Weekends Present and Past

Well, yesterday, Jojo never left the bedroom. He played computer and watched a little TV. He refused to go out in the living room or ride his wheelchair because he said he was sick. Today, when he woke up, he said "Mommy, I'm not sick anymore." He sounded a little congested in the nose and I told him his voice still sounded different. He told his Dad on the phone that his voice changed, but he's still only 5. (He was very fascinated when Austin's voice changed and got deeper when he turned 15.)

Except for closely watching Jojo this weekend, nothing exciting or extraordinary happened. So, I'm posting some pictures of Jojo on the beach from past Labor Day weekends. These pictures are for Junior, an amazing guy, whose blog site featured all kinds of cool ideas about the beach last month.

Labor Day Weekend 2007, Pensacola

Jojo stayed on the beach just long enough

to take these pictures, then we had to rush

him back to the hotel. Very stressful.

The rest of the weekend, Jojo stayed in the hotel room.

Labor Day Weekend 2008, Galveston
Jojo stayed on the beach all of 20 minutes.
Then we went back to the hotel and packed up
to go home to get away from Hurricane Gustav.

I can honestly say from experience, that the beach is one inaccessible vacation for a child with SMA (one with type 1, at least). It's too hot, too humid, too far away from necessities (cough assist, etc) unless you're willing to take a huge wagon to put these things in. A beach wheelchair is seldom available, and if it were, it would not recline to accommodate the child. The water is so unpredictable, you don't know if the next wave will reach the child's face whether he's lying on the sand or in the arms of his Dad/Mom. I'm pretty sure other SMA families had better ideas or found a way for their children to enjoy the experience, including building a sand castle.

As for myself, I'd be fine if we never went back to the beach. But wait...We applied for the Kids' Wish recently. And we asked Jojo what was his wish and where he would like to go...oh, yes...the beach!

Jojo's Train

Brady returned the little train to his uncle. He was able to make a trade and get a single car for Jojo. Jojo loves it!

With all these illnessess around us, even in the SMA community, I felt that it was not a question of "if" Jojo would get sick but rather "when." This evening, he started asking for suction more frequently than usual. He said his throat "kinda hurt." We'll see how he feels by tomorrow...

Keeping the Flu at Bay

'Haven't had time to update lately because of work. Jojo is doing well, although every time someone asks us how's he doing or makes a remark how he's not been in the hospital lately, we inwardly cringe and hope that we don't get jinxed. We're doing everything we can to stay healthy and away from flu-stricken people. It's not easy. One of my co-workers had to stay home part of the week because her 3 kids had the flu. And someone told me today that one of the nurses at work had the flu. OMG, all we can do is pray, take extra Vit C and B's, wash our hands and/use GermX like crazy. Other than that, or because of that, Jojo has not ventured out too much. We did take him to my friends' kids' birthday party last Saturday. They rented this huge water slide and it was incredible to see how many kids they had at the party. We didn't stay long, just dropped off the presents. Of course, Jojo wanted to get on the slide, too, but it was not really feasible :o(

Here are a couple of videos from this week:

Tummy time

Test-driving the train before the fair

Church Fair and Train Ride

The third weekend of September is when we have our local church fair. And true to the tradition, it was hot and very humid!

Jojo rode the train for the first time during the fair. He usually rides it

around the house, before or after the fair, but never with other kids.

I finally convinced the boy to color-spray his hair.

Green hair with heart tattoo

A Pleasant Sunday

We had a couple of pleasant surprises today. First, Jojo and I just realized that the purple flowers have actually bloomed. We were not expecting any more flowers because the gardenia plants have all been dying for reasons unknown to us.

The second surprise was that Jojo's friend, Noah, who's visiting next door came to see Jojo. Noah was very attentive to Jojo and helped with painting/drawing with the water color pens. Nana also came to see Jojo and later on, brought her sister for a short visit.

Blooms and friends/family are good to have on a Sunday afternoon.

Flu Worries

Well, the regular flu and the swine flu have invaded our area. Apparently there had been a lot of absences in the schools in the last two weeks because of the flu. When Jojo and I got our flu shots from his pediatrician last Wednesday, the nurse told us that they had been working through their lunch hour during the past three weeks due to the number of children sick with the flu. This is just way too early a season for the flu, and too many kids affected. Needless to say, we are very worried, especially because of our exposure to sick/high risk people at work. We have resorted to wearing a mask at home, even Austin, in the first sign of a scratchy throat, stuffy nose or such. We also pretty much canceled whatever appointments Jojo has the rest of the year until Spring. It's sad that Jojo will have to be confined to the house more. But what can you do when your child's life and health is complicated by SMA?

Jojo is keeping himself busy with his computer, watching TV (finally got Dish Network. We love, rather, Jojo loves it and especially the DVR.), and he is interested again in his Vtech games. Last Sunday, we even got to take him to Nana's for a Sunday dinner with the family; something we haven't done for a while. And what do you know, of course we had to take his computer with us!