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

First Veggies from Daddy's Spring Garden

Mother's Day Weekend

Mother's Day is second only to Christmas as my favorite and most important holiday. I can't remember my first Mother's Day with Jojo, but I will never forget the second one. Jojo came down with his first major illness post-diagnosis of SMA in April 2005. After spending two weeks in PICU, he was finally healthy enough to be transferred to another hospital for his gastrostomy and Nissen's fundoplication. That Saturday, Brady and I went to church; separately, to two different churches and at different times (one of the perks of being Catholics). In church, I cried, particularly when the priest said the blessings for the mothers. All I could think of at that time was if Jojo would still be with us on Mother's Day the following year. The next day, on Mother's Day, I rode on the ambulance with Jojo while Brady followed behind us. We got to the next hospital, waited to meet the surgeon, washed Jojo's hair in the sink because we couldn't give him a full bath due to his IV line, then took pictures of his belly with its lone belly button.

Fast forward to 2006. My best Mother's Day so far. My Mom and my sister were visiting from the Philippines; and more importantly, Jojo was fine and healthy.

This Mother's Day weekend, I plan to spend some quality and fun time with Jojo. And I am going to take a lot of pictures and videos of him and me.

Rainy Sunday

It rained almost the whole day Sunday. Luckily, the lightning and thunder stayed away from us. We stayed inside for most of the day, but once the rain stopped later in the afternoon we stepped outside for a little bit. Jojo wanted me to turn on the water hose, supposedly to clean the driveway of debris. Then I realized he just wanted to drive back and forth underneath the arc of water.
Tonight, before he went to bed, his Daddy wanted him to listen to a new song. And before I knew it, he started "singing" with his Dad.

Saturday: A Glimpse of a Well-day

Jojo missed Special Agent Oso this morning because we didn't wake up until 7:30. He stayed on the bipap until 9:00. Then I brushed his teeth, did the cough assist. By 10:00 Jojo was up in the wheelchair and had his first bolus feed. He watched TV and played on his computer while I tidied up the kitchen. Jojo has been mesmerized with his palms lately. He'd ask me to open his hands all the way so he could compare which palmar creases were more red. Because he keeps his hands loosely in a fist, his palmar creases are well-defined, red and sometimes itchy due to sweat. So I decided to put some powder on his board and let him rub his hands on it. That kept him busy while I made a few paper boats. At 1:00 he had his second bolus feed, then we went outside. I set him up with a table so he could play with water.

Then he asked to lie down in the back of the van. I read him some stories while he tasted a lollipop. At 3:30 we went back to the house so I could prepare his formula. He had his third bolus feed at 4:00. Then he had to taste some food: prunes (baby food), caramel on apple slices. At 5:30 we went back outside again to recycle the water he played with by watering his Dad's tomato plants; but, he had to play first. We went back in the house at 6:30 to wait for his show on Nick - Timmy Turner. He had a sponge bath at 8:00 per his request so he didn't have to miss his show. His Daddy came home about 8:30 and finished getting him ready for bed: brushed his teeth, coughed him, put the bipap on. At 9:15, Jojo was asleep. That, in a nutshell, is a fairly typical schedule for Jojo, on a well-day. When he is sick, respiratory treatments pretty much trump play time.

Taking care of a child with SMA is a full-time job and more. Every minute of the day is spent with the child, either actively through hands-on play time, medical care (use of equipment, feeding, changing diapers, etc,) or passively as in, part of you always listens for any sign of distress or beeping of the pulse ox when you are not in the same room as him. Even at night, you are trained to listen subconsciously to the smallest whimper from him, signalling a need to turn him to the other side or suction him.

It is not an easy life, but it's a meaningful one.

A look-back: CureSMA Race-n-Roll 2008

Last year, at about this time, we went to our first CureSMA Race-n-Roll. The weather was horrible that Saturday morning with thunderstorm warning and a lot of rain. The turn-out was low because of the weather; instead of about 20 families (I think), only 4 or 5 families came. There was even a young lady with SMA whose name I forgot, but if I see her again this year, I'll make it a point to get to know her better.

JosephBaudin's Team (minus Mommy)

Jojo in the race
Jojo with Joshua, River and Anna Rose
Jojo with Aubrey

It was during that race that we met Emily Green (Picou), her daughter Aubrey and the rest of their family. Emily wrote the "recipe" for the Amino Acid diet for us and even gave us a whole box of Tolerex and other supplements! We did not really get into the AA diet full-time until about a month after the race. We are very thankful to Emily for getting us started on the AA diet, which I personally feel has helped Jojo a lot. One of these days, I'll write more about our AA diet experience.

Anyway, we are planning to go to the Race-n-Roll in Baton Rouge next weekend. We hope the weather will be much nicer than last year so that there will be a bigger turn-out. Of course, now there is the swine flu.