Field trip to a pumpkin patch

We had lots of Halloween events, not just for the boys, but for us too!  Lots of recaps this week because I just didn’t have time to blog these past couple of weeks.

LJ went on his first field trip two weeks ago and I had to go with!  I loved it when mom came on my field trips.  We went to a Pumpkin Patch, which was actually kind of exciting for me since I’ve never been to one.

I was nervous for two reasons.  First, I wasn’t sure how LJ’s wheelchair would handle the terrain.  His chair is ok.  It does its job and positions him well… but it doesn’t have any shocks and it’s durability is terrible.  I was worried he’d be jostled everywhere they went and wouldn’t have enough head control to keep his head up and look around.

The second reason for my nerves was me.  Let me just say that I’ve always had a bit of a social anxiety.  I was worried that other parents wouldn’t talk to me.  I know it’s silly but sometimes being a young mom makes me feel out-of-place. 

Luckily, I hit it off with quite a few moms.

First, the kids went into a corn silo (a silo filled with, you guessed it, corn!)  I eyed it a bit timidly till one mom said, You want me to get in there with him?!  So I climbed in there and she passed him to me.  I think I’m still shaking out corn from my pants, weeks later.

Then we went on a hay ride!  This was awkward only because I can’t hold LJ and lift a wheelchair up onto the back of the bed.  A dad (or possibly a granddad, I couldn’t figure it out) was a huge help.  We stopped by to pick a pumpkin and then went to the corn maze.  I made it about a quarter way through in LJ’s chair when I turned back around.  By that time the kids had made it around the maze twice. 

We stopped by and checked out a few animals and then headed to a big hay stack.  I think the kids enjoyed this the most.  I laid LJ in the hay and climbed up there with him.  Some of the kids buried his legs in the hay.  It was adorable.

I’m so glad I went.  Sometimes I have such a hard time seeing LJ in a classroom setting that I just assumed these feelings would carry over to our field trip.  They didn’t.  In fact, I think I cried with joy afterwards.  The kids are so sweet to LJ.  And there are these two girls in his class that adore him.  At the end, we took pictures of all the kids together on the hay stack.  The teacher positioned LJ in between these two girls and instructed them to hold them up.  This made me nervous so I climbed up there and hid behind them but they were so good with him.  I guess I never really thought about how being a peer model could be beneficial for them too.

I cant’ wait for our next field trip!

First week of ECSE Preschool

Alternate title post, “The Battle Begins.”

Well, he survived.  Actually, he did pretty well.  It was me that survived.

His first day was only for an hour and the parents attended as well.  We sat through a presentation about the curriculum and drop off policies, where I realized this was only the beginning of battles of things like who can drop off what kid where and when and perhaps more important things like getting the equipment my son needs.

Wait, that realization occurred on his second day.

Let me backtrack a bit.  First, the bus company never called us to tell us important factors like when they’d be here to pick up LJ and where.  Also, I wanted to make sure the bus had AC, after some of the horror stories I heard.  Luckily, LJ’s teacher knew the morning bus driver and was able to call her directly. 

Despite having notice of the bus’ arrival time, I scrambled to get LJ ready.  When the bus arrived, I remembered the teacher telling me it wasn’t a wheelchair bus (they had car seats), but there weren’t going to be many students so it could probably fit.  I told LJ’s bus aide that I would probably have to show her how to break down and assemble the chair but she never got off the bus. 

Louie went up to the school to watch the nurse prep LJ’s feeding (he has a g-tube).  This is something that makes me wonder about how other children’s feedings are handled at school.  On Monday, they proposed to have a staff member take his feeding bag to the nurse’s office for her to prep, then bring LJ to the nurse so she can set it up and then take LJ back to work on oral feeding or whatever.  Then take him back to finish up.  This seems to me like a huge waste of time.  And almost like it’s singling him out.  I’ve seen a DVD on the Mickey button (which is the type of feeding tube he has) and they all rave about how easy AND inconspicuous it is.  Not that that’s the reason I got it for him.  I just don’t understand why they preschool staff can’t do it, in the classroom.

Honestly, I know I’m just preparing myself for battle based on experience.  No, LJ has never been to school before.  But since he was a baby, I learned quickly that nothing gets done unless I bitch or do something about it.  Maybe they haven’t ordered equipment yet because they want to see if they have anything that works for him.  Maybe they want to figure out what would work best (even though I’ve told them what we have).  Maybe they needed to get through the first “week” of craziness that is the beginning of school.

I know school will be really good for him, though.  He has an amazing teacher and I know the other staff are quickly falling for him (it’s too easy).  On Friday, he came home with a huge smile on his face.  Then he passed out for 4 hours.  Hopefully, he just needs to get use to it.

Also?  I love this little boy.  He came right up to LJ’s wheelchair during recess and starting talking to him.  I already thought he was adorable and now he made my heart melt by treating LJ like any other kid.

honesty is usually the best policy

I’ve never been the confrontational type. Well, I take that back. I’m confrontational only at the wrong times… say when I’ve let the pot boil a little too long and it’s ready to explode (the pot, of course, being a metaphor for my emotions).

One of the things about therapy is looking at how you deal with your emotions. And really, I’ve never done that before… not with any other therapist, anyway. And me? I tend to lock things up. I’ve seen one to many explosions in my day and I try to avoid them.

Which, of course, leads to one anyhow.

So, I’ve been stating how I feel. Maybe not right in the heat of the moment, but after taking a few moments to settle down… otherwise, it comes out more of an accusation then a fact.


as opposed to…

I was annoyed by the tone in your voice.

subtle differences.
In other YBR (Yellow Brick Road) news, LJ got his first round of Botox last Friday. The doctor actually decided to do less injections then originally planned because she was so impressed by his progress.

It’s really nice to hear that, from time to time. I mean, we do our best, but we see LJ everyday; the differences aren’t so obvious to us.

Anyhow, LJ did great. Of course he cried; I’d cry too getting injections into my muscles. Louie had to step out with Noah. I wasn’t going to take the chance of him passing out; he almost did when I got my epidural with LJ.

But they gave LJ a med that is pretty much like Tylenol 3, to calm him. He was sooo calm and silly! I wish I had videotaped it. He was very giggly.

The Botox is suppose to start working in 7-10 days, but I’ve already noticed a difference; his hand isn’t as tight, he’s moving around more, and he’s tolerating positions (like sitting) for longer periods of time.

For those of you who think I’ve gone crazy and tried to get rid of my babies wrinkles: Botox is also used to reduce spasticity… meaning, the tightness in muscles, called tone. In a lot of CP cases, people use their tone to do things instead of using their muscles normally… like my son uses his tone to straighten out his left arm. It happens most often when he’s frustrated. Botox will take that tone away and allow us the opportunity to show him the correct way to use his muscles. We’re suppose to start intense therapy but I bet it won’t start till after Thanksgiving. Very frustrating.

We also had a team meeting before out Botox appointment, with all of our therapists. But I’ll leave that for another day.

Oh, and to leave on another great note… LJ has gained 2 lbs!!! It doesn’t sound like much, but really, it’s leaps and bounds for him.

Miracle Veterans

Candace is having a contest for those of you have experienced or witnessed miracles out there. Thus her coined term, Miracle Veterans.

 Lord knows we’ve had many miracles in our family. LJ has had countless. Sometimes I don’t even realize the miracle that has happened until much time has passed. An ER episode reminded me of an experience LJ had.

When LJ was born, he had to be intubated and hospitalized. A few days after being hospitalized, they had to extubate him. I’ll never forget the doctors words, forced through his thick accent.
We will see how he does and go from there.
I never realized he wasn’t expecting LJ to breathe on his own. But he did. Days later, another miracle happened the doctors didn’t expect. He took a bottle. The very next day he was breastfeeding.

 My heart still aches, thinking about those long, blurry days. The following pictures may not seem like the happiest, but we were so proud of our little boy. He’s a fighter. I like to keep these around to remind me to of the struggles we’ve gone through together and to be thankful for every day of them.

First Pair

It’s been awhile, I know. I pretty much took a break from all things Internet (except for the gaming around Christmas). Lots to catch up on but I’ll just start with the latest… and the most adorable.

LJ now has glasses! It was so funny when we first put them on him (he hates people messing with his face, which is probably why at any point in time, you can see food on it). But once he opened his eyes from fussing, he look around, mesmerized. It was like he was seeing the world for the first time. And he laughed.

They aren’t the cutest pair of frames ever, but our insurance only covers the metal kinds. With LJ constantly leaning to the side, we figured this might not be the best and most comfortable route to go. So we purchased, out of pocket, these rubber frames, to at least get him use to it and so we always have an unbreakable kind. We get 3 pair in a year, so if he does well, we may go back for the metal frames.

He makes them look good.

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