The Problem With Potty Training

Charlie is in size 5 diapers.

That seems like a pretty bland fact, but diapers only go up to size 6.

So pretty soon I'm going to have to potty train him, or start investigating diapers for older children.

It seems like a pretty simple answer. I mean, even children with limited mobility can be trained to use the bathroom on a schedule. I get that. If I get my head on straight, I know we could accomplish it.

But then I think about the flip side. . .

Let's say I teach Charlie to pee every day at two o'clock, and then one day it's two, life has intervened, and we're at the mall. I never go to the mall, but you get the gist. . . do I take him to the public restroom? Do I physically pick him up and place him on the toilet? What if they don't have those cute, protector thingies?

And Charlie is pretty small now--what do I do when he's twelve and doesn't weight 27 pounds any more? Which bathroom would we use then? Women or Men's?

Where the hell is the manual for this stuff? I swear, it can be the most basic thing and I find my self picking it apart for hours, trying to figure out the right solution. I realize that some of these things may not be issues when he's older, but I HATE that I don't know the answers.

Sigh.

Charlie discovers popsicles and also cold headaches--quite a day.

Second Child Blues

Yesterday I was chatting with another special needs mommy on Facebook. She and her husband have decided to adopt their other children after much discussion about her son's genetic condition. I'm not doing a good job at explaining--her post on the subject is here.

Hubby and I both want another child and in the course of this chat I told her, "I want another child--I just don't want to be pregnant again." And boom! there it was. Sometimes you don't know what's holding you back until you say it out loud (or, type it).

I really feel guilty even talking about this. The special needs community is filled with mothers who have BAD pregnancies. I'm talking hospital stays, way too early deliveries, preeclampsia, other things that seem a lot worse than what I went through.

You see, my pregnancy was fine physically. I was tired, had a touch of sciatica now and then, but other than that, I was fine.

Mentally, I was a wreck. I was anxious, cried at the drop of hat, worried incessantly about everything, and obsessed over things long since passed. It was bad. You see, pregnancy pretty much destroys any and all coping mechanisms I've developed. For crying out loud, you can't even take a hot bath when you're pregnant. I spent much of my last pregnancy worrying, worrying, and you know, checking some website to see what was happening with my baby this week.

Tension levels were high at my house and according to my doctor, the baby was fine. I can only imagine what I'll be like now that I know how bad things can go at the end.

So. . . .

I guess that once you've said something out loud, acknowledged it and all that, you can try to figure out what to do about it. I'm not exactly sure what my plan is, but I'm thinking maybe going to a perinatoligist provided I get pregnant? Really, I don't know what to do. I'm just figuring the whole thing out as I go along. . .

Pictures are of our version of an Easter Egg Hunt--Charlie HATED that grass!

Dilemma

So. . . you guys remember that I ordered a wheelchair last year? Well, looking back, I can see that I posted on September 29th about our wheelchair decision. Since then, I've heard exactly nothing from our wheelchair representative. Not. One. Word.

Today, they called me. A woman asked me, "did you know your insurance doesn't do pre-approval for blah, blah, blah?" Or something like that. I told her I didn't even know what that means. Basically, my insurance company doesn't do pre-approvals for medical equipment. So, you have to order the equipment and hope that they pay for it She also told me that I would have to pay 30% up-front, which is roughly 1700 dollars.

So here's why I'm upset.

1. It took them four months to figure this out.


2. If the wheelchair had been ordered and delivered prior to December 31st, I would have had to pay $0 because we met our deductible last year. I realize that these things move slow, but since the claim isn't filed until AFTER the chair is delivered, I feel like it was possible to have had the chair ordered quickly.


3. Back when I ordered the chair, the big dilemma was whether or not to get a tilt chair. According to the rep, the tilt chair didn't have self-steering wheels. Since then, I've had another special needs mom tell me that the newer models have both tilt and self-steering.


4. I wasn't given any choices with regards to seating. Barbara at Therextras very adamantly recommends a flat seat, and the rep told me they never do that. This bothered me, but it's not like I had a lot of options. Actually, I had exactly none, so what are you gonna do?


5. I Googled my wheel chair and the base model runs about $1600. I realize there's a lot more to it than that, but it seems like they want me to pay for the entire chair and then they're going to bill my insurance company another $3700. They'll be making a pretty sizable profit for some sub-par performance.


6. I heard through the grapevine that this company is swimming in debt and may go out of business. I'm worried that I get the chair from them and not be able to get any more service for it if they fold.
   

I feel bad. I mean, a rep came out to my house and measured Charlie and everything, and I'm sure he'll lose money if I don't buy the chair from his company. On the other hand, I don't think I should reward piss-poor performance with our hard-earned money--we don't just keep it in a tub and roll around in it in our underwear.

A source of mine has given me the name of another wheelchair representative who sells the same brand of chair. Should I just call them?

Has anyone out there ever tried to just buy their own wheelchair off the Internet?

Playing in our very own "Pond." Idea shamelessly stolen from No Time for Flashcards.

The Alternative View

I'm well-aware that some of you visit my blog because of your interest in alternatives. We are actively engaged in the alternative therapy ABR and people are naturally curious about that therapy and what is involved with it.

Well, I e-mailed ABR with questions about botox and back braces and I thought I'd share their answers with you guys. I'm going to summarize, though, because they have some fairly long explanations.

Firstly, I'd like to say that there is a lot of misinformation about ABR. ABR does not discourage parents from pursuing additional therapy if they would like and encourages us to have an open dialogue with our doctors about ABR. From my experience, Charlie's doctors consider ABR a non-entity. They've never heard of it, don't ask many questions, and seem satisfied once they hear that it is non-invasive. I dare say most of them immediately file it in what my father calls "the circular file." That's fine by me. I consider doctors resources and not all-knowing beings, so I don't need them to keep abreast of every detail in Charlie's life. That's my job.

On the question of Botox, I received a two part answer. The first part of the answer was, "no, Botox is in no way counter-productive to ABR." Good. I'd hate to be working against myself. The other part of the answer told me to be mindful that Botox is not FDA approved for children (no surprise there) and that at the annual meeting of the American Academy for Cerebral Palsy and Developmental Medicine, they were cautioned that little is known about the long-term effects of Botox. She also advised me that Botox is not really a long-term solution, which I knew.

Her comments on the scoliosis thing were really interesting. Basically, she said that something like a back brace is designed to reduce further spinal damage and compression. It does not, however, make a person any stronger. ABR seeks to make a person stronger and also to create space between the vertebrae. So, we could get the back brace if we want--our decision. She then sent me pictures of Charlie's spine. The first set of pictures were taken during our initial visit to Montreal in October of 08. The second set in November of 09--roughly a year apart.


In this first picture you can see that Charlie's spine doesn't bend when he's tilted to the side. This is abnormal. A normal spine is quite bendy. Having a fused, locked spine can really impede your ability to get things done.

In this picture you can see that Charlie's spine is beginning to have some bend to it. It's not perfect, but being able to balance in the sitting position has become a lot easier and this is part of the reason.


There are several other structural changes to Charlie's body that I can see in these pictures, but I'll save all that for when they send me our annual review. For now, I know that if I go with the back brace or the Botox then at least I won't be working against myself. One less thing to worry about.

Ruminating

I was going to title this post "licking my wounds." You see, a few weeks ago I shared that a local business person was interested in selling my artwork and stationery in her newly opened store. I was over-the-moon excited. Excited to be working with someone young and creative; excited to be out in the public eye a little; just plain excited.

Well, yesterday I sent her what I believe was my third e-mail saying that I had all of my products store ready. Mind you, she's told me very exactly how many pieces she wanted and I'd even done some stuff specifically with her location in mind. In response to my third e-mail, she replies in such a way that makes me think she has no idea who I am or what I'm talking about. If the e-mails weren't physically sitting in my in-box then I would swear that I'd dreamed the entire thing.

I tried to be upbeat and professional in my response, but it's hard to find the right words to say, "don't you remember? You told me you wanted ten canvases?!?" So off another e-mail went, but in my heart I don't think things are going to work out.

I'm hurt. My ego is bruised. I'd allowed myself to be excited--I told my friends and family, and now I'm going to have to tell them it's a no-go. I hate that. I feel like a failure which is never any fun.

Today I also got a very interesting offer to work on a project that's near and dear to my heart. It has to do with special children, and information, and hope.

So I'm wondering if this is a "sign." A sign to move in new direction, try something different, and maybe, just maybe do some good. I have to tell you, I miss the days where I felt like I was doing good on a regular basis.

Sometimes you get an answer, but it's not necessarily the one you expected.

Thinking hard on this one tonight.

Here's Charlie with the ABR machine on his head. It looks crazy, but I also think he looks cute with that goofy turban on his head!

Delightful

Last week we were all lying on the couch watching TV when our big, gray cat Max jumped up and tried to snuggle in. Charlie started trying to pet him, which he's never done before. When I say "pet" I mean pull his fur out, but it was still pretty cute.



Yesterday we went for a family trip to IHOP. When we put Charlie's plate in front of him, he lunged and swiped a piece of bacon off of it. We moved it out of arm's reach since he has a tendency to over-do on the self feeding. A few minutes later I spied him reaching and leaning with all his might until he finally snatched up a giant handful of scrambled eggs, which he then promptly shoved in his mouth, pieces of it falling everywhere. He's clearly inherited his father's table manners.


Today he was practicing standing with the OT and she told him to go ahead and dance. He promptly began smiling and clapping his hands. That he gets from me.



None of these things are huge in and of themselves, but little moments like these are happening more and more often. I'm getting many more chances to see Charlie's personality.


Leonid Bylum, the inventor of ABR, speaks often about the mindset of traditional medicine versus the mindset of alternative medicine. He proposes that traditional medicine is about "protecting" our children--preventing seizures, contractures, and dislocations. Alternative medicine seeks to enhance the lives of our children. It pushes further; it expects more. Armed with this thought, I sought to enhance Charlie's life. His seizure medicine was giving us no problems and his doctor was probably never going to suggest a change.


It can be scary to make a big decision about something like seizure medicine or botox. Maintaining the status quo is comfortable and no one will ever fault you for just doing what the doctors tell you. Venturing out on your own is a solitary experience. If something goes terribly wrong you will have only yourself to blame.


This time, I seem to have made a good decision. Keppra seems to allow Charlie to be more active and present. I'm not cocky or even self-assured, though. It really is a guessing game and this time it worked out.





A rare family photo

PS: Wednesday is the last day for the giveaway on my Facebook page. I am so loving seeing so many familiar bloggy faces over there.

Murphy's Law

It does figure that a good doctor's appointment will be immediately followed by a bad one. Well, bad is a relative term. I'm facing a lot of yuck after our second appointment of the week, but truthfully I still feel pretty good.

After some shuffling, we finally got into to see the physiatrist.

He was EXTREMELY pleased to hear that Charlie was standing, pushing himself into the seated position, and even taking a few steps. He had a student in there and he began talking about Charlie's tone and his future "diplegic gait" and I'm not gonna lie--I loved hearing him call Charlie diplegic. Charlie isn't diplegic, but the truth is that we've made a lot of strides with Charlie's upper body and even though the doctors and therapists don't want to believe that it's ABR that's helping him, I know that it is. (for those that don't know, kid's that are diplegic are affected mostly in the legs. Charlie is affected all over with one hand that's pretty good)

I asked him to roll over and push up so I could take a picture and he did! Pay no attention to the over-flowing garbage in the background:)

With all of Charlie's gross motor gain, the doctor decided that Baclofen wasn't really an option for us any more. Now, he's all about the Botox. We discussed the pros and cons, he gave me a handout, and I promised I'd think about it. I will think about it. It's a hard decision. Basically, when it comes to Charlie I have a list of priorities. They are as follows:

1. Avoid painful orthopedic surgeries
2. Avoid other painful surgeries
3. Avoid filling his body with chemicals.
4. Allow Charlie to live as normal a life as possible--now and as an adult.
5. Keep Charlie comfortable

Please note that the achievement of therapy goals is not one of the reasons I do things. I don't believe in gross motor gains at all costs. Charlie does not need to walk for me to be happy. I'd much rather him live life in a wheelchair if that means he's more comfortable. This is not every parent's wish, but it's mine and right now I'm in charge. If later in life, Charlie has a different opinion then I will defer to his wishes.

As far as I can tell, the only reason I would want Botox for Charlie would be to prevent his hamstrings from developing scar tissue. Scar tissue sounds painful. There are other reasons that the PT might want it, but that's the only one that matters to me--comfort. The doctor also said that this might prevent hip dislocation, which means it meets my number one criteria. So that's one priority against and two for it--I'm considering it.

The news that I really didn't want to hear was that Charlie's scoliosis in currently at 18 degrees so he now wants us to visit with the Orthopedist. Bletch. I really don't think I can take another doctor's appointment right now, so I think I'll be scheduling that one in the new year. Also, if you refer to my list, orthopedic surgery is enemy #1. I hope to avoid it at all costs. I did a little research (aka Googling) and 18 degrees isn't terrible, so they'll probably just follow us closely at this point. Still, I don't like adding doctors to my sheet--I like subtracting them. Adding an Orthopedist to my list is a double whammy.

One last thing! I've started a new giveaway today on my Facebook page. This week's winner has a chance to win a free print AND a pack of stationery that I design just for them. I am really having fun with the holiday giveaways so go over there and leave me a comment telling me your favorite Christmas song.

Charlie has yet to find a Christmas song that he likes. Maybe if Lady Gaga wrote one.

Stepping Up

I actually had another post planned for today. It's edited and everything, but some things have come to my attention in the last few days and I feel like I have to say something.

In the last few days I've read the blogs of two different special needs parents whose children are suffering adverse effects after the long-term use of reflux medications. Both of these children ended up in the hospital undergoing a series of medical tests. We no longer give Charlie reflux medication--mostly because it never seemed to help us--but I was always told my doctors that the medication is safe and never told about any side-effects.

If there's one thing I've learned as Charlie's mom it's that no two parents are going to do it alike. You can co-sleep or put your child in another room, you can pursue alternative or go strictly traditional, you can feed them all-organic, gluten-free, casein free or you can take them to McDonalds. When your child has special needs, there are even more decisions to make and for me, the stakes seem higher. This morning Charlie woke up at 4am whining and fussing. No amount of rocking or singing would get him back to sleep and he seemed to be getting more and more agitated. I was panicking. I was sure this was related to his seizure med change and couldn't decided if I should give him some Va1ium or just wait to see what happened. Finally, my husband was struck with a brilliant idea and took him into the kitchen and fed him a peanut butter sandwich. He instantly went back to sleep.

I'm sharing that story because I want to be clear that I'm no doctor and I'm no expert. I'm as confused as anyone else about the right things to do for my child.

But I also think that it's time we "Special Parents" started asking some tougher questions. I myself can think of at least four different questions I've never asked our doctor or even researched when it comes to medications. For example, do medical students take classes in pharmacology or is that covered more in residency? Are drugs ever tested on children? What kind of data is available about the long-term use of medications in children? Is it possible that kids with CP, with their funky digestion and limited mobility, process drugs differently than typical children? Whose job is it to tell us about possible side effects?

This doesn't mean that I think we should stop giving our children medicine. I just think we need to be hyper-vigilant. We are still our child's best advocate. I know that even as a tiny baby, doctors would recommend over the counter products that were contra-indicated for Charlie's heart condition. Who knows how many other times this happens? Doctors are stretched thin these days and we would be best served if used them as a resource and not as almighty beings.

I know this parenting thing is never easy. I know we're all doing our best. I also know that for me, I'm going to try harder to be informed about the medications that are recommended for Charlie. I'm also going to try to limit the use of medications for extended periods of time.

OK, stepping off my soap box now--don't forget to enter my giveaway to win free art or stationery! If you don't want it for yourself, it would make a great gift.

Thankful for Good Drugs

We've begun the great Pheno-wean of 09. This is thrilling stuff, I know.

As I've mentioned before, we began weaning Charlie off of Phenobarb a few weeks ago and switching him over to Keppra. We weren't having a problem with seizures, but I was concerned that he was a little mellower/sleepier than I thought your average two-year-old should be. Also, when not actively engaged, his eyes often had a glassy/half-mast appearance. I didn't know what effect the medicine was having (if any), but many parents reported problems with lethargy and Phenobarb, so I thought it was worth investigating an alternative.

I am SO glad that we did.

Don't get me wrong--things aren't perfect, but it is soooo much better than where we were before.

The first three nights after we started the wean, we saw a few jerks--like when you're dreaming and then you think you're falling. I did a lot of googling and couldn't get a real clear answer on whether or not this is considered seizure activity. Those have gone away now.

Charlie is now sleeping less and he's more restless when he does sleep. He goes to bed on time and wakes up at the same time, but his nap has almost disappeared. It's a cat nap. For the record, the neurologist assured me that Phenobarb was no way affecting his sleep habits.

Those are the negatives. Ever the conscientious journalist, I want to give you both sides of the story.

The positives are really good. The first thing I noticed was that he didn't seem to wear out as quickly. After a rigorous PT or OT session, he could still keep his eyes open. Then, he started to become more visually attentive. The vision thing is cool. He looks around more often and with more purpose--you don't need flashing lights and music to get his attention. His eyes look brighter. I'm seeing less cross-eye when he tries to focus. The PT noticed his vision when she saw him earlier this week. He's also more interactive. He giggles more readily, but he's also quick to let you know if he's unhappy. I guess some people would view that as a negative, but not me. . . I want him expressing himself.

We're currently at 25% of his original dose of Phenobarb and pretty close to full-strength on the Keppra. I can only hope that the rest of the wean is as smooth. Do me a favor and knock on some wood, kay?

Freudian Slip

Well, I missed my appointment with the Physiatrist today. They told me two-fifteen and I heard two-fifty. I showed up smiled, and they told me I'd missed my appointment. We go back next week.

I definitely think it was some sort of Freudian thing. I really don't want to go to this appointment. I've put it off for about two months, but the PT keeps asking about it, so I figured I'd better go ahead and schedule it.

You see, I'm facing what I would call a pressure sandwich.

I've got the physiatrist who wants to put Charlie on Baclofen. I don't want to put him on Baclofen, but I'll still have to listen to the benefits of it. Including some stuff that I think is total crap. Stuff like, "it really only effects the tight muscles." Right. An oral medication. Sorry, but my barely-passed-Biology brain finds that a little hard to believe. Also, Charlie's PT and OT feel strongly that Baclofen is not the way to go.

The PT and the OT are lobbying for Botox injections in Charlie's hamstrings. The doctor, on the other hand, doesn't think that Charlie's condition is severe enough to warrant Botox. All of Charlie's alternative peeps (which includes my MIL and my husband) think that botox is an unwarranted poison that doesn't need to be anywhere near Charlie.

So you can see the situation I'm in. No one agrees. There's no consensus. Also, all these people and all these opinions won't be with me in the doctor's office. There, I'll be alone.

Is it any wonder I don't want to go?

Those Damn Decisions

You know the expression "you're dammed if you do; you're damned if you don't"? Well, that's how I'm feeling right now.

Charlie's therapist is worried about his hamstrings. His physiatrist is worried about his hamstrings. I am not worried about his hamstrings.

This puts me in a bad situation. Everyone is recommending interventions for said hamstrings and I don't want to do any of them.

Here's the deal: Charlie cannot keep his leg straight at ninety degrees. For those of you that don't understand, if Charlie lies on his back and I hold his leg straight, I can't get it all the way up to ninety degrees. If you stretch him slowly, you can probably get to 85. If you move his leg quickly, it's a lot less--I'm not sure how much less, he tends to tense up if you try something like that.

When he stands, he starts off very straight and as he tires, he starts to crouch. The PT is convinced that this is because of his tight hamstrings. I think it's because of his weak everything else.

The pressure is starting to build.

The PT would love to see him in a stander for several hours a day, but we've got two second-hand standers, neither of which is easy to use and one of which is probably dangerous, so we don't really like putting him in the stander. We do a lot of free-standing in an attempt to make up for this. Buying a new stander is pretty much out of the question because they cost thousands of dollars and we don't have thousands of dollars to spend on medical equipment we're not sure we even want. I offered to purchase a second-hand stander, but the PT was not at all enthused about that idea.

The Physiatrist wanted to give Charlie the muscle relaxer Baclofen, which I refused. Charlie doesn't need muscles relaxers--he's weak enough all ready. He'd end up with decent hamstrings and the rest of his body would resemble spaghetti noodles.

So now the PT is asking about Botox and I'm just not feelin' it. From what I can understand, no one is worried about Charlie's hips. No one thinks that his tight hamstrings are affecting his ability to stand/walk. His hamstrings are not rapidly getting worse--they are changing very slowly.

I just don't see the purpose of it. I'm thinking that maybe somebody should explain that to me? Of all the choices, Botox appeals the most, but it doesn't really appeal. I feel like I'd be subjecting Charlie to an invasive medical procedure to please his doctor and his therapist. Something's out of whack there.


I know that everyone who works with Charlie only wants the best for him, but in this case, I'm not so sure that we're all in agreement. I have days where I just want to turn off the lights and act like nobody's home because it can be HARD to listen to everyone else's opinion day in, day out. I've been burned by medical professionals before, so I'm not going to just do everything I'm told. But then I feel like I'm guilty of child neglect if I don't take their recommendations at face value.

It's one of those decisions.

Pictures taken today at the New Olreans French Market. As kid we always went there to get our pumpkins and now I get to take Charlie!

Quality of Life

Five months ago we went to see Charlie's physiatrist--for those who don't know, a physiatrist attends to sports injuries and also to issues related to neuro muscular disorders like cerebral palsy. He assess joints and range of motion, and prescribes goodies like braces and wheelchairs when needed. He's also the guy who could do a Botox injection into tight muscles if we needed it.

On our last visit, he discovered that Charlie's hamstrings have become even tighter than they were previously. He recommended Baclofen which is an oral muscle relaxer. I'm not interested in giving Baclofen to Charlie. First, it's a drug and I'm trying to keep the number of drugs we take down to a minimum. Second, it's a whole-body muscle relaxer and most of Charlie's body is floppy.

I have a whole bunch of other reasons, but I didn't really want to talk about that today. I wanted to talk about a little unspoken component that really sealed the deal for me. Something that I think isn't addressed enough.

As the doctor was describing Baclofen, he mentioned that it's administered three times a day. THREE TIMES! That's a lot. Even on my best days, I'm pretty scatterbrained and my husband often has to remind me to take any medicine I've been prescribed. Remembering to give Charlie a lunch-time dose of something is extremely difficult for me. I'm not saying I can't do it--Charlie had a heart medicine that he took for the first year of his life that had to be administered every day at 2:30. I did it, but it was hard. I'd often forget, I'd beat myself up for forgetting, and then I'd have to figure out a good time to give the next dose.

For me, it became a quality of life issue. And that's something that I think a lot of us forget sometimes. We are so eager to do things for our children that sometimes we follow every piece of advice we're given without thinking about the big picture. I'm not saying that I would never give Charlie Baclofen, but right now the pros don't out-weigh the cons. There's no risk to his hips, and the drug would not help him to walk. Many, many children benefit from this drug, but I don't think he would be one of them. In the grand scheme of things, it becomes one more thing on an already too-long to do list; it's yet another consideration when leaving the house; it's a worry in a mind that it full-up with worries.

I'm trying to remember this as I make plans these days. Trying to schedule in fun as well as therapy. Respecting rest as well as business. I believe that in the end, my family will be grateful that sometimes we said no to one more appointment, took a long nap, or sang a silly song.

Pictures taken at a recent trip to the zoo.

Mother Knows Best

If you read my post entitled Beliefs, then you know that I think some of the best information about raising a special needs kid comes from parents who have been there before you. Today I wanted to open up my comments so everyone can share their experience on a particular topic.

I want to know everything you guys know about diets for special needs kids and/or food allergies.

Maybe it's just me, but it seems to me that a very large percentage of special needs kids have food allergies/intolerances. I also feel that medical professionals are either quick to write off concerns or even scarier, quick to recommend a feeding tube/nissen combination surgery. I'm not saying that these are unnecessary surgeries, but personally I'd like to start with the least invasive option.

For us, sometime around six months, Charlie started to reflux terribly. Before that, it had been normal baby stuff and suddenly it got really bad. ABR helped, but it was still happening and--I'm going to get graphic here--when he did spit up, it looked like the milk had curdled in his stomach and it had a horrible sour smell to it. Then, one weekend, I had a conversation with my friend's sister whose married to a doctor and has two typical children. It had taken them almost a year to diagnose her child's food allergies--the doctors kept calling it reflux. After hearing that, I decided to just cut milk out of Charlie's diet for a week. Presto! Reflux was gone. He still gets it from time to time when he's feeling sick, but things are a LOT better.

I've also spoken with parents who've gotten seizure control with diet and many, many parents mention that their children behave better or have increased attention on certain food regimens.

So please, leave me a comment. Tell me about your child and their food. I'd love to here from special mommies who have kids on certain diets, but also from parents of typical kids who've had any notable food experiences. Feel free to write a ton and include links if you know of any. Let's share all the information we've got and I plan to put up a link to this post so it can be a resource for others.

**Quick edit here: G-tubes are often the only solution for children who cannot consume enough calories. Charlie himself went home from the hospital on a g-tube and used it for a few months before being able to take food by mouth. It was a neccessity.***

Decided

I've still got a ton to say about education and I promise to continue with all the questions next post, but I just wanted to add a little something.

People who read here regularly know that I've been struggling with what to do about Charlie's epilepsy medication. I suspect that it's making him dopey and I hate that.

Well, I've had a little confirmation recently.

You see, Charlie has FINALLY gained a little weight. He was flat-lined for a long time, but now that he's discovered the greatness of sandwiches, he's put on close to a pound. Please don't misunderstand--the kid eats. And eats. This morning for breakfast he had a bowl of oatmeal, an egg, and a slice of toast. He eats plenty, but he burns a lot too so it's a struggle to get weight on him and keep it on.

Anyway, with this little bumb in weight, I've noticed some personality changes--he's giggly. He'll just be hanging out in his room giggling while he plays. I love that. He's also much more interactive. He catches your eye more often, he smiles in response to things you say, he rolls over to me and tries to pull my hair. He's still scared to death of the lady at chick-fil-a, but he seems really social to me. I can't help but wonder if this isn't his personality breaking through the seizure meds.

We have an appointment for October 7th. I've got to be strong (whimper). I've got to find an alternative to our current situation. I owe it to the giggly Charlie.



And in case you want to see just what he does that burns so many calories, here he is climbing, which is does many, many times a day.

The Swirl

If I were being honest, I think that I would have to admit that I have a pretty hard-core case of ADD. I don't have ADHD--I could sit on my butt for hours--but my mind is pretty much off to the races. I hate to do one thing at once--even as I write this post I have a game of spider solitaire going and I'll probably check my Twitter, Facebook, and e-mail before it's finished.

I did fine in school although I think I listened to my teacher about never--I spent a good deal of my time decorating my monthly calendar and sketching what I was going to wear to the next formal. I mean, a girl has to have priorities, right? To the annoyance of many of my classmates, I had good grades, so I never really noticed my extremely distractability.

In college however, it was brought to my attention that I am literally incapable of sitting through a movie without either a running dialogue or a magazine. I can remember at least one occasion where I was banished to another room during movie time.

I've never sought to medicate myself for it or anything. I CAN keep quiet although I'll probably have a notepad full of doodles at the end of a meeting. Truth be told, I'm fine having a brain that's always looking for the next thing. The only real problem it gives me is insomnia--there are nights when I just can't shut my brain off--but I suspect that if exercised a little more regularly that even that wouldn't be as much of a problem.

So where was I going with this?

Oh yeah. When you have a brain like mine, there's an endless list of things that flit in and out and sometimes it takes a while before you grab hold of one of them and really start chasing it down.

But lately I seemed to have grabbed hold of something and I can't seem to let it go.

A couple of weeks ago we went to have dinner with a college buddy of mine and my husband's. He's fully aware of Charlie's issues, but we don't see him that often, so when we sat down I gave him a quick appraisal of the situation and this is what I said, "think of Charlie as someone whose had a little too much to drink--he knows what going on but it might take him a little time to act on it." At which point my husband muttered, "well, he is on Phenobarb."

I kid you not, it was like someone had slapped me in the face.

I mean he IS on Phenobarb. And he does often have a sleepy expression on his face. And I've been blaming it on low tone this entire time, but what if it isn't low tone? I've never known Charlie not on Phenobarb. I've heard other parents describe their children as lethargic and sleepy on Phenobarb and yet I never felt it was having that effect on Charlie. But really, I have no idea.

So now that thought is racing through my brain and I'm trying to sort out how I feel. I KNOW that Charlie has abnormal brain waves and while abnormal brain waves put you at a risk for seizures, there's no guarantee that a person will actually have seizures. And even if he did have seizures, would they be big, bad, scary grand mals or would they be petit mals? or partial seizures? Are there other drug possibilities? My ADD brain is combustible with questions. And while there are other parents who have traveled this road or who are traveling it now, I still don't know what the effect would be on my child and it's not a decision I really want to get wrong.

So here I sit and I'm fairly certain my poor neurologist is going to get a visit and a list of questions, but man is that thought scary. It's never easy to rock the boat, but maybe this time it's worth it.

My husband said these were horrible pictures, but Charlie really liked his trip to the Aquarium and I wanted a little memory of the trip, so there ya go. Crappy pictures taken by my not-very-fancy camera.

The Big Debate

Have you heard the debate about vaccinations?

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.

Ahhh, the Politics

What She Wore: blue jean capris (do I have any other pants?); purple and yellow polo shirt; brown, slip-on tennis shoes.

What She Ate: Went with mom, dad, and grandpa to a local pasta place. I had Piedini Milanese--basically, breaded pork medallions and pasta with Alfredo sauce. Pork was fabulous, Alfredo was fine, but not as good as I make at home (just my opinion). I brought home my mother's Enchilada Pasta leftovers and I'll probably have that for dinner.

Just when the keel gets slightly even. . .life throws a curve ball (doesn't it always?).

My husband had three best friends in high school. One, his oldest friend, lives in the area and we see him and his girlfriend on a pretty regular basis. One has moved off to Atlanta. The third is a bit more complicated.

Long story, very short: He got in a fight with my husband's oldest friend, married a girl that no one really knew, and somewhere along the way my husband lost touch with him. I don't' think we've seen or heard from him since our wedding over six years ago.

Well, he's gone through a number of major life changes and through a little serendipity got my husband's e-mail address and dropped him a line. He's got two daughters of his own (we knew about one), and a step-daughter as well. He's also got a new job, a new wife, and even a new name. He lives about 45 minutes away, and he suggested we get together for dinner with the kids, wives, etc.

Herein lies a multitude of issues.

First, the simple: Being friends with two people who don't get along is a minefield. Do you mention the other person? Act like they died? It's difficult. I've cried my share of tears over this issue myself and the Hub is nervous as hell to put himself in a similar situation.

The second is pretty simple as well, but it's going to be coming up a lot quicker: if we do get together for dinner, we're going to have to send some sort of warning e-mail about Charlie and his multitude of issues. Otherwise, dinner is going to be filled with some awkward explanations or uncomfortable silences. To the casual observer, there's nothing wrong with Charlie, but a little bit of time and you might start to wonder why he doesn't look at you. Plus, his issues are a part of our life and it seems dishonest to get together with old friends and gloss over the most important thing that's happened to you in the last few years.

So, how to word the "warning" e-mail? I told the Hub to list very specifically what issues they would be seeing. Something along the lines of "he had a stroke; it affected his vision; he has delays as well." Short and simple and if they want to know more than I'm more than willing to get into the nitty-gritty in person. The Hub wanted to say that he had a heart problems and a brain bleed, but he's getting better now. I think that it would make me nervous if I was about to have dinner with a baby that had a brain bleed. I would want to know exactly what kind of issues we were talking about. Of course, most people assume the best, so maybe I'm worrying unneccessarily.

What do you think? If you had to have meal with someone's child who had "issues" what would you want to know in advance? Let me know.