Bathtub Memories and Head Float

Please indulge me as I keep posting then-and-now pictures of Jojo. I just love seeing how much he has grown.

Jojo at 2 or 3 yrs. old

At almost 4 yrs. old, he had almost outgrown the tub.
At almost 5 yrs. old, he had definitely outgrown it.
A bigger tub for the big boy

Lesson learned: When given the opportunity to build a house for a physically handicapped child (or adult), plan for the worst scenario. When we built our house, we did not think that Jojo would not be able to sit upright, or that he would eventually lose much of his motor abilities. I guess we hoped that he would stay the same way; we were in such a big denial about SMA. Anyway, he took baths in our bathtub, and as he began to grow longer we were faced with the unwanted prospect of buying a bigger tub and renovating our bathroom. We had hoped that the OCDD (state agency that assists people with disabilities) would help with the costs. They required us to submit three estimates (labor costs, materials, etc.) We finally got two estimates, but they were not good enough because they had to be very detailed as to number of nails and such. We wasted almost a year waiting for help, and decided to give up. Fortunately, one of Jojo's godmothers gave him enough money for us to purchase a bigger tub and helped with the cost of putting in the new tub along with plumbing. We've had the tub for more than six months now, and Jojo just loves it.

Jojo got his head float yesterday and decided to try it on today.

Friday Update

Jojo didn't get to go on his slip 'n slide today because his Daddy was at work. He went to the library this morning for the last day of the Summer Reading Program. They had somebody from New Orleans do the puppet show and it was pretty neat.

After the library, we ran some errands then picked up a kid's meal from Burger King so Jojo could have his Transformer toy. The rest of the day, Jojo just took it easy playing computer and watching TV. Of course he had to taste the cheeseburger, apple fries with caramel and the chocolate milk.

I wish that there would be more opportunities for Jojo to be around kids his own age. We really need to work on getting him to attend school at least twice a week during the next school year.

Glorious Thursday

It's a glorious day, because it's the end of my work week and I don't have to go out in this heat unless I want to. Our weather man showed the high temps in the country today, and our area - north and central Louisiana got everybody beat at 107 degrees! But somehow, yesterday at 101 degrees was a lot hotter and more suffocating than today. It must be the humidity.

Solution to the heat? $9 slip 'n slide from Wal-mart!

After Jojo got bathed/dressed, it was time to say Good Night to Daddy's new flower bed.
And because it's Thursday, Jojo gets to sleep with Mommy in the big bed.

I just read on the SMASpace that a SMA child had the swine flu. I was not very concerned about the swine flu affecting us before, but reading about a child like Jojo being afflicted with it just brought the matter closer to home. We're praying for a quick recovery for the little girl, and that nobody else gets it.

Jojo Beating the Heat

After Brady and I finished "sliding" Jojo back and forth on the slip 'n slide, Jojo lounged on his old shower chair and just enjoyed the water. He had a great time, although the pics above didn't capture his smile. We told him to keep his mouth closed so water wouldn't get in.

Father's Day

"Hi Daddy!" RSV at 3 months old. SMA had not affected Jojo yet.

Big and Little Brady at 5 months old

At 8 months, SMA not yet confirmed

At 10 months, did we really want to know about SMA?

As we journey through life with SMA, I could not have chosen a better partner than my husband Brady. And Jojo could not have had a better father. Thank you Brady for doing more than your share of loving and caring for our son. You are much appreciated!

Fun Week

Jojo's having a fun week so far. Monday, the four of us went to Lowe's an hour away to buy some flowers. But before that, we ate at Logan's first and while we were there, we saw our former priest (the one who married Brady and me and also baptized Jojo.) Tuesday, Jojo helped me make his Father's Day gift to Brady while Brady was out with his friends and Austin was in a ball game. Wednesday, Brady and Nana took Jojo to our church where they were having summer reading program. Jojo listened to some stories and made a "cupcake." Brady said that Jojo really enjoyed that.

Jojo and his cupcake

Then that afternoon, I met them (Brady, Austin and Jojo) at Wal-Mart. Jojo picked a balloon for Brady.


Today, after work, Brady and I took a drive and ended up with take-outs for supper and an ice cream cone for Jojo. Of course, that just made Jojo's day, especially after he tasted some of my soup, too. And we even had time to take a dip in his mini-pool.

Sunflower and Jojo's Earlier Days

Drake (Austin's dog), Jojo and his sunflower

"Why is it not facing the sun?"

Not much going on in our household. Just HOT and HUMID outside. We had a quiet weekend with just Jojo and me. Jojo's babysitter had a procedure done and she will, hopefully, be back next week. Nana came everyday for a couple of hours each day this weekend and kept Jojo busy and entertained. Tomorrow Brady and Jojo will make pickles out of cucumbers from the garden. Because there's nothing to update on, I am posting an old picture of Jojo and one of my favorite videos below:

Vegetables! and Summer

Jojo showing off some more veggies from his Daddy's garden.

Biggest tomato ever from the garden

Summer is here! It was 95 degrees today and 97-degree temperatures are expected this weekend. Humidity is back, too. That means, Jojo and Mommy will stay inside. I guess we can go outside in the morning if Jojo wants to. Our big boy is actually beginning to show interest to learn how to read. I wish I had my sister's patience. I will always credit my sister with teaching Jojo about colors and numbers when he was 2. We're just going to have to work on reading and whatever stuff kids his age have learned/are learning this summer.

Rare Tuesday update

Brady set up Jojo's little pool yesterday and we got in it today. The water was cold, but Jojo didn't mind it. He kept telling us to do something exciting in the pool. And when we got him out and dried him enough so he could drive around a bit, he proclaimed that "This is a great day!" We just loved to hear that.

Late spring/Early Summer pics

Wow, the weekend flew by fast. Jojo is not complaining about his tummy anymore, so it must have been just gas. This morning we went outside to pick some vegetables for Ms. Jane. She was Jojo's very first babysitter and now she comes on weekends to bring me communion. Brady's garden has matured well and is producing eggplants, tomatoes, yellow squash and bell pepper.
After Miss Jane left, we went to our neighbor's yard to admire her roses.

Then, we checked on Jojo's sunflower: it's getting taller, but the flower has not opened yet and it is still green.

We went around the front to look at our new flower bed. It only took almost four (!) years to get this garden started. Brady still has to put other plants in once I decided what they're going to be.

By this time, it's getting pretty warm so...Jojo got under a tree to check out the Sunday sales paper.

Regular weekend with a tummy ache

We're back to our regular quiet weekend. Jojo finds ways to amuse himself like driving round and round and round. This afternoon he complained that he had a belly ache, but got better after "nature called." Then tonight, he complained to his Dad that his tummy hurt whenever he took a breath. His Daddy vented his g-tube, rubbed his belly and even did his special "number 2 exercise." He does not appear to be in distress as he sleeps and his heart rate is in the 50's to 70's. He asked me to sleep with him just before he fell asleep at 10:00, and so I will.