Jojo's New 'Do

Before

and after

Journey towards Modified Independence

Here is Jojo's journey to modified independence. Even after the diagnosis of SMA, we never bothered to get a specialized stroller for Jojo. His regular stroller worked good for him until his first major illness at 1yr3mos. He was sick and in and out of the hospital for about a year, and at that time, we used a Tumbleform feeder seat and a wagon to pull him around to doctors' appointments and hospital admits. When Jojo's health finally stabilized sometime in Spring of 2006, we began exploring the possibility of a power chair. And what independence he has enjoyed since he got his chair when he was 3 1/2 yrs. old.

October 2006: Jojo and Daddy trying on a Koala chair

March 2007: Jojo learning to drive his Permobil C400

Current time: One of Jojo's daredevil ways

First day of spring?

I think I heard on TV that today was the first day of Spring. So I asked Jojo if he wanted to go outside and see if the trees were growing leaves. Some trees are starting to show some leaves, but not quite the young trees in our yard. We don't have any flowers, but our neighbors do. The pink azaleas are blooming everywhere (Jojo wore a pink shirt for the occasion. He said it was peachy pink, because pink is for girls.) Even the bayou across from the house is pretty clean. And of course, we have to take a picture of Daddy's spring garden.

Jojo is doing better, but not back to baseline yet. We are still all-eyes and ears on him. He could be 97 or 98% O2 sat one minute, then just as you turn your head, his pulse ox starts beeping. We're still doing the whole works (neb treatments, vest, coughing, postural drainage, CPT, and a whole lot of suctioning). It could have been just one nasty cold, but we are on day 6. Oh yeah, Brady now has it, along with chest congestion and generally not feeling well. And apparently, someone at my work place has the flu. So glad I was off today, and I have not been around that person for the last 3 days. As much as I don't like the humidity/heat of Louisiana summer, I can't wait for it to come just to get these nasty illnessess out of here!

Second day being sick

'Don't know exactly what he has, but Jojo is definitely sick. Last night, Brady got up multiple times every hour to suction him or turn him on the other side or give him a breathing treatment or do the cough assist. I finally got up at 3:30 to help him. We did the vest and Jojo slept solid for almost two hours until Brady had to turn him again after 6. I called in at work at 7:30. There was no way I could leave those two at home with Brady just having a couple of hours of sleep.

Jojo never got off the bipap except during cough assist sessions. I stayed with him the whole day while Brady ran to the store, connected a new inverter to our van, did stuff in the house and finally took a nap. As of this time, Jojo is still on bipap, and finally, playing his computer. His heart rate and respiratory rate are still higher than normal. He requires 1liO2 in-line to keep his O2 sats at mid to upper 90's. He continues to require oral suctioning every 2 to 3 minutes. We are betting on being up a lot tonight.

I hate to put my co-workers in a bind, but I really can't tell if I can go to work tomorrow . I've worked for my current company for close to five years. Those that I've worked with since Jojo was diagnosed seem to have some understanding of the demands of having a child with SMA especially when he is sick. They knew how often we ended up in the hospital the second year that Jojo was diagnosed. But the new ones, I don't think they understand how big a deal it is if Jojo has a fever, or a simple cold, or sinusitis, etc. Oh well, I don't really have the time and the patience to paint a picture for everybody.

Logistics-wise, I started with 11 PTO days this year. So far I have used 2 days, including today. The question is, how are we going to devy up my remaining PTO so that we can go to the Courageous Kids Camp next month, go to Sea World in Texas, take Jojo to the dentist, the ophthalmologist, cardiologist and 2 or more other medical appointments, throw in some future sick days for him or me.......One day at a time. That's how I should take it. One day at a time.

Jojo getting sick?

Almost a good, typical weekend except that now we think Jojo is coming down with something. He started being very quiet and requiring a lot of oral suctioning (about every 2 to 3 minutes!) at 4PM. His O2 sat level and HR were normal for him. No fever. He did say that his throat hurt but not bad. This evening/tonight, he remained quiet and looked tired, but he still wanted to play computer and watch his DVD. When his Daddy got home, he told him that his throat hurt bad. He was asleep by 9:30. Definitely something is going on with him. There has been so much illnesses (bad cold, cough, etc) around us (especially at work). I really thought that we got lucky and skipped being sick. The last time he was acting like this was in December. We stayed in the hospital for 2 days; we probably did not need to go but we just wanted to make sure. Well, we're just going to have to watch him closely.

Deltoid Aids

I saw a pretty little girl using the deltoid aids in a video on SMA Space. Which reminded me...Jojo got his last year, courtesy of our parish school board. They work okay for him, but would probably work better if he were able to sit more upright. Videos below were taken in July-August of 2008.

Spring has sprung

I don't know if it is officially spring yet, but it sure feels and looks like it in our little town. We just had to take time off kite-flying to take a couple of pictures with Nana's camellias and azaleas before they disappear.