Sunday night post

True to his new routine, Jojo was "out" before 9:30 tonight. Nothing particularly special happened this weekend, except for all of us being in a relatively good health. Jojo mainly watched his shows on TV, played with cars, painted, etc. I made it a point, though, to keep Jojo outside for at least two hours every day this weekend just to break the TV habit. He mostly drove his wheelchair up and down and round and round the driveway, played with the bubble rocket, enjoyed the breeze (strong wind, really). Asked what was the best part of the day, Jojo usually answered, "When I was tasting something." Quite ironic, and sad, that my son loves food, even though he really cannot have anything by mouth. But, we let him taste food as much as he can. And this weekend, he tasted beef ravioli, prunes, capri sun, lemonade, tootsie pop, ring pop.

New Routine for Jojo

We are loving Jojo's new bedtime schedule. All because of a new show on Disney - Special Agent Oso. Jojo now goes to sleep between 9:30 to 10:00pm and he wakes up automatically just before 7:00am so he can watch his show. Who knows how long this will last. But for now, it's so nice for us to be in bed by 11:00 instead of 12:00 and even later.

Untitled

Monday, Jojo had both Mommy and Daddy at home, sick. Jojo spent the whole day with his babysitter. Today, I went to work; Brady went fishing. And Jojo spent another day with his babysitter. I must say, that you don't need to have a nurse to stay with a child with SMA. But, you need to have someone who is well-trained, responsible, with good work ethics and preferably, with vast experience as a caregiver. You will also have to pay out-of-pocket :o) The lady we currently have caring for Jojo is such a big help to us. We really appreciate her. And that's not taking anything away from my MIL, who also helps us as much as she can.

Anyway, I think Brady has already recovered from his illness this weekend. As for me, I have laryngitis, and now I think I have a full-blown cold! I really hope that wearing a mask and continually washing my hands will keep Jojo from getting sick.

Playing with Jojo after work today

Exercises and Water Activities

Saturday, Jojo had lots of play time with his babysitter, and then with his Nana, while Mommy stayed in bed sick :(

Sunday morning, I tried to make up for being MIA yesterday by keeping Jojo busy in bed and letting him play with water in the safety of the bathroom. Then, in the afternoon, Nana came and played some more with Jojo. After Nana left, Jojo and I spent an hour outside playing with his bubble rocket, chasing after bubbles and trying to fly a kite. It was too windy for the kite.

Exercising the legs and watching Electric Company

Making waves

Pouring water

Wishing well

Another weekend is over. I'm still not 100% well, and now...Brady's sick! Ugh! I hope Jojo doesn't get sick this time. We are so ready for summer to come!!

Another Friday

Just Jojo and Mommy today. How do you keep a 5-y/o amused? Well, since I am a little bit under the weather, Jojo gets to watch cartoons and satisfy his need for speed outside and inside the house.

Thank God for laminate flooring.

Easter Sunday

I think that Jojo enjoyed his 6th Easter Sunday celebration. His Daddy took the day off, and he got to spend time with his family. Because of the very windy condition and the threat of stormy weather today, the pig was cooked in the oven instead of in a rotisserie outside. There was a mini-Easter Egg hunt in Nana's kitchen/breakfast room, and Jojo "found" one egg. Of course, there was the egg-knocking contest, although Jojo did not win this year.

I was deeply touched that people were very kind to Jojo. One of Brady's aunts sent Jojo an Easter basket with balloons and little cute stuff. One little girl went out of her way to knock eggs with Jojo. Jojo's old babysitter came to bring him a balloon and some painted eggs. And during the Easter lunch at Nana's I really appreciated the love that everybody had for Jojo.

And on a different note...We planned to go to the Camp for Courageous Kids in Kentucky this week, but we couldn't because of staffing issues where Brady works. It's probably for the best that we canceled, because Jojo started having a low-grade fever yesterday and his heart rate was 20 to 30 points higher than normal. Not that he was acting sick. He is still very talkative and he denies being sick, but we are watching him very closely. Oh how I wish that all these illnesses would leave us alone!

Easter Weekend

Jojo "dyeing" his egg

Jojo knocking eggs with his friend

Good weekend

Another weekend come and gone. Quiet weekend. No illnesses. Good. Last Wednesday, we took Jojo to Wal-Mart, his favorite store. He pretty much knew where the toy section was. I'm not doing too good with my New Year's resolution of cutting down on buying stuff for Jojo every time we go to Wal-Mart.

On Saturday, Brady and I were actually able to go to his friend's wedding reception after he got back from work. My MIL stayed with Jojo. Of course, we did not stay long because Brady had to leave for work at 5AM the following morning, and we both missed Jojo. Next weekend is Easter, and Brady will be off for Easter Sunday. Very good.

Here is Jojo dancing, eyebrow dancing, this weekend. He is also working on alternately winking each eye. It was not really a song to dance to, but it worked for Jojo:

Just a regular 5-year old

Jojo may not be able to walk or run or jump like a non-SMA child, but that does not stop him from:

challenging his Daddy with a race down the driveway,

exploring unknown terrain,

and going back for more!

And like a typical child, he wants every toy that is advertised on TV, except the ones for girls of course. Tonight, he said that he needed a hundred dollars. I asked for what, and he said so he could get the Lego stuff with the hundred pieces. So I asked him if he learned anything new today for him to deserve money or a new toy [Yes, we have resorted to bribery just so he would spend some time learning to read and stuff.] And he said he would count to a hundred. So, tonight, my little boy counted from 1 to 100. I am so proud of him. But he's still not getting a hundred dollars.