Saturday, August 30, 2008
Friday, August 29, 2008
The worst part is this is all complete speculation. At any point things could change. Our plan is still to ride out the storm at home. If there's a widespread power loss then we'll be heading to Little Rock.
Tuesday, August 26, 2008
My parents evacuated at the last minute before Hurricane Ivan and almost ran out of gas sitting still on the interstate. They could find no place to go and with my elderly grandfather in tow, it was a tortuous twelve hour drive to my house in northern Texas. They were disgusted by the whole process, swore they'd never evacuate again, and New Orleans escaped unscathed. I remember my father sitting in my living room and saying that "next time" he was just going to pack a bag and go to the Superdome.
The "next time" would be Hurricane Katrina and they were eager not to repeat the Ivan experience. The Superdome didn't allow pets, so they booked a room in Houston, packed the crazy cat and my grandfather, and headed out early. The idea was to make a mini-vacation out of it. At no point did we expect that my parents wouldn't return to their home for a month. I had been planning to visit my parents over the weekend (I was living in Little Rock at the time), and was perturbed that my plans were being interrupted. Again, we never thought that Katrina would amount to much. Hurricane warnings had become like the Boy Who Cried Wolf: after a while, you stopped thinking anything would ever really happen.
Most of you saw on TV that Hurricane Katrina was not a pretty thing. Flooding, death, major destruction. My family watched in on TV too--wondering about friends, homes, belongings. Reports were conflicting and no one knew what was going on. Cell phones didn't work and the overall feeling was one of helplessness. To put it bluntly: it sucked. I could get into the whole thing, but you've seen it or heard it, and if you haven't, then go get Spike Lee's documentary on it--I couldn't get through thirty minutes of the damn thing without either screaming or crying.
Which brings me to the point of this long, rambling entry. Hurricane season has kicked it into high gear. Gustav is predicted to hit the Gulf of Mexico somewhere between Monday and Wednesday and people are making plans with one eye on the Weather Channel. I have house guests coming and I'm wondering if they're going to be able to fly out when they want to.
My husband and I weren't here for Katrina, but many of our friends rode it out over here, north of the Lake. This is the stuff you didn't see on TV: People living north of the evacuation zone. There, many people went without power for about two weeks. Some had generators and many did not. Gas was in short supply and trees and power lines made road travel dangerous. Talking to the people on the phone had a definite end of the world/apocalypse kind of feel as they talked about looking for fuel and keeping the doors locked and guns drawn.
So, the Hub and I are wondering and cautious. We don't have to evacuate. Our house isn't in the evacuation zone, we are fourteen feet above sea level, and our house is raised. Our plan is to prepare for a few days without power, and if it looks like things are going to take a while then we're packing our bags and heading for Little Rock. We'll stay with some friends. Our primary motivation is keeping Charlie close to fully-functional medical services. Power is nice, but if your shunt fails. . . you need a neurosurgeon. Also, your average, run-of-the-mill epileptic needs their medicine and if there's no power than there might not be medication either. My parents are taking my elderly--now terminal--grandfather to Baton Rouge.
So, keep us in your thoughts and let's hope Gustav will just deteriorate into nothing worry about.
Monday, August 25, 2008
Friday, August 22, 2008
But I don't need to bore you with all that.
What I really wanted to talk about is how much I'm enjoying him these days. One of the hardest things about a child with disabilites like Charlie's is the lack of connection you feel. Charlie looked at me and smiled just because about once the first eight months of his life. My friend's flirty little boy who's the same age as Charlie did it like three times when they came to visit. I loved him, but I wondered if he knew me--if he liked me. These days he looks at me and smiles almost every time I go to pick him up. He gives me little glances during therapy and while he's playing in his stander. Sometimes he just wants to be picked up and now he's actually strong enough to look around and hold on while I cook or go check the mail. Please don't misunderstand--he is far from having the vision of a normal child, but he has come a long way, and we have much to be thankful for.
He's become so much more interested in the world around him. When I push him in his stroller, he holds on to the tray so he can sit up and look around. When we go out to dinner he looks all over the room and laughs at the shrieks of other children. I can see that these things are hard for him and he often gets worn out after a while, but he WANTS to do things. He's interested in his world. Now that we've gotten past the heart failure, the brain damage, the hydrocephalus, and the heart failure he's at a point where he can grow and explore his world.
I am enjoying his smile, his interest, and his little personality. I'm finally getting to know him.
Thursday, August 21, 2008
I have three big projects looming on the horizon with regards to Charlie. Two involve his intellectual program. By the way, he LOVES his reading cards. I highly recommend the Glen Doman books for anyone interested in starting an intellectual program with their children--brain injured or no. I also have to make some "choice cards." These are basically laminated images that represent different things. This way he can make choices even though he's not really talking yet. Eat or play? Chair or tummy time? You get the picture.
I just feel a tremendous amount of inertia these last few days. Even the smallest tasks seem to big. Ugh! I just need to get my hiney in gear.
Monday, August 18, 2008
I mentioned earlier that I had an idea for a business. I been looking into it, narrowing my focus, and the universe has sent me a couple of signs as well. I'm at the point where I feel like I need to explore this or I'll always wonder what if.
There's a problem, though.
I believe in this idea and think it's really good. I believe in it so much that I don't want to talk about it. It's as if saying it out loud will jinx it or something.
I am so nervous. . . I hope that I can see this thing through.
Sunday, August 17, 2008
Friday, August 15, 2008
As a result of this college stint, I know a good many people who are now in the process of becoming doctors. Off the top of my head, I can say that I know five girls in some area of pediatrics, an allergist, and a urologist. I've been away, and I know people change, but for the most part I liked these people. I invited them to my parties, ate meals with them, and we all hung out at a variety of functions.
So, at what point do so many doctors become the enemy? When do they stop listening and stop caring? Was I just lucky to know some nice people who became doctors? Are most people who become doctors asses?
In the military they train fighter pilots not to question themselves. The goal is to create people who make split decisions and don't question themselves. It's an effective technique, but a lot of fighter pilots have pretty arrogant personalities. Not all, of course, but many. They learn not to question themselves at all and that kind of ego can be hard to deal with.
Is this what happens with doctors? Or do they just become jaded like so many teachers? Tired of seeing sick children, and frightened parents?
I suspect it is some of all of the above. I also think that the type of person who makes it in college and med school is the perfectionist type. The kind who expect nothing but the best. How then, are they to view a life or a person who achieves less than perfection? Can they see the goodness in a twisted little boy who uses a walker? Can they accept that a person can be perfectly happy working as a buggy boy at Walmart? Somehow, I doubt it.
I am so past perfection. Frankly, I don't believe in it anyway. We all have faults and deal with our issues--some are just more obvious than others. If my child never walks, then I may shed some tears, but I'm surely not throwing myself off a bridge at the possibility. If Charlie's life is limited by his physicality then that is something that we'll just have to deal with.
I am extremely picky about the doctors that we use. I refuse to accept a person who isn't looking at Charlie and his life in a positive light. No matter what his life becomes, he is a person and should never be denied his dignity. I'd like to encourage everyone else to be picky about their doctors too. Let us not forget that they work for us--they are in a service profession. Now days, doctors have the power. I hear and see firsthand stories about doctors who write off patients, who choose methods of treatment that are inhumane, and who ignore the wishes of the patient.
I say that right now, in this country, medicine is a business. I hate that, but that is how it is. Why not use it to our advantage? You don't like a doctor, take your money elsewhere. Let hospital administrators know what you want and that you aren't afraid to look for it. Shop around. Be Julia Roberts in Pretty Woman and don't give them your money if they're rude.
I think it's time to turn the tables. This is OUR life, OUR body, OUR health. We are ultimately the ones who have to live with the decisions. Read, read, read. Talk to/e-mail/chat with people who have been in a similar situations--the Internet is an amazing resource and in the blink of an eye you can find people all over the planet who are walking in the same shoes you are. Go to the doctor armed with information and vocabulary. Do everything you can to force them to treat you as an equal. Call them out if they're suggesting unnecessary tests or using one-size-fits-all medicine.
Life is far too short to team up with people who feel like adversaries. Shouldn't we feel like our doctors are on our side?
Wednesday, August 13, 2008
We were up at the break of dawn for medicine and a little apple juice; I, quite rudely, had some breakfast, and then we went off to the hospital for a CT scan and a visit with the neurosurgeon. Since Charlie is older, they wanted him to be sedated for the scan. I thought this was ridiculous, but I couldn't convince anyone else of that. So, we showed up at the Same Day Surgery Center (crazy, no?), signed in, waited an hour, and got processed, which took another hour. They gave Charlie some medicine to relax--he was asleep at this point--and then whisked him away to radiology.
Forty-five minutes later they came and got me and I went to see him in "recovery." Again, ridiculous. He was grumpy, but fine, and quickly took down a five ounce bottle. We sat around for another forty-five minutes so her could "recover," and then they released us.
We went and got a sandwich and then drove through a monsoon back to the hospital to meet with the doctor and discuss the results. We got done with everything around three and I still had to drive over an hour to get home.
The news is all good. Charlie's shunt is in place and working properly. His ventricles are smaller than they were in December. Additionally, his head circumference has increased slightly since then. This means his brain is growing!!!! That's my guy: learning new things every day.
Speaking of which, Charlie is learning how to turn pages in a book. Also, his teacher is interested in helping him communicate since his speech is delayed. I don't know what she has in mind, but that will sure be interesting.
Monday, August 11, 2008
If you haven't then I can only assume that you don't have children.
There's been a lot of bruhaha in recent years about vaccines and their safety. These days kids get a lot of vaccinations. At Charlie's two month check-up he had three shots and each one of these contained either two or three vaccines. That's a lot of viruses.
Some people believe that vaccines may be one of the causes of autism. To date, there's no evidence to back that theory up, but to my knowledge, no double-blind studies have been done on the topic (you know how scientists love those double-blind studies) in this country. Also, I've never been one to wait around for scientists to "prove" something. If my gut tells me something, then that's enough for me.
I've read up one side and down the other on this topic. I've read for it and I've read against it. I've asked people who have PhD's in this area. I've done my homework. As far as I can see, people are almost violent on the issue: either they feel strongly that all children be vaccinated or they feel strongly that they shouldn't. There is very little gray for many people.
I, however, like to hang out in the land of the gray. Charlie has had some vaccinations. We were on hold for a while now due to some medications he was taking, and now I have to decide how much further I want to vaccinate him.
Until Charlie's second birthday, we aren't going to vaccinate him any further. I have no doubt that some people will disagree with this decision, but that's OK: I have a right to handle my child's health the way I see fit (within reason). I think that we're a little zealous in this country about vaccination, and some children are at a high risk for complications.
There is a lot of evidence to show that some perfectly normal children will have a seizure after a vaccination. Furthermore, I've found that some children developed a horrific form of epilepsy after they were vaccinated. I've already been down seizure avenue and I'm in no mood to return. I've scoured the Internet and found an alternate vaccination schedule that I'm happy with. I will wait until Charlie turns two to continue with vaccinations. At this time, his brain will be more fully formed and less susceptible to assault. I don't want to argue over whether or not vaccinations are safe--it doesn't matter to me. What does matter is the little life I've been entrusted with. He rarely sees anyone besides family. He doesn't visit with other children and he doesn't spend any time in Mother's Day Out, Church Childcare, or Day Care. He is exposed to very little in the way of communicable diseases. As we approach the school years, I will begin vaccinating against the most dangerous diseases. I'm going to space out the vaccinations over time. I going to be over-cautious.
Saturday, August 9, 2008
Wednesday, August 6, 2008
Since January Charlie's weight has flat-lined. Well, he gained a little, but not like before. He's hanging out at the very bottom of the chart and I really don't want him to fall off of it.
You may recall that in January Charlie took a very nasty medicine that aggravated his stomach. For a few days he gave up eating all together and then we introduced Zantac and things got better. Then, we removed thickener from his bottles and that made it easier for him to reflux (not that he's doing it on purpose). Also, he's really wanting to move around and sit more and all the stomach muscles clenching together also makes him reflux.
He never spits up a whole lot, but all the spitting up has made him a lot less interested in bottles. He eats solid food, but I guess I'm just not giving him enough.
Enter: Operation Fatty.
Today I fed him a small meal every two hours. Also, I need to convince my husband that Charlie can have fat and carbohydrates. He's really focused on vegetables, fruit, and protein, and while this is excellent food for a body-builder, I need to make sure Charlie has some baby-padding as well.
He's not skinny or underweight, but I don't want him to get that way either.
Any suggestions anyone has for fattening foods that kids like?
Monday, August 4, 2008
You see, he is ninety-five.
He has served in one World War and two conflicts.
He was a lawyer and a judge.
He lived on two continents in three different countries.
He's outlived two wives and a girlfriend.
He raised two children by himself.
He graduated high school at age sixteen.
As we speak, he has a computer, an Internet account, and a cell phone.
He's done a cross word puzzle every day as long as I've known him.
He whistles all the time.
He has lived a full life.
This weekend they diagnosed him with lung cancer. He is refusing all treatment for the cancer and is going home on oxygen. He feels better than he has in months and is resting comfortably. Hospice has come in, which means the doctor has given him less than six months. When someone is ninety-five, you know they aren't going to be around forever, but still. . . it's sad.
Sunday, August 3, 2008
We're almost done and it has taken SEVERAL coats of paint. This picture was taken during the process.
So this weekend we took advantage of the no-tax things and picked out some mini-chandeliers to hang there instead. I couldn't find a picture of them and they're still in the box, but they look kind of like this:But, of course I couldn't hang the lights on a popcorn ceiling, so I started scraping the ceiling this weekend.
And then I ordered some fancy light switch covers.
One day we want to replace the doors too, but that will be a huge project, and for now I'm sticking with the easy stuff.
And, just for the Charlie fans, pictures of his first hair cut. You have to excuse my wet-mop hair--I was fresh out of the shower.