I am not exaggerating when I say that I typed up four pages of notes for the grandparents who will watching Charlie. This includes his schedule of daily meds/therapy rotations/etc, his medical history, and emergency contact information. A note for those of you starting the special needs journey: type up your child's medical history and keep a copy with you. That way, you can just hand it to the hospital people if you have an emergency situation. I can't remember where I read that, but it is SO helpful.
I have nothing packed. I haven't got a swimsuit or a delicious pile of paperback novels. I am NOT prepared. Tomorrow I will try to run out and get these things, but I've also got to get one of Charlie's prescriptions refilled and we have an appointment with the opthamologist in the big city, so it may or may not get done. Hello? I haven't been to the opthamologist in two years and he's been twice in the past year. I have GOT to start taking better care of myself. No matter about the stuff--I have a couple of books on the shelf I could read. That, plus some rum and diet coke and I'll be good to go. Honestly, I just like sitting on the balcony reading more than anything else.
Luckily, my MIL lives down the street, so she'll be checking on the house, watching the animals, etc. She and my parents are going to split the time taking care of Charlie, which will be interesting to say the least. I'm going to do a little cartoon evil cackle when I get back and they're completely whipped.
- - - - - - - - - - - - - - - - - - - - -
We were in the big city today to see Charlie's very fancy cardiologist. If you're new to the party, then let me tell you that Charlie had an un-diagnosed heart arrhythmia that almost killed him. All of his current medical problems stem from this. First we did an EKG, which is standard operating procedure. Then, they said we needed an echo to look at the hole he has in his heart. At this point I complete freaked out because I had NOT been worrying about the hole in his heart. I felt certain that forgetting to worry was going to bite me in the ass. I was wrong. The hole had closed on his own as they had predicted. Also, Charlie was eerily fascinated by the glowing TV showing curious George. Other than trying to eat the nurse's hand, he was quietly transfixed by PBS.
The doctor is actively interested in seeing if Charlie still needs to take medicine for his heart arrhythmia. Many children outgrow tachycardia, but Charlie was especially attached to it before, so there is a chance he'll require surgery when he's older. To give his heart a little test run, the doctor wants to stick a probe down his esophagus to see if they can cause him to go into tachycardia again. I googled it, and the procedure is called Esophageal Electrophysiologic Procedure. It doesn't sound fun, but I think we can handle it.
Additionally, Charlie kicked complete ass in therapy this week, which is just what I needed to see.
This may be my last post for about a week, so if you don't hear from me it's because I'm enjoying the sand and the sun (or, alternately, the shade, cable TV, and a rum and diet coke).
Thursday, June 26, 2008
Wednesday, June 25, 2008
My Rules
Here's one of my rules for life:
If you're in a line six-people deep, and someone opens up a new register, the polite thing to do is to allow the next person in line to go over to that register. It is NOT polite when the last person drag-races their cart over in front of everyone else. Also, if you're going to be doing these types of things then please, please do not be buying craft supplies for vacation bible school.
If you're in a line six-people deep, and someone opens up a new register, the polite thing to do is to allow the next person in line to go over to that register. It is NOT polite when the last person drag-races their cart over in front of everyone else. Also, if you're going to be doing these types of things then please, please do not be buying craft supplies for vacation bible school.
My Little Genius
Well, Charlie knocked the socks off his instructor this morning. One of his new favorite toys is this piano. One of it's many features is a setting where it plays a melody and then stops. The child must then hit the piano again to keep the melody going. It's great for tummy time because he picks up his head and hits the key. Today we were using it sitting up with the instructor. She was SO impressed with how quickly he knew he had to hit the piano again. The song only had to miss one note before he noticed. She said she'd never seen a baby do that before.
OK, so I didn't think it was that big a deal, but the instructor was impressed, so I'm excited. I'm so proud of my little man!
In other news, he can now point (I'm using this word loosely) to his toes, tummy, and mouth. He's a genius, right?
**I'm going to edit this to say that he touches those things for the instructor, but I'm having no luck getting him to do it for me!**
OK, so I didn't think it was that big a deal, but the instructor was impressed, so I'm excited. I'm so proud of my little man!
In other news, he can now point (I'm using this word loosely) to his toes, tummy, and mouth. He's a genius, right?
**I'm going to edit this to say that he touches those things for the instructor, but I'm having no luck getting him to do it for me!**
Sunday, June 22, 2008
dorky mom stuff
We're teaching Charlie how to clap. He loves the noise that it makes, but he hasn't quite figured out the motion. Watch this little video and you'll see that he knows he has to pull apart, but then can't quite figure out what to do after that. Please ignore my dorky mom-ness--it's part of the job.
Friend Stalking
Ok.
That is never a good beginning. It means I'm up to something.
Here's the thing.
There's a young couple that moved in down the street from us right around the time we moved in. I see them at a lot of different community things. I'd really like to meet them because I think it would be nice to know some people our age in our neighborhood. There are a lot of old people here who came here to retire. We're not exactly in a young, hip neighborhood (yet).
The problem is, I see them all the time because I have to drive past their house about four times a day. They, however, probably don't know that we exist since they don't have to drive past our house for anything. That's just the way our neighborhood is set up. What to do? I'm considering just going up and introducing myself the next time I see them. Something along the lines of "Hi, we live down the street--I see you cutting your grass all the time." Would it freak you out if someone did that to you? Would I sound like a stalker? I wouldn't mind getting to know one of the few couples in our neighborhood that aren't retirees, but I don't want to come off like a psycho either.
What to do? What to do?
Give me some advice.
That is never a good beginning. It means I'm up to something.
Here's the thing.
There's a young couple that moved in down the street from us right around the time we moved in. I see them at a lot of different community things. I'd really like to meet them because I think it would be nice to know some people our age in our neighborhood. There are a lot of old people here who came here to retire. We're not exactly in a young, hip neighborhood (yet).
The problem is, I see them all the time because I have to drive past their house about four times a day. They, however, probably don't know that we exist since they don't have to drive past our house for anything. That's just the way our neighborhood is set up. What to do? I'm considering just going up and introducing myself the next time I see them. Something along the lines of "Hi, we live down the street--I see you cutting your grass all the time." Would it freak you out if someone did that to you? Would I sound like a stalker? I wouldn't mind getting to know one of the few couples in our neighborhood that aren't retirees, but I don't want to come off like a psycho either.
What to do? What to do?
Give me some advice.
Saturday, June 21, 2008
Alternatives
I briefly mentioned alternatives in my last post, and today I'm going to expound on that a little.
When your child has cerebral palsy or some other type of brain injury, the medical establishment is pretty frank about recovery--there isn't any. You can do everything you can to help your child work with the body they have, but in this day and age there is nothing to be done about brain damage. They are the most hopeful about young children, whose brains are especially "plastic" and known to overcome some pretty significant brain damage.
So, when the establishment doesn't give you a lot of options, you investigate the alternatives.
Glenn Doman wrote a book What To Do About Your Brain Injured Child and that was probably one of the first things that I looked into. The book was originally published in the seventies and The books outlines techniques for improving all areas of deficit in a child. After reading the book and also reading a lot of input from parents who have tried the methods, I decided the following: The Glen Doman program has had positive results in the areas of cognition. Many, many children who leave his programs can read and I think that's pretty amazing. I have also heard several parents speak highly of the academic programs. I have begun my own craptastic version of the program with Charlie as outlined in the book Teach Your Child to Read. I have been both surprised and pleased with how interested Charlie seems to be in the word flash cards. He looks carefully at each and every one. I own another book in the series about teaching math, but I'm still trying to get in enough sessions of the reading each day (it's real quick, but I am forgetful).
In my former life, I spent three years teaching children with Dyslexia to read. The methods of Glenn Doman's system are quite similar to the methods for teaching dyslexic children: repeated exposure. Ms. Shaywitz gets very scientific and uses MRI's to prove it, but the point is that if you expose children to something enough, their brains can actually create neural pathways that didn't exist before. That's pretty freakin' incredible.
So, we've decided to adopt the Glen Doman system for education. I have not, however, been convinced by Doman's methods for physical rehabilitation. He doesn't have the same success rate, and quite frankly, the theories don't make sense to me. I'm on a cafeteria plan--I'll take the parts that work for me and leave the rest.
Next time I discuss alternatives, I'll talk about the physical stuff. I'll probably do a post about nutrition and spiritual stuff as well.
When your child has cerebral palsy or some other type of brain injury, the medical establishment is pretty frank about recovery--there isn't any. You can do everything you can to help your child work with the body they have, but in this day and age there is nothing to be done about brain damage. They are the most hopeful about young children, whose brains are especially "plastic" and known to overcome some pretty significant brain damage.
So, when the establishment doesn't give you a lot of options, you investigate the alternatives.
Glenn Doman wrote a book What To Do About Your Brain Injured Child and that was probably one of the first things that I looked into. The book was originally published in the seventies and The books outlines techniques for improving all areas of deficit in a child. After reading the book and also reading a lot of input from parents who have tried the methods, I decided the following: The Glen Doman program has had positive results in the areas of cognition. Many, many children who leave his programs can read and I think that's pretty amazing. I have also heard several parents speak highly of the academic programs. I have begun my own craptastic version of the program with Charlie as outlined in the book Teach Your Child to Read. I have been both surprised and pleased with how interested Charlie seems to be in the word flash cards. He looks carefully at each and every one. I own another book in the series about teaching math, but I'm still trying to get in enough sessions of the reading each day (it's real quick, but I am forgetful).
In my former life, I spent three years teaching children with Dyslexia to read. The methods of Glenn Doman's system are quite similar to the methods for teaching dyslexic children: repeated exposure. Ms. Shaywitz gets very scientific and uses MRI's to prove it, but the point is that if you expose children to something enough, their brains can actually create neural pathways that didn't exist before. That's pretty freakin' incredible.
So, we've decided to adopt the Glen Doman system for education. I have not, however, been convinced by Doman's methods for physical rehabilitation. He doesn't have the same success rate, and quite frankly, the theories don't make sense to me. I'm on a cafeteria plan--I'll take the parts that work for me and leave the rest.
Next time I discuss alternatives, I'll talk about the physical stuff. I'll probably do a post about nutrition and spiritual stuff as well.
Thursday, June 19, 2008
More
Yesterday we had three appointments. Today we had two. It's been a busy two days, and in addition to that, my husband had me running around doing things for him because he's been working in Baton Rouge all week. That's why yesterday was so nuts. Also, I knew we were gearing up for another big day, and in my heart or hearts I wanted to lie in bed til eleven.
Anyway.
We tried out Theratogs today--both the PT and OT came and one stayed lated and the other came early, so they could work together. He did really well, and seemed to like the support he was getting. He tolerated a lot of fiddling and was fine as long as we kept some music playing. They were still having some issues getting his pelvis the way they wanted, but they were missing the literature on the pelvis, so they may get that worked out too. I could already see a difference in his head control with them on, so that's good.
In a rare moment of serendipity, I called the doctor and secured a prescription for Theratogs in under an hour. One phone call and one hour. I think that's probably a record for getting something done via the medical establishment.
Other than that, I realized today while perusing my day-planner that I'm supposed to be leaving for a vacy to the beach in one week and two days. I don't even have a swim suit. Oh well, a week at the beach in a good thing no matter how you slice it. For those of you that are wondering, no, Charlie won't be going with us. It's an extremely long drive and it would just be too much for him. Plus, I think he's a little young to be spending a lot of time in the sun. So, a week without the baby. Charlie and I will be taking a vacation with my family in September to New York City! I'm so scared to fly that I get nervous just writing about it, but the tickets are bought. Add to that a possible girl's weekend to Houston and a trip to Arkansas in October, and I feel like a regular jet-setter or something.
Suddenly, the boring, stay-at-home mom thing has taken a turn for the hectic.
Anyway.
We tried out Theratogs today--both the PT and OT came and one stayed lated and the other came early, so they could work together. He did really well, and seemed to like the support he was getting. He tolerated a lot of fiddling and was fine as long as we kept some music playing. They were still having some issues getting his pelvis the way they wanted, but they were missing the literature on the pelvis, so they may get that worked out too. I could already see a difference in his head control with them on, so that's good.
In a rare moment of serendipity, I called the doctor and secured a prescription for Theratogs in under an hour. One phone call and one hour. I think that's probably a record for getting something done via the medical establishment.
Other than that, I realized today while perusing my day-planner that I'm supposed to be leaving for a vacy to the beach in one week and two days. I don't even have a swim suit. Oh well, a week at the beach in a good thing no matter how you slice it. For those of you that are wondering, no, Charlie won't be going with us. It's an extremely long drive and it would just be too much for him. Plus, I think he's a little young to be spending a lot of time in the sun. So, a week without the baby. Charlie and I will be taking a vacation with my family in September to New York City! I'm so scared to fly that I get nervous just writing about it, but the tickets are bought. Add to that a possible girl's weekend to Houston and a trip to Arkansas in October, and I feel like a regular jet-setter or something.
Suddenly, the boring, stay-at-home mom thing has taken a turn for the hectic.
Wednesday, June 18, 2008
Brain Dump
I had one of those days where I got earlier than usual and then ran all around town in the heat AND I had to use my brain. To finish this day I had a margarita with dinner, so if this post makes no sense, I apologize in advance.
We went to see Charlie's pediatric physiatrist today. He wanted to see Charlie around his first birthday, so he could get some hip x-rays, and just to check-in.
We discussed his reflux: Charlie has lost some weight. It's difficult to know exactly how much since he's weighed at many different offices, but still. . . We have switched to the toddler formula and maybe we need to go back to the baby stuff. The doctor recommended trying Similac AR, which is thickened with rice cereal. Rice hasn't been great for his digestion, but I may go back to thickening his bottles full-strength and see if that help. I feel like it comes in waves--a few good days and then some bad. I've also ordered an herb called Slippery Elm, which is supposed to soothe the digestive system.
Tone: I've been seeing this happen over time, but no one ever told me that this could happen. Charlie's tone is getting looser and looser. This is strange because many children get tighter and tighter. I think that this loosening is part of the reason he's getting reflux now (he didn't have it when he was younger and I have the tests to prove it), and why he stopped prop sitting. The doctor even commented on it this time. He said the only thing that feels tight are his hamstrings and hip flexers. Everything else feels really loose. I'm glad he's not spastic, but I'm not sure what to do about being too floppy.
His Hips: His hips seemed fine to the doctor, but he ordered the x-ray as a precaution. We've been really pro-active with the hip stuff, so I hope we're OK. The doctor said he'd check out the x-way, and if anything concerned him, he would call.
Development: Charlie hasn't met any new developmental milestones since March. It's not like we're at a stand-still--he is making progress--but a lot of it in cognitive, social, and fine motor. He's still dramatically behind in gross motor. Why ARE all the "milestones" in gross-motor? I mean Charlie has been holding his own bottle for about a million years, but no one seems to care about that. They're all about the sitting up and the rolling.
Eye rubbing: He told me to try Zyrtec and if that doesn't work, than we can try some expensive eye drops.
The doctor congratulated me on my excellent home program and told me that he thinks I'm doing everything I can.
So, I'm doing everything I can in the traditional sphere of medicine and rehab. Now, I'm starting to wonder if their are alternative treatments I need to pursue. I've done a lot of research, and I think I know what I would go for, but money is always an issue. Oh, what to do? For now, I think I will lie on the couch and watch Friends until I fall asleep.
We went to see Charlie's pediatric physiatrist today. He wanted to see Charlie around his first birthday, so he could get some hip x-rays, and just to check-in.
We discussed his reflux: Charlie has lost some weight. It's difficult to know exactly how much since he's weighed at many different offices, but still. . . We have switched to the toddler formula and maybe we need to go back to the baby stuff. The doctor recommended trying Similac AR, which is thickened with rice cereal. Rice hasn't been great for his digestion, but I may go back to thickening his bottles full-strength and see if that help. I feel like it comes in waves--a few good days and then some bad. I've also ordered an herb called Slippery Elm, which is supposed to soothe the digestive system.
Tone: I've been seeing this happen over time, but no one ever told me that this could happen. Charlie's tone is getting looser and looser. This is strange because many children get tighter and tighter. I think that this loosening is part of the reason he's getting reflux now (he didn't have it when he was younger and I have the tests to prove it), and why he stopped prop sitting. The doctor even commented on it this time. He said the only thing that feels tight are his hamstrings and hip flexers. Everything else feels really loose. I'm glad he's not spastic, but I'm not sure what to do about being too floppy.
His Hips: His hips seemed fine to the doctor, but he ordered the x-ray as a precaution. We've been really pro-active with the hip stuff, so I hope we're OK. The doctor said he'd check out the x-way, and if anything concerned him, he would call.
Development: Charlie hasn't met any new developmental milestones since March. It's not like we're at a stand-still--he is making progress--but a lot of it in cognitive, social, and fine motor. He's still dramatically behind in gross motor. Why ARE all the "milestones" in gross-motor? I mean Charlie has been holding his own bottle for about a million years, but no one seems to care about that. They're all about the sitting up and the rolling.
Eye rubbing: He told me to try Zyrtec and if that doesn't work, than we can try some expensive eye drops.
The doctor congratulated me on my excellent home program and told me that he thinks I'm doing everything I can.
So, I'm doing everything I can in the traditional sphere of medicine and rehab. Now, I'm starting to wonder if their are alternative treatments I need to pursue. I've done a lot of research, and I think I know what I would go for, but money is always an issue. Oh, what to do? For now, I think I will lie on the couch and watch Friends until I fall asleep.
Tuesday, June 17, 2008
Communication
In most relationships there are a couple of words that mean one thing to one person and one thing to another. Here are a few from my house:
For me, clean means rinsed with soap and water.
For my husband, it means rinsed with water.
Almost the same, but when I'm picking up a dish off the counter and saying, "Is this clean?" it's a big deal
For me, changing a diaper means taking it off and putting on a new one.
For my husband, changing a diaper means checking to see if it needs changing, regardless of whether or not you actually put a new one one.
This second one is how Charlie went ELEVEN HOURS in the same diaper. Granted, he was asleep for nine of them, but I said change it and my husband checked and deemed the diaper still good.
Charlie peed down his own leg, so I think maybe that was a bad call.
Ahhhh, communication. . . the cornerstone of any good relationship. . . or so I've heard.
For me, clean means rinsed with soap and water.
For my husband, it means rinsed with water.
Almost the same, but when I'm picking up a dish off the counter and saying, "Is this clean?" it's a big deal
For me, changing a diaper means taking it off and putting on a new one.
For my husband, changing a diaper means checking to see if it needs changing, regardless of whether or not you actually put a new one one.
This second one is how Charlie went ELEVEN HOURS in the same diaper. Granted, he was asleep for nine of them, but I said change it and my husband checked and deemed the diaper still good.
Charlie peed down his own leg, so I think maybe that was a bad call.
Ahhhh, communication. . . the cornerstone of any good relationship. . . or so I've heard.
Sunday, June 15, 2008
Tip For Life
Do NOT try to purchase a Father's Day Card on Father's Day. The pickins are slim. I had to choose between the sappy card addressed to Pa or the one in Spanish. I chose the one in Spanish and it ended up being completely dumb in translation. Go me! Next time I might skip the card--he really just wants to hold Charlie anyway.
Charlie got his first dip in the pool today. He got water splashed in his eyes about five seconds in, so he wasnt' too thrilled. Later, we tried letting him float on his back, but all he really wanted to do was nibble on his toes. Still, not a complete disaster. We have the whole summer to keep trying.
Friday, June 13, 2008
Para-dig-um (Paradigm)
There was a little boy at the physical therapy clinic today who had a broken finger. His grandmother was telling us how it happened.
I'll call the little boy Sam.
Sam is in the fist grade and has cerebral palsy. He needs a wheelchair or walker to get around. He's sweet and adorable, and communicates pretty well. Like a lot of CP kids, he's pretty small and his grandmother will often just hold him to go into places.
Two days ago she needed to go visit someone in the hospital. On the way out she stopped by some vending machines to get a drink. She placed Sam in the best chair for him--a high-backed chair with arms that was marked, "volunteer." She figured it wasn't a big deal since she was just buying a coke.
Well, the "volunteer" came over, chatted with Sam and then asked to have her chair back. Grandmother calls out, "I'll be over in a second to get him." I guess the volunteer didn't understand the situation because she reached out, grabbed Sam's hand and gave a good yank to "help" him out of the chair. Sam went crashing to the floor head first and broke a finger in the process.
Perhaps the role of volunteers is to create more hospital patients? Kidding!
I guess I'm just completely surprised that this person didn't realize that this child was disabled. When I saw him he had decent head control, but not great. He lowers his head from time to time. He has DAFO's on his feet. I can't believe she didn't notice any of these things.
Either way, I bet she's a lot less likely to make assumptions.
I'll call the little boy Sam.
Sam is in the fist grade and has cerebral palsy. He needs a wheelchair or walker to get around. He's sweet and adorable, and communicates pretty well. Like a lot of CP kids, he's pretty small and his grandmother will often just hold him to go into places.
Two days ago she needed to go visit someone in the hospital. On the way out she stopped by some vending machines to get a drink. She placed Sam in the best chair for him--a high-backed chair with arms that was marked, "volunteer." She figured it wasn't a big deal since she was just buying a coke.
Well, the "volunteer" came over, chatted with Sam and then asked to have her chair back. Grandmother calls out, "I'll be over in a second to get him." I guess the volunteer didn't understand the situation because she reached out, grabbed Sam's hand and gave a good yank to "help" him out of the chair. Sam went crashing to the floor head first and broke a finger in the process.
Perhaps the role of volunteers is to create more hospital patients? Kidding!
I guess I'm just completely surprised that this person didn't realize that this child was disabled. When I saw him he had decent head control, but not great. He lowers his head from time to time. He has DAFO's on his feet. I can't believe she didn't notice any of these things.
Either way, I bet she's a lot less likely to make assumptions.
Thursday, June 12, 2008
Vision, or a Lack of It
The funny thing is that in my head I knew that today's post was going to be called "Vision." The improvement that I've seen in Charlie's vision over the last few months has really been remarkable. Even his therapists have begun to notice it. Yesterday, two different people exclaimed that he was looking them when we went shopping--that is so much better than everyone telling me he's sleepy.
I combed back through my pictures and thought about comments that people have made. In March, he started to look at faces. By April, I could usually get at least one picture of him looking at the camera. Now, right after his first birthday, I'm seeing more and more looking around, making eye contact during play, and even looking at me at smiling in the morning. This is so incredibly rewarding. I really mourned his lack of vision more than anything else. You can tell so much from a person's eyes and when that component is missing, it's hard. As a parent, I had days where I wondered if I was connecting with him at all.
So, anyway, today's post was going to be all about the improvements I've seen and how happy I am about it.
Then, The Vision Lady came.
First, we talked Braille again. Le Sigh. Then, she got out the light box. He kept looking at it and looking at her. He was acting very happy about all the neat colors she was showing him, and kept doing his more sign. I thought this was great. Her concern? She wasn't sure his pupils were dilating enough. Ugh. Pupils have been examined by a doctor and dilate fully.
Then, she got all gloom and doom because he's rubbing his eyes a lot. I KNOW that this is a common feature in children with low vision. I am AWARE. I also know that my husband and his father both have major eye-funk problems. My FIL has been to the doctor twice and has to buy special eye-cleaning pads. My husband probably spends five minutes a day cleaning up his eyes and they're still gunky funky. He looks like he has eczema of the eye lashes. So, add that to the fact that Charlie has really been into exploring facial features--fingers up your nose, down your throat, exploring ears, trying to feel your eyes--and I'm just not ready to assume that this is vision related. It COULD be vision related, but I think it's important not to blame everything he does on his disabilities--sometimes there's a simple explanation. I told her so and then she started talking all about how he could lose his eyes. It's not like I'm LETTING him do it, woman. I was very firm and said "no" when he was doing it and then she says, "children hear 'no' a lot--you need to be more clear." AAAARGGGHHH. Talk to me about vision since that is apparently your specialty, but for the love of pants DO NOT tell me how to parent.
Then she said that his eyes didn't look that gooky to her. It took all the strength I had not to kick her ass.
Not to mention the fact that I'm not even sure she likes kids who are multi-disabled. I asked her how you teach a child who has vision problems how to self-feed and the first thing she said was, "well, my daughter didn't' have tone issues." WTF is that supposed to mean? Charlie can sit in a high chair, he can hold a spoon, he can put a spoon in his mouth. I'm wondering how these kids figure out that there's a bowl with food in it. Why do we need to talk about his tone? I'll deal with getting him upright and you just help me. What the hell is a vision service provider for if not to help me with stuff like that?
Sooooooo. . I didn't kill her, but by the time she left I just wanted to lie down and sleep until the whole situation just went away.
I just hate that these therapy sessions leaves me drained and depressed. I don't come away with ideas to implement in my home; I don't feel inspired. I feel helpless and the whole thing seems completely hopeless.
I've asked and she is the ONLY vision specialist in southern Louisiana. She's also the vision specialist in the schools, so I can expect to see a lot more of her in the future. We have a visit to the eye doctor in two weeks to see if Charlie needs glasses. He was far-sighted the last time we were there, so that may be on the agenda.
So, in summary: Was happy; now pissed. I may have to call in sick for our July session just for my sanity's sake.
PS: How cute is this kid?
Wednesday, June 11, 2008
Books Meme
I've been tagged by Stacey and Lord knows I need to talk about something besides the kid, right?
How many books have you owned?
I think it would be impossible to estimate how many books I've owned in the past. I spent a good part of my career teaching reading and had totes full of books when I moved here to Louisiana. I got rid of those plus about two other boxes full when I moved here. There are four-hundred and fifteen in my lovely, Craftsman-style bookcase and it's pretty full. That includes everything from cookbooks to professional books to decorating books to classics to teen novels. I've got it all.
Last book bought?
It's called Mixed Media Collage: An Exploration of Contemporary Artists, Methods, and Materials. I love mixed-media stuff--I don't make a ton of it, but I sure like to read about it.
Last book you read?
Well, I don't' really consider the one above reading--it's more like looking. The last book I finished was Harry Potter and the Deathly Hallows. Since then I've cracked open The Lost Estate which is supposed to be the French version of the Catcher in the Rye, but it didn't' really do anything for me. It's hard for any book to follow up ole Harry, though.
Five books that mean something to me.
This one is hard. I think I'll just list five books that I'd recommend to a friend.
The Cider House Rules. This is a book about abortion and I read it cover to cover in a fervor in college. I cared so much about the characters that I didn't' want it to end. It's really controversial, but sometimes good literature is.
Midwives. It's a trial book about a midwife who kills one of her patients. One of my friends said she couldn't read about those terrible women, but I found the story engrossing and once again, I was still thinking about it after it ended.
Feed. This is an adolescent novel, but I think it would be a good read for anyone. What the author does with language--or a lack thereof--is genius. I made my husband read this one just so we could talk about it.
A Framework for Understanding Poverty. Want to know why poor people do what they do? Read this book. It will change the way you view so many things. I read it for a graduate school class and later I worked at a school that was completely devoted to using the author's methods. It made for a compassionate and kind staff. I think anyone who works with the poor on a regular basis should read this and really think about it.
To Kill a Mockingbird. I'm the daughter of a lawyer. I grew up in the south. This was probably the first book I ever read where the ending wasn't tied up in a little bow in the end. It's good stuff.
How many books have you owned?
I think it would be impossible to estimate how many books I've owned in the past. I spent a good part of my career teaching reading and had totes full of books when I moved here to Louisiana. I got rid of those plus about two other boxes full when I moved here. There are four-hundred and fifteen in my lovely, Craftsman-style bookcase and it's pretty full. That includes everything from cookbooks to professional books to decorating books to classics to teen novels. I've got it all.
Last book bought?
It's called Mixed Media Collage: An Exploration of Contemporary Artists, Methods, and Materials. I love mixed-media stuff--I don't make a ton of it, but I sure like to read about it.
Last book you read?
Well, I don't' really consider the one above reading--it's more like looking. The last book I finished was Harry Potter and the Deathly Hallows. Since then I've cracked open The Lost Estate which is supposed to be the French version of the Catcher in the Rye, but it didn't' really do anything for me. It's hard for any book to follow up ole Harry, though.
Five books that mean something to me.
This one is hard. I think I'll just list five books that I'd recommend to a friend.
The Cider House Rules. This is a book about abortion and I read it cover to cover in a fervor in college. I cared so much about the characters that I didn't' want it to end. It's really controversial, but sometimes good literature is.
Midwives. It's a trial book about a midwife who kills one of her patients. One of my friends said she couldn't read about those terrible women, but I found the story engrossing and once again, I was still thinking about it after it ended.
Feed. This is an adolescent novel, but I think it would be a good read for anyone. What the author does with language--or a lack thereof--is genius. I made my husband read this one just so we could talk about it.
A Framework for Understanding Poverty. Want to know why poor people do what they do? Read this book. It will change the way you view so many things. I read it for a graduate school class and later I worked at a school that was completely devoted to using the author's methods. It made for a compassionate and kind staff. I think anyone who works with the poor on a regular basis should read this and really think about it.
To Kill a Mockingbird. I'm the daughter of a lawyer. I grew up in the south. This was probably the first book I ever read where the ending wasn't tied up in a little bow in the end. It's good stuff.
Tuesday, June 10, 2008
Give me a D
D is for denial.
I wonder if I'm in denial. I don't think that I am.
But then I wonder.
I know on a practical level that Charlie is wildly behind his peers. I know that he should be sitting, pulling to a stand, and crawling at the very least. I know that with my head, but do I know it with my heart? I'm not so sure.
Charlie is one now and I think it's time to start letting him spend more time with other children. I think it would be good for him. I'm not sure how I'd feel about the reality, though. Is it so terrible that I don't want to watch other kids cruising about the room while mine lies helplessly on his back? Am I being melodramatic?
I'm not sure I'd mind Charlie's lack of development so much as I'd mind the uncomfortable silence I would undoubtedly face. Perhaps I should just make a t-shirt that says, "I have C.P. Ask me about it." Ok, I'm kidding about that last one. Mostly.
I guess what I'm trying to do here is be honest. Most of the time parenting Charlie is a complete joy. It's not perfect, though. Like every parent, I struggle to do the right thing. It hurts sometimes to see children half his age who can do so much more than he can. Worse than that, though, is feeling that people pity me. Perhaps a better t-shirt would read, "Make Understanding, Not Pity." Maybe I'm in denial, but I think I have a good life. Maybe I don't get it, but I think there are worse things in life than what I'm going through.
I realize that this is a bit of a ramble. Sometimes your thoughts aren't completely coherent.
I wonder if I'm in denial. I don't think that I am.
But then I wonder.
I know on a practical level that Charlie is wildly behind his peers. I know that he should be sitting, pulling to a stand, and crawling at the very least. I know that with my head, but do I know it with my heart? I'm not so sure.
Charlie is one now and I think it's time to start letting him spend more time with other children. I think it would be good for him. I'm not sure how I'd feel about the reality, though. Is it so terrible that I don't want to watch other kids cruising about the room while mine lies helplessly on his back? Am I being melodramatic?
I'm not sure I'd mind Charlie's lack of development so much as I'd mind the uncomfortable silence I would undoubtedly face. Perhaps I should just make a t-shirt that says, "I have C.P. Ask me about it." Ok, I'm kidding about that last one. Mostly.
I guess what I'm trying to do here is be honest. Most of the time parenting Charlie is a complete joy. It's not perfect, though. Like every parent, I struggle to do the right thing. It hurts sometimes to see children half his age who can do so much more than he can. Worse than that, though, is feeling that people pity me. Perhaps a better t-shirt would read, "Make Understanding, Not Pity." Maybe I'm in denial, but I think I have a good life. Maybe I don't get it, but I think there are worse things in life than what I'm going through.
I realize that this is a bit of a ramble. Sometimes your thoughts aren't completely coherent.
Sunday, June 8, 2008
Weekend O' Fun
I'm still recovering from Charlie's birthday weekend o'fun. I'll go over the highlights, but I don't have any pictures just yet. I left my mom in charge of pictures and haven't had a chance to get any of them from her yet.
Our friends came in from Little Rock to celebrate the miracle man's first year on the planet. These people were holding the Hub and I up at this point last year--camping out in the waiting room, organizing visitors and food, and praying up a storm. You couldn't ask for more wonderful and faithful people to get you through a hard time. Having them here was especially nice because they "get it." They know how lucky we are to be here and to have achieved as much as we have.
We spent Friday running all around New Orleans--checking out the art and shops in the French Quarter, eating beignets, listening to live music, and looking for Harry Connick Jr.'s Music Village (we never found it, but the pictures on the Internet look very nice). I drove them by the place where the levies broke during Katrina, which still has a post-apocalyptic air about it. I didn't just show them the yuck, though. I showed them many areas which have come back nicely and also talked about neighborhoods that young people are flocking to--looking for opportunity in the destruction. New Orleans has always been a town of dichotomies and now is no different.
Saturday we had piles of family show up to celebrate Charlie's birthday. He received oodles of presents and I could not be happier. Therapy is a lot of fun when you have new toys to entice the baby with. Also, he's outgrowing everything he owns, so new clothes are like money in the bank. At one point Charlie threw a big fit--he didn't like being passed around like a potato, so I had to hold him for a while and calm him down. Could be brain-injury related, but it's just as likely that he's a squirrel like his daddy who once buried his head in his mother's chest for entire birthday party. He found icing yucky, but spent at least half an hour in complete delight listening to his grandfather read him nursery rhymes. My mom rose to the occasion by acting very stressed and hot--they took her uterus out a couple of years ago and since then she is ALWAYS hot. She kept fiddling with the air conditioner, exclaiming over the heat, and standing in front of the fridge.
So today we're recovering, assembling new toys, and eating leftover BBQ sandwiches. I'll add some pictures whenever I get the chance.
Our friends came in from Little Rock to celebrate the miracle man's first year on the planet. These people were holding the Hub and I up at this point last year--camping out in the waiting room, organizing visitors and food, and praying up a storm. You couldn't ask for more wonderful and faithful people to get you through a hard time. Having them here was especially nice because they "get it." They know how lucky we are to be here and to have achieved as much as we have.
We spent Friday running all around New Orleans--checking out the art and shops in the French Quarter, eating beignets, listening to live music, and looking for Harry Connick Jr.'s Music Village (we never found it, but the pictures on the Internet look very nice). I drove them by the place where the levies broke during Katrina, which still has a post-apocalyptic air about it. I didn't just show them the yuck, though. I showed them many areas which have come back nicely and also talked about neighborhoods that young people are flocking to--looking for opportunity in the destruction. New Orleans has always been a town of dichotomies and now is no different.
Saturday we had piles of family show up to celebrate Charlie's birthday. He received oodles of presents and I could not be happier. Therapy is a lot of fun when you have new toys to entice the baby with. Also, he's outgrowing everything he owns, so new clothes are like money in the bank. At one point Charlie threw a big fit--he didn't like being passed around like a potato, so I had to hold him for a while and calm him down. Could be brain-injury related, but it's just as likely that he's a squirrel like his daddy who once buried his head in his mother's chest for entire birthday party. He found icing yucky, but spent at least half an hour in complete delight listening to his grandfather read him nursery rhymes. My mom rose to the occasion by acting very stressed and hot--they took her uterus out a couple of years ago and since then she is ALWAYS hot. She kept fiddling with the air conditioner, exclaiming over the heat, and standing in front of the fridge.
So today we're recovering, assembling new toys, and eating leftover BBQ sandwiches. I'll add some pictures whenever I get the chance.
Tuesday, June 3, 2008
Keeping Up
Well, it's always hard to follow up the emotional posts, but here I go with a therapy update.
Yesterday we saw the physical therapist (at home), and she saw major improvement on his stomach, but he wouldn't sit for her at all. I was OK with it though because I had a revelation this week: Charlie will sit. I have no idea when, but I feel certain that he can do it. He has his moments here and there and all we have to do is build on it. Maybe I'm completely naive, but I just KNOW he's going to do it. Anyway, with his new-found tummy-time skills, he's starting to making some crawling movements as well. We'll see if that leads anywhere.
Secondly, we've reached a bit of a snafu with regard to bottles. We were recently told that we no longer needed to thicken his liquids. Charlie did fine with thin liquids. Unfortunately, nobody told Charlie and he doesn't like his milk un-thickened. I'd told Tiffany that I would send her our box of thickener and I had to go out to my husband's car and dig some out because Charlie was refusing to drink his milk thin. I'm going to have to talk to his OT about weaning him off of thickener because cold turkey did not work for us. My husband is big on promises, though, so Tiffany will be getting that box sometime soon.
Finally, although Charlie is a big fan of shouting and screeching, we still aren't seeing any babbling. I am seeing different mouth movements, but no change in sounds so far. His speech therapist "suggested" that we purchase some equipment so we can provide daily stimulation on his mouth muscles. I say "suggested" because they can't tell us to buy anything that isn't readily available in the home. Needless to say, we'll get whatever is suggested, so I've been instructed to order an outside of the mouth massager and an inside of the mouth massager. Has anyone noticed that Charlie gets way more massages than I do?
Tomorrow we see our instructor for the first time in three weeks due to scheduling issues/vacation/ect. I can't wait. I'm hoping that we'll get some new goals from her.
Finally, I've got out-of-town guests coming on Thursday, so I'll probably be a bit scarce until sometime after the big birthday party. I promise to take lots of pictures and update when I can.
Yesterday we saw the physical therapist (at home), and she saw major improvement on his stomach, but he wouldn't sit for her at all. I was OK with it though because I had a revelation this week: Charlie will sit. I have no idea when, but I feel certain that he can do it. He has his moments here and there and all we have to do is build on it. Maybe I'm completely naive, but I just KNOW he's going to do it. Anyway, with his new-found tummy-time skills, he's starting to making some crawling movements as well. We'll see if that leads anywhere.
Secondly, we've reached a bit of a snafu with regard to bottles. We were recently told that we no longer needed to thicken his liquids. Charlie did fine with thin liquids. Unfortunately, nobody told Charlie and he doesn't like his milk un-thickened. I'd told Tiffany that I would send her our box of thickener and I had to go out to my husband's car and dig some out because Charlie was refusing to drink his milk thin. I'm going to have to talk to his OT about weaning him off of thickener because cold turkey did not work for us. My husband is big on promises, though, so Tiffany will be getting that box sometime soon.
Finally, although Charlie is a big fan of shouting and screeching, we still aren't seeing any babbling. I am seeing different mouth movements, but no change in sounds so far. His speech therapist "suggested" that we purchase some equipment so we can provide daily stimulation on his mouth muscles. I say "suggested" because they can't tell us to buy anything that isn't readily available in the home. Needless to say, we'll get whatever is suggested, so I've been instructed to order an outside of the mouth massager and an inside of the mouth massager. Has anyone noticed that Charlie gets way more massages than I do?
Tomorrow we see our instructor for the first time in three weeks due to scheduling issues/vacation/ect. I can't wait. I'm hoping that we'll get some new goals from her.
Finally, I've got out-of-town guests coming on Thursday, so I'll probably be a bit scarce until sometime after the big birthday party. I promise to take lots of pictures and update when I can.
Monday, June 2, 2008
Worth It
In this country more than eighty percent of babies diagnosed pre-natally with Down Syndrome are aborted. More than eighty percent. My mind is boggled by this number. Abosolutely and completely boggled.
Now, I have known some really awesome couples who simply refused to have any tests for anomalies--they knew that whatever God had given them, they would take.
My husband and I weren't that awesome. We discussed and debated whether or not to have the test. You see, neither of us believes in abortion. Far be it from me to tell other people how to live their lives, but for us abortion was never an option. So why have the test? For me, the reason was simple: if the baby had problems, then I wanted to be able to prepare for them.
You can't prepare for everything, though.
Here I am just days away from Charlie's first birthday. The "little boy who shouldn't have" has made it so far. There was no preparing for his birth; no preparation for what lay ahead.
So, why am I bothering to re-hash all this ancient history? For one simple reason. This is the internet. Somewhere, some parent may Google "massive brain damage" or "cerebral palsy" or "infant stroke." I was this person a little less than a year ago, and I want my opinion on the whole thing to be clear:
It is so worth it.
When I was pregnant, I waited to say these words. I wanted so badly to know that the sleepless nights and the heartburn and puffy feet were all worth it. I wanted to know without a shadow of doubt that I had put my body through hell for the right reasons. I dreamt of posting those very words on this blog.
It wasn't clear right after I gave birth, though. My heart ached and my body had been sliced open. I literally ached, but wished I could be numb. My life was the shambles and I couldn't hold the baby that I'd carried inside of me for thirty-seven weeks. Was it worth it?
Yes.
Charlie is an amazing person. He loves macaroni and cheese, marinara sauce, chicken salad, cheese dip, and juice. He hates carrots and asparagus. He has his father's nose, and eyes, and thighs (chubby). He has my grandfather's chin. He is sweet and rarely cries, but he is a master at pouting. He loves to be held and played with. He is shy and will hide from his own reflection in a mirror. He fights sleep by screaming at the top of his lungs--he might miss something! He loves to stand, he love music, he hates the grass. He is an interesting and amazing blend of my husband and I. He is only a year old and he can't talk, his vision is lousy, and he doesn't even sit up without help. He is a dream come true. He can eat in any restaurant and rarely spoils an evening--a baby who seldom cries. He is a delight.
So worth it.
We have lot of appointments, but I don't mind. Truthfully, I don't know what other mothers do with their time. I NEVER feel put-out having to go to a doctor or therapist. I can be so insanely selfish, but these things are a given. They are easy. They are simple.
I have no idea if this ramble makes sense, but I hope my point is clear: Raising the imperfect child is wonderful. Once you get over the fear, the rest is easy. There may be doctors and there may be therapists. There may be moments of utter and complete helplessness. Without these, however, you would be missing out so much. Charlie's soul is sweet and pure and uplifting. He delights in the smallest of things. I cannot imagine a world that doesn't have him in it.
So very worth it.
Now, I have known some really awesome couples who simply refused to have any tests for anomalies--they knew that whatever God had given them, they would take.
My husband and I weren't that awesome. We discussed and debated whether or not to have the test. You see, neither of us believes in abortion. Far be it from me to tell other people how to live their lives, but for us abortion was never an option. So why have the test? For me, the reason was simple: if the baby had problems, then I wanted to be able to prepare for them.
You can't prepare for everything, though.
Here I am just days away from Charlie's first birthday. The "little boy who shouldn't have" has made it so far. There was no preparing for his birth; no preparation for what lay ahead.
So, why am I bothering to re-hash all this ancient history? For one simple reason. This is the internet. Somewhere, some parent may Google "massive brain damage" or "cerebral palsy" or "infant stroke." I was this person a little less than a year ago, and I want my opinion on the whole thing to be clear:
It is so worth it.
When I was pregnant, I waited to say these words. I wanted so badly to know that the sleepless nights and the heartburn and puffy feet were all worth it. I wanted to know without a shadow of doubt that I had put my body through hell for the right reasons. I dreamt of posting those very words on this blog.
It wasn't clear right after I gave birth, though. My heart ached and my body had been sliced open. I literally ached, but wished I could be numb. My life was the shambles and I couldn't hold the baby that I'd carried inside of me for thirty-seven weeks. Was it worth it?
Yes.
Charlie is an amazing person. He loves macaroni and cheese, marinara sauce, chicken salad, cheese dip, and juice. He hates carrots and asparagus. He has his father's nose, and eyes, and thighs (chubby). He has my grandfather's chin. He is sweet and rarely cries, but he is a master at pouting. He loves to be held and played with. He is shy and will hide from his own reflection in a mirror. He fights sleep by screaming at the top of his lungs--he might miss something! He loves to stand, he love music, he hates the grass. He is an interesting and amazing blend of my husband and I. He is only a year old and he can't talk, his vision is lousy, and he doesn't even sit up without help. He is a dream come true. He can eat in any restaurant and rarely spoils an evening--a baby who seldom cries. He is a delight.
So worth it.
We have lot of appointments, but I don't mind. Truthfully, I don't know what other mothers do with their time. I NEVER feel put-out having to go to a doctor or therapist. I can be so insanely selfish, but these things are a given. They are easy. They are simple.
I have no idea if this ramble makes sense, but I hope my point is clear: Raising the imperfect child is wonderful. Once you get over the fear, the rest is easy. There may be doctors and there may be therapists. There may be moments of utter and complete helplessness. Without these, however, you would be missing out so much. Charlie's soul is sweet and pure and uplifting. He delights in the smallest of things. I cannot imagine a world that doesn't have him in it.
So very worth it.
Sunday, June 1, 2008
Silliness
I don't know the last time I told a funny story on this blog, so here goes:
Yesterday I was driving Buster to the vet ot have his teeth examined. He was sitting in the passenger seat (airbag off) when I noticed that he was taking a particular interest in his rear end. Then, I saw a light-brown lump in the crack of the seat, right where he was sitting. Now, we've been giving him a bunch of table scraps and wet food, so when I saw that lump I was sure that he's just deposited some loose stool in my car. I said, "it's OK, baby," and I pulled into the nearest gas station.
I pulled in, grabbed the leash and let Buster do his business in the grass surrounding the station. He happily trotted about and didn't look distressed at all, so figured he was feeling OK--just had a bad digestive moment.
Only one thing left to do and that was take care of the business in my car.
I grabbed a napkin, leaned over, and discovered that the brown mound in my car was a waffle fry from Chick-fil-a. No wonder Buster was so interested in it!
Yesterday I was driving Buster to the vet ot have his teeth examined. He was sitting in the passenger seat (airbag off) when I noticed that he was taking a particular interest in his rear end. Then, I saw a light-brown lump in the crack of the seat, right where he was sitting. Now, we've been giving him a bunch of table scraps and wet food, so when I saw that lump I was sure that he's just deposited some loose stool in my car. I said, "it's OK, baby," and I pulled into the nearest gas station.
I pulled in, grabbed the leash and let Buster do his business in the grass surrounding the station. He happily trotted about and didn't look distressed at all, so figured he was feeling OK--just had a bad digestive moment.
Only one thing left to do and that was take care of the business in my car.
I grabbed a napkin, leaned over, and discovered that the brown mound in my car was a waffle fry from Chick-fil-a. No wonder Buster was so interested in it!
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