Tennessee Vacation

We had a great time during our vacation in Tennessee. I'm a bit sad that it's over, but Jojo was ready to go home because he missed, in his words, the fast Internet at home, the Wal-Mart in Bordelonville (it's actually in Marksville, LA), and his Nana. The drive was tiring, especially the almost 14-hour drive home. We had to make frequent stops due to bathroom breaks, diaper changes, meals and wheelchair<>back seat changes for Jojo. After all's said and done, our best vacation so far.

We went to the Ripley's Aquarium of the Smokies, where Jojo's favorite part of the trip was playing with the gears that simulate the controls/regulators for temp, filter, etc. of the water in the aquarium.

Jojo "controlling the water" in the aquarium

A visit to the little museum with sculptures of dinosaurs

We also got to visit a rainforest zoo, where Jojo enjoyed meeting "King Julian" the lemur, i.e., the lemur in the Madagascar movie/tv show on Nickelodeon. He also finally got a chance to feed goats and sheep.

We enjoyed driving from Pigeon Forge to Gatlinburg, and through Townsend to go to Cade's Cove. It was so nice to see mountains and streams; things we don't see where we live. We could just imagine how beautiful the vista would be in the Fall.

Another favorite activity of Jojo's while we were on vacation: getting in the hot tub at the end of the day. I regretted not getting a head float for him in time for our vacation because he really liked for us to keep his whole body and legs submerged in the water while he "stood up" with his head above the water.

Our last day in Tennessee

Now the whirlwind of activities for the month of May is over. Jojo will be spending a quiet summer at home, with a few doctors' visits here and there. Brady and I will be back to our alternate work schedules, but we'll try to take Jojo out once in a while to see a movie, go bowling. That's our plan anyway.

Vacation winding down

Our third night in Tennessee. We decided to stay another day and head back home on Saturday. Tennessee is beautiful, and for that matter, so is northern Alabama. Coming from Louisiana that is mostly flat, seeing mountains and driving through them has been such a treat for Brady and me. This is the third year that we have been going on out-of-state trips for vacation with Jojo, and I think, this is the best one so far. In 2007, we went to the beach in Pensacola. Jojo spent most of the time inside the hotel watching DVDs and tolerated only 5 minutes on the beach before having some desatting issues. His favorite part of the whole trip was lying on a bunk bed. Last year we went to Galveston and stayed about 30 hours then hurried back home to get away from Hurricane Ike. The rest of our vacation was spent at home, with no electricity. Jojo enjoyed that, only because we got to play with him a lot because there was no cable and no Internet.

There had been scattered thunder showers here in Tennessee since we got here Tuesday evening. We tried not to let the weather deter us from our plans. Tomorrow, AM showers are expected with isolated thunderstorm in the PM. I took a lot of pictures and I will post some when we get back home.

Trip to New Orleans

We arrived in New Orleans last night, and during the drive Jojo never commented about the length of the trip. Today, he and his Dad stayed in the room while I was downstairs in a seminar. Then, they both came down with me after the lunch break so I could show the speaker the problem we were having with Jojo's head support/occipital pad and get some ideas how to increase his comfort. We ended up showing Jojo and his chair to the rest of the class. After they left me in class, Jojo and Brady went out of the hotel to check out some shops.

When I got back in the room, they were ready to go shopping! I was ready to nap. We left the hotel, walked across the street and shopped for Jojo. Then we got the van and went to Jackson Square.
I was looking forward to eating some beignets at Cafe Du Monde, but Brady did not like how crowded it was (tables and chairs, not really a whole lot of people), so we left. Then, Jojo said he needed the cough assist and he began desatting to 93. So we hurried back to the van, and by the time we got there, Jojo was at 97-98%. Well, it started raining. Jojo wanted to go back to the hotel, but I really wanted to go to the St. Louis Cathedral and take some pictures of Jojo in Jackson Square. We walked back to the church and realized that there were steps to get into the church and also to get to Jackson Square! In all the times that I had gone to that church and to the enclosed square, I never noticed that there were steps! Jackson Square is NOT wheelchair-accessible! We couldn't get in the church anyway because it was closed. (Correction, looking at other pictures I took, the front or river-side of Jackson Square has a ramped entrance; it was only the back or church-side that has steps :o)

Then, it began to rain again. So, we decided to return to the hotel.

We ended up eating at Bourbon House Restaurant. Service was superb. Food was great. And Jojo was fairly behaved and he actually let his Daddy and me eat. Of course he tasted everything we had. He really enjoyed that part.

Jojo tasting some oyters rockefeller

What we learned from this trip: 1) probably not a good idea to go on vacation where activities will require us to venture out far from the van, unless we bring the cough assist on the wheelchair with us, 2) we CAN actually go out to eat in restaurants again (yay!), 3) I think I will order us those "I hate stairs" shirts mentioned on SMASpace.

Race-n-Roll 2009: A five-year old child's race

Beginning of the Race

There was a much bigger crowd this year than last year. It was warm and humid, but we liked the new location better. There were probably double the number of SMA families, but we really did not get to meet any new families because there was a lot going on and we kept a close eye on Jojo because of the hot weather.

Not-quite-halfway through the race

Jojo drove his chair for about half a mile total. He said, "I'm driving as fast as I can," as all the other people (runners, people pushing strollers, a few kids that are type II/IIIs in their power chairs) left us behind. My little persistent boy kept driving, and refused help from his Dad and me until his arm got tired.

End of the race

It was getting hot and Jojo was getting tired, so we decided to turn around almost halfway the distance of the race. At the end, Jojo asked his Daddy to drive his chair. We are so proud of our Jojo!

After the race, Jojo watched a magic show. Then we looked for the clown. Jojo didn't want his face painted. He wanted to have a lion-balloon, but got a sword instead. After all the prizes were awarded, we went to the Mall of Louisiana to get Jojo a prize. He got to build another "bear," which was really a frog. Then we went to eat at the food court and Jojo got to taste some Chinese food.

We have two more out-of-town trips scheduled for this month: to New Orleans this Wednesday, then to Tennessee next week for our vacation. The swine flu scare made us change our vacation plans. We were planning to go to SeaWorld in San Antonio, but we decided to go to the mountains instead. Of course as of Friday, there were 72 confirmed cases of swine flu in Tennessee and 50+ in Louisiana. While we were in the Mall, we had a chance to see a couple whom we met during last year's race. The wife, Andrea, was telling us how we could get a prescription for Tamiflu or the other flu medicine, for just-in-case. Now, how did we not think about that before? So tomorrow, Brady will call Jojo's doctor and ask for a prescription. It's better to be prepared as much as we can. Our kids are so worth it.

More singing with Daddy

SMA IS JUST HORRIBLE!

I learned tonight that another child with SMA passed away very early this morning. His name was Logan Harman. As I was reading his CaringBridge site, all I could think of was: No! No! This can't be true. Logan and his family had been through so much especially the past year. But I always thought that no matter what, he would always come through. I have been following his site for so long, this news just really broke my heart. SMA really SUCKS!

Jojo and Mommy

When Jojo was a lot younger, he was able to hold his head up as long as we supported his back. I remember standing in front of the mirror holding him and he and I would smile at our reflection, then he would always put his head on my shoulder after a few seconds. I thought it was a game for him; little did I know that SMA was starting to rear its ugly head when he was around 4 months old.

Mother's Day 2009