I want to thank you all for the kind and insightful comments you left on our last post.

I read each one and considered it, and instead of responding to each one like I normally do, I just sat there and digested everything. Then I just let it sit for a few days.

There were several good suggestions there–and some of them sparked other ideas in me.

After discussing these things with The Husband, we’ve decided to put off the sleep study for now.

I’ll let you know if we discover anything as we test out a few ideas, and I’ll definitely keep you informed if we choose to go forward with the sleep study in the future. Right now we just want a little more time to make sure we’ve tried out all the non-invasive options.

But we sure are sleepless.

For probably the last two years, Charlie has struggled with sleep. We have a rough patch, make adjustments, and then another rough patch crops up. It can take up to two hours for him to fall asleep and once he does, there’s a good chance he’ll be up anywhere between three and five AM. We have tried probably everything under the sun. No lights. Lights on. Early bedtimes. No bedtimes. Noise makers. No noise. Fan on. Fan off.Different rooms, different temperatures, different clothes.

We’ve tried a lot of different things and it seems like lately there are far more bad patches than good. When we finally got the point where he was sleeping a few hours each night and then two hours at school, we knew it was time to bring it up with the doctor. At our most recently neurology visit we discussed potential issues:

1. His cerebral palsy is causes low tone in the throat, and that, in turn is causing sleep apnea.

2. He’s having some kind of seizures either at night or while he’s sleeping.

3. His brain injury has made his body unable to properly regulate sleep.

None of these things can be diagnosed by looking at a child, so this past week we spent a good couple of hours meeting with a pediatric sleep specialist. She seems to be leaning towards possible apnea. Our neurologist is leaning towards regulation issues. Either way, Charlie’s on the schedule for a sleep study next week.

Yep. My preschooler covered in electrodes and trying to sleep. That promises to be veeeery interesting.

Either way, we’ll hopefully get some answers.

What, Mom? You know I don't sleep.

After taking almost a year off, Charlie and I headed for Florida to learn some new ABR exercises.If I’m leaving you clueless, ABR is an experimental therapy technique that we do on Charlie. I’ve written oodles about it in the past, but the simple version is: we’ve tried it, and we’ve been very happy with the results, so we keep doing it. Rocket science it ain’t.

The goal of ABR is to try to improve the structure of the body–to make things work better and move more normally. A good goal, yes? Well, when you visit, they try to show you how your hard work has paid off. It can often be difficult to see small changes, or in some cases, you see that your child is doing things differently, but you can’t put your finger on the specifics.

So, the lovely people at ABR look at pictures they’ve taken of your child and videos you’ve done. They compare the two and make a neat little report for you that details their greatest areas of progress.

It’s been over a year since our last visit, but I did get in about six months of work before pregnancy, Parvo, and newborns put me out of commission. Still, they got the old photographs and we were able to see some definite improvements. Awesome!

The greatest improvement is in the area of his shoulders. While sitting, he does a better job of catching himself if he tips over. If you try to put him down on his stomach, he’s able to prevent face planting (super-useful!).

The other changes are more things that look different about his body and that may help with function in the future. First, we’ve gotten some more length to his neck. This helps with head control and I remember when I was working on his neck last year, the teachers at school definitely mentioned an improvement in head control. The second major change is in his legs. Now, I would have probably never noticed this without ABR, but a common issue for kids with cerebral palsy is that when you move one leg, the other moves too. And let me throw this out there too–once ABR points something out, you can’t NOT see it. Anything they point out, I see it not only in Charlie, but in every single kid with CP.

But about the changes. Used to be, if you lifted one leg, the other leg, and half his backside would move with it. Now, both legs still move, but his back stays nice and flat on the table. We’ll keep working and hopefully we’ll get those legs to move completely independently of one another.

Since people like the hard facts, I’d estimate that we achieved these changes with about 180 hours of hands-on therapy. We had some machine time, but not as much as we would have liked since Charlie has been struggling with sleep issues on and off for the past year.  We pretty much had to restrict its use to his hips/pelvis area. The neck and shoulder improvements are probably a direct result of hands-on therapy. Up next for us? lots of work on the pelvis, which will hopefully translate into better use of his legs and move movement in that area in general. Also, work on his mid-back to improve his posture overal.

I’ve been a little quiet recently. Two weeks ago my husband left to do two weeks of service in the Air National Guard. He’s been out of the military for several years, but recently we decided that the Guard offered some advantages we couldn’t ignore–mainly their super-cheap and generous insurance plans.

So, for the first time ever, I’ve been mothering three children by myself. I’ve had a lot of help in and out, but the truth is that it’s been tough. Sleep has been hard to come by, and I am very glad to be done with the single parent gig. By the time you read this, Hubby will be back and I will mostly likely be fast asleep in my bed.

But tonight I sit back and make a little toast (with water, sadly) to Good Enough Parenting.

To kids who spend the whole day in their pajamas.

To dirty floors with a blanket thrown on top, so the babies can play.

To peanut butter sandwiches for dinner.

To uniforms that aren’t “that” dirty.

And putting kids on the bus in my PJs.

To eating dinner with the TV on.

To picking a bedtime story based on how short it is.

And to food that comes in a box.

I raise a toast to good enough parenting because some days good parenting just isn’t an option.

Cheers.

Look--they're still breathing and everything.

That ABR post will have to wait another day or two because today I’m mad as hell and I’m resorting to my favorite therapy–blogging.

By now, you have probably heard about a little girl named Amelia who was denied a life-saving transplant (from a family donor) because has been diagnosed “mentally retarded.”  If you haven’t heard the story, you can read her mother’s own words here although sadly, my description sums up most of it. The doctor’s reason behind denying the transplant was that Amelia had a poor quality of life.

There were a hundred things racing through my mind as I read this story–fear, disbelief, disgust–but the quality of life thing is what sticks in my craw. I am sick to death of other people looking at my child, or any child with disabilities, and determining what the “quality” of his life is. My son cannot walk or talk, but he smiles every day. He laughs easily. Throws temper tantrums like many four-year-olds, and he likes toys, television, and his iPad. He adores music and can recognize a song within a few notes and could from an incredibly young age. I began teaching him to read this summer, shortly before his fourth birthday, and I am slowly adding words to his vocabulary (in between bedrest, having babies, therapy, school, dinner, cleaning, and getting pregnant again).

He is LOVED. When Charlie was born sick and in the hospital, I felt like the whole world was praying for him. For four years he was the only child and the only grandchild on both sides of the family. He is doted upon and spoiled more than he should be–for crying out loud, I don’t have an iPad! At school he is greeted by a multitude of adults and children who have taken him into their hearts–at recess they actually have to shoo children away because a crowd gathers around him. Other students watch for him each morning to make sure he’s arrived on the school bus.

His life is RICH. Charlie has traveled internationally. He’s been to Disney World. He’s put his toes in the sand in Florida and chomped on chips and salsa in Texas. He’s eaten in some of New Orleans’ finest restaurants. He goes to outdoor concerts, rides horses, has his own TV, DVD player, and the aforementioned iPad. He has a bureau full of clothes, and ones waiting for him when grows into the next size. He has cuter shoes than I do. He has so many toys that we still have some in boxes waiting to be opened.

He is CARED FOR. His father and I talk regularly about his future. We think about where he will live as an adult. We have plans for how our house will be remodeled to suit him in the coming years. We have life insurance should we pass away too early to carry out all of our plans.  We have also been blessed with two other children and have a fourth on the way. We hope that they will help to care for Charlie when he is older–if he should need their help.

For years I taught children with a poor quality of life. These children could walk and talk like everyone else–they could read out loud and solve math problems.

But their lives were full of violence, loss, and poverty. I taught children who were all to familiar with drive-bys. I taught children who were freezing in their beds at night and then falling asleep in school the next day. I worked with girls who passed out in the hallways at school from malnutrition. I met children who would go days without seeing their parents. And those whose mothers forced them into gangs before they even started high school. I stood in houses with no beds and rat poison lining the rooms. I knew far too many children whose parents were children themselves.

THAT is a poor quality of life–not the inability to walk when the world is full of people willing to carry you. It is not the inability to speak when there’s an army there to advocate on your behalf.

The quality of life issue is just an excuse. It’s something people tell themselves when they do something abhorrent to people who can’t defend themselves. It’s a balm people allow to ease the pain of what they know is discrimination. It’s a falsehood and it’s time for it to stop.

My child’s life is beautiful.

My child’s life is valuable.

His worth cannot be measured.

I know I am not alone in my beliefs. Sunday Stilwell has put together a petition urging CHoP to reconsider their decision to not grant Amelia her life-saving transplant. You can sign that here. You can also let CHoP know how you feel on their Facebook page. The most important thing you can do (in my opinion) is let people know how you feel about this story. People with disabilities deserve the same medical treatment as everyone else. It’s time to speak up.

I’m back from a world-wind ABR trip to Miami and and working on a nice chunky update for you guys. In the meantime, I thought I’d share a little funny since I got so many nice compliments on the matching jammy pic.

This is the matching jammy picture as you guys saw it last week:

Looking Sweet and Innocent

I usually have to take about twenty pictures before I get one that I think is “cute enough” for the blog. This time only two out of three were looking at the camera,  but everyone seems mostly happy. Charlie spends a lot of time giving the camera his look of doom, which never makes for a pretty picture.

When you take pictures of three boys, more of them look like this than the one above:

General Madness

So there it is–the secret to a cute photo–take a zillion and one of them will probably come out alright.

The other day I took the twins for one of those dreaded well visits. You know, the ones where you take a perfectly healthy child into a small enclosed space full of children with every conceivable illness? And then have strangers jab them with needles? Well, we went there and behind us in the line was a young man with a severe disability. I’m not a doctor (duh), but he had many of the characteristics of cerebral palsy: scissored legs, one arm pulled into the chest, head tilted to one side.

He was being escorted by a another young man who I assumed was his brother. I kept flashing friendly smiles, but they went unnoticed.

So I sit down and filled out those terrible developmental checklists about what your baby can do–often, I’m not entirely sure and just sort-of guess. Great barometer, no? As I walked back to the counter with their pen, I saw the caregiver lean over the man in the chair and say, “well, you’re quiet.”

And without thinking–because LORD KNOWS my mouth is often functioning without the permission of my brain–I say brightly, “he’s listening.” Because that’s Charlie all the time–his little antennae are constantly picking up on every little thing said around him. The boy is nosy with a capital N. And the man in the chair? He turned up to his brother and said, “I’m sneaky.” Turns out Charlie isn’t the only sneaky one in town.

I would have missed that little moment a few years ago. Would have felt too uncomfortable around someone who looked  different than I do. So glad I’m not missing those things any more.

Charlie and Auggie see the camera. Louie spotted the TV.

An unexpected side effect of a difficult delivery is that watching TV can sometimes send you into a tailspin. All those adorable birth scenes in movies and TV are suddenly less so and more like instruments of torture. That great couple banter? Imagine complete silence as you and your partner realize that something is very wrong with your baby. Mom’s look of pure joy as she looks at her little one for the first time? Replace that with tears as baby is whisked away for treatment.

After an experience like Charlie’s birth, a movie like Knocked Up is a lot more like a punch a in the gut. I remember watching it with my husband and in the end he got up, cursed at the TV, and walked out. You can be handling things fairly well, and then BAM! something like that can remind you of what you didn’t get to have.

The other night, though, Hubby and I were watching the season finale of Bones–last season when Angela had her baby–and we found ourselves chuckling at this improbable TV delivery. The chatting, the complimenting. I mean, I wasn’t in labor for long, but GOOD LORD was that business painful. Like any strong, brave woman, I spent the time up until my epidural for the twins crying. I was thrilled to have them stick a needle in my spine.

It probably took me twenty-four hours to realize we’d made it through our first birth scene without wanting to kick someone. It’s really interesting because a lot of people would not consider the twin’s birth ideal. There was the whole six weeks too early thing, and the NICU stay, but they let us examine each boy when they were born and even gave a minute with each before they took them over to the NI. Seriously, when they presented us with August we weren’t even sure what to do. It was all so. . . foreign.

But it’s good too. We got to have a positive birth experience. It doesn’t erase the first, but it softens it. Provides us with another perspective.

I must say, I think it’s a Mommy Milestone.

I’m starting to itch a little bit about baby number four’s name. I don’t know how those Duggars do it, but Hubby and I are having a real hard time picking names for this one. Not only do we have to pick a name we both like, but we also have to pick a name that sounds nice with the three other names we’ve chosen.

We’re having a particularly hard time with boy names. My husband has declared his affinity for only one name: Claude. Now, I think Claude is a perfectly nice name and all, but I do not think it goes with the others: Charles, August, Louis, Claude.  It just kind of lays there–not nearly as melodic as the rest.

So like any good wife, I’ve been busy creating a list of names that I like more. Here are my front runners:

Edward. We like family names at my house. Not only is Edward my Dad’s middle name, but it’s also my Uncle’s name. Apparently my grandmother reaaaallly liked the name. It’s not as melodic as the other three, but it is Kingly, and I like that. The only drawback I can see is that my Uncle Eddie has pretty much got that nickname occupied. I’d have to use something else. I love Ted or Teddy, so we’d probably go with that.

Rex. I KNOW a lot of people think this a dog’s name, but I’ve never known a dog named Rex, so I don’t have that connotation. I like it because it reminds me a of Max, which is a name that I love, but that I already gave to my cat. Also, Rex means King, which is good and it’s also a name of a New Orleans Mardi Gras parade, so it’s a nice nod to our hometown. Hubby likes this name, but he’s worried that it’s “too much.”

Atticus. Not a family name, but my family is FULL of lawyers, and Atticus seems like the epitome of a perfect legal name. Also, my mom’s brother swears that the characters in To Kill a Mockingbird were based on their family–he and my mom lived with my grandfather, a lawyer. Not so sure about that, but cool to think about!

Dashiell. I just like it. It’s the name of a mystery writer and I love mysteries, but more than that, I just think it’s cool. Plus, it sounds good with the other names.

Girls are easier as we still have our choices from when I was sure the twins were girls. My front-runners at this point are:

Elodie

Edia

I also love Etta, but I’m not sure Hubby will go for it. I’m leaning towards Edia. I really like Elodie, but Ella is by far the most popular name among people I know, and I also know two other people with Ellies. I feel like Elodie might get lost in the sea of similar names. I also think I could call Edia Edie, which is super-cute. (Because someone asked: Edia is pronounced Eh-dee-uh).

So there it is, me, over-thinking baby names. Feel free to weigh in, but if you tell me you hate it, I’m totally putting it at the top of my list. I love the idea of an unpopular baby name because then I know no one else will pick it!

I love holidays. I really do. I like celebrating even the smallest ones–Valentine’s Day, the beginning of school, etc.

I am not a huge fan of Christmas, however. It just feels forced. The overlapping schedule, running my kids from one end of creation to the other. And the expense. Good gracious! All for things that I usually feel only moderately certain the receiver even likes.

So, I’m a little bah humbug about the whole thing and my husband? He could not care less if tried. He’s not interested in presents, or gift-giving, or decorations, or anything, basically. I’ve had years where I’ve put up MULTIPLE TREES and his sole contribution is getting them out of the attic. We never have outdoor lights because I have a fear of heights and like I said: he doesn’t care.

I figured this year, I’d just skip the tree. The last couple of years I’ve put them up and taken them down, and I’m pretty sure I’m the only one that’s noticed.

But the other day I took the kids to see Santa Claus and this happened:

I have like a zillion pictures like this one because Louie would not takes his eyes off the Christmas tree next to Santa.

And then this:

Yep, that’s Charlie also unable to stop looking at the Christmas tree.

You can guess what we’re doing tomorrow, right?