Productive Day

Friday morning, I got a call from the babysitter that she couldn't come. I hurried up to get Jojo ready and up in the wheelchair for the school's assistive technology person/ST by 9:15. The evaluation went well. The ATP was amazed at what Jojo could do on the computer with the help of technology. The last time she saw Jojo was about two years ago when he was first getting admitted to the school system and we were trying to figure out how he could use the computer by himself. Anyway, we talked about on-screen keyboard to help him type and spell and also use the up/down/right/left arrows (so he can play more games on the computer by himselft), and some kind of communication device to better understand his speech. It's getting harder to understand Jojo when he speaks because (1) he is not achieving full closure of his mouth anymore due to increasing weakness of his lower facial muscles, thus the limited smile, too, and (2) his jaw muscles are getting tighter so he cannot open his mouth. Try talking with your teeth together and at the same time do not move your lips...That's how he sounds especially when he is sitting up because of his head positioning. She also showed me some program she could put in the computer where Jojo could click on pre-determined/custom phrases to help us (mostly the babysitter and other family members) understand him better when he talks. So, we will wait for two weeks to give the ATP time to write her report, then we shall start "harassing" the school board to get the ball rolling on this ASAP :) After she left, Jojo drove his chair in the house, watched his shows, played cars for a little bit.

This was Jojo at the end of the day, after his bath. He asked to sit up in his bed so he could touch his legs. He usually cannot tolerate sitting up tall that's why he drives his wheelchair in a tilted position.



Before his bath, we decided to fly a kite. It was very windy. Not easy to fly a kite when the string gets tangled in the wheel or wraps around the chair/joystick because the boy doesn't stop when his Mom asks him, too. But it was fun. Next time though, I'll make sure somebody else is around to watch the kite or keep Jojo from getting too close to the edge of the driveway.


We also played with bubbles. Like I said, it was very windy. Jojo could not catch up with the bubbles to pop them. All in all we both had a good Friday.

Jojo's Mardi Gras

We took Jojo to his first Mardi Gras parade. It was in a small town about half an hour away. Just perfect for Jojo: small crowd and family-oriented.
Jojo was a magnet for beads and stuff toys.
After the parade, we went to his Nana's house. After his brother's birthday, we talked about how my birthday would be next. Well, Jojo decided that I should have a cherry cake. So today at Nana's he watched while Nana made the cake and helped decorate it.

Then, he asked Nana to make some jello for Deedee (grandfather) and he helped stir it.

Jojo stayed with Nana for two hours and played with cars and made up some stories. When we picked him up, he was not ready to go home but it was time for him to eat and Daddy had to go to Austin's baseball game. We would have gone, too, but it would have been too windy for Jojo. At home he watched his PBS shows, then the "yukky, disgusting" shows on Cartoon Network, followed by a long bath. Of course, he had to play games on the computer. And just after 10:00, my little boy was already asleep.

Jojo's Artwork and Lola

We had a very quiet weekend. Hopefully, Jojo will have more fun this coming week. After all, Tuesday is Mardi Gras and Thursday is my birthday. Jojo's Dad's birthday is next week. Our birthdays are all clustered together, except for Jojo's. Even my parents' birthdays were in February, on the same day! This year my Mom and Dad got to celebrate their birthdays together in Heaven. I miss my Mom. Jojo tells me once in a while that he also misses his Lola (grandmother) even though he only got to spend 7 weeks with her three years ago.

Anyway, I asked Jojo where he wanted to go for my birthday, and he said "to Nana's (his other grandmother)." Jojo is so ready to get out of the house even if it is just across the bayou and a few houses up the road. Well, as soon as the warm weather sticks around and all the illnesses are gone, we plan to take the boy out more.

Good night Daddy

Jojo is asleep before 10:00???

Of course not!

I have to play first.

Thursday is my favorite day of the week because then I'll be off for the next three days! That means it's Daddy's turn to wake up early and be gone all day from Jojo. Anyway, late this afternoon Jojo watched his Daddy plant a tree. And whenever it's time for it, we're going to have to plant a row of sunflowers because Jojo loves them. Otherwise, there's nothing much going on here.

It's during these times when Jojo is enjoying relatively good health, that we tend to get distracted and lose our focus. We think about those things that Jojo don't get to do and allow ourselves to feel sad. For example, some friends and people we know have kids the same age as Jojo. They all go to the same preschool and spend time outside of school. This would be the same preschool that Jojo would have gone to. These kids would have been his friends by now. Instead, our son gets schooled at home and seldom gets a chance to be with kids his own age. It's just that we feel, at least at this time, that as much as Jojo needs to be suctioned orally and use the cough assist 2 to 3x a day, going to school is not possible. On top of that, there's always an illness going around in the schools, be it the flu, stomach virus, etc. We said that we would try to take him to school at least 1 to 2 hours a week or every 2 weeks, but it just never worked out; either because Jojo was under the weather, or we had no babysitter to go with his Daddy to school. The way Jojo is right now, he needs 2 people to go anywhere: one to drive and the other to stay by him for suctioning. Oh, well, we are just going to have to try it again when the weather is warmer. At least our Jojo is happy learning preschool stuff and playing games on the computer. As long as he is happy and not sick, that's all that matters.

I had to work today, so Jojo spent part of the day with his Nana and the rest with his Dad. His Nana said that she understood him well today and that he had a good day. Jojo loves his Nana. Nana is very patient with him and played cars with him while he made up stories. Jojo's teacher came, too, and apparently they worked on addition (math) and completing sentences. I really don't know how he does in "school" because I am never home when his teacher comes. Jojo is serviced through public schools. He has a special ed. teacher who comes 2x/wk; adaptive PE teacher once a week; PT once a month; ST every other week; OT once a month. All these sessions are about 30 minutes each, except for ST. Jojo's speech therapist spends an hour with him and really tries to engage Jojo in activities. The OT (he's had 3 different ones) facilitated getting the equipment he needs for learning such as computer, arm for the computer, adapted controls, etc. The PT comes, but does not really do much because in reality, PT (and OT) in the school system is primarily for helping the student be positioned optimally for learning. His PT made a few suggestions about his wheelchair after we got it, but that's about it. I don't even want her to do any stretching on Jojo, because he tolerates it poorly from other people. That's my job as his personal PT. It's 10:15 and I can still hear my little boy. His dad has to take the van for some tune-up early in the morning. I will have to wait for the babysitter to get here tomorrow before I go to work. We try to limit the times when Jojo has to be with neither his Daddy or me, but we both work (although on different days) and sometimes errands need to get done. His current babysitter, though, knows what to do in case of a "crisis," and I am about 20 minutes away and his Daddy will be back as soon as he can. It will be okay.

Austin and Jojo: Brothers for Life

Jojo's Big Brother

HAPPY 15th BIRTHDAY AUSTIN! 2-15-09
Jojo gets to see his big brother every other week (more during the summer). And when Austin comes, he helps a lot in aggravating :) I mean, entertaining his little brother. Austin also makes sacrifices for Jojo; because his Daddy works on weekends, he has very limited time to spend with him. I hope he understands. I'm pretty sure he does.

Happy Valentine's Day!

Jojo got some cards and balloons today. His caregiver came so I got to take a little break. Now, Jojo is just waiting for his Daddy to come home.

Typical Friday

It's Friday, so I'm home with Jojo and Brady is at work. There's no babysitter today, but it's okay because Jojo is keeping himself busy driving his wheelchair around and playing games on the computer.

Jojo's speech is not easy to understand at times because of increasing weakness of the muscles on the lower part of his face. He gets very frustrated and starts to cry when we don't understand what he's saying. I can relate to that; coming from a foreign country and still retaining my "accent," I feel insulted sometimes when people say "what?" when I talk ;-)

Initial post here. Our son, Jojo turned 5 last December. He has SMA 1+ (a stronger type 1 but weaker type 2). His two most favorite things to do are: driving his wheelchair fast and playing on the computer. As horrible as SMA is, and with all the challenges and difficulties it brings to us, we still have so many things to be thankful for: 1) Our jobs and how our employers/supervisors have allowed us to change our work schedules so that there is either my husband or me at home with Jojo. 2) My husband's health insurance that pays for all the equipment that our son needs, his medicines and special diet, and even our 2x/year hospital stays. 3) A hospital an hour away from us, with a PICU that has intensivists who are more knowledgeable and helpful than the pulmonologists we had been to, and who respect our knowledge about our son's care.
4) Our parish school board who provided our son with his own laptop computer, adapted switches/controls so he could use the computer (almost)independently, arm for the computer, deltoid aids. I thank God, too, that I am married to a man who is as devoted to my son as I am. He equally shares in the day-to-day (and nights, too) care of Jojo. We do push each other's buttons a lot when we are both tired, but I still think he is the perfect match for Jojo and me.