Passing time.

I know, I know…it’s been more than a day since I’ve posted an update about my little man on my blog and I know you all are anxious for an update. I’ve had quite a few people asking me how he’s doing. Well, we’re just passing time and this photo pretty much  sums up what Chance thinks about just sitting here in the hospital…silly guy would be bored to death if it weren’t for that pacifier that he loves to show off lately.

Oh…and he knows he’s funny when he does this little pacifier trick. Really, this kid could be a comedian…he cracks me up.

Seriously, just go ahead and laugh…that’s all he wants is to make you smile…so he can smile too.

We were told yesterday that the labwork came back from his CSF showing that his red blood count was high in the fluid that’s being drained from his head. We had hoped to go through surgery Monday, however, because of the results of this test we have to wait. If we went forward after getting those results it’s likely that the shunt would clog again and cause another malfunction. So we’ve got to wait a few more days. Surgery will likely happen on Wednesday or Thursday. Chance is getting bored…there’s really only so much we can do.

Sunday I got to take a bit of a break and headed over to Winnie Palmer to meet with others for the Spina Bifida Association of Central Florida’s board meeting. We chatted a lot about the planning for the upcoming walk-n-roll event and afterwards a few of the ladies headed over to visit Chance. I suppose I should thank spina bifida for doing one thing…it’d build a family I never knew I had. I’ve had more people affected by spina bifida visit Chance in the hospital than anyone else.

Chance enjoyed the company.

While at the meeting we received word that the Mayor of Orange County and the Governor of Florida have officially recognized October as being Spina Bifida Awareness month in the state of Florida. We all owe a great deal of credit to Nicole Gower for helping make that happen and for all the amazing work she’s doing to help push for the local chapter to be something so much more amazing to families in central Florida.

The days seem to be dragging since we learned surgery would be delayed. The days have begun to merge together. Chance is no longer on an IV. I’m quite thankful he has one less wire for me to worry about but it means we need to pump him full of more fluids given the amount of fluid being removed from his little body through the wire draining fluid from his head. He’s been drinking lots of pedialyte.

Around lunchtime Jaylen came to visit. He brought his favorite puppy dog.

Jaylen has missed his baby brother a lot. He is always excited to come visit and once he arrives home he lets Jason know he misses Chance. It made my day to see them together today. Chance was bored and tired of laying around so I sat him in his bumbo just before Jaylen arrived. Boy was he excited to see Jaylen! Jaylen has this new thing he started to do with Chance. If you’ve ever seen Finding Nemo you might recollect the scene from the movie where they say “fin. noggin. dude!” Jaylen does this to Chance and he ends up full of giggles.

I can’t wait to be home so they’ll have more time together…

Chance was a bit more fussy today. I’m convinced he’s just tired of being in this room laying around. As much as I try to move him around sometimes it just doesn’t help. We spent a while this afternoon just hanging out together. It’s a hassle to move all the wires and make sure the wire draining externally to a bag is set up correctly but we did what we  had to do and he couldn’t have been more happy to be in my arms. Today this little stinker learned to pull the wires off that track his vital signs. If we’re not careful he might get super sneaky and find a stealth way to escape…okay, that’s what I wished we could do.

Quite a few times today this was the baby boy I had to care for. The one who let me know many times today that he’s had enough of this hospital. Yes, Chance, you’ve expressed my sentiments quite well too. Just a few more days buddy and we should be home.

If all goes as planned we should be here just a few more days. The doctors have ordered him start a vitamin K shot to help with clotting so that when it comes time for the surgery he might do better and hopefully it’ll help prevent issues with the next shunt.

So for now we wait. And pray.