I Try to Avoid This Stuff--or do I?

I live in a small town. I've mentioned that before.

The town has really been putting a lot of energy into rejuvenation and and upgrades. They've done some really great stuff and I've been thrilled at all the improvements.

Over the Fourth of July weekend, a huge project to put in a new playground at the local park was completed. A company designed it, but residents of the town actually built it.

Last weekend the Hub and I went to check it out and I was thrilled to see that at least one of the structures had ramping, which meant it could be used by a child with a walker or in a wheelchair. Terrific, right? Accessible fun right here in town.

Well, right after that, without warning, the town closed the road that leads through the park, to the playground.

How flippin' frustrating! It is a VERY long walk to the playground. I sent an e-mail to the town Alderman asking what if any provisions were going to be made for disabled residents to access the play ground. I received a form letter back saying that even with the closure there would be plenty of parking. That's not even what I asked.

I posted about it on a the a bulletin board for our town and several people began talking about how people need to "get off their fat asses and walk." It is so difficult to explain to some people that not everyone CAN walk that far.

It really isn't about Charlie--we're a long way from walking. I just think it's a shame that the park was actually built with accessible equipment and now it's hard to get to.

I went and took pictures of the walk.

Here's the first leg:

Here's the second:

The playground is about where that red truck is. That's where you used to be able to park. Now, not so much. Notice the sidewalk--cracked completely. To the left is where the road used to be, but they're ripping it up as we speak.

I just don't get it. They make an accessible playground and then they make it inaccessible.

Medicine

Medicine

Doctors

For the first twenty-seven years of my life I managed to get away with visiting the doctor as little as possible. I've never had my tonsils removed, my internal organs are ship-shape; I dealt with little more than your standard childhood illnesses. I wasn't purposely avoiding them, but I definitely didn't spend any more time in the doctor's office than I had to.

Charlie's birth has thrust me head-first into a world with which I was previously unfamiliar. Unlike Kathryn, I haven't purchased any medical textbooks, but I have spent my fair share (and maybe more) of time on the computer researching Charlie, his specific diagnoses, prognosis for these conditions, and also finding families experiencing similar things and researching alternative treatments.

In my last post I indicated a little frustration about certain family members' response to the decision my husband and I have made to pursue alternative treatment. One of these people is a third-year resident/about to enter fellowship.

I thought I'd share my opinion on the current state of medicine, so those comments aren't misunderstood.

I think modern, western medicine is amazing. It saved my child. It continues to keep his heart beating correctly. It keeps him seizure free. I am deeply grateful for these things. I keep every doctor's appointment my child needs, which at last count was five. We never skip a dose of medicine or refuse a test.

What separates me from some, is my lack of dependence on doctors. I depended on a doctor once before and consequently gave birth to a very sick baby--and let's face it, sick is a euphemism.

I think that the thrust of our current medical environment is on getting rid of symptoms. Only in rare cases, does it look at causes. Pills and quick-fixes are the first line of defense. Most people are happy with this. Problem with your gall bladder? Cut it out. Something hurts? Here's a pill or a shot to make you feel better.

I also think our current system is slow and hampered by politics and money. I think our current insurance system has created a vicious cycle where things cost more than people can afford because insurance companies create so much paperwork doctors have to hire someone just to process and file it. I think words like "stem cells" make people close their minds before reviewing the facts. Did you know that in this country it's virtually impossible to have YOUR OWN stem cells put back in your body? Unless you have one of a few, specific diagnoses, you can forget about it. It's your own blood. You pay to store it and bank it, and yet in the US only one person in the whole country is willing to give them back to you, and that is in a research environment. How crazy is that?

My husband and I have done everything for Charlie that the current system allows and recommends. I've seen tons of doctors; we have five therapists, and soon we'll probably be adding more days to the schedule. All indicators are pointing to a life full of Botox injections and possibly other surgeries. A child with cerebral palsy can have a muscle-relaxer pump installed in their bodies, they can have their hamstrings cut, they can have rods placed in their spine, they can have the nerves running to their legs cut. They are at high-risk for hip dysplasia. It isn't a pretty picture.

There are no double-blind studies for ABR. It isn't covered by insurance. It's a risk and a gamble on our part to take our own money and pursue something that isn't proven by these methods.

But it's also non-invasive. The techniques will likely not bother Charlie at all. I will continue to pursue everything the doctors recommend. I'm not forgoing one thing for another. I am simply pursuing another option. Doctors may be experts in their field, but I am an expert in Charlie. It isn't acceptable to me that he could be in for a lifetime of preventable pain. Maybe I'm wrong. Maybe he'll need all those things anyway. I do know that all I have to lose is money--and money is replaceable. Hell, with my bargaining and Dad's AMEX points, our visit to Montreal will cost me less than three thousand dollars including ABR's fee.

So there it is. My thoughts on current medicine and the alternatives.

Things That Annoy Me

1. No good sales in this week's Hobby Lobby Ad
2. All the missing DVD's are mine. All of the Hub's have been showing up.
3. Finding out that the grocery store only stocks the small version of the formula cans because that's the only thing WIC covers--hello? We're not all on WIC.
4. Finding out that Charlie's AFO's are wrong. Now we wait for a new pair.
5. Listening to the report that Hub's step-brother (the third-year resident) gave on ABR. And then his Dad talk about how there have been no double-blind studies.

Here's to tomorrow!

Update

Ok, stakeout complete.

The mailman came, picked up the mail, and dropped it off. Inside was one of the missing Netflix disks. So. . . if someone is taking them from me, it isn't my mail man.

I think I'm just going to have to put them out RIGHT before the guy comes, and pick up my mail right after it's picked up. Can't give anyone a chance to go shopping. If that doesn't work then a P.O. Box it will be--it's right down the street.

what to do?

Here's the deal.

Last Saturday I put a netflix movie in the mail to go out. Netflix never received it. I reported it missing and they sent me a new one.

Now, the disk they sent me AND another movie haven't made it to my house.

I've got one disk left here at the house and I'm not sure I even want to put it in the mailbox. Of course, the fact that disks have gone missing coming and going makes me pretty suspicious that it could be the mail carrier. If it is a mail carrier than it won't do any good to

You think I should do a stake-out? I could probably stay in the front room all day if I set up tonight. The mail usually comes by eleven, so I wouldn't have to wait forever. And what am I looking for?

I considered getting a PO box, but I don't know if the envelopes would fit.

Anybody have any ideas?

Coming Out

I inadvertently forced my mother into the hot seat today.

You see, I have a Facebook profile. Never has a person agonized more over the info section of their facebook profile. It was ridiculous. Should I mention Charlie's issues? Should I not? OH THE AGONY! You would think that I didn't have any actual problems in my life. Finally, I went with a condensed version of the truth encapsulated with what I've been doing since my college graduation in 2001 (HOLY CRAP, HAS IT BEEN THAT LONG?). I mentioned a stroke, CP, and therapy, but didn't go into hydrocephalus, epilepsy, and heart failure.

Some people might question why I bothered. I mean, if you really know me then you know what's going on with Charlie. You probably have access to this blog (although whether or not anyone besides my brother is reading is a completely different story). People that only know the Facebook version of your life aren't your closest friends. You don't owe it to them to be 100% honest--chances are they're giving you the glossy version of their life. Plenty of people just skip the info section.

But, there are some people on there that I like, but that I've lost touch with. I want to be able to share my life without feeling like I need to edit out the unattractive parts. Besides, I'm not embarrassed about what happened to Charlie. It's not like I DID something. It is what it is. I have a child with special needs and that is the focus of my life at this time. Truly, not the biggest deal in the world.

So. . . my mom. She runs into someone she knows at the mall. This woman's daughter and I were friends off and on from the second grade. We went to the same elementary school and high school and to the best of my recollection, we didn't have a falling out so much as we went our separate ways. Probably had something to do with the fact that I went through a scary-dark period in high school and wasn't a whole lot of fun to be around. We both went to LSU, but I'm pretty sure I never saw her while I was there. I think. I never saw her on campus, but I can't make any promises as to who I saw or didn't see in bars. It WAS college.

Turns out, daughter came into town for a visit, showed her mom my profile on Facebook AND all my Charlie pics. So, my mom is standing their in the mall talking about how it turns out that Charlie, an infant, had a stroke. This woman was a nurse, so she wanted the nitty gritty.

I feel bad that my mom had to stand around the mall talking about her grandchild's horrific birth, but I'm not sorry that I've talked about Charlie's life. You see, I find that most people fall into two camps: You've got the group that glosses over the ugly and acts like nothing bad ever happens to them. Meanwhile, they're dragging their son to drug rehab. The other group goes for the woe-is-me thing: they're sick, their kids are sick, their life is SO terrible, BLAH, BLAH, BLAH!

I'm aiming for the middle. I want to be the person who says, "Yes, my life has challenges, but I'm not hurling myself off of a bridge or asking everyone to feel sorry for me." I'm still taking pictures, going to concerts, eating good food, and living life the best way I know how. We all have challenges--no one's life is perfect all the time.


PS: This is weird, but Charlie just laughed in his sleep. Kind of freaked me out.

PPS: I know it's been ages since I've posted any new pictures, but I will try try try to take some this weekend. I haven't had any good photo-op moments lately.

My Kind of Math

So, I need to get tickets to Montreal, a hotel for a week and a rental car for week. My goal is to get it accomplished for less than $3000.

I first started looking and found out that a ticket to Montreal costs $1500. So, two tickets to Montreal were going to be three grand. Not good.

I checked out some other places and found some for nine-hundred dollars a piece. Still not great.

Then, I found out I could keep Charlie in my lap for the flight and not have to buy him a ticket. I consider this a major score. I'm not sure he could comfortable ride in a seat anyway.

Then, I talked to some mothers talking about going to Montreal on the ABR parent's board. Off-handedly someone talked about flying into Vermont and driving to Montreal, which is less than two hours away.

I checked on a flight to Vermont: Two-hundred and fifty dollars.

Rental car does not charge extra to take the car to Montreal, so I'll have to pay the rental fee and a small fee for international insurance. No mileage.

So, I COULD get the rental car and two tickets to Vermont for less than one ticket to Montreal. I'll probably just do one ticket to Vermont and save even more.

I'm so proud of myself.

Squeeeee!

Don't you love how one day you're all serious and have a total downer of a blog and then the next day the universe seems to send you something to cheer you up?

Found out today that Charlie has been accepted and we will be heading to Montreal in October. My excitement is unbounded!!!! I just know that this is going to be such a boon for Charlie's development.

WaHOOOOOOOOOOOO!

For those of you that are super-interested, here's a video of a child with CP who started ABR at fifteen months. http://www.youtube.com/watch?v=rXrGb-ABgVw

Getting to Know You

Today we had our meet and greet with the man who will be Charlie's new neurosurgeon. As I've mentioned before, his old one is no longer working, so we had to find someone new.

To simplify things, I'd decided to visit with the guy who works with all of Charlie's other doctors. When Charlie is older he'll qualify for the cerebral palsy clinic where his physiatrist, nuerosurgeon, and nuerologist will all see him on the same day. Whoopee!

The visit was OK. We waited for about forty minutes and Charlie wasn't really feelin' it. The appointment time meant that he was in the car when he should have been napping. Basically, he was a grump who did not feel like meeting someone new. As he gets older he seems a lot less enthused about meeting new people. I liked the doctor. He seemed slow and methodical--a personality type that I like in a nuerosurgeon.

It is always hard to meet a new doctor. I forget that Charlie is a first-class science project and they're going to want to know all kinds of good stuff. Charlie, in turn, acts disinterested and annoyed and I know they're looking at him and thinking, "MY GOD THIS CHILD IS HORRIBLY PALSIED," and I just want to point out his fabulousness, but there isn't a place on the chart for delightful personality, winning smile, infectious giggle, and incredible aptitude for music. Sigh.

I did manage to cheer myself up by trying on hairstyles at Instyle.com I decided that I'm going to keep growing my hair out. It's finally getting out of that in-between stage, but it's been a long time coming. I also did this:

Which is completely wrong, but oh-so funny.

Operation Take Care of Mommy

I think that every new mom can attest to letting themselves go a little. When I was pregnant I was getting regular pedicure, going shoe shopping, and generally making sure I looked nice. After Charlie was born there was a spiral of not sleeping, not fixing my hair, and generally wandering around in my pajamas.

So, now that things are less stressfull and more routine, I've decided to spend a little time on myself.

Today, I had my eyes examined for the first time since before I got pregnant. I'm wearing my contacts now (no real change in my prescription), and I ordered a new pair of super-fabulous glasses. Sadly, they are JLo brand, which I find a little disturbin, but I thought they were cute. I still have my trusty black frames, but now I have some fun ones too.

I also managed to get in a little exercise twice this week, which is nothing short of a miracle.

Now, if I could only figure out what the hell to do with my hair.

AFO

Charlie's AFO's arrived today. That stands for ankle-foot-orthotic. I honestly have no idea why we have them, but I do know that they provide arch support, so I guess that's a good thing. The PT and OT want him to wear them in his stander.

I took some pretty terrible pictures of him wearing them. They squish all his leg fat together and it's pretty unflattering. Oh well, I don't think he minds. They also seem to be giving him some balance when he's sitting. Here are the not-so-great pictures, and a cuter one that I took while he was in his stander yesterday.

What Am I Thinking?

Ok. Here's the thing. I am deathly afraid of flying in airplanes. I flew for years with no problem and then all of the sudden. . . freak out. My husband likes to tell people about how I tried to convince him that we didn't need to go on our honeymoon. He was real sweet about it and told me he was going to Cancun whether I came with him or not.

So I've managed to avoid flying since 2002.

Now I have to fly in September and October. In September I'm going to my cousin's wedding in New York. My mom bought the tickets so there's no getting out of it. Then, in October, I need to fly to Montreal.

Seriously, can I just ask my doctor for some Valium? I figure I need between four and six for the two flights depending on layovers. Any other suggestions? Prayer? Meditation? Hypnosis? I'm open to suggestions.

Bartering

I've now officially entered the world of bartering.

Next weekend I am going over to the house of a woman my MIL is friends with. My MIL and I are going to clean her house and while we're doing that, she is going to sew me some curtains. How exciting is that? I think my MIL is coming along mostly because she knows I'm a horrendous housekeeper. Her friend does contract work for interior desingers, so I know they're going to be great.

Hooray for bartering!

Hmmmm

Oh, I see. Apparently other people do stuff on their vacations. I am the opposite. I go on vacation to avoid doing anything at all. I could, actually, sum up my entire trip in just a few sentences:

I ate chicken salad sandwiches and sipped rum and diet coke on a balcony over-looking the Gulf. I walked in the sand and picked up sea shells. I read novels that weren't literature. I slept in. I floated in the ocean and occasionally did handstands. I soaked in the hot tub. I played Text Twirl on facebook, called to check on the baby, and bemoaned my BIL's taste in television (seriously, I actually get some quality time with cable and all he wants to watch are science programs). I took lots of pictures, chatted with people I don't really know, and bought a couple of pair of shoes. It was a good week.

I did have the chance to think, which is new. These days I feel like thinking is an endangered species. I decided I need to spend a little time taking care of myself. In that vein, I've dusted off the exercise equipment, scheduled an appointment with the eye doctor, and I've promised myself that I'll get out of the house every once and a while.

I also came to a pretty big decision about Charlie and his therapy. We've decided to seek out some alternatives. In the back of my mind, I wanted Charlie to be sitting independently by his first birthday. The doc said he'd like to see it by his second, but I don't want to wait any longer. He is getting incrementally stronger, and I'm seeing gains in cognition and vision, but I feel like he's creeping along physically.

With this in mind, we've decided to attempt a new therapy program called ABR. ABR in an international program based on the theories of a man named Leonid Blyum. It's the only program I've found where most people see real physical results. I first read about it over at http://www.terriblepalsy.com/ and have since joined the ABR yahoo group. We have begun the process of applying and hopefully we'll be accepted and able to start in October.

As with anything new, ABR will not be covered by our insurance. Also, the initial evaluation takes place in Montreal. The outlay for just the first year is huge. Please don't misunderstand--the money is there. It is our savings. It's the money we saved the first five years of our marriage. It is our safety net. I know we can always make more money. I also know that we have been supported so much by our parents and we are lucky that we have savings at all. God really has provided for us, so that we can provide for Charlie.

The weight of this momentous decision has been pressing on me a bit. I feel a little quiet. I know it's the right thing to do--I feel like I'm giving Charlie his best chance at a normal life. That doesn't take away the hugeness of the decision. Just because something is right, doesn't make it easy.

My parents have generously stepped up and offered to pay the deposit and my mother will be flying with us to Montreal. My grandfather gave Charlie an incredible gift for "his future," and I can think of no better way to spend it. We are doing this thing and I am excited, and nervous, and scared as hell.

All in a day's work, right?

Real Quick

Last minute I decided not to go see the doctor in Baton Rouge. I just couldn't justify taking somebody's spot who might really need to go. That, plus the extraordinary amount of money involved was making me very uncomfortable. I've got big plans for Mr. Charlie and myself and I don't want to get sidetracked at this particular moment.

Take That

Right before we left to go on vacation we had a follow-up with Charlie's opthamologist.

It was a good, good visit.

For both the nurse and the doctor he tracked a squeaky toy that they held out for him. As an added bonus, I offered him his vibrating teether and he reached out an grabbed it.

He definitely has a blind spot on the right , but the doctor said some good things about that as well: He said that young children often regain some of their lost vision, he said that he's not necessarily missing half his vision--maybe just a piece--we'll know for sure when Charlie's older and can tell us.

I asked about the possibility that cerebral palsy was making it difficult to use his eye muscles properly. He said that was entirely possible, but that kids with CP often make dramatic improvements as they age.

At this time there was no talk of glasses or surgeries.

I asked about the eye rubbing and he seemed to think that some over-the-counter allergy drops would help. He was non-plussed and in no way seemed to think that it indicated blindness.

On that note. . . I've decided to discontinue vision services. The things I've learned I will continue to implement, but I'm moving on to other things--things that feel productive.

Just for fun, here's a little video of Charlie that my brother sent me while I was on vacation. I think he does a great job with his eyes in this one.

Stupid Stress

My MIL is one of those all-natural, energy-healer type of people She's a reiki master, but she's also into nutrition, and whatever else. Basically, she's one of those people who doesn't use toothpaste, doesn't use deodorant, won't touch sun screen, and spends all her discretionary income on vitamins.

I don't have a big problem with this stuff. My opinion on these things has always been to approach them with an open mind. I let her start giving Charlie a supplement and we saw some real improvement after that. I let her energy friends clense his chakras and whatnot. I'll play her subliminal healing tapes while Charlie naps.

Generally, these things are just complementary and I can see no real reason not to do them. I always carefully read all the negative literature on an alternative treatment to cover my bases.

Well, things have taken a turn and it's stressing me out.

My MIL had a friend over one day last week while she was babysitting. They discussed Charlie's issues and things spiraled from there.

The friend suggested that perhaps Charlie's physical ailments are the result of his medications or something else in his enviroment. They googled phenobarb and read the side-effects and within a number of minutes it was the boogy man.

The friend, who I don't know, but am suddenly not fond of, put my MIL onto this doctor in Baton Rouge. Her name is Dr. Stephanie Cave and she wrote a book a while back that talked about the possible link between autism and vaccines. She's a rock-star in the autism world and it takes about nine months to get seen by her. She treats all kind of ailments and her claim to fame is identifying enviromental factors that may not be in sync wiht your child's body. My MIL asked if I would be willing to take Charlie to see Dr. Cave if she paid for the visit. I figured, why not? Nine months is a long time and by then my MIL would have probably found something else to be excited about.

So, while I was on vacation my MIL called to schedule an appointment. She carefully read the medical history that I had typed out in case of emergencies, and completely bowled over the phone operator. Long story short, we'll be seeing Dr. Cave on Wednesday.

I don't know why, but this is causing me extreme stress. I can't figure it out, but I have literally been having scary dreams about this visit. I know I don't have to do anything she asks and I know that it's just ONE visit and I never have to go back. Maybe I'm worried that she's going to ask me to do more than I'm willing. Maybe I'm worried she's going to suggest a lot of alternative stuff that will make Charlie's regular doctors nuts. I don't know why I'm having such a freak-out here.

Sigh.

Home-ish

First, let me apologize to those of you who read this through a reader. You may have been forced to read some of the semi-depressed beach ramblings that I had no intention of posting, but that somehow were accidentally posted for about seven seconds. I'm sorry if you had to endure that.

I'm back with my sweet, sweet man and feeling much better. Charlie actually cooed with delight when I got home and that is probably worth a million bucks or so. Apparently he'd started to get a little weepy in the evenings and like his momma, felt that a entire week was too long to be away.

I took approximately one million pictures at the beach including a scavenger hunt-type thing that my SIL and I did where we hunted for "letters" in the scenery. The best shots are in my blog stream on the right, so check them out if you'd like.

Basically, I have a ton to share and I think it's going to take a couple of posts to get it all out--nothing earth-shattering--just my run-of-mill observations about life, motherhood, and the like.

For now, though, I'm sitting at my MIL's house. She cooked us supper and my husband and the baby have fallen asleep together on the couch. I'm a few seconds from my actual house, but it feel good to be here.