No News is Good News...Until Now!

For the past 6 months, I have been reminding myself that I needed to update our blog, but I was hesitant as I didn't want to to jinx all of the positivity that was going on. So hopefully you all assumed that no news was good news. :)

For a quick wrap up, we have been busy enjoying life! Between therapy, play dates, family time, and beach visits, Alexander has been busy exploring his environment and learning so much. His therapy sessions are 5 days a week from 9-11 everyday. Two of those days, Alexander is in group therapy (a social group for kids under 3) and Alexander LOVES it! In May, Alexander finally learned to stand up from the center of the room. This was something he hadn't been able to figure out due to the braces on his feet restricting his ankle from moving. Essentially, Alexander had to learn two different ways to stand up (how to stand up with and without shoes on). Since he's learned to stand up, he's been climbing on everything, learning to jump (very close to being successful), and beginning to ride his tricycle!

Alexander's health overall has been okay. His oxygen saturation levels have been staying between 80-90, which is right where everyone wants them and his heart function is good. Last month, we learned that Alexander has fluid in his ears (which could be a reason of why he is still not talking) and that he needs tubes in his ears. In July, we had to take Alexander to the emergency room at CHLA due to having a low heart rate. After a few hours in the emergency room, we were able to go home after the power output from the pacemaker was increased. But we were also told that Alexander's pacemaker lead has an issue at the implant site on his heart and that more power is required from the pacemaker to get his heart to pump. His doctor said he hoped the pacemaker battery would last long enough that lead replacement could occur during his Fontan (the third surgery in a series of three open heart surgeries that he needs). Well last week that all changed.

On Wednesday night, we took Alexander back into the emergency  room at CHLA because his heart was skipping beats. He was admitted for the night and the next day we learned that Alexander needs the leads replaced within the next week.  That date is TOMORROW. Tomorrow at 8 am, Alexander will be undergoing another surgery, to replace the leads and possibly another pacemaker (the battery life is low again because of the power that has been used in order to keep the heart pumping). The recovery in the hospital is typically 1-2 days with this type of surgery, so we can only hope that this is the case but we do know that Alexander isn't a text book child- he always has his own agenda.

So, once again, we ask for your prayers and positive thoughts that our Superman's procedure is simple, with no complications prior to surgery, during surgery, and after surgery, and his recovery is quick.

To end, here are a few photos of what's been going on over the past 6 months. <3