Earth Day - A Day Ahead

I wanted to post last night about how Tuesday is now our favorite TV night: 7:OO American Idol, 8:00 Deadliest Catch, 9:00 Chopped. It sounded so lame, but what the heck. If most nights of the week there's nothing good on TV despite having so many channels, then it's worth mentioning when there are actually 3 shows we like on one night. Anyway...after a looong time, Brady cooked supper for his friends. When we were first married, it really amused me before when Brady always had supper with friends either at our house or his friends' house, about once or twice a week, more during hunting season. Must be a Louisiana thing. I must admit that the suppers have gone down a lot since SMA came in the picture. Anyway, Joseph likes it a lot when his Daddy has the supper at our house because it means one or two of his buddies would come. I think he just wants to feel like he's one of the boys.

Tomorrow is Earth Day. Joseph wanted to plant a tree for Earth Day. Because Daddy is working tomorrow, they decided to plant the tree today.

HAPPY EARTH DAY!

We Shall Overcome (Of course)

Joseph met his villain.

But the villain and its henchmen were quickly defeated.

If only Mommy/Daddy's villains were defeated that easily. Villains come in many forms. In our case, they are all the negative feelings of sadness, fear, and at times, anger, that assault us when we are reminded of just how horrible and cruel Spinal Muscular Atrophy is.

The villain sometimes catches us off-guard when Joseph asks us questions like:

"When I'm older and my muscles are working, can I play dodge ball?" or

"Why does my leg have to hurt?"

We don't have a straight answer to the first question, but had a pretty good idea about the second one. Expecting words like "osteoporosis" and "hip subluxation" did not make it easier to read the x-ray report re: Joseph's hips. But reading the report was a bit easier than actually looking at the x-ray films. It hurt me a lot to see just how bad Joseph's hips and bones are. It reminded me that as much as we try to put SMA to the side and try to live our "normal" lives, the ill-effects of SMA just keep on. So for a moment, I let my villains overpower me. Tears were shed. Endless moments of just staring at Joseph. And then, back to our "normal." Anyway, there are plant nurseries to go to,

plants/flowers to be planted,

and there's a little boy who needs help to play games on the computer and who dreams that he will become a rock star/pop star and get married when he is a grown-up.

Easter, Spring and Super Hero

The Easter Bunny came bringing different kinds of small balls to Joseph.

Joseph did not make it to Deedee/Nana's Easter lunch because he was sick. But that didn't stop him from knocking eggs with family.

By Tuesday, he was feeling much better and able to go to Nana's and see her flowers.

He drove around in Nana's yard and looked at the beautiful azaleas.

He took a picture with Nana, then he insisted on going into the house. He would have loved to stay but it was time to go home.

On Friday, Ms. Frances and I took Joseph to a nursery to buy more plants. We found a 2-year old princess for him, but the princess didn't want to have her picture taken :) That upset Joseph:( But he recovered fast. I think that led to him deciding not to be a prince anymore. After we came back from the nursery, we sneaked into our neighbor's yard to take pictures with their pretty flowers.

This Saturday, Joseph officially became a superhero instead of a prince. We think it's in keeping with the superhero-themed shows on Playhouse Disney this weekend. And so, here he is:

Super Pow!

We went outside to look for villains and saw nobody.

Hmm, I can't fight with those.

Super Pow had to return home and wait for the SuperVillain (Daddy) to find him.

Not Quite Our Normal Yet

So what's Jojo been up to these last two weeks?

The weekend after Jojo came home from the hospital was a little rough, with Brady going back to work and Jojo needing extra treatments. The following week, Jojo was pretty much back to baseline while his Daddy and I tried to "recuperate" with not much luck, between being very busy at work and then Jojo's sitter being sick and unable to come. That whole week, Jojo was counting down the days until the Kids' Choice Awards on Nickelodeon! You would think we had a tween-ager instead of a 6-year old. Jojo, lately, has also been saying that he needs to have a Princess who is 5 or 6 years old like him. I told him that he's too young to be thinking of girls and relationships, to which he responded that when he's a grown-up he could have a girlfriend then. Oh my goodness. Where does he get this idea: from watching I Carly or because of his brother Austin having his first serious girlfriend? Anyway...

Old Wheelchair

versus

New Wheelchair

He still likes the old one better.

For a short while there, it seemed like we're back to our normal...

Shopping trip to Sam's

Buying flowers at Lowe's

Going in and out of the house as the weather allowed,

or depending on Jojo's mood.

Dyeing Easter eggs

I might have spoken too soon. Here's Jojo on Saturday afternoon at 1:00 PM: wanting the bipap and trying to take a nap. Not the normal for him.

And by Sunday morning, he woke up with a 101 fever. And tons of secretions the whole day. Not exactly how we wanted to spend our Easter Sunday. We'll see how the next week goes...

Home Is Where the Comfy Bed Is (For Dad & Mom)

Weaning off the bipap, Thursday morning - Max time of one hour

Mad dash to get home this morning.

Van was parked illegally with threat of being towed.

Jojo surprisingly returned to being off the bipap for the ride home and all day today, except for two short breaks while he had the breathing treatment and the vest. In his own words, " I have more air when I'm on the bipap (while having his vest treatment)."

Octoboy getting ready for bed tonight.

We are very happy to be back home with our little boy. It's so nice to have our own bathroom, own bed and the luxury of walking away to another part of the house when one of us needs a break. Jojo was expecting a welcome party when we got home, but it was just one of our neighbors with his dog who came up to us as we were unloading. Nana came afterwards. Then Austin came home at the end of the day. Brady will return to work tomorrow. Austin has his baseball tournament. Jojo and Mommy will be relaxing at home this weekend. It's like the last two weeks never happened. I hope we filled the quota of Jojo's hospital stay for a long time.

PICU Day 8

Jojo got a little upset tonight. Not because we're still in PICU or on the flipside, because we might go home in the next two days. Not because we're about to take his bipap off again for cough assist session or because we couldn't understand what he was saying. He was sad because Lacey Brown was voted off the American Idol. Jojo liked Lacey's hair and her voice and believed like we all did, that there were three or four other people who deserved to be voted off before her. Oh well, Jojo and Lacey will survive.

We are planning to be home before the weekend. If the new g-tube comes in tomorrow and gets placed on Jojo, we may decide to leave tomorrow. The pulmonologist, however, talked about seeing us on Friday. He said Jojo did great on his sleep study, and that the bipap setting we have right now is good. We were just concerned about his CO2 level on bipap, but the recent capillary blood gas test result was within normal limits. Jojo told his Daddy tonight that he's ready to go home. We're just going to have to slowly wean him off the bipap during the day to help him return to his baseline. Hopefully, our next update will be from home.

PICU Day 7

Still updating from the PICU. Jojo is getting closer to his baseline. He has not taken any naps during the past two days, he watches TV and plays on the computer. His lungs are still junky, but he now responds better to the cough assist. The only thing is that he still does not want to be off his bipap and his O2 sat still dips to 94% or lower without the bipap. Yesterday his chest x-ray looked so much better, prompting the intensivist to suggest discharge for today. Well, Brady and I said no because we would like him to be off the bipap when we go home. So, it's pretty much up to us when Jojo will go home; that's how it's been during our past hospital stays. We are lucky that the intensivist has the knowledge about SMA and the care it entails, and that he trusts us with our judgment and decision when it comes to Jojo. We've been here a week, and therefore our intensivist has to take his days off and won't be back until Saturday. The physician who will cover for him is a pulmonologist; someone we saw once or twice before in the MDA Clinic about two years ago. We welcomed the opportunity to hear what he had to say about Jojo. So later this afternoon, the pulmo guy came and talked about sleep studies and so on and so forth, ending with the judgment that SMA kids will eventually have to move on to ventilators. That's fine and dandy, because we are interested in switching Jojo to a ventilator non-invasively. The guy has never heard of it. He's only familiar with ventilator via tracheostomy. So the whole thing sort of upset me. One, because why do we, as parents of the patient, have to be the one to educate the physicians on interventions that they are supposed to be the specialists of? Two, because I do not want to be reminded that my child has a progressive condition/disease with an inevitable result. Don't remind me of this, help me to do something about it.

Anyway, Jojo is having his sleep study right now. I'm curious to see what the results will be. Looking at his stats on the monitor tonight, he should be home. But we'll see how he does tomorrow. Maybe it's unreasonable to expect him to be off bipap during the day (as was his baseline) so soon after this illness. Brady and I both think that this is the worst illness he's ever had, even after the flu he had two years ago or the countless "pneumonia" or right upper lobe atelectasis he had in the past. We asked Jojo tonight if he was ready to go home and he said, "Not yet." As always, we'll follow his lead.