Wednesday, April 29, 2009
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
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
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
Thursday, April 16, 2009
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:
- He's having drainage issues with his shunt and that's affecting his balance.
- He's having a growth spurt and his muscles aren't able to keep up with the demand.
- 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
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
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
Tuesday, April 7, 2009
- 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
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!