Wednesday, April 29, 2009

The Part Where I Freak Out

So, it's after one in the morning and I'm working on my web site that needs to be finished by Saturday. Saturday I'll be handing out little cards with my web address on them, so I'm understandably nervous about the whole thing.

I've had a couple of serious freak-outs where I decide that I've lost my mind. Lost it.

But then I pick up my to-do list and get back to work.

Despite my best efforts, life in general continues to happen and we've had therapy and doctor's appointments this week.

We visited with the ENT and have ear tube scheduled for next Thursday. I had a nightmare about the whole thing, but then he's been tugging on his ears again, so I do think that this is the best course of action.

Charlie had to get a hearing screening before he saw the ENT and he flunked with flying colors. Fortunately, everyone involved took my word for it that he has excellent hearing. They just didn't have good enough noises! There's no way Charlie is going to turn his head for a loud static-y sound. Hello! It's hard for him to move around--he's not moving for static. For Lady Gaga? Maybe.

The ENT did comment that he seemed to be doing extremely well despite his diagnoses and I couldn't agree more--he's doing fabulous these days.

He still has no interest in standing, but he kick butt in his floor work. His kneeling is continue to look great. He's really pushing up his upper body, and making attempts to get up on a little stool while crawling and today he--gasp--got his booty clear off the floor. Basically, the back half of him looked like he was true crawling, but his front half was in the commando crawl position. Still--that's major progress for us.

The no standing thing is starting to freak out his PT and she's hinting heavily that she'd like me to take him in to see the physiatrist to get a hip x-ray. We're due to return in June, so I guess I could move it up a little just to please her. Yay! Another doctor's appointment!

And the other big news is that Charlie has seriously increased the use of his right hand. I feel like I'm always saying that, but twice in the last week he's tried to feed himself using it and he's even passed things from his left hand to his right, which is just incredible. His right thumb is still pretty disagreeable, but he's definitely starting to realize that his right hand might be good for something.

So. . . I'm freaking out, but Charlie is good.

Can't wait til I have real time, so I can write a real post.

Sunday, April 26, 2009

They Didn't Warn Me About This

I'll admit, gleefully, that this post is a joy for me to write. There are so many things that I worried about, so many things that I wasn't sure would ever happen. But I digress. . .

It all started when I turned Charlie's car seat around. Seems harmless, right? He'd met the weight requirement a while ago, and I thought his neck strength was ready, so about a month ago I went ahead and turned his car seat to the forward-facing position.

The thing is. . . now he can see me. Sounds good, right? Well, not so much.

Despite having visual impairments and severe brain damage, Charlie quickly figured out that Mommy has control over what songs play on the radio. When we make our 45 minute trek across the lake, I plug my iPod in and jam to whatever I feel like it.

But times, they are a'changin.'


Charlie has no patience for Sarah Bareilles, anything country, or Billy Joel. He lurves Leona Lewis, Gavin DeGraw, the Black Eyed Peas, Britney, and Lady Gaga. Anybody else know that Britney's middle name was Jean?

The other day I had to listen to Poker Face twice on the ride home. Also, he seemed to find Blame it on the Alcohol quite entertaining. For the record, I hate that song and wouldn't purposely listen to the entire thing without coercion. Also, for the record, I've had to employ a lot of my own discipline techniques as we navigate the scenario where my not-even-two-year-old thinks he should have say on what plays on the radio.

So, apparently it isn't enough that I didn't sleep through the night for almost a year or that I have a four inch scar as a result of his birth. No, Charlie will not rest til he's King of the Radio.

So, damn, that was quick, and also, That's My Boy because I don't think there's anything more normal than driving your mother crazy.

That's my boy!

Thursday, April 23, 2009


Barbara's doing a Blog Carnival and I was determined participate, so here I am, sliding into home at the last minute with this thing. The topic is "how have you arranged your home to stimulate your child's development?" Since I'm putting this together at the last minute, I don't have any current pictures. I wanted to put pictures in, though, so here are a bunch from the last year to illustrate my points.

I think I really wanted to participate because this is a topic that really speaks to me. I am one of those people that loves to peek into other people's homes and see what they're doing for their children. Here's a chance to peek into mine--please pay no mind to giant pile of laundry on the floor.

The majority of our time is spent at home. On a perfect day, we'll leave the house for a very short time or not at all. This is not because I like it this way--I actually love to get out and do things--but because Charlie's has the most productive days when he's home.

I think that every parent struggles with finding a routine/strategy that not only work for their family, but that is easy to keep up with. For us, I set up our home like a series of stations. Each area of the house has different equipment and different toys for Charlie to play with. This way, he's in different positions throughout the day and stimulated in different ways.

When we're in the kitchen, Charlie sits in his high chair. He has a few toys that he uses only in that spot, but we also work on self-feeding. Typically, I'll put a few snacks of different sizes on his tray and let him experiment with that. While he still hasn't mastered the pincher grasp, he can get almost any size object off his tray now. We also work on cup drinking while we're in the kitchen. Charlie's favorite activity while in the high chair is throwing things on the floor, which I am slightly less enthused about. Before Charlie was able to operate toys, we would hang bells off the kitchen counter so they rested very close to his hands. He would move his arms and the bells would sound, which he loved. It's also fun to let him smell whatever we're cooking with--garlic, lemon, cilantro--a little sensory stimulation.

When we're in the living room, Charlie is typically on the floor. We make a circle of different toys and he crawls from one to the other, rolling and crawling along the way. When Charlie was younger, floor time was a lot more abbreviated. We would lie him face down on a crib toy and his movements would activate it. I would also put him on his back and let him kick a crib toy, which was the first toy he was able to activate.

We also usually work on weight-shifting or kneeling while we're in the living room--something that doesn't involve equipment.

We keep the equipment in the room with the computer. I'm cheating here because there are no pictures of the computer room. It's also an office/guest bedroom/general junk room, so I'd rather die than take a picture in there. That is where we keep the stander and the Rifton chair, though. It's a little personal bribery on my part. I love to be on the computer, so I put Charlie in his equipment while I'm on the computer. That way, I'm encouraged to use the equipment. I never put him in equipment back to back, so we're usually in and out of the room a couple of times a day. Typically, I put him in his Rifton chair during the day and my husband and I put him in the stander at night and we all hang out in there as a family.

When I'm taking a shower, we put Charlie in his bed with one of those baby gym things overhead. He's too old for it, but he loves it, so that's fine with me. Plus, when it was developmentally appropriate, he wasn't strong enough to really enjoy it.

We also put him in a reclining chair in the living room--usually in the evenings. He plays with toys here too and since it's reclined he really has a chance to play with the toys without worrying about gross motor skills.

So, that's our home. As you can see, we're not equipment-crazy. Rather, I prefer to look at us as position-focused and just let the rest fall into place.

Monday, April 20, 2009

Poking My Head Out

I'm in the throes of becoming a business woman this week, so please don't expect this to written or edited very well. Also, if I didn't comment on your blog, I still read it. . . I just don't have a lot of time, so I'm reading on the go!

This weekend I began stocking the shelves of my online store. . . boring! I had no idea I'd be so bored, but it's basically data-base management and that isn't really my cup of tea. I also continued to finished up art pieces so I'll be ready to go on May 2nd with a full body of work. I set up a practice booth to iron out any kinks and I think I'm pretty much ready to go on that front. My college buddy is going to help me out with manning. The event is mostly about publicity--not sales, so I also designed a little postcard to hand out to people who pass by. I'm still waiting on my tax ID number and as soon as I get that I'll be able to open my very own business checking account.

Things with Charlie are pretty much simultaneously great and not-great. There is SO much that he's doing. When we hung out with Erin in Dallas she introduced the concept of getting Charlie to make various sounds. Before that, we had pretty much no idea how to get him to vocalize. Erin was doing an example and Charlie caught on right away. Now, he can do some "a" and "i" sounds and we're working on "o." For the record, I know the exact symbols that represent the sounds he's making, but I don't actually know how to get Blogger to make those symbols.

He's begun crawling up to things and putting his hands up on them, showing up that he wants to pull up.

When we put him in the kneeling position, he actively pulls up and gets his hiney off of his legs.

He's using his vision so much more that it astounds me. Today at Picadilly I almost cried because he was just sitting there, eyeing his food, and opening his mouth each time I tried to feed him a green bean. There was a time when I NEVER thought he would do that.

Today he even began trying to get his bottom off the ground and into the crawling position.

So much good, right?

But he's also really struggling with standing--well, he's not struggling, he's just not doing it. And he's been refluxing again, which we haven't had a problem with in ages.

So, I'm focusing on the negative, I guess. Probably the stress from one area just spilling over to another area.

Anyway, I told you this might not be coherent, and now I have to get back to that beckoning to-do list!

Thursday, April 16, 2009

Prayers Please

Tiffany and I have been reading each other's blogs since before I had Charlie and before she had Blair. We both lived in Arkansas at the time. Her oldest daughter, Baylee, has been rushed to Arkansas Children's Hospital (where Charlie spent the first five weeks of his life) after they found something serious on an ECHO of her heart function. I've been checking in with them all day, but so far there hasn't been much news, so please put your prayers on the situation. ACH is a great hospital, but my preference would always be that parents don't have to end up there.

The One Millionth Post About My Kid's Ears

I haven't mentioned this before, but in the last few weeks Charlie's been doing some weird things in physical therapy. He is actively trying to pull to a stand, but then he promptly falls down. When sitting in his Rifton chair, he sways back and forth like a person's who's had too many cocktails.

At first I thought it was just me, but then the PT noticed it too. Physically he seems stronger, but he can barely hold the standing position these days. Normally, I'd assume that he's doing one of those things where one skill regresses in favor of another, but he seems genuinely interested in getting himself up, so that's doesn't seem to be the issue.

So I made a list like they do on House of all the things that could be causing these symptoms and came up with three possibilities:

  1. He's having drainage issues with his shunt and that's affecting his balance.
  2. He's having a growth spurt and his muscles aren't able to keep up with the demand.
  3. He's having problems with his ears and that's affecting his balance.

Anyone else cringe when they have to use the word affect/effect in a sentence? Hate that.

Anyway, we started with the ENT because that was a fairly easy appointment to get. We went in yesterday, I gave them the digest version of Charlie's medical history including his recent falling down, and held Charlie in a wrestling move while he took a good, long look in Charlie's ears. He also checked out his nose and throat.

After giving these parts a good, long look his professional opinion is that Charlie probably needs tubes in his ears and possibly an adenoidectomy. Neither ear drum is the right color and his left one is showing signs of scarring and is graying. This means that he probably has a chronic problem with fluid behind the ears. His tonsils are enlarged and that means that there's a good chance his adenoids are as well. Add that to the fact that he's got a lot of signs of mouth-breathing, and that means there's a good chance that he would have enhanced breathing and drainage if his adenoids were removed. They can't know for certain about the adenoids without looking at them, but he said the standard procedure is to schedule the adenoidectomy at the same time as the ear tubes and if the adenoids end up looking OK then they don't remove them.

He also said, however, that Charlie is a complicated case and that he wouldn't do any kind of surgery until his neurosurgeon and his cardiologist signed off on it. I've googled shunt and ear infections, but I can't find any literature on whether or not you can have ear tube put in when you have a shunt. In case you didn't know, shunt tubing runs behind Charlie's right ear, which may complicate things. I'm hoping he could get a tube in his left ear at least, which is the worse one of the two. Cardiology isn't an issue since we've been released, so I'm not too worried about that.

There was one funny moment where the doctor warned me that if we took out his adenoids then he would probably have to be intubated for the procedures. I smiled and said that Charlie always did well with anesthesia and he chuckled and said that I probably wasn't going to be one of those moms who needed a Valium to get through ear tube surgery.

He did also say that whatever needs to be done to keep Charlie safe is fine with him. That means that Charlie may end up getting the procedure done at the hospital where he sees his other doctors, so everyone can be on hand if their are any problems.

I'm not happy about the idea of yet another surgery, but my understanding is that this is a pretty run-of-the-mill procedure and I'm completely interested in safe-guarding Charlie's hearing.

Ahhh. . . . kids. . . it's always something, isn't it?

Wednesday, April 15, 2009

Chicken With its Head Cut Off

Well, the art expo is a definite and now I have less than three weeks to finish my pieces, create a booth set-up, finish my web site, get business cards and fliers printed up, and get a retail license. I'm working especially hard this week since my MIL is on Spring Break and has offered to watch Charlie for an hour or two in the mornings.

I will admit that last night I had a complete loss of confidence and decided that I was crazy, but I've learned that those thoughts are part of the territory and just pressed on until I felt better about the whole thing.

If that wasn't keeping me busy enough, my SIL, who has been invaluable to me as I've hammered out the details of a lot of this stuff, wants be to have my note card designs finished by the end of month. She's got multiple baby showers and she wants to give them as gifts.

So. . . basically I've been talking about starting my own business for like a year now, and suddenly the ball is rolling down hill and it looks like I may be operational in the next thirty days. Scary!!!! and also exciting!

So. . . back to work!

Sunday, April 12, 2009

Full-Speed Ahead

I'm not entirely sure that I'll be participating in the Expo in May--I have to call tomorrow to see if they have room--but the idea of it has jump-started a lot of thoughts that I had, but somehow never managed to get done.

Part of that is developing a web site for my art.

Let that sink in. . . I'm designing a web site, which by the way, I don't actually know how to do.

I'm going with one of those customize it yourself deals where you pay 5.00/month and customize a pre-made template. I've got a lot of options and things seem to be coming along, but I have no idea what I'm doing. I ask my husband for help and while I totally appreciate his opinion, we have vastly different aesthetic sensibilities. Right now it's going to just be a basic page with contact info and whatnot, but soon I hope that it will link to my online store where I will sell original artwork, prints, note cards, and maybe magnets.

Also, for the Charlie fans out there, today was Easter and Charlie did an awesome job using both his right and left hand to grab and bang together Easter eggs. I'm getting crazy hopeful about that right hand these days. We also let him play the piano, which simply reinforced my belief that he is a complete music lover. I would tap out a little pattern and he would do it too. I showed him where a C note was and I could see his little fingers exploring, trying to find it himself. He also did plenty of good, old-fashioned banging, and gave the keys some good licks (low-vision kids put everything in their mouths), but I can tell he's got a real ear for music and I'm trying to figure out how I can incorporate more of it into his life.

Saturday, April 11, 2009

This and That

I swear that I'm going to try to get a little more consistent with my blogging one of these days. I really do have plenty of stuff to talk about--I just struggle with coherent thought by the end of most days. So. . . in no particular order. . . here's what's been going on.

Charlie will be two in June and it's starting to show. He pretty much only wants to eat spaghetti o's or whatever my husband and I are having. We're having to switch gears pretty quickly and start getting him his own food when we go out. I suspect we're going to be completely done with toddler meals pretty soon.

He's also decided that he does NOT want to poop in the potty. I'm a little blue, but also a little happy since this is a pretty regular kid thing--I love it when my kid acts like everybody else's kid!

Our combo of ABR and Feldenkrais really seems to be working for Charlie. He's really starting to use his right hand more, although it is still less cooperative than his left. He doing a great job in kneeling position and he's getting really good at pulling up to a stand. Also, he's starting to use his legs when he commando crawls.

Our local early intervention bureau is reviewing our equipment requests. I am DESPERATE for this stuff, so let's all cross our fingers that it all gets approved.

Charlie's been working on communicating with a borrowed Cheap Talk 4. He understands how to use it, and understands what each button is for, but I don't think he "gets" that this is how he's going to communicate with us. Basically, he thinks it's a funny game. The understanding is there, though, so his speech therapist can't wait to get him on a more advanced system.

I guess the final bit of news is that I've come down with a case of the crazies and am seriously considering participating in an art expo in three weeks. I'll have to go full-speed for the next three weeks to pull it off, but it's a great chance for exposure and it's free so I'm thinking about going for it. I've always been a last minute kind of gal, so this may be just the way to jump-start the s-l-o-w process of starting a business. I'll know for sure my Monday afternoon, so I'll keep you posted.

Tuesday, April 7, 2009


Well, Stacey was writing about this the other day and then today an episode of Gilmore girls addressed the same topic, so I'm going to write down as much as I can about discipline. I need to be clear--this does not come from disciplining my child, but rather from my experience as a classroom teacher. I've taught many ages either as a full-time teacher or as a substitute and I've worked with all types of students as well. I can't promise that these things will work for everyone, but I can say that they've worked for me and I learned from some of the best.
First and foremost I want to say that all children want discipline. This sounds ridiculous, right? I clearly remember getting into fights with my mother about her rules. Kids do want discipline, though. In my years as a teacher I worked with a lot of kids whose parents had little or no rules and these kids are literally thirsty for someone to care about them and what they're doing.

There are keys to discipline, though. Discipline should always be fair, consistent, and respectful.

In order for discipline to be fair, the expectations need to be stated up-front. The age of the child plays a part here. If you're talking teenagers, then contracts or written rules are fine. If you're talking about a young child then "mommy said don't do that" should suffice. With younger children, warnings are OK, but don't get into the habit while where you threaten, but never follow through. A great way to handle this is to say, "Peyton, I'm warning you to stop screaming. If you keep screaming then you're going to end up in time out. This is the only warning I'm going to give you." It's up to you how many warnings you want to give, but keep it consistent.

Which leads to consistency. Follow through and discipline consistently. Letting things slide today will lead to a major meltdown in the future.

The final component to discipline involves respect. You have to do everything in your power to eliminate emotion on your end. If your child colors on the walls or even breaks curfew, they're not doing it because they hate you--they're experimenting. If you respond with anger, then it changes the dynamic. Try to think of it as a business transaction--you colored on the walls, so you sit in time-out for a certain number of minutes. It's not about hatred or anger or disrespect. Children are testing boundaries and your job is show them where they are. Don't make things personal. If your child stays out all night and gets drunk or accidentally cuts down your prized Jade bush, that doesn't make them stupid, or lazy, or arrogant, so don't say that they are. Criticize the action and not your child.

Some final thoughts in no particular order:
  • Don't discuss something while you're administering discipline. It's a transaction--you need to complete it and keep going. If you spend time talking about it, examining what happened, etc. then you are awarding them with attention. These kinds of things can happen after, but not at the time of a problem.
  • Eye contact is huge. If your child is begging you for something then say no and look away--this effectively ends the conversation.
  • If you do lose your cool and yell and scream then make it a point not to hold a grudge. Move on. Your children need to know that they are loved above all.

I feel like a complete ass writing about discipline, but this stuff has worked for me time and time again, and maybe there's something in here for someone else. Please ignore me if you need to!

But. . . if I didn't do a good job at explaining then please leave me a question--I'll answer as best I can.

Monday, April 6, 2009

So Much to Say

It's been a week since the last time I posted and the thoughts are piling up in my brain like a like a traffic jam. Rather than post one long post, I'm going to try to get out a couple of posts this week and get it all out of my system.

I guess I'll start with an easy one and give yet another report on Charlie's ears. We went for a follow-up to make sure that his ear infection is completely gone and there's still fluid behind one of his ear drums. Doesn't appear to be causing him any pain, but this can affect his hearing, so it's definitely a concern. It's a really big concern for us because Charlie's vision is poor, so he really uses his hearing to compensate.

We go back to the pediatrician in two weeks and if the fluid is still there then I have a feeling we're going to be headed to the ENT. Can you feel my excitement?

One other thing, I posted an article I'm especially proud of over at Blissfully Domestic. It's something that I think many parents would get something out of, so check it out!