Worry

So. . . I've already mentioned the problems we've been having with Charlie and the tantrums. Well, I've been really diligent and we're having less, but the Hubs and I are starting to wonder if maybe it's something more than the terrible twos.

You see. . . he's never inconsolable. . . for long. That was the big watch word when they discharged us is the very beginning--inconsolable. And we've been very good about bringing him in when it gets like that.

But it does seem a bit weird to us that kid who was formerly a human beam of sunshine. A child who is entertained by a particularly musical paper crinkle and who jumps for joy at the sound of his relatives' voices is suddenly less so. I find myself apologizing a lot because he's "tired" or "not in the mood" and that's just so strange.

Tonight was another mega-blow up. Night time has been a little tough, but tonight we stayed late at my MIL's house watching The Closer and when we got home we put Charlie straight to bed. Big mistake. The tantrum went on and on and finally we pulled him out of bed, did the evening routine two hours late, and put him in bed. Still rough, but better. It worried both of us, though. So the Hubs and I sat down tonight and googled all sort of things with regards to his little brain and we came up with this very interesting statistic: %30 of kids who experience shunt failure have mostly behavioral symptoms. Not the throwing up, the seizures, and the lethargy that they warned us about. At the end of last month the neurosurgeon adjusted Charlie's shunt to a setting that he preferred.

So tomorrow we're going to hit the ground running. See if we can get an appointment with the neuro for Wednesday and if not, we may just take our happy asses down to the emergency room and hang out until we get some service.

Could it be the shunt? Maybe. It could also be totally normal childhood development. I don't normally complain about having a kid with special needs, but at times like this I would LOVE to know someone else in the same position. Someone I could call on the phone to see what they think. But for now. . . we'll just worry.

About That Bathroom

I still haven't gotten my camera back, so I had to take all new pictures with a camera my SIL lent me, so sorry for the delay. Here's the skinny: the bathroom is plain, 1989-fabulous. There's nothing horrible, but it definitely needs some updating. You've seen the horrible towel bar and the rest of the accessories are pretty much the same except without the bizarre bend in the middle.

Everything in this bathroom belonged to the previous owner. I never found my own shower curtain post-move, so we just made do with what we had. I didn't replace this curtain til about five minutes ago and above the toilet is actually a knick-knack rack with little figurines of nekkid babies taking baths.

This is a picture of the bathroom we when we looked at the house--we've been using that shower curtain.

I don't have a ton of money, so I'm not doing any major renovations. I could do the floor, but I don't want to have to redo it later, so I'm ignoring it. My game plan is new accessories and paint. In an ideal world I'd redo the whole thing in a 1920's theme--claw foot tub, and hex tile on the floor. Since I can't have all that, I'm going to get what I can.

I bought this towel bar at target--I liked the look.

I'm going to paint the plain wood vanity and change the knobs.

Max feels that his rear end should play a part in all household activities.

I'm going to take down the wall paper border and paint the walls a brighter shade of white--right now they're a very light blue/gray color. I'll probably scrape the ceiling while I'm up there and I'm also going to take down the faux stain-glass window.

I'm going to replace the nasty toilet paper holder, the switch covers, and hopefully the mirror.

Sorry for the sideways pic--my SIL's camera doesn't auto-correct like mine does.

I'm going with a dark blue and white scheme.

I'll be trying to update on my progress every Monday!

Fun Fact Friday

The fact is. . . I have no facts today. What I do have are three opinion questions and I'd love for you to answer them.

1. We need a new front door knob/lock combo. There's a fun fact for you. We ordered a new one six months ago and the bizarro woman we bought it for, never actually ordered it. We didn't pay for it, but still . . . how hard can it be to place an order? Anyway, I've narrowed it to two choices. To describe my house, it's got a big front porch and we live in a "historic district" so many of the houses are about one-hundred-year-old summer cottages that fancy-pants New Orleanians used to have. Plain, but Victorian inspired. Our house is actually newer (1988 or so), but designed to fit in with the rest of the neighborhood. My thoughts are either:
A.
B.
On the interior we're going with a crystal knob because I have always, always wanted one. I'm not sure what finish we're going to get. I'm leaning towards a brushed nickel, but my Hubby prefers the rubbed brass. We'll see.


2. What do you think makes a nice present for a second wedding? A friend of mine is re-marrying and I'd like to get him and his new wife a little something. I don't think they NEED anything per se, but I'd like to at least acknowledge the big day. Any ideas?

3. Would you go to someone you know who's a dentist? I have a friend, we met my sophomore year of college and she's a dentist. I made an appointment at her office, but I made it with the other dentist. I thought it would be weird having her look at my plaque and whatnot--what do you think? Am I over-thinking?

So, answer all three or just answer the ones you feel like answering--I'd love your feedback!

Again With the Discipline

Up until about three months ago, Charlie was basically a happy-go-lucky kid. He rarely complained, rarely cried, and almost never screamed.


But as I mentioned before, things are changing and I'm finding myself running to keep up.



Charlie has an opinion about everything these days: nap time, bed time, therapy, music, videos, and toys. At this point Charlie has two ways of expressing himself: delighted shrieks and horrendous, gut-wrenching sobs. I can take the shrieks, but when he cries it feel like someone is ripping out my stomach. I CAN'T TAKE THE SCREAMING.


At first glance you'd think that he was in some kind of pain--he's that loud and real tears run down his chubby little cheeks. My mind races--is it his shunt? a seizure? reflux? But no. It's just a run-of-the-mill toddler tantrum. He can't talk, so I can't tell him to "use his words," so I'm working on two major concepts:

1. Screaming will get you nowhere.



2. Ask nicely.
   

At this point, for me, tone is everything. I can usually figure out what he wants, but I can't take the screaming. I can't. I keep reminding myself that this is normal behavior all the while feeling like the worst mother in the world when I ignore my child's screams. Gah.

So, when he screams for a video, I tell him to ask nicely. If he changes his tone to something less shriek-y then I put the video on. If he continues to scream, then I put him in his bed and let him scream until he's finished.

I'm also going to spend this weekend trying to put a communication board within easy reach--I figure it must be frustrating to not be able to talk.

Meanwhile, my MIL has adopted two Manx kittens and they are just about the cutest things ever. I keep going over to her house just to play with them. Charlie finds them intriguing, but then he touches them and find that they are entirely too fluffy--YUCK!

Jake

Emma

So. . .

I had a big post planned about my bathroom--I know, you're riveted, right? I am positive that you want to hear all about my ghetto towel rack and linoleum floors. But sadly, I left my camera at my in-laws and am unable to write said post. But stay tuned, because, hello? Who doesn't want to hear about another person's bathroom decor? For the record--this towel bar is an endangered species:

Fun Fact Friday

It's that time again!

I'm calling today the Middle School Edition

1. I learned how to type in the sixth grade the old-fashioned way: stickers on the keys. I can still type without looking at the keyboard.
2. I used to freak out my students by looking up but still typing.
3. I got asked to my first dance in seventh grade--the Valentine's dance at school.
4. We met there and he ignored me the entire night--good times.
5. I wore a red t-shirt,white, tight-rolled jeans, and Reebok high tops.
6. I broke my ankle in the eighth grade.
7. I was trying to do a high-kick in cheer leading practice, I stepped on it wrong, and crack.
8. When I told the cheer leading advisor it really hurt, she told me to stop whining and put some ice on it.
9. I got my first two C's in middle school--one in Spanish and one in Intro to Physics.
10. I never took physics again--not in high school or college.
11. I've managed to get on fine without it.

Shakin' Things Up

I've been feeling freakishly optimistic these days. I probably haven't mentioned it, but the lady across the street is an honest-to-god Shaman. I'm not sure I believe in shamans, but she's also a baby lover and she met Charlie and I "allowed" her to communicate with him mostly because I was completely curious. I mean, people pay hundreds of dollars to work with her, and she offered to do something for free--who could resist?

Anyway, she consulted him and told me that one of his purposes is to teach me to be less cerebral and to just trust my instincts. So. . . that's what I'm doing. I'm trying to question myself less and just go with my gut. What the hell, right?

I'm pretty sure that my optimism also has to do with how well Charlie seems to be doing. I'm simply in awe of how far he's come.

Now, I'm going to do the ultimate mommy-blogger thing and post a few videos--nothing long, I promise!

Here's a picture of Charlie trying out the quadraped position. He sometimes gets himself into this position, but so far he just goes up and comes back down. I am hopeful, however, that one day this will lead to something more.



Here's another video of Charlie throwing a tantrum because he wants to watch his Baby Signing Time video. He also happens to be standing up and not leaning on the couch. He looks like an honest-to-pants-real-life toddler. I love that is ways I can't explain.



So. . . I'm feeling good. What more can I say?

Evolution of a Painting

So I showed you the beginning of Melanie's painting a few posts ago. Here it is again if you missed it:

Then I added lettering with stamps in the background. Melanie said she wanted the image to be Morning Glories, so the background says, "what's the story, Morning Glory?" which I think is an album title or something, but it was just the first thing I thought of when thinking about Morning Glories. When the painting is finished you can't really read the text--it's just there for background.

Then I added some blue circles of paint with the top of a tube of craft paint (no worries, no craft paint was used in the making of this product--only professional grade).

After the background was finished, I painted on the letter M and the Morning Glories. I made the M a little more mature since this wasn't for a kid's room. I'll confess that I don't know a whole lot about Morning Glories, but the Internet was ripe with sources images and I'm pretty pleased about the way the whole thing turned out.

It still needs varnish and my Hubby will have to put hooks in it for hanging, but she's done!

Please remember that you can purchase your very own custom alphabet canvas in my shop. The cost is forty dollars and believe me, a big chunk of that goes to high quality canvas, paints, and sealants--no junk here!

Fun Fact Friday

1. The paying job I ever had was working in a craft store.
2. That's where I learned about Modge Podge, which is still one of my all-time favorite craft/art materials.
3. My second job was working at a toy store.
4. After about an hour, you can't hear all the chirps, buzzes and bings of the toys any more.
5. It was the year of the Tickle Me Elmo craze.
6. Personally, I think that weird doll is completely perverted.
7. I also had to stand in the mall giving demonstrations of products.
8. Mostly, I stood around holding a kid's tape recorder with a microphone singing Christmas songs.
9. Little groups of children with gather around me and I would stop and pretend to interview them.
10. Luckily, no one I knew ever came to that particular mall.

Birthday Pics

Well, there aren't too many party pics, so I'll put up a few and also some cute ones taken recently. There are more in my Flickr stream if you're into that sort of thing:

I Took it Down

I took down the post I wrote last night. I was annoyed by something that I read about fake bloggers. But. . . I guess I came across unwelcoming to visitors to my blog and I don't want that, so down it goes! Guests welcome!

Two

Today Charlie is two. On the second day of his life they wanted to talk with us about "removing support." and yet here he is, two years later, continuing to grow and thrive.



For his second birthday I wanted everything to be low-key. I told only family to come by any time after noon. Still, pretty much everyone showed up at once and it was too noisy for Charlie. We let him play in his room for most of the party and when we took him out into the noisy crowd, he had a two-year-old quality melt-down. I think the lesson for next year is that Charlie can stay in his room as much as he wants on his birthday.



Two is a big age for a kid with CP--if your child is sitting up by their second birthday, then chances are good that they'll one day walk. Officially, Charlie can get his hands off the ground for about two seconds. I have no idea where that puts us on the spectrum. Charlie's PT and I both feel pretty certain that Charlie will one day walk with assistance--this could be canes or a walker. A wheelchair isn't out of the picture by any means--but it's not a guarantee either.

Despite his physical limitations, I can see Charlie getting smarter and more inquisitive by the minute. His favorite thing to do is crawl around on the floor of his room playing. He's figuring out how to get himself into some silly predicaments and I'll find myself running to keep him from crawling under the bed or wrestling things away from him that I placed too close to his high chair.



He will eat almost anything you feed him. He doesn't care for carbohydrates unless they come in the form of spaghetti-ohs. He loves anything with marinara. He also loves eggs, green beans, fried chicken, and beef enchiladas. We still feed him most of his his meals, but he's good at picking up things off of his tray and feeling them to himself. Things in bowls are a different story--he drops his spoon, picks up the bowl, and throws it back like a drink. Food goes EVERYWHERE! He's getting pretty good and drinking out of a regular cup, but he really likes to splash the water, so that's a bit of an issue.



As far as toys go, I think he owns every toy for his age range that they sell at Target. He's great with buttons and levers and switches. If it doesn't light up makes music, though, he finds it boring. His new obsession is the Baby Signing Time DVDs, which we watch on my lap top while I'm doing therapy on him. These videos do bring out a bit of the terrible twos in him, though. If he sees anyone looking at the laptop he is convinced that they are watching Baby Signing Time without him and major whining will ensue. If he's tired, he may even cry about it, which is very un-Charlie. He seems to like videos that are mostly music and songs, so I'm thinking about investigating the Wiggles too.



He's a big boy now, and I'm going to have to stop calling him "the baby." I know this next year is going to be full of exciting new stuff--I can't wait!

PS: I'd like to put up some cute birthday pictures, but I haven't gotten a chance to put them on the computer yet.

Real Quick

Just read a comment from Toni that reminded me that I hadn't updated the new info I had on the seizure situation. Come back tomorrow if you're looking for the long, gushy post about how my baby just turned two.

The doctor's office called and said that she wouldn't be back until next week, so I went over to the hospital and paid a dollar to get a copy of the report myself. Upon reading it, I discovered that a year ago he had one area of his brain that misfired. This time, he had a couple of areas. This doesn't mean that he had a seizure--it means that those areas are areas that COULD cause seizures. He didn't have any seizures during the test or anything like that.

I'll see what the doctor says when she calls, but this just seems like more of the same as opposed to something new to be worried about. In the mean time, I haven't seen any more of those staring spells, so maybe I was imagining it/freaking out for no reason.

Fun Fact Friday

1. I own all ten seasons of Friends on DVD and I can quote most of it. I've also been known to compare other people's real-life situations to things that have happened on the show.


2. My drink of choice is rum and diet coke. I'll drink other things, but that's my go-to.


3. I'm also a really big fan of coke icees.


4. In college I would ask people if they wanted to go for an icee.


5. Rum in a coke icee is pretty good, but the rum does melt it a bit.


6. When I was pregnant I was ob-sessed with grape sno-balls.


7. I'm pretty sure grape sno-balls are the reason why Charlie weighed almost eight pounds when he was born three weeks early.


8. My favorite candies are Gob stoppers, Runts, and Skittles. The Willy Wonka people have changed Runts, though, and they aren't the same any more.


9. I much prefer pure sugar to chocolately candy.


10. Are you hungry yet?

This is the beginning of the painting I'm doing for Melanie who won my give-away. She picked a black and white color scheme, which I've never worked with before.

Went to the Doctor and the Doctor Said

Well.

This week's visit wasn't nearly as uplifting as last week's, but at least some of that is just because our physiatrist isn't quite as warm and fuzzy as some of our other doctors.

I guess that I should say that it wasn't a BAD visit, but it just wasn't as great as last week. He was mostly concerned with Charlie's right hamstring. It's tighter than it was six months ago. I'm not terribly concerned about this because Charlie just had a growth spurt and this always throws things out of wack. With good stretching, I'm sure we'll have his range of motion back ASAP. Meanwhile, Doc is suggesting oral baclofen. The PT wasn't loving it and I'm not either, so I think we're going to pass. We've worked really hard to strengthen Charlie's neck and trunk and I just can't see giving him a muscle relaxer. For now, I think we're going to do nothing; we check back in with the doc in three months and if we won't agree to baclofen he said that he would be willing to consider botox.

Other than that, his tone is fine, his hips look good, and there are no signs of scoliosis. It did bother me that the doc seemed relatively blase about all of Charlie's other improvements and didn't ask me very many developmental questions. But, maybe he didn't feel the need. I don't know.

The only negative of the day was when the doctor asked about seizures. He asked if Charlie had had any major seizures and I said no and then we looked in the computer to see if his EEG had been read yet. Well, it had been read and it looks like he's having more epileptic activity than before. Well, I haven't heard from the neurologist yet, so we don't really know what that means. Charlie hasn't had any big, crazy seizures, but he's had a couple of zoning out moments that could have been absence seizures.

So, I'm waiting to hear from the neurologist and trying to decide how worried to get. I keep bouncing all over the place. Seizures aren't, for the most part, dangerous and clearly Charlie is doing well overall. I guess I just have to wait and hear from the doctor. Meanwhile, I'm making myself nuts. Argh!

PS: Blogger is claiming that "wack" is not a word--clearly they forgot about the eighties;)

Hear That?

If you hear someone jumping up and down with excitement, that would be me. You see, Charlie has finally become a child who watches videos.

I'm sure there are plenty of people who don't see what the big deal is. I'm equally sure that there are those who are horrified that I'm letting my two-year-old watch TV.

There's a little twist to this story, though. You see, I do therapy on Charlie each day that requires him to be pretty darn still. This has not been easy and I've had to resort to doing most of his therapy while he sleeps. This meant that almost all my mommy-time was eaten up by therapy.

A new day is dawning! Charlie is in LURVE with the Baby Signing Time Videos. I pop one in and he's completely still for twenty-seven minutes. Plus, I don't feel too bad because they are educational. Every once and awhile he looks like he's trying to do one of the signs, which is a bonus.

In other happy Charlie news, he babbled for the first time this morning. I haven't heard it again, but once is better than not at all. Also, he can officially crawl backwards. This is a bizarre feat and I really do need to take a little video of it because it's weird.

My MIL brought over a fragrant vine for our yard and I love the way it looked curling over my new note cards--lovely! These notes and others listed in my shop now.