Wednesday, April 17, 2013

The Other Shoe...

I have been holding my breath, delaying and ignoring writing this post for a few weeks now... We met with Dr. Koenig for our three month check in last week and I am pretty happy to report that she said, and I quote "This is the most stable I have ever seen him." She even had to do a double take to look at his leg muscle definition. And by definition, I mean his stick thin legs are thicker and slightly more muscular. Maybe it's just all the chocolate milk he loves to drink.

He is 42 pounds and 3 feet and 5 inches tall. His two biggest problem are his GI system, which we've gotten fairly under control. I haven't had to do a suppository in months. The other problem is his physical limitations. He's walking, but his ataxia sneaks up and catches us all off guard. He will always have significant ataxia, but I've noticed that sometimes he doesn't want to hold my hand anymore walking down the sidewalk to school during drop off. It makes me incredibly nervous to let go - physically and emotionally.

It's been a year since we've been admitted to the hospital. We've had ER trips, but no admissions which is huge. It's huge because if we can avoid fevers, illness and inflammation then theoretically we can help stop some of the disease progression. Mince no words, it will progress regardless, but this is likely all attributed to starting the immunoglobulin infusions for amping up his immune system in October 2012.

I'm just waiting for the other shoe to fall off. I'm paranoid if I don't have my cell phone on me constantly that something will have happened (he's hurt, he's sick, some kid at school is sick...) I've actually caught myself recently not being as obsessed as to where my cell phone is when he isn't with me or Neil because he's doing so good. When I realize that I let my guard down I kind of get freaked out; like whew! I got a pass on that one. Better not do that again.

I think what prompted me to finally write all this down is the Boston Marathon... none of those people were waiting for the other shoe to fall off. They didn't even know there was a shoe to fall off. They lived in their own worlds and then out of no where, extreme tragedy. My heart goes out to everyone who is suffering, in Boston, or wherever.

When, how, why will the other shoe fall off for us? I have no idea. I just pray that it's not as physically horrific and gruesome as what those experienced this week. I can't even begin to understand the emotions we will experience with Will. I avoid thinking about it and don't want to dwell on it. Some day's I get lost in thinking about when, how or why. Just totally lost in that pain. While I'm putting him to sleep and listen to his breathing I think about how sweet that sound is and then what would it sound like if he was struggling. Then back to the sweet hum of his breathing and occasional sleep talking. Then back to the struggle and back to the sweet breathing.

We're in an incredibly good place right now. My heart goes out to those that are struggling or regressing with this ridiculous disease. I feel guilty or bad even saying we're doing good because there are many suffering in the hospital right now.

I'll stop rambling along now, but I guess I just needed to get this all out!

In other news, our big boy now is riding in style - booster seat style. The big heavy carseat is gone and Will happily climbs up in the booster seat. He gets a big smile when he can unlock the seatbelt himself and get down before I can help get him out.


  1. Supporting you and all of your emotions. I celebrate with you in the hospital-free year. And I'm laughing at Will's belly-wearing:)

  2. I know how you feel! In some ways, K is doing really well right now, but I sort of cringe when people acknowledge it out don't jinx us! LOL. At the same time, though, her GI system seems to be getting progressively worse in spite of her awesomeness elsewhere. It is hard to balance worry and relief at the same time.