The BESTest Weekend

We hardly have a weekend together as a family because Brady works on weekends, by choice - so that one of us is always around for Joseph. If we somehow get a weekend together, it is always planned, but not always special. But the weekend we just had, might just be the best ever.

We decided to rent a water slide and have a few kids over for Joseph. We did not exactly want to have another almost-birthday party because it could be pretty stressful and frankly, work has been kicking my behind lately...We need something low-key. So on Friday, we eagerly awaited the arrival of the slip 'n dip.

Joseph just had to try it...at least the splash pool at the end of it. In the meantime, Brady also cooked supper for some of his friends - garfish balls in a gravy. You know, those ugly alligator-looking fish. His friends started coming in and soon we had a houseful of people, some with kids and a couple of wives. Suppers/Get-togethers like this used to cause me a lot of anxiety and negative feelings as I tried to work through the grief of seeing what other kids get to do, and Joseph could not do. It distressed me, too, watching other kids play with Joseph's toys and he could not do the same. Anyway, we've been through a few of these suppers through the years and I feel okay now. I'm not exactly sure how my Joseph feels about these things.

So I asked him, "Do you mind if the other kids play with your toys?" To which he replied, "No. I kinda liked it."

And then, there was the girl who a couple of years ago grabbed a toy Joseph was holding and refused to give it back to him. Joseph followed her around, crying, while I watched and felt so heart-broken for him that he could not just grab the toy back. The girl's mother acted appropriately and made the girl apologized to Joseph. I smiled but inside I was so mad. But it's okay now. This same little girl, without being prompted, spent time beside Joseph drawing pictures for him. She even drew a picture of Joseph with Mickey Mouse. It's so good to know that kids do grow up; including a big kid like me.

On Saturday, we had our little get together with almost the same kids.

We even slid/slipped Joseph back and forth on the slide. It was not pretty. I'm surprised my back is not hurting after that, but Joseph had a great time doing it.

Joseph with his old girl-friend Riley, with his toy alligator.

After his time on the slide, he came back in the house and spent time with the girls.

Today, instead of just resting at home, being Sunday and all, we drove an hour and a half to Opelousas to have lunch at Soileau's. And Joseph and I shared a first-time experience...

He tasted alligator meat!

Joseph and Mommy both "stuffed" and ready to go home. We rested a little,

then it was time to take a final dip in the little pool before it gets picked up tomorrow.

Now, what is he looking at?

This? No, wait for it...

It's Daddy!

A happy boy giving thumbs up to this weekend.

Post Summer Reading

Such intense concentration

He takes after his Mommy.

I love books. Of course I have my preferences. I'm glad to find out that Joseph is starting to like reading, too.

A while back in one of my visits to the O'neill boys' blog, I read about Sue reading one of the Magic Tree House books to her sons. So I checked out the books at Books-A-Million and even showed them to Joseph, but he did not look interested. Since then his reading skills have improved and now he's more appreciative of books with not a whole lot of pictures in it. And therefore, on the last weekend of summer vacation, we started on the Magic Tree House series. And Joseph can't get enough of it. The stories are very interesting and appropriate for his age. It takes us anywhere from 30 to 45 minutes to finish a book. He's not ready to do the reading all by himself yet, but hopefully soon. And I wonder if there's already a website somewhere in the Web that has all these books downloaded so that kids like Joseph can turn the pages all by themselves and read at their own pace. I will have to check out Kindle and how it can be made more accessible to a child with SMA. Help, anyone?

First Day of School

Joseph happily savoring the summer break.

He (Lilbrady6) and Mommy (Bradee43)
successfully conquered the mountain within an hour of
Club Penguin opening the Mountain Expedition.

Let's smoke a cheetos puff to that!

Because this week brings with it -

the First day of school.

Never mind that the public schools in our parish started a week ago.

And never mind that Joseph's classroom is our kitchen.

Whoo-hoo!

Joseph can read all of the 220 words on the Dolch list!

Staying on the computer for the whole summer did help.

As for spelling each and every one of them...not yet.

At the end of the day, Joseph tried to catch some rain outside.

But the rain had already stopped.

Oh, well....

He still ended the day with a cheetos smile.

Is It Still Summer?

What happened to July? We certainly did not go anywhere new and exciting this Summer, unlike the past three years. Joseph's illness and subsequent hospital stay way back in March, along with other illnesses here and there, and a couple of medical appointments, pretty much devoured my PTO at work. But it's August. And with this new month, I have my newly-replenished PTO minus the six hours or so that I already owe. I wish that this coming year, we actually get to spend our paid days-off on being relaxed, refreshed and entertained.

So what has Joseph been doing?


Pretty much this. All day. Almost everyday.
Or this.

You get the picture. He has sort of neglected his Neopets, skipped out on his Poptropica adventures, and instead waddled his way to Club Penguin.

That's his penguin on the right, and mine on the left. Of course, whatever Joseph plays, Mommy plays, too. The kink in my neck testifies to that.

And once in a while, he plays with his toys.

And even manages to catch a movie. We talked him into seeing Toy Story 3. We all liked it a lot.

And for the rest of the Summer, and way beyond it, Joseph (and his Dad) will just have to accept the fact that Mommy will take pictures, no matter what.

One July Afternoon

The heat and humidity actually got a bit bearable this evening. What to do?

Joseph actually asked to go outside.

To play H-O-R-S-E with his Dad and Austin.

Maybe give Drake, Austin's new puppy, a ride in his wheelchair.

Almost an hour outside, one summer afternoon. Not bad. A much needed break from the computer.

Late Updates

We celebrated July 4th a day late because Brady worked that weekend. The fireworks were awesome, thanks to Uncle Pug (Brady's brother-in-law). Austin missed it, though.

What else has Joseph been doing these days? He changed his mind about watching Toy Story 3 so we just took him to McDonald's for the first time. He loved it. We've always been just going through the drive-through to get him the happy meal. This time, though, he went inside and tasted his cheeseburger happy meal with french fries and chocolate milk, as well as our frappe' mocha and caramel. We had the place almost to ourselves due to the time of the day and because it was raining hard. Perfect timing.

I forgot to write an update about our visit to the orthopedic guy on June 25th. We got to the hospital around 9AM. First, we had the cast taken off.

Then, we went to Radiology to have Joseph's hips x-rayed. They initially asked for just one parent to go in with the child. Are you kidding me? Like that would happen. It was a good thing we both insisted to go in, because after the hip x-rays, they wanted to check him for scoliosis while sitting upright. I would have loved to take pictures of him sitting upright, but it took all of Brady and me to hold Joseph up and keep his head from flopping down or him sliding off the seat. I'm pretty sure we were a sight. Then we went back to the lobby to wait, and wait...

Then we went in to a room to wait some more. After all the waiting, the ortho guy came. He said: The right femur has healed. He's not recommending any surgery for the hips, but he did not elaborate. Instead, he changed his focus to possibly doing corrective surgery to Joseph's ankles because of his contractures, for which I said I would rather try serial casting first. We'll go back in 5 weeks to talk more about the ankles. Then, he said Joseph has about 18 degrees of scoliosis and he's not recommending any surgery for scoliosis right now. Then, he's gone after spending less than 5 minutes in the room with us, after we waited three hours. I thought the visit was very personal. Not. It felt like it was a hit and run. I was expecting more substantial explanation of surgical options for Jojo's hips. But he changed his tone from him telling us about 3 possible options plus just symptomatic treatment during our initial visit, to him telling us no surgery and "I'm not a pain doctor," when I asked him what other pain treatment to give Joseph other than Ibuprofen. He just lost my respect and trust. It served him right when Joseph asked, "Why you took so long," when he first set his foot in the room. Or maybe that's why the visit was more abrupt than the first time. Anyway, come next visit, we will come more prepared and won't let him run away that easily. It's very frustrating when your state does not have a big pool of pediatric orthopedic doctors to choose from. That's all I have to say.

Missing In Action

Hello! This is Joseph. I'm doing really good, but my Mommy just hasn't had time to update my blog. In the meantime, I want to share my avatar, courtesy of Poptropica Avatar Studio. Until next time...