Good Things

In no particular order, some thing that are making me happy:

1. The Cure Pity website brought to my attention by Felicity. If it doesn't make you smile at least a little then you might want to have your pulse checked.


2. Winning this pair of earrings from Amy's giveaway--her sister made them and they are delicate and beautiful. And purple and gold, which is a big deal in my neck of the woods. My camera isn't doing them justice, but they are beautiful and only seven dollars if you wanted to buy a pair. Go check out her site--also, 30% of her profits go directly to charity work in Africa so you can look good and feel good.


3. This post on Flotsam Blog--mostly because we are ob-sessed with Signing Time over here.



4. This song by Cowboy Mouth--my favorite line being, "if you do it at all, then you oughta do it right." So true.







5. We're headed to Plano next weekend to learn some new ABR exercises for Charlie. These exercises have been so good for him I'm literally dying to go learn some new ones.




6. My brother and his fiancee are getting a puppy--she looks like a doll and I get to meet her this weekend.


7. So far so good on the Phenobarb wean. Really, he's probably still got plenty of it in his system, so this isn't the biggest deal, but I like to look on the positive.


8. Charlie met another goal in physical therapy--sitting (no prop) for twenty seconds. Next up: thirty seconds!
9. Charlie's dancing:

Now go up there, click on one of those videos and rock out a little--it's the weekend!

Neurology Update

Well, today was the big Neurology visit.

Today was the day I was supposed to go in there and get my kid off of Phenobarb.

I was somewhat successful.

If I'd gotten everything I wanted, I would have started to wean Charlie off of Phenobarb. IF we had seen seizures or concerning activity, then I wanted to start of something else--my first choice being Keppra.

Well, the Neurologist wasn't really having that. She said we could lower his current Phenobarb dose, or we could try a new drug all together. She wasn't really comfortable weaning him off and then playing wait and see with the seizures. Charlie's EEG is pretty ugly so I could see her point. One day I would like to pursue controlling things strictly with diet, but most anti-seizure diets involve cutting carbs and Charlie is currently in the throws of a serious crush on peanut butter and jelly sandwiches. I think this is a normal toddler thing--being obsessed with one particular food--and I'm hoping it doesn't last forever.

I didn't want to keep up the Phenobarb at all--the stuff is a barbiturate and I just don't think he needs to be taking it forever. Her next choice would be Lamactil, but I haven't heard anything about that drug so I countered with Keppra. She said Keppra was fine and wrote out a schedule for taking us off of Phenobarb and putting us on Keppra. I also asked her if she thought we should have some Diastat in case Charlie does have a big, bad seizure. She thought yes, but they don't make Diastat in doses small enough for him, so she gave us a prescription for Va1ium instead. Despite my family's jokes, the Va1ium is for Charlie--not me.

She also asked other Neurologist questions although at this point I do think she trusts me to take care of Charlie and doesn't probe for hours. She was pleased to hear that his vision is improving and also that he could get himself up twelve inch step. She warned me that we would have to stay vigilant about his eyes--his at an increased risk of lazy eye since his eyes don't always function as a single unit. She also reminded me that he needed to be standing every day.

I kept Charlie calm through the thirty-minute conversation with medical students and the twenty-minute conversation with the neurologist by letting him listen to the iPod. Everyone loves watching Charlie listen to his music--he smiles, coos, and sometimes even giggles if a particularly fabulous song comes on (this week Pitbull and New Kids on the Block are popular). At the end of the appointment, the neuro said I should tape him listening to his rap music and put it on Youtube. Little does she know this kid's entire life is on the interwebs.

Tomorrow we'll hopefully start the great Phenobarb wean of '09. I'll keep you posted.

Communication Breakdown

About a week and a half ago Charlie's reflux started acting up. I've been extremely proud of all the progress we've made in this area--Charlie takes no medications for reflux any more. We keep things in check by limiting his dairy intake and giving him a natural herb called Slippery Elm that helps to heal the digestive tract. ABR has helped too, but I'll stay off the soap box for today.

When Charlie starts refluxing these days, it usually means that he's gotten some type of cold or other illness and in general his body just doesn't seem to work as well in these situations.

My first hint that something is amiss is that he'll start biting his forearm. I have no idea what the correlation is, but for some reason he bites his forearm when he's refluxing. If it goes on for a couple of days then he'll have a circular bruise on his upper arm from all the bites.

So about a week and half ago he starts with the arm biting and I assume he's picked up cold. His PT comes and as soon as we get him into standing, he refluxes exorcist-style. It was so bad that I cancelled our Feldenkrais appointment and took him in to see the pediatrician. Other than some weight gain (hooray!), nothing of any consequence was discovered.

So the reflux continued and I still had no idea what was causing it. I just kept thinking that it would run its course.

This morning, after nine days of reflux, it finally occurred to me to ask my husband if Charlie had been getting his usual morning dose of Slippery Elm. Hubby is very good about these things--that's part of the reason why he's in charge of them--so I had assumed that everything was OK in this department. Imagine my surprise when he said, "yeah, I've been meaning to bring that up--we've been out for a while."

Good. Lord.

Here I am, making appointments, making assumptions, having lousy therapy appointments, playing House, and all the while the answer to the reflux mystery was right in front of me.

Assumptions--they'll be the death of me yet.

I'm Not an Eternal Optimist

Sometimes I think that people who read this blog think that I'm an eternal optimist. I definitely don't think of myself as an optimist. I consider myself a realist. For me, part of being a realist is trying to avoid looking at the world through disability-colored glasses. I think everybody does it from time to time--assumes that what we're going through is tougher than what anyone else is going through. It's natural.

The other day Hubby was talking about one of his co-workers kids--saying how much easier he thinks it is for him. He tells me, "they just bought him a car that he can steer." And while I'm sure that there are things that are easier when your child is typical, far be it from me to make any assumptions about someone else's situation. And honestly? These people live in an apartment. The idea of a two year old in a motorized vehicle in an apartment is horrifying to me. Think of the wall damage.

I'm sure I do it too.

The other day I went to our local, mostly-accessible playground for a birthday part with Charlie. I brought my MIL along because Charlie pretty much needs one-on-one attention and I was hoping to catch up with some people I hadn't seen in a while. My MIL was on one of the big swings with Charlie in her lap and I was sitting at a picnic table alone, just watching them. A woman sat down next to me with her daughter who was at least five, with very low tone riding in a Maclaren stroller. You can never be completely certain, but I was pretty sure the child was disabled.

I smiled broadly at the woman and her child--excited to be around a fellow special needs parent. The woman ignored me. "Hello" I said in my warmest, friendliest voice. "Hello" she replied, resisting any sort of eye contact, keeping her gaze firmly on her other daughter and husband who were playing on the swings. I continued to look her way, trying my best to look friendly and open-minded.

In the end, I never really talked to her. She pushed her daughter away, and I never got up the courage to say anything else.

So I wonder. . . is the disability thing as isolating as it sometimes seems? Am I open to meeting other people who might be open to Charlie? Or am I too busy playing Mama Bear to give anyone else a chance? Do I sometimes miss an opportunity because I'm scared of being disappointed?

I'm not an eternal optimist. . . but I do play devil's advocate and I wonder. . . are there things I could be doing differently?

Miracle Veteran

Candace is having a contest over at her blog. Candace invented the term "Miracle Veteran" and now she's doing a contest for all the miracle veterans out there. The contest is simple--she wants parents to describe one miracle they've witnessed while raising their special needs child.

Well, I started drawing a blank on this one. I could completely relate to the term, but suddenly all of Charlie's little accomplishments seemed, well, small.

And, man, how easy is it to do that? To work towards a goal with your child, accomplish it, celebrate, and then immediately begin taking it for granted. Just because it's expected, that doesn't mean that it isn't amazing and beautiful. It doesn't mean that there isn't some other parent who wishes that their child could do that. Sometimes we're hurrying so quickly towards the next goal that we forget to really celebrate the ones we've achieved.

So this might not count towards Candace's contest, but today I'm just going to list all the things that Charlie's accomplished. The things that I take for granted, but that many people thought he may never do. My miracle list:

1. His heart beats steady and true with no medications.
2. He swallows thin liquids easily.
3. He takes every meal by mouth.
4. He eats food of all kinds with no problems.
5. He self feeds (with his hands).
6. He holds toys in his hands.
7. He plays with toys.
8. He sees.
9. He tracks moving objects.
10. He rolls in both directions.
11. He grabs his feet.
12. He prop sits.
13. He laughs.
14. He drinks from a cup (very messily)
15. He reaches for items of interest.
16. He commando crawls.
17. He watches TV.
18. He rides in a grocery cart.

Yes, these are basic things, but they're the kind of things that we never knew if Charlie would accomplish. Life is never what you expect, but isn't it wonderful when it's surprising in a good way?

Good Things--OMG Edition

This one's short, but man we've had a great couple of days around here.

1. All the wonderful advice and encouragement I receive on my last post.
2. Charlie can now sign "cup" fairly consistently. He's still doing it mostly when prompted, but at least twice now we think he's done it independently. Progress!
3. Charlie's right hand, which is usually fisted when he's awake, is starting to open up. He's even managed a couple of normal claps which he's never done before (usually it's more like he's slapping a fist).
4. Charlie has started taking steps with his left foot. We still have a LONG way to go in the walking department, but this feel nothing short of miraculous. Walking of any kind feels like a complete bonus--we were assured he'd be in a wheelchair and it just surprises me that he may also be able to get around the house on his own.
5. I found a girl who wants to sell my stationery and custom alphabet canvases. She's a local entrepreneur type whose been super-successful selling in other people's stores and now she's opening her own little boutique where my stuff will be available on a comission basis. I'm sooooo excited to be working with her. So. very. excited.

That's all!

Acceptance

I often feel that parenting Charlie is a lot like those games they used to have at Chuck E. Cheese. You've got a mallet in your hand and you're supposed to hit some little critter--maybe a gopher?--as it pops out of the ground. As soon as you've bopped one into submission, another appears. Bop that one, and there's another waiting. With Charlie it seems like that. In the beginning it was eating and head control. After that it's sitting and solid foods. On and on it goes with specialists, therapists, and parenting books constantly presenting you with another worry or goal.

These last couple of weeks I've really had to face the fact that Charlie isn't talking and it's time to do something about it.

I feel fairly certain that this will not be an easy activity. You see, Charlie has pretty much no interested in communicating anything other than happiness or displeasure. As far as he's concerned, those two emotions are enough to get most of his needs met.

We've taught him a few signs--he could actually sign "more" before his first birthday--but he doesn't like you use them. We're starting to push. Our goal is to add a new sign to each week until we've got most of the basics down. Last week we worked on cup. This week I'd like to work on "movie," but that's more complicated, so I'm not sure how it will do.

It's just hard for me to accept that this isn't something that he wants to work on. I think I'm OK with the idea that he may not speak--the idea that he doesn't want to is hard. It's hard for me to accept the amount of work I'm going to have to put into it. It's hard for me to accept that he may be five or six years old before he has a good way of communicating with me--or longer. Even worse is that he doesn't seem interested in communicating.

So I've been grieving a little bit. Wondering if I'm doing enough or doing the right things to help him. Wondering if I'm holding him back. Wondering if there's something I haven't tried.

But I'm also doing the only thing I know how--making a plan. That's the only way I ever get over this stuff--focus on the stuff I can control.