cat being dunked in the sink. I let it go. I waited. And waited. And just merely suggested that he perhaps might someday want to entertain the possibility of the additional option of maybe finding an alternative (and not so messy! Naim hates messy!)  way in which he might try eliminating and evacuating that didn't require sitting in it afterwords. And he told me in no uncertain terms that he didn't think that was any kind of rational logical idea for him to even consider. And then just one day, he changed his mind. And after two weeks of him voluntarily trying, we finally have our first success. I'm all about child-centered, unschooly learning and I love it when I am proven right. I wait anxiously for Aaron to prove me right. Hopefully sooner rather than later.
2. Never judge other mothers for what they blog about. In fact, never judge other mothers about anything. Its all good. We need to be unite-rs not dividers, and pink, fuzzy teddybears and world's best mom coffee mugs and mommy and me classes and gymboree bonus bucks and cum ba ya.
3. That said, If you all let me do this one more time when Aaron gets around to impressing me with his peeing prowess, I promise not to blog about every time either of my kids takes a piss.

I Have Children!

Just in case you'd forgotten that I have kids that say and do fun things, because I have been turning this blog into the Summer of Bitchin' n Moanin'. I thought it is about time to write about them.

Aaron sitting in the outdoor seating area at Noodles, with really short hair.

My dad finally talked me into getting the kids' haircuts by a real person who knows how to cut hair. So these two pics of them are right after their haircuts. It cost $7 each, they cried the whole time (less than ten minutes is all it took), and then we took them to "Noodles" afterwords to help turn their day around. They really like the mac and cheese they have there, so for them it is a treat.

Aaron's language is ab fab. We have whole conversations now. He is starting to be able to talk about what happened in the recent past, instead of just commenting on the present. One day he wanted me to draw a truck on the magnadoodle. Then he didn't like the semi I drew. I was supposed to draw a truck like Grampa Bob has. So I start over and draw a pickup truck. Then he wants me to draw a tree in the back. Two WEEKS before this, Grampa Bob drove by us as we were walking by the park. He pulled over and talked to us a minute and he had a big tree limb in the truck that had fallen in a storm or something. So, I had to draw a tree in the truck. And then he wanted Grampa in the truck. And then he wanted me to color it GREEN! Mama! Which is the accurate color, but impossible to do on a magnadoodle. So I just shaded it in and he was satisfied.

Then we had a babysitter the other night. When I got home I asked them what they did with the babysitter and I got no response. Then, the next day out of nowhere he says, "Mama, Audry played with cars and trucks with Aaron last night." Woah! "Last Night?" Thats a whole abstract time-y concept type thing. So now I can start to know what it is that they do all those hours in childcare.

Aaron's imagination is crazy wild. He has been carrying around the plastic part of the mobile from the pack n plays that the actual mobile hangs on. He takes it everywhere because it is his dinosaur. He took two plastic bibs today and flew them around the house and said they were the wings of his bird. We have the two pack and play cribs right next to each other with about a foot of space between them. He gets in between them with an arm in each one and says he is a butterfly. He lines up books or boxes or whatever he can find to make all sorts of trains. I can just put my feet up on an ottoman with several inches in between it and me and I turn into everything from a bridge to a tunnel to a tent to a house to a boat. He has elaborate stories that go along with all of his things that he constructs. I can't follow them half the time, but they are funny to listen to.

He has been driving me nuts doing the "What's that one?" thing all day long. All that vocabulary building that requires me to name everything. And he gets really technical about it. He says, "What's that one?" while pointing to a tonka truck and I say it is a truck. WRONG! He meant, "What is that thing that sticks up out of the cab called ?" or "What is the little screw that holds the dump truck to the frame called?" Well, kid? I don't have the slightest clue what that is. I start making stuff up. "Its a gizmo that holds the thingy to the whatchamacallit." Once he was driving me nuts by asking me what every little itty bitty part on the stroller. He pointed to some little part or something and "What's That One-ed" it and I said, "Aaron, you're making my head hurt." And so he pointed to it and said, "It's the making my head hurt." And so it is.

Aaron likes to sit and read and do worksheets and color. He likes to draw on the magnadoodle. He has a name for everyone of his scribbles. Its a bird! Its a truck! He actually does draw a pretty good planet. It has rings like Saturn. He likes to tell me all the time, even during broad daylight, that he sees the sun, the moon, the stars and the planets. "Look, Mama! There's a PLA-NET! RIGHT THERE!" Okay, sure, if you say so. Aaron is word man.

People have asked me if they have any sort of reaction to our disabilities yet. I think Aaron is starting to notice things a little. For me, I think he just is starting to realize that he is smarter than me. He will hear my dad coming home when the garage door opens. Something I can't hear. And he will say, "Grampa Fred!" And I will say, "Grampa Fred went bye-bye. He'll be back later." And he will just look at me like I'm a moron and say, "Grampa Fred is in the garage, mama!" I just have figured out that the kid is never wrong about anything and go with it.

One day, D and I took them to a park and they were climbing on these big cement risers while D was parked under a tree below. Finally, I had to tell them to come down and Aaron didn't want to go. I said, "we have to go down and see daddy now. Remember, we have to stay together." Stay Together is our gospel rule when we are out. Aaron said, "Daddy come up here. Daddy stay together up here." And I told him that he can't come up here because he can't climb the steps in his wheelchair so we have to go down to where he is. He gave me this long look like he was deep in thought about that. And then he said, "Let's go see Daddy and Nyman (Naim)." Problem solved.

Naim after his haircut at Noodles restaurant.

I don't know if Naim really notices disability that much yet. If he does, it is only that he thinks all the disability accouterments are his personal playthings and families that don't have parents who are disabled must be awfully boring. Naim loves to ride on D's wheelchair, loves to push the little horn button it has, loves to ride up and down in the tilt-n-space. He likes to walk around with my cane, and when I use it he likes to walk in front of me and hold it underneath where I'm holding it and tap along with me. He likes my talking calculator and abacus and the Braille in the "Twin Vision" books. He always wants to push the buttons on the van that make the ramp go up and down. Then at home when he plays with his little fisher price school bus, he has all the people get on and off using the back door 'ramp'. He opens and closes it very slowly like D's van ramp does. He has the van sound effects down for that as well. On my mornings when we go over and help D, he always wants to be in charge of the foot stuff. D has a boot that protects the bandage on his real foot that Naim likes to give him and fasten the velcro on, and then he likes to bring D his prosthetic foot. I'm going to have to take a picture of that sometime. The prosthetic foot goes up to D's knee, so it is almost as tall as Naim. And Naim loves to carry around "daddy's foooot". It is kind of hilarious. He also likes to show D where his feet go when he is transferring, by pointing out where they go or trying to lift them. Sometimes both kids try to do things like dad does, with closed fists, such as weaving their fork between their fingers. Naim also has learned to play ball with D by handing him the ball instead of throwing it, and then walking back so D can throw the ball to him. But he doesn't do that with anyone else. So, being a kid with disabled parents just means extra toys for Naim.

Naim is such a character. He is always making silly faces and noises. He will sometimes just grin at you like you and he are in on some private joke (so private that only he gets it.) He sings ALL THE TIME. He sings kid songs like "Clementine," and "Freare Jacques" and "Mary had a Little Lamb." He sings classical like Brahm's Lullaby, or Mozart, or Beethoven. He sings songs from "Cats" (Je-wic-ah cats and mister swofertees), and he sings his own made up things as he goes about the day. His own masterpieces like, "Time to get my Sooos on" and "More Juice, Please!" He always seems to have a beat in his head. He is always "drumming" with his hands or with a stick. I've used music a lot to work on his speech. Which is improving slowly but surely. There are a lot more clear words, but he will still tell you an entire story that you don't understand. He especially likes to talk on the phone and tell his entire babble stories to the poor victim on the other end.

Naim has a lot of empathy for others. Whether it is Aaron crying or the cats or the dog. He will come tell me, "Aaron's crying," and take me by the hand to where Aaron is. He also understands a bit about Scrapper being sick. He is very gentle with the animals most of the time. He doesn't like it when Abbey barks or is stuck in her cage when we come home. We have to let her out immediately. Naim also keeps me apprised of the running record of his own owies. Making sure that I have inventoried (by kissing) each one. Naim always gives people the evil eye at first, but once he gets to know them, he loosens up and becomes a total character.

Naim is still very orderly, which is sometimes nice and sometimes a problem. Currently his big obsession is straightening the TV I have in my room. It swivels, and I always have it turned to one side. Every day Naim turns it back to straighten it out. He sometimes gets upset if I'm watching it and it is turned, he turns it back to the point where I can't see it. (Sigh.) Sometimes I will walk into a room and notice that all the items on the coffee table are in a row and think, That's Naim. He is very into counting everything right now as well. He has pretty good 1:1 correspondence and is pretty darn accurate up to 20. He counts anything and everything. His cereal, the lights that are on and the lights that are off, the spokes in the back of his chair, anything that can be counted, he counts.

Having twins really shows you how DNA comes into play. They are each their own kid. I hear people going off and analyzing everything they do with just one kid as if it is make or break. Sure, it matters, but I think you only affect probably about 50% of what your kid turns out to be. But it is sure fun watching that unfold.

Various Updates on Things...

The Party

The kid party went well. Every one except one person that I invited came. I am a nervous host when people come to my house. I just want people to walk in and plop down on my couch and if they're hungry, go get themselves a snack and if they're thirsty, head for the fridge and get a drink. I love it when things get to that point where people can just make themselves at home and you aren't self conscious about your cooking or your dirty rug or whatever. But I don't like the parts where you have to structure things more when people don't know you well. I wish I could get to point B without having to do point A, but that's the way it goes, so I have been forcing myself to entertain more.

But a kid party is pretty easy and laid back by nature, and it was fun. The first hour or so was a bit nerve-wracking because both my kids decided to be traumatized by the onslaught of kids that descended upon their stuff. So, I was trying to keep track of everything while I had Aaron permanently affixed to my arm, Naim sulking and crying with D and wanting me, and trying to make sure everyone was comfortable. At one point, I had to get food for D, Aaron, and Naim who were demanding to eat and sit in their high chairs, and for about 15 minutes there I had no clue what the other folks were doing. They seemed to just make their way okay, so I was glad. I set up our coffee table for the little kids, but I only had four little chairs. So I just figured that I would hold Aaron on my lap and Naim never sits anyway. But instead, they wanted high chairs across the room. So be it. But I have some cute pictures of the kids eating at the table and my kids aren't even there.

This is a pic of my coffee table with a baby einstein table cloth and hats and balloons on it. It has four little kid chairs around it. I took it early in the morning before anyone came.

Things got a lot more fun, for me anyway, when we all headed out to the back yard. My kids seemed to relax out there. I think they are used to playing with other kids outside, but we really haven't had that many (any?) kids in the house except for a couple of babies who were too young to intimidate them, I guess. All the kids outside playing with the bubbles were really cute, so that was fun. I even got to talk to a few of the adults, which I figured I wouldn't really be able to do with that many people and kids. I tell D that he needs to handle the socializing. I'll just smile and nod and then he can give me a debriefing when its over. Which he did. I found out from him that one of the moms lives just a few blocks from us, so that was cool. I walk by her place probably once a week or so on the way to the store.

So I would post pics but they all have the other kids in them and I don't post other kids without permission and I forgot to ask and I can't mosaic them anyways. I think I like this "half-birthday" thing. I like that I can have it in the summer and be flexible about the date. I like that it takes the pressure and expectation off as far as gifts are concerned. The whole thing cost me around, oh, 75 bucks. Most of that  was food and we had at least a days worth of leftovers for all of us afterwords. If I made more of the food myself, I could even cut the price down even more, but I got store-bought cake and cupcakes. When comparing that to the amount some others spend on birthday parties, I don't think it is so bad. So, it might be a tradition worth keeping.

This is one of the few pics with no other kids in it. It is me sitting on a patio chair with Aaron on my lap. You know? I've lost over thirty pounds on WW but it sure doesn't look it in this picture. But Aaron is cute, though.

UU GA

One of you asked if I got to go to the Unitarian Universalist General Assembly that was held in Portland last week. In a word, No. And D and I are a bit pissed about it.

I love a lot of things about UU's, but they have a knack of making you not feel welcome if your aren't the typical white, educated, middle class, bohemian type. The worse part about that is that they think they do accept everyone and they totally don't and don't even get that they don't.

I have never been to a religious general assembly, so I have no experience and did not know what to expect. But it was in my hometown and what other opportunity was I ever going to have to go? Also, a UU minister woman I was corresponding with and wanted to meet with was there and had a panel discussion I would have liked to heard, along with many others that D and I were interested in, and I lost that opportunity as well.

A list of why we didn't go:

1. The accessibility information was vague (in a 'maybe, sorta, possibly we can kinda provide some accomodations' way) and indicated that you had to pay at least part of your accommodations. D would have been fine as he didn't need a hotel room and the convention center is accessible. I however, would have needed some stuff in order to get anything out of the sessions. I would have needed an amplification system of some kind, a way to read the written materials, possibly help navigating the place, and possibly a need to talk to presenters beforehand to explain the ropes. I could not pay for these, for one. And secondly, I couldn't even request them because the accommodations request form was in pdf and I can't fill out a form like that by myself.
2. Furthermore, in order to get info on what accommodations you might need like knowing which events you want to attend and when, you would have needed to see a program guide before the deadline for accommodations. It was not made available till after the deadline for accommodations AND after the deadline to register for early bird rates.
3. The program guide, when available, was also in badly formed pdf. You can read some pdf with a screen reader, but not a 128 page document that has no tabs or formatting or bookmarks. D even had trouble with it because he uses as little keystrokes as possible on the computer and the thing required a lot of navigating.
4. We had a child care issue, of course. And I was trying to decide if I could get a babysitter and when I could do the most things in the least amount of time. THEN, I find out that they provide childcare (at a cost I am unaware of) but that you had to register your children before this all magic deadline that they set for everything prior to putting out the information in a barely accessible format that told you you had to register prior.
5. Finally, we decided that we would go down for just my friend's presentation and maybe look around the exhibit hall a little. We would take the kids and lots of stuff for them to play with, and D would watch them out in the hall nearby while I went to the presentation. Then, D wanted to go the next day on his own to some other events. Well, we searched and searched for the price of going for a day, thinking it would be around $20-30 or so, and found out it was $115 dollars A DAY. That would have been $230 for both of us to go to one 45 minute presentation and maybe look around at some t-shirts and bumper stickers? And would the kids be free? We didn't even know. It would have taken us an hour to get there on the train and we didn't even know if we could get our kids in...OR if I would be able to hear the presentation. At that price, it was SO not worth it.

Basically, I guess they only wanted rich, able-bodied people with no kids there. They probably didn't do this intentionally, but that is sure how it felt. I don't know what other churches do for General Assemblies or whatever, but this is what I think of when  I think of this:

My father was raised Jehovah's Witness and came from a poor family with seven kids. They still managed a trip to New York for the big JW conferences. How? Because they were FREE. I guess I thought it would be something not quite free, but on the order of not very much money.

Also, I think of one time when D and I went out to a little tiny church in the backwoods of Kansas in God Knows Where County because D had a high school friend who worked there. This church was the size of the Little House on the Prairie Church and had maybe 50 people in attendance. There were several steps up to the front door. This church installed an elevator. They also had large print programs, and informed me that if I needed it they would provide Braille and sign interpreting for free, with only ONE WEEK's advance notice. Okay, you guys know that churches aren't mandated under the ADA to do ANYTHING for the disabled, right? Anything they do is voluntary. This Podunk church could do this and the whole National General Assembly of a upper middle class constituency can't knock out a few accommodations and a decent conference fee? Okay. Whatever.

So we missed it. I missed my buddy's presentation, which ironically was about the "real lives of the disabled" or something like that. I'm just conflicted about UUism. They do some damned good things and have so much potential, but they have a weird thing about disabled, racial minorities, and working class folks. They accept seem to accept us in a way that gives them points for doing charity work for us, but not in a way that includes us as equals. I talked to a UU minister recently about this, and she totally got what I was saying, which was such a relief. She said that the UU's on a national level, are just now starting to admit that they are a bunch of spoilt, rich, overeducated white folks who don't have a clue. The door is opening a crack for some real discourse on this, but they just aren't quite there, yet. Maybe there is some hope, we shall see.

Now don't email me and tell me you are a UU and you aren't a rich, spoilt, overeducated white folk. I realize that that is a gross over-generalization and there are differences among and within congregations. Even within my own little church. I had that awful experience with the minister that made me feel like an alien and told me I shouldn't get my kids dedicated there if I hated the church so much, when ALL I wanted to do was talk about how the church could do a few easy things to give us more access to its services--like remembering to unlock the doors to the accessible entrances and such. Then the next minister totally got me, was more than willing to work on these issues, and could see the problem for herself. Also, this year I have moved from teaching Sunday school to being on the religious education committee. I've only gone to one meeting, but I can already tell that this is a special group. I might have chucked this whole church thing if it wasn't for the RE staff always bending over backwards to help me participate. They make me feel like they want me there and that I am important and that I contribute. And that even though they have to do some probably inconvenient things to help me participate, they feel they are worth it to have me there. So, yes, pockets of real commitment and effort on that first "worth and dignity of every person" principle. But over all problems. I don't know, that might be the way it works in every church.

Naim's Speech

Naim is getting some mad speech and language skillz. I have worked with him and worked with him and at some point during the last couple of months, he has turned a corner. There is still a lot of muddled sentences that I don't understand, and his speech is not near as clear as Aaron's, but he is saying sentences, he is repeating things that I say, he is talking as well as signing. I think he is starting to be more confident with talking. He tells me little stories, he tells me what he wants and what he is doing. He is a language fool. I know that I understand him better than a stranger would and he still has a ways to go to catch up, but the improvement over the last few weeks has been remarkable.

The two main things I did that I think really helped were to use music and to get Aaron away from me for a while. Naim really has a thing for music. He plays imaginary piano, he sings songs and keeps a beat. He can change his pitch and speed if you ask him, too. He hums and sings songs all the time. I really see potential for him to get involved in music in some way later on down the line. Whether it be an instrument or singing or dance or composition or something, I think he is very musical. So we used songs to practice phonemes and to slow down his cadence so that he concentrates more on each sound instead of running them all together. Then we would speed up the song so fast that our words blended together. I think when he saw how I did this, and that if I sang too fast, you couldn't understand me anymore, and then when I sang slow the same song, you could, I think he started to realize that he needs to slow down and concentrate on the sounds he is making.

He might be a bit like me. I have have discovered through observation over the years, that I think at an incredibly fast rate of speed. Well, except for math, then everything slows down to a grinding halt. But I think faster than I can get it out and sometimes that makes my conversation not particularly graceful. People ask me how I can write so much and how long does it take me. Um, not long at all. I cannot type near as fast as I think-write. A long post here might take 45 minutes to an hour. If I bothered to proofread, I would clean it up more than it is and I would probably tack on another half-hour to that. D gets irritated with me because I present a problem to him and find 5 solutions in the time it took me to explain the problem and he doesn't even have time to digest it and make a decision. I'm all the time very impatient with him and am all, "speed it up, kid! Coke or Sprite? HOW LONG CAN IT POSSIBLY TAKE YOU TO CONSIDER THE OPTIONS!!! GEEZ! YOU'RE GETTING COKE!" I am very impatient. But he is very slow to make decisions sometimes.

Anyway, back to Naim. My second thing I have decided to do is to be more assertive with Aaron that I need to spend time with Naim. Aaron is a mom hog. And he wants me all the time. And I feel bad telling him to get lost. But I just had to commit to the reality that I am cheating Naim if I can't say no to Aaron. Naim will rarely "fight for me." If Aaron is hogging me, Naim just goes off and does his own thing. And even when they are together with me, Aaron does all the talking and answers all the questions. So, I had to commit to making Aaron go away and do something else and just set aside time every day to just sit there and talk with Naim about whatever he is doing. This caused major drama for Aaron at first, but he is getting better at accepting it. And now when I ask Naim a question, I'll say, "This question is for NAIM to answer." If Aaron answers it, I ignore and ask Naim again until he answers it. Aaron is starting to get it. He will even say, "Naim answer the question." So, Naim has improved a lot.

Cute Aaron Conversation:

Me: What is your name?

A: I don't know.

Me: You don't know your name? Is it Naim?

A: No

Is it Orion?

No

Is it Julie?

No.

Is it Scrapper?

No.

Is it Aaron?

No.

Your name is NO?

No! No! No!

Well, it's nice to meet you, No! No! No! Do you know what my name is?

Your name is Yes! Yes! Yes!, mama.

Your turn is your turn and my turn is mine/and we use our thank yous all of the time.

Maybe it's because last week was so horrible with all the barfing and the pooping of the liquid, but this week with the kids was really good. I had fun!

Update on all of us sickies: We all had what was most likely rotavirus. I got terribly, horribly barfing, dehydrated sick last Wednesday. I actually called D and said he had to get over and spot me in case I lost consciousness. This was probably an exaggerated fear, I wasn't really in danger of passing out. It's just that the last time I had a really bad stomach flu, which was years ago, I totally passed out on the bathroom floor. The next thing I remember was waking up and seeing the bottom of my then boyfriend's chin and the sky as he was carrying me through the parking lot to the ER. I'm such a sexy date sometimes. This was all probably exacerbated by the fact that I had just gotten out of the hospital a few days earlier with a kidney surgery and a stent holding my ureter open had fallen into my bladder and caused an infection. But since then, every time I throw up I think I'm going to pass out any second of dehydration. I'm weird that way. I make these asinine associations with things that have nothing to do with each other and then can't shake them.

So anyway, D spotted me while I barfed. I was okay within 24 hours, but then he got sick. Aaron was sick on and off throughout the week. D took a few days to get well. I'm telling you all this because of the most amazing thing: After being surrounded by all our puke and whatever else for a week...Naim never got sick. Not even close. He is Amazingly Healthy Superhero Man. That makes me very happy, though, because I don't think I could have handled one more puke mess.

This week it was just me and the kids most of the time all week. And for the first time in weeks, we were all healthy at the same time. We had spent several days stuck in the house together and finally were able to get out. I went back to the gym after missing a week. This gave the kids time away from me and time out of the house. I could really tell that they needed that. They were just happy and fun almost entirely from morning till night. We did lots of stuff, coloring and little games and play-doh and some little sticker workbooks that they like. We "cooked" together. I had them making jello and apple juice (from frozen) and macaroni and cheese and simple stuff like that. I always try to sneak some vegetables in the mac and cheese. And I just put some frozen mixed veggies in this batch--itty, bitty carrots and peas and corn--and wouldn't you know that Aaron ate around every single vegetable. He is still incredibly picky, but Naim has been on an eating spree and eats everything I put in front of him. I think he is growing bigger than Aaron now.

For the first time alone without my dad, I took them for some walks around the neighborhood without the stroller. I guess I have taken them around my block before by myself, but this time we walked to D's house one day and to a playground today. They both hold on to one of my hands. It has worked okay so far. They do a good job.

This may sound weird but walking with them like this reminds me of walking with my guide dog. Part of it is just the constant presence of having a living thing attached to you all the time. That gentle pull on your left hand is just something that gets built into your muscle memory after you do it for eleven years. And the feel of the pattern of their footsteps. I walked about one step for my dog's two, and it is about the same pace with the kids, just slower. And part of it is that we make sure we stop and curbs and stuff, which my guide dog always did. And then pause when we go up the opposite curb. Every once in a while a kid will refuse to go my direction. I use a technique I used with my dog when she would stall around (usually not while working). I would just keep walking and she would get uncomfortable being left behind and catch up after a minute. This makes me a little nervous to do with the kids. My neighborhood has nearly zero traffic during the day and I don't go more than probably 8 feet until they want to catch up. I just stand there and wait and finally they come when they see I'm not going to give in. It is about a billion times harder to get twins to go the same direction or to catch one if they decide to go opposite directions. So just waiting and not turning around and fetch the other one makes the one you've got with you stay on track as well. It is something we are still working on, so we are a long way from going stroller-less in the world outside my little neighborhood. But they did surprisingly well this week. And it was really nice out, so we had some nice walks.

Yesterday, we went to our little art class at the children's museum. On Tuesdays it is clay and "sculpture" and on Thursdays it is painting. It is a drop in class, so my goal is to go a couple of times a month. We have to take the train and get there by ten. The whole thing from my house to the front door of the museum takes about 45 minutes. But everything on public transportation takes that long, so that really isn't bad at all. The class is a bit like a preschool. They have a little circle time, then they have art stations that they rotate through, then they wash hands and go back to the circle for a snack and a book. The book is usually something about art, but I can never hear/see it so I don't know what exactly. Then they go next door and have a little music class. Then I usually let them play in the museum for a half hour or so, and then we head home. It is a nice little day for them, they really like it.

It is a lot of work for me though to supervise them. Parents have to supervise, there is only one staff member present and about 10 kids in art and about 35(!) in music. Let me just say that 45 minutes is an endlessly long time to supervise two kids to paint. Like, and make sure they don't hurl paint trays across the room or what not. I am way more exhausted than them by the end. Aaron can do his own thing, I just need to watch to make sure he doesn't spill something or steal another kid's paintbrush or something. Naim is tougher. He gets freaked out if he gets paint on his hands, his clothes, the floor, the (covered) table. I'm trying to get him to loosen up about it. But I usually end up just letting him clean up as he goes, because that is what makes him happy. He usually lasts about 30 minutes and then I let him wash his hands and play with puzzles in the circle area instead of paint. I'm doing these art classes for Naim, so he can work on his hypersensitivity to texture, and messes. As I've said before, the kid is a wee bit spectrum-y. I still think there is a chance he might grow out of some of this. I hope it doesn't get worse. That is what I'm trying to prevent. The other excellent thing about these classes is the kids make a big mess and I don't have to clean it up! Yea, Children's Museum!

I have to say that I feel really stupid now that I wasted my money on Gymboree classes last year. They were horribly expensive for a 45 minute class, which is why we quit. They don't do anything there that the children's museum doesn't do, and the children's museum does a ton more. A year membership for the kids and I costs $75, compared to I think it was over a hundred dollars per kid for just ten 45 minute classes at Gymboree. And Gymboree had this crazy-ass rule about not letting me (anyone) supervise both their children at once. You had to either bring an extra person, or take the family class which was geared to kids 6 months to 5 years. Chaotic. The museum art classes cost a whole $2.50 per kid at a drop-in rate. Plus the music class is free, plus all the other stuff they have there (plays, puppet shows, tons of different play areas, and the best part--a big train set!). You do end up seeing some of the same moms and kids there, too. So there are some chances to make connections. Gymboree didn't make it that easy to talk to other moms because the teacher was always screaming at hyper pitches. Anyway, this is all to say that I think Gymboree is kind of a crock. And that the kids and I are having fun in their art classes.

What else? When I was working in Child Life, I made some connections at Boys Town Hospital in Omaha. (I went to high school across the street from Boys Town and we had a lot of boys town kids in my classes, so this is actually a way back school connection.) Anyhoo, She sent me a bunch of DVDs made by Boys Town institute that are ASL-ed classic children's books. Cool, cool. This guy signs the story and then shows the illustration of each page. The guy is a character. He has one of those mustaches that probably has another name but I call it a "Colonel Mustard" stache. It like winds around his cheeks like a beard but his chin is shaved. Anyway, Naim is just freaked out fascinated by this guy. He goes back and forth from panic to wonder at him. Sometimes he stands in front of the TV and just starts signing like crazy with his whole body. He isn't really signing anything, he is just pretending to, but it is hilarious. Other times, he covers his eyes when the guy signs and then uncovers them when they show the picture. He really likes an Eric Carle one about a chameleon.

I have a whole 'nother post in my head about the kids and socialization and their status as sorta KODAs (Kid of Deaf Adult) and what that might mean for them. But I have to save that for another time. But I really think they need to be around more signers. I would love to find a KODA group for them where they could be around kids who sign, or even a group of deaf kids with hearing parents--but so far, no can find besides a few camps. We probably will take a class next year with the homeschooling coop called beginning sign. They will probably know most of the vocab already, but at least they will be around other signers besides mom and Rachel from Signing Time, who they also call mom. Now we have Colonel Mustard, so that's good, too. They are starting to see that the rest of the world doesn't sign. I really want them to know some signers.

Speaking of Rachel from signing time, if I ever meet her, I'm going to thank her for helping us figure out this your turn/my turn business. This whole taking turns business is finally starting to sink in to their heads. Its one of those things that you wear yourself out talking about and think they will never get and then finally they do. I'm not saying they always take turns, by god no-not in a million years. But they know what I mean when I say it. And they know how to do it. Signing Time has a song about Please/Thank you/Share/Your turn/My turn and all the corresponding signs. They love this song and they love the your turn/my turn signs. Sometimes we just play a game where we take turns doing the sign for taking turns. All kinds of fun. And Naim says and signs thank you all day long whenever I hand him anything. I know he doesn't quite get it because he also tells me thank you when he hands me stuff. But it is really cute.

One last cutie thing I want to remember. When Naim puts his pants on in the morning, we have started to have to do this whole elaborate farewell to his knees. Naim has a very special relationship to his knees. He used to be in love with his elbows. In fact, I have several pictures of Naim's elbows that he made me take. But elbows recently gave way to knees. And we have to say, "Bye knee! Bye bye, other knee!" when we are pulling up his pants. And then we have to kiss them. He does and I do and sometimes even Ernie and Elmo do, too. And then, what a joy it is at bedtime when he gets reunited with his knees. There is lots of kissing and hugging there as well. Hey, they are really cute knees, I must admit.

Oh, now I don't feel like I've written enough about Aaron. Must always keep it equal! Aaron is just verbal word boy. He repeats everything I say with near perfect enunciation and learns words faster than I can keep track. We have little conversations all the time where he tells me stuff. I was so excited the other day because he is actually starting to tell me stuff that happened at daycare. I asked him what he played the other day, and he said something I didn't understand which sounded like Hi-EEK. I didn't get it at first so he goes over to the corner, plants himself against the wall, counts to ten, and then says perfectly, "Ready! Not! Here I Come!" Oh! Hide and Seek! We never played that, at least not the ready-or-not part. So he actually understood that I was asking him about daycare and told me what he did. Whoo hoo, what fun.

Okay, that's it. Just thought I'd tell ya that parenting is fun!

Me and My Shadows

Heather Armstrong writes the most lovely "monthly newsletters" to her daughter, Leta. It was actually, in part, the inspiration for the whole "Letter to My Children" thing. I'm sure she has them saved in some beautiful scrapbook that her daughter will cherish forever. I wish I could write like that. But I haven't had the discipline or the talent to pull something together like that. I get bogged down writing about crazy family relations and maddening politics or trying to respond to emails about diapers or disabilities on this site sometimes. I don't even think I've written about the kids in a while. I still have kids! I still treasure just the plain ol' mommy thing!

Its ironic that I'm inspired to do this today, because I've just spent the last three days getting barfed on. And previous to that, two weeks of getting snotted on. And previous to that, weeks and weeks of getting diarrhea-ed on. Yes, it has been a tough winter for Aaron. Naim is just fine, of course. He has an endocrine system of steel, apparently. But Aaron has always struggled with his health as I do. Of all the things I could have passed down to him...blindness, deafness, kidney disease...I seem to have passed down to him my lousy immune system. It is actually the one thing that probably gives me the most struggle day to day. Both Aaron and I have to fight for the good healthy days. I'm hoping he grows out of it.

Today I had to drag everyone to three doctors appointments. Thankfully, D came along to help. But we are quite a crew trying to get all of us, wheelchair, double stroller, kids and me, around a hospital. It's not so bad in the pediatricians office, where everybody's kids are making a lot of noise, but it is kind of funny to walk into a quiet and somber nephrologist's 6X10 stark waiting room with the whole crew making a racket. Everyone looks up and stares. Some are disturbed, others are delighted for the break in the boredom.

Aaron and I went to the pediatrician about the barfing, while Naim and D stayed out in the waiting room. It had gone on for almost 48 hours, and although he was drinking and keeping some fluids down, he had eaten nothing in that time. And I had had it with the cleaning of the without-warning projectile vomiting. Kids this age are funny when they barf. They don't expect it or have any control over it. Adults will feel it coming on and try to hold out until they can rush to the bathroom. Kids will just be walking along, minding their own business, and suddenly their breakfast shoots out three feet in front of them, and then they keep walking. Ugh. I ran out of pants today because all of mine had been barfed on. So, the verdict was no surprise: stomach virus. Suppositories and pedialyte. Wait for the runny poop, and then it will be over. Pray Naim doesn't get it. (Aren't you glad you're reading this post? I hope you're not eating breakfast as you read. --Sorry.)

When I came out, D had a bunch of women around him and Naim. They were all cooing and giving Naim suckers and toys and stuff. I notice this with my dad, too. When I leave my kids alone with men, its like a chick magnet. Wouldn't it be cool if guys would come running to help me when I'm struggling to shove my double stroller through a doorway or pay for groceries with an irritable kid on my hip and another one whose stapled himself between my legs? Heh. Women alone with kids is like dude kryptonite.

So then, over to the hospital and to the audiologist to drop of my FM mike that is broken for the 80th time this year. We stopped at a cafeteria and tried to feed Naim actual food while only allowing Aaron juice. Very hard. I did have to give him a small piece of D's peanut butter cookie. And then I watched while he fought off trying to barf it across the table. He did good though. No barfing for the whole afternoon. Then off to the nephrologist to get my kidneys checked. Again, D stayed out with Naim and Aaron came with me. The doctor had me get on the scale while I was holding Aaron. he didn't even care. I said, "You know you have to subtract like 27 pounds from that, right?" He whatevered and walked off. So next time he'll probably freak out because I've lost 30 pounds in a week. B/P, squish on my legs, squish on my kidneys, pee in a cup (While Aaron smashed himself beside me) and out the door. In the waiting room, D is surrounded by the receptionists giving Naim their little desk toys to play with.

Up to the lab for blood work (while still holding Aaron) and to collect my jug to pee in for 24 hours. Then to Walgreen's for pedialyte and suppositories (with Aaron) and home with two cranky kids that missed their nap. But then I was able to fake 'em out and put them to bed an hour early. And no barf as of now. So we might have turned a corner. In total, I held Aaron almost continuously while traveling all around a medical center for 6 hours. He's only this clingy when he's sick. Which lately has been a lot. Aaron held a toy train in his hand for 6 hours as well. I used to not let them take toys with them into places because I thought they would lose them. Not Aaron, you couldn't pry his selected toy out of his hand. He likes to have something to hold on to. My only exception is that I will not let them take toys into the daycare or church nursery, because it just causes problems with the other kids who want to play with it.

I'm writing all this detail down about today, because someday I will have forgotten the fact that I had to take my kids with me EVERYWHERE. I know there are other parents out there in my situation, but many people have far more backup, babysitters, relay people, whatever than I do. Even when my kid is barfing sick, the poor guy has to be drug to my kidney doctor. They put up with a lot. We walk in all kinds of weather, we wait for all kinds of public transportation. Even today, D gave me a ride, but we just parked once and just walked from building to building on this medical campus. They walk up to the ATM with me, they do all my shopping with me, they get dragged to church meetings with me. I can't think of an errand or place I've been in the last six months or longer that I've done without the kids. They are my constant appendage. And they have to put up with me all the time, every day, all day long at home as well. And most of the time, they really do a good job. But sometimes I worry that they get too much of mom and not enough of other people.

But we have had a lot of visitors the last few weeks. My dad has been here for two months and just left last week. (That went extremely well-- by the way.) Although he refuses to babysit, he is someone else to interact with. He will occasionally watch them downstairs while I'm upstairs. My sister FINALLY came and met my kids. And the best thing about that is that now D or I don't have to answer his snotty-ass relatives that passive-aggressive to us about why it is that my sister hasn't met my kids yet. There has been first contact! It was only two days, and the first day Aaron, of course, was really sick and clingy. But the second day was much better. My sister can be kind of standoffish sometimes, but if you can knock that out of her, she can be a lot of fun. So, by the second day, she was interacting with the kids and they were having fun with her. It is a bit of a breakthrough. I think now she will be more comfortable having a relationship with them. Maybe next time will be a longer visit.

I've bitched a lot about D's relatives as a collective lot, but it really isn't fair to do that. I do it mainly to sort of be vague and not single anyone out. But it really is only a couple of people who do the full on judgmental passive-aggressive hate thing. D actually has a lot of cool relatives that I've met. Two of them are his sister, V, and his brother, Q. I love 'em both. They are both so much fun and easy going and relaxed. They don't take themselves or D and I too seriously. They are more perceptive than judgmental. They are fun for the kids to be around and have always just accepted the kids as family. The only bad thing is that they both live several hours away.

They both came up to visit D's mother, who recently had surgery. And they came over and visited us, too. Q had both kids in stitches the whole time. Q shaves his head, and plays this game with Naim to look for where his hair went. It's cute, Naim looks all around, under rugs and chairs, saying "Where Hair Go?" He's really good with kids in that fun way. I always liked seeing Q with kids. Once at KU, I was taking a group of about 8 kids on a field trip to a natural history museum on campus and I ran into Q with this whole line of kids behind me. Q got down on kid level and introduced himself to every one of them, shook their hand, and asked them their name. He just meets people where they are.

He was only up for a day, but V visited several times. And then she did the most amazing thing. She and D were going to go shopping at a mall, and she offered to take the kids with them. Like without me. Like, thus leaving me in the house alone for 5 hours. Alone. In my own house. You don't even realize what a miracle this was. I have literally not been in my house alone for more than 15 minutes for over two years. Not once. I didn't even know what to do with myself. I went to the mailbox, alone. And then realized that I could take a walk. Alone. Without pushing a stroller. Without the whole cumbersome deal that is to do when you can't see well. So I took a walk by myself for the first time in two years. I felt like Julie Andrews at the top of the Mountain at the Austrian/Switzerland border. If my neighbors wouldn't have tried to commit me, I would have ran spinning down the street, singing and arms flailing.

And when my kids came back, they were happy and diapered and fed and had new gifts to play with and a new outfit for each and were happy as could be. They definitely needed a break from me as well. And they had missed their nap as well that day, so they were in bed early. It was a really nice break. Aunt V ROCKS!

I know that next year when we start the preschool co-op they will meet other adults as well. Three is a bit of a breakthrough age for getting out in the world. They are old enough to do a lot more things. They will be talking more and potty trained (we hope) so other people are more willing to take them. I don't know if D will be able to take them alone next year or not. But he will at some point, and so will my dad. So I know it won't be like this forever. I know they won't be glued to me 24 hours a day for the rest of their lives.

The funny thing is that even though I know I need the breaks, I'm sad about that. I will miss having them with me 24/7. One thing that was weird when my guide dog died, was that I was no longer part of this unit anymore. I'm not comparing my kids to a guide dog, but we are a unit. People are used to seeing us together. I'm used to having a sick Aaron attached to me like a koala bear for six hours while he holds his train in one hand and pats me on the back with the other and tries not to barf on me. I'll miss Naim's little check-ins. He goes off and does his own thing, as long as he is within visual range of me and still comes over and checks on me every few minutes. He leans against me with his hand on my leg as he looks out into the world, like, mom--I just need a breather for a minute while I contemplate what to tackle next in the big world, and you are my home base. I'll miss that time after they wake up from naps and want to be held. One on my lap, curled up under my chin, another sitting next to me in the crook of my arm. I get impatient because I have to go cook dinner and they won't let me up. But then I think, at some point, they aren't even going to be here for dinner. Just shut up and savor the moment.

I sometimes wish it could be spread out more evenly. Like I could get more breaks now, but then when they are teenagers, they would want to spend time with me more than teenagers usually want to with their parents. But it just doesn't work that way, so even though I'm very rarely more than 50 feet from my kids now and sometimes want to jump out of my skin to escape, I'm trying to just appreciate every minute of it. Even when it includes being barfed on.

No More Preemies: 2 Year Check-up.

For those of you who had preemies, you know that two years old is a developmental milestone. It is when they stop adjusting for prematurity and the child is supposed to be all caught up. We finally got to the doctor for their two year appointment. They are actually 25 months and two weeks old, but the doctor went by 24 months. So, even though he didn't adjust, it kind of happened anyway.

So here are the stats:

Naim:
Age = 24 Months
Length = 34.5 inches
Weight = 26.0 pounds
Head circumference = 50.0 centimeters

Length = 50th percentile
Weight = between 10th and 25th percentile
Head Circumference = between 75th and 90th percentile

Aaron:
Age = 24 Months
Length = 35.0 inches
Weight = 26.25 pounds
Head circumference = 49.5 centimeters

Length = between 50th and 75th percentile
Weight = 25th percentile
Head Circumference = between 50th and 75th percentile

So more or less, they've caught up. The weight thing, if you consider that they started at below the 3rd%ile--not even in the "shaded range"--they've done pretty well. The arc of their weight line is significantly steeper than the average arc, so they did make up a lot during the first two years. After the first year, the doctors/nurses have not worried about the weight thing anymore as long as they are gaining. In fact, the ped said something about how my kids would be more in line with the growth charts from 50 years ago. He says they've changed them because American kids are fatter now. He said slim is a good thing in our society now.

My sister and I were really skinny as kids. We had a neighbor, who was also our school nurse, who always told us we were too skinny and needed to eat a milkshake a day. She got more on my sister than me, because my sister has always been really thin. But it kind of drove us nuts. She was a little plump Italian lady who would come to our class and teach us how to make homemade pasta and sauce, so those were the standards she was coming from. For a while in third grade, after I was hospitalized, she made me eat four of those frosted wafer stick cookies and a big cup of really, really sweet grape soda every afternoon while I was making up work. It was tooth-achy sweet. I can't imagine a school nurse prescribing that now. But point being, maybe the kids' slimness is more based on heredity than on prematurity. They certainly aren't starving.

So the appointment went well except that Aaron has eczema. I'm kind of embarrassed to say this, but he's had it for months and I never thought to take him to the doctor for it. With my health insurance problems, I always have to consider what is worth taking the kid to the doctor for. I often adopt a 24 hour strategy. "Let's see if it gets worse in 24 hours and re-evaluate." The eczema is not severe, mostly it just looks like dry skin which is what I thought it was; he just has a few blotches on his back and he doesn't seem to ever be bothered by them. A few weeks ago, I started putting Burt's Bees stuff on them. The really thick Baby Bee emollient type of moisturizer on top of their regular baby lotion. Aaron calls it putting "goop on my spots". After the Burt's Bees, the spots started improving significantly. They are not as dry and flaky and they are smaller and no longer very reddish in color. I told the doctor this and he kind of snotted at me, "Well, that's not even medicated." So, I'm going to fill his scrip for cortisone and use it to get rid of these spots, and then I'm just going to keep doing what I've been doing and see if that's the end of it.

That pediatrician is hilarious. I'm pretty sure he's on crack. He comes in and talks at ninety miles a minute about stuff I already know and you can hardly get a word in to ask the stuff you don't know and then he leaves and you feel like the wind was knocked out of you and you're not sure what happened. Here is an example of what I was talking about in the previous post. He goes on forever explaining what percentiles mean and what different statistics mean, or tells me some really basic thing about child development. I just want to stop him and say, "I KNOW already. Now can we talk about something I might actually have a concern over?" I feel like telling him, "oh, I have a master's degree in this stuff." Or something. Or is that just totally obnoxious? He has always been a little strange about me and D's disabilities. It's like he is trying to be really cool and open about it, but he really doesn't have a clue so he says some kind of rude stuff without meaning to. Mostly kind of intrusive stuff that has nothing to do with anything. He actually wasn't bad yesterday. Maybe he is getting used to us. But he took us on voluntarily when the kids were on Medicaid and he didn't have to. At this practice they have a quota of Medicaid patients that individual partners can take on a voluntary basis. He took us despite having filled his quota, we heard. So that was very nice of him. But he kind of sometimes acted in the beginning like we were real charity cases. He got into a discussion with D at some point about how D sells software and sometimes does tech support and studied computer engineering, and I could tell he was blown away that we actually do something with our lives. But he's never asked me what I do/did, so there hasn't been a good opportunity to really tell him that he doesn't have to explain the difference between percentiles and percentages to me. In any case, I think he is getting better about us, which is good. And I'm sure they just have these same speeches that they run through for every parent and he's just on autopilot when he comes in. But the man can fit a lot of words into each minute.

The one other little thing that bugs me about him is that he tells me to pull the kids' foreskin on their penis back once a day. I've never heard anywhere else that this is necessary. When I made the decision not to circumcise them, I did a bunch of research on what kind of care they needed and how to prevent infections and whatnot. In everything I read, including the American Academy of Pediatrics official statement, it says not to do this. If you didn't know (and I didn't), I guess the foreskin is sort of attached on babies, and then slowly over time it unattaches. Like this will take maybe four or five years in some kids. So, they say that just in life doing the things boys do, they will loosen it themselves and there is no reason to force it. You can actually cause an infection by forcing it before its ready. So you are just supposed to wash in soap and water and then when the kid gets older and it is all unattached, you teach him to pull it back and wash it. I'm probably not using the right terminology here, but you get what I mean, right? Okay. So last time I was there, he forced Naim's back, and I could tell it was very painful, and it was red for a couple of days. Since then, I've noticed that it was getting unattached, but I never did pull it back even once. So, this time, he does it and it pulls back and he goes, "Oh, I'm glad to see you've been pulling it back." Well, I haven't. Then we get to Aaron, whose all attached still, and he told me I needed to pull it back once a day. And I said that from what I've read this isn't necessary. He looked kind of surprised at went off on varying theories about that. I said I was going by the AAP and the American Pediatric Society. And then he kind of cocked his head, like "whatever you say, silly mom."  So, I guess we agreed to disagree there. I mean, do you think mothers have been pulling back their son's foreskins everyday throughout the dawn of time because it is so necessary to do this? If so, wouldn't I have heard about it? Have you? There is no medical reason for it so I'm not going to do it. Maybe I should send him this. (.pdf pamphlet against forced retraction of the forskin from UN sponsored National Org. for Circumcision Information and Research Centers)

I should probably delete that paragraph before the kids reach adolescence, huh?

Basically, I think that D and I have enough medical experiences to know that you can usually let nature take its course and then try a few naturalpathic things first (a la Burt's Bees) before medical intervention is necessary in many cases. I also am a slow vaccinator, mainly due to Aaron's seizures. We vaccinate, but we do just one or two at a time, instead of like, six. I think he is a bit annoyed by this, mainly because it means they have to think a bit before giving them the shots instead of just using what they use for everyone else. As a medical doctor, I think he wants to jump to intervention and write scrips a little too quickly for us. But I'd actually rather take that than the alternative, when you have to beg doctors for medical intervention after you already have tried everything else.  In general, he gets points for taking us on in my book and I think he is very knowledgeable about most things and means well. So, he'll do.

The only other thing I wanted to add here for this two year kind of status update is some info for my own memory about their developmental evaluation by healthy start. (Healthy Start's assessment tool is kind of meh. They will get a better one next week when their nurse comes.) Aaron is above average in language, way above average in fine motor skills and problem solving, average in social emotional, and slightly below average in gross motor. Naim is average in language, way above in fine motor and problem solving, average in social emotional and just a hair on the average side of the bump in gross motor. I think the problem solving advantage comes from being a twin. They just don't have me there all the time to help them when they get stuck, so they have to figure out a lot on their own. The healthy start teacher gave me a nice compliment about this and the fine motor. She said I have the best developmental toys of any house she's seen, and that they all compliment each other and teach them something instead of being junk. (See? Being a toy snob has its advantages.) I think also because I don't have a lot of money, I am really, really selective about what toys the kids get. Also I use  mostly educational supply companies (or eBay knockoffs of such) instead of toys 'r' us, so that helps as well. I think the gross motor might be a little bit of a combination of prematurity, twinness, and single momhood. The prematurity factors in because, in Aaron especially, his head is just too big for his legs. He hasn't grown into the type of body that can run, jump, and balance yet. He will, but right now he just doesn't have the body for it. Twinness and single momhood kind of go together because I think that I avoid taking them out for walks or trike rides more than I should. We go to the park and stuff, but I stroller them there. Walking out in the world alone with two toddlers going in different directions at different speeds is just dauntingly impossible right now. This is why I signed them up for the gym thing where they can run around in the safety of the gym.

Today was pretty nice out and my dad and I took the kids for a walk with their ride-on toys. With just one kid to watch, it is a total breeze. If I had a 1:1 ratio, I could do that every day and we could probably walk a pretty good distance. We had fun today and I probably need to work on that more. Eventually, I will have to deal with them without the security of the stroller. [Cue Jaws music here]