Tuesday, December 30, 2008

Home at Last

Well, we're home.

I have to say that it wasn't too bad as far as hospital visits go. I watched DVDs and sketched a little and it's hard to complain too much about that. My only complaint would be that I had to have people bring me food because I couldn't leave Charlie while he was there. It could definitely be worse. Mostly, we just hung out while he got fluids pumped into him.

Charlie caught something called herpangina. Basically, it's a virus that causes sores in the mouth and in his case it also caused some serious, exorcist-style vomiting. Apparently, it's a common childhood illness and doesn't appear to be related to his other issues. He's doing fine now after charming all the nurses and getting tons of attention. He still has the sores in his mouth, but they are healing and don't seem to be bothering him very much. I'm eager to get to work on some art projects and thrilled to be home. I've even come up with some ideas for blog posts!

Sunday, December 28, 2008


So, Charlie's in the hospital. He started feeling bad day before yesterday and we brought him to the emergency room at about six a.m. yesterday morning. We were there for almost the entire day before they decided to admit us.

It's not his shunt or an infection, so we're operating on the assumption that it's a virus. He threw up a ton yesterday, but seems better today. He won't eat or drink, though, so he's getting IV fluids. I HOPE we'll be home by tomorrow, but I'm not really sure. I'll update when we get home.

Friday, December 26, 2008


Well, I can't leave that post up any longer, so I guess I better write something!

Christmas was good. My favorite part was Charlie crawling around on the floor trying to get to different things that interested him. I realize that it's about a year behind schedule, but I love it when he does regular kid stuff.

The hubby and I have been visiting our brains out, and honestly, I'm tired of visiting. Scratch that--I love visiting, but I miss my house and my regular schedule.

I have plenty of news, but the longer you wait to post the harder it is to come up with something coherent.

Saturday, December 20, 2008

No Go

Well, I didn't get accepted into the art show. I expected to be really disappointed, but I'm actually feeling OK. I think that if you paint things that you like and are proud of then it's OK if other people don't like them.

I've found another show to enter. Take two?!?

Christmas Tree

Omigosh! It's been ages since I bored you with pictures of my day-core! Here's the front room with it's new love seat that can also fold out into a cot. Also, my most-fabulous X-mas tree. The couch would look better if I fluffed the pillows and moved my cell phone charger, but I'm sure you can get the idea. I'm eventually going to replace the shades and the glass table on the right, but this room is making me very happy right now.

Also, here's a picture of Charlie exploring the Christmas tree while using his Rifton gait trainer.

Wednesday, December 17, 2008

Grand Finale

Thanks to all of you who commented on my blue-ness yesterday. I think it's normal for everyone to have blue days--just can't get too caught up in it.

Today we visited the cardiologist and we were officially dismissed from Cardiology. We NEVER have to go back. Now, we only have four doctors. One medicine and four doctors. It's getting crazy-manageable over here.

Tuesday, December 16, 2008

Two Down

Well, I can check physiatry off the list. The appointment went well.

Charlie isn't any tighter anywhere and hasn't lost any range of motion in the last six months. This is a good thing because he is having a bit of a growth spurt and I was worried that he was tightening up in the hamstrings.

The doctor said that I was fine with cutting out milk and urged me to try soy milk. He said that if he's allergic to soy milk then he'll probably throw that up too and we'll know. He said we could do allergy testing if we wanted, but he didn't recommend it since we seemed to know the source of Charlie's issues.

I told him about ABR and he was fine with it. He actually said that anyone who does what he does needs to be comfortable with alternative therapies. So many parents of special needs kids pursue alternatives. He also said that any doctor who puts up roadblocks isn't a very good doctor. All in all, that's as good a response as I could hope for.

He said to keep doing what we're doing and to come back in six months for hip x-rays. He also said that things would "ramp up" when Charlie turned three. I don't know what the heck that means--any more therapy and I think we'll both go nuts.

So, the two big appointments went well, and the appointment tomorrow with cardiology should be uneventful. I have to admit that I always feel deflated after these things. Charlie is doing SO well, and he looks especially great if you think about all he's been through. Few people survive the kind of brain damage he's had, and fewer still thrive. Even so, I wonder and worry and these visits only exacerbates these emotions. I am so excited about what he CAN do, but I realize that he is still behind. Is it OK to be a little blue even though things are really, really good?

Monday, December 15, 2008

One Down, Two To Go

Well, the neurology visit went very well. They're always super-fast and this was no exception.

Basically, the neurologist was very impressed with all the things that Charlie is doing. She couldn't believe he's commando crawling or doing any of the other things he does like holding toys and pulling himself up in the stroller. She expressed her belief that some of his vision issues are cortical and I couldn't disagree. If this is the case, then he still has more time for vision improvement. Personally, I'm reserving judgement for a later date. . . we'll see what his vision becomes. She also really like the way he was bearing weight through his legs.

I told her hesitantly about ABR and she wasn't worried about it in the least. She said that people who have big problems with alternative therapy usually don't have kids of their own.

We discussed whether or not we want to have another EEG done to look for seizure activity. I decided against it. I think one EEG a year is enough, so we'll another one done in six months. His last one was "improved," and right now that's enough for me.

She decided to switch Charlie over to the pill form of Phenobarb. We're supposed to crush the pill and then mix it into his dinner. The good thing about the pill is that you only have to give it once a day. So now we're down to one medicine, once a day. Unbelievable.

So, a good visit!

Friday, December 12, 2008

Progress Report

So I've got appointments with the physiatrist and neurologist next week. ABR encourages us to tell our doctors about the therapy, and I'm dreading that conversation. Dreading. It. I know how doctors are going to react to this stuff and I don't feel like I should have to defend my decisions. I mean, my money, my baby, my research. Still, I'm sure there will be some splainin' to do next week. As I usually do, I'm going to list Charlie's accomplishments since our last visit. Typically, I don't end up repeating this list verbatim, but it help put things in perspective.

Charlie can:

  1. Can figure out how a variety of toys work--levers, sliders, switches, and buttons.
  2. Uses individual fingers to operate buttons.
  3. Commando crawls--can do it across a room.
  4. Claps on command.
  5. Shows awareness of routines such as asking for food in restaurants, reaching for light switches, "helping" with getting dressed, lifting hand in high chair, and doing appropriate motions during songs.
  6. Can take off socks and bib.
  7. Knows where things are if they have been covered up.
  8. Makes "g" sound.

Since October:

  1. Prop sits with one hand off the ground--occasionally lifts both hands.
  2. Rolls onto his stomach.
  3. Rides in a grocery cart without safety strap.
  4. Grabs the spoon while being fed and places it in mouth.
  5. Reaches for things of interest outside of immediate grasp.
  6. Can identify nose and mouth.
  7. Chooses activities using choice cards.
  8. Has begun initiating steps in Rifton Gait Trainer.
  9. Spit-up has gone down 90% (or more). We went down 90% with ABR and were able to ditch Prevacid. He doesn't spit up at all if we eliminate cow's milk.
  10. Makes longer and more varied sounds.

When I write this list it's clear that while Charlie is continually making progress, he's seen some real big jumps in gross motor since we started ABR. I just cannot say enough good things about therapy. If you're on the fence and can't decide, then I say, "get thyself to Canada!" If you regret it then I'll be completely shocked. I felt like a complete lunatic heading off to a foreign country to pursue "alternative" therapy, but it has been completely worth it. Plus, the exchange rate is pretty favorable right now, so no time like the present to put down a deposit. I'll be frank about finances and say that we have received several generous gifts from our family that has made this whole journey possible so far. We have no idea about the future. I do know that if it has to come from savings then it will. If I have to put it on a credit card and pay a ridiculous percentage then that's OK too. I can't put a price on hope and that is what ABR has given us--hope that our child will have more and will be able to do more.

Thursday, December 11, 2008

Famous Last Words

About a week ago Melanie was complaining about the snow. I invited her to move on down to South Louisiana where it snows every ten years and when it does it still doesn't stick. Should've kept my mouth shut. It wasn't snowing when I went to bed at about two in the morning, but it was when my husband woke up at six-thirty. This might not happen for another thirty years, so it's photo-worthy. Charlie has a nasty cold and wasn't too interested in the whole snow thing, but I figured my family would kill me if I didn't take at least a few baby in the snow pictures.

These photos also include the first ever shots of Charlie with both hands off the ground. Hooray for progress!

Wednesday, December 10, 2008

Photo Shoot

Tuesday, December 9, 2008

Another Awesome Surprise

Or not so much.

I've been having some medical issues. Nothing serious, but the symptoms concerned me, so off to the doctor I went. After the single most embarassing exam ever, it was determined that I need to have a colonoscopy in the New Year.

Can you say woo hoo?


Charlie is getting so strong these days that his OT exclaimed in the middle of therapy on Monday, "I think I need to go to Canada!" Everyone has been really impressed with the gains Charlie has made. We're going to see the neurologist and the physiatrist next week, so the timing is good. He made a lot of good progress since the last time he saw them around his first birthday. I'd say it's pretty impressive--not hard to be impressed by your own kid, though. I will say, however, that I couldn't be happier with ABR and would recommend it to anyone who was interested.

He pretty much never wants to be in a chair. He wants to roll on the floor or prop sit in front of his Leap Frog table. He's eating an amazing amount of food--the other day it was two bowls of oatmeal and an egg and a half. He also likes seafood gumbo, any kind of beef or chicken, and cucumbers with vinegar. If you're holding him, you better hold on tight because he's wiggling all over the place. I've really enjoyed this spurt in growth and development and maintain high hopes that he'll continue to improve.

Thursday, December 4, 2008

Not the Day I Had Planned

Charlie did not have therapy today. His OT is at a feeding conference somewhere, so we had the whole day to ourselves.

As I mentioned yesterday, the only thing on the agenda for today was a trip to drop off my application for the art show. I stayed up late trying to get in some therapy hours, Charlie got up early and we hung out for a while and then he took a nap. I took one with him. We were ready to go at about eleven and I thought I'd hit McDonald's since there wasn't a thing in the house and both Charlie and I will eat Chicken Nuggets.

I'm sure I've mentioned that I live in a small town. Well, today they had an inspection sticker check-point set up and they were ticketing anyone who didn't have an inspection sticker.

When I moved down here from Arkansas, I was a little overwhelmed with the brain injured baby, the hydrocephalus diagnosis, the subsequent brain surgery, the epilepsy, and the subsequent house arrest ( because of the medicine we were taking). Somehow, I forgot to register my car in Louisiana OR get a Louisiana driver's license. I'm sure there are normal people out there that take care of things like this, but truly and honestly I hadn't thought about it in awhile.

So when I pulled up to the check point I:

Had no inspection sticker.
Had an expired registration from another state.
Had an expired driver's license from another state.
Had an expired insurance card ( I have insurance--I just couldn't find the card).

I was completely honest with the officer: I told him that I knew the stuff was expired, I wasn't going to waste his time telling him some story, and that I was prepared to deal with whatever punishment I received. He actually let me go, but told me that he could have had my car impounded in addition to about a bazillion tickets. NOT COOL! I think he only let me go because I had the baby in the car and he didn't want me to have to walk home.

I figure I've got to take care of this, so I go back to my house, call my insurance company, gather up some paperwork, and head to the DMV. Actually, I called my mother who agreed to accompany me to the DMV because trying to do anything with a one-year-old who can barely sit much less stand, is a chore.

At the DMV they won't issue me a new license because my old one is expired and I don't have a copy of my birth certificate. They would let me register my vehicle, but I decided to wait til I'm doing the license so I can take care of everything all at once. So tomorrow I get to go back to the DMV from hell again. Yippee.

In other news, I did manage to get the application thing taken care of. It is a juried show and I have no idea if I'll get in as I know very little about the show and what kind of works they've shown previously. I figure, nothing ventured, nothing gained.

Wednesday, December 3, 2008

Anatomy of an Art Application

I (not so) wisely posted on my blog that I wanted to enter a Mixed Media Art Show. I did this in an attempt to get my butt in gear. Well, let me tell you how things went.

Sunday: Look at upcoming week in planner. Notice that entries are due Friday. No biggie, I decide--plenty of time. The paintings are already finished--how hard could the application process be?

Monday: Hook up new scanner and scan in some paintings. Feeling good.

Tuesday: Look at prospectus and realize that scans are not accepted--only photographs. Realize that it's too late to get any good light and I will have to get up early, take new photos, and drop off entry at the post office.

Wednesday: Get up early and take photos. Realize paintings are unsigned. Paintings may not be altered from the photographs, so I sign my painting, finish the edges, and take another set of photos. Burn photos onto a CD. Check prospectus, find errors in my entry package and correct them. Create labels for CD. Print and fill out entry form. Stress unnecessarily over the blank labeled "value" for each painting.

Realize that it's too late to drop entry in the mail. Decide that I will have to hand-deliver it tomorrow. Fill out entry form again because I didn't like the way that the first one printed out.

So. . . hopefully I didn't do all this running around for nothing--fingers crossed! In other news, I found out that I can enter three paintings on one form, so I entered the two in my poll and a third one. You may start to notice a theme.

Tuesday, December 2, 2008

Sign, Please

If you live in Mississippi, then please sign this petition:



I think Lisa coined the term inchstones on her blog. An inchstone is one of those tiny steps that your special needs child takes on the way to a major milestone.

Charlie had two inchstones yesterday.

Yesterday, for the first time ever, at eighteen months of age, Charlie sat in a shopping cart. I had a padded cover on it and he managed the entire time I cruised around Lowe's. He did have to keep a hand down for support and balance, but this is such a big thing for us. I MAY be able to switch us over to an umbrella stroller now.

Also, yesterday, Charlie sat with no hands down for about five seconds. His physical therapist was strapping him into his theratogs and he was playing with two rings in his hand and he just sat up playing with them--no hands down.

My boy is doing well.

In other news, I suspect that Charlie is allergic to milk. Since we started ABR, he stopped refluxing almost completely. After a while I noticed that he mostly just spits up his bottle. This started when he was about nine months. I spoke to another mom whose child has a milk allergy and she said that it also showed up at about nine months. We've had three days without milk and we've had three days without spit up. Today, we tried Lactaid milk and that seemed to stay down. I guess I need to schedule an appointment with our pediatrician to see what he thinks.

Also, my new, super-duper awesome scanner has shown up and I have scanned in some of my paintings. I love, love, love this scanner and owning it is going to enable me to make prints of my paintings. Here's one of the two paintings I posted before; this time I scanned it in and you can see how much better it shows up.

Monday, December 1, 2008


I am thankful. . .

. . .for the wonderful comments and support I received on my last post.

. . . for Charlie's delighted giggle when he discovered dropping things on the ground.

. . . that I didn't cook a THING for Thanksgiving.

. . . that I found my iPod (whew!).

. . . that no matter what happens, and no matter how hard things seem, I always, always feel loved and supported.

I hope you all had a happy Thanksgiving.