Friday, February 6, 2015


Isaiah's next pamidronate treatment is next week.  Already? Yeah, I can't believe it either. Time is flying.  Next week also marks 18 months for Isaiah. AKA he'll be a whole year and a half. Wow!

I sent the above comparison to Dr. B. So much change! Look how much longer his legs look now.  No more cannula or pulse ox during the day so no more wires and tubes to contend with during daylight hours. Plus, check out that head shape!

Speaking of that head, Dr B is still very concerned about the size of it.  I think I've just gotten used to it; I feel like he's grown into it. Either way, in all honestly, I was stalling on scheduling the MRI, waiting because I'm afraid to do this during flu season, and figuring we'll be there next week for Pam, so I thought we could just schedule it in person then. 

But reality is that the sooner we do this mri, the sooner we find out if Isaiah has hydrocephalus, and if he does, the sooner we get the shunt surgery and stop the rapid growth of his head and possible pressure on Isaiah's brain. 

But he lit the fire under my butt. I spent way too much time on the phone and email yesterday, but it was to Isaiah's benefit. 

Isaiah's MRI is now scheduled for Monday.  This Monday.  Yup, 3 days from now.  If it goes well, we'll start his Pam treatment in recovery and then he'll be moved to the day medicine unit (where we normally hang out for treatment) for the rest of it that day.  If he has a tough go of it, but he's ok on Tuesday, then we'll do pamidronate Tuesday-Thursday.   We're hoping that after Monday, it'll be a typical pam I recently started calling it, a "PAMcation", vacationing at the McDonald House and DuPont?  Sure, why not...Disney World would be better but we can make this fun.  We (almost) always do!

I've also worked out a formal appointment with a neurosurgeon for Tuesday.  So that means that we'll find out the results of the MRI about 24 hours after it's completed. Whoop whoop! 

We'll round this trip out with a check in with Isaiah's pulmonary team on Wednesday. 

We'll update as we can next week.  For now we are asking for prayers for Isaiah's good health, for things to go as smoothly as possible, and for us to get some answers.  

It's going to be a long weekend of waiting here!

No comments:

Post a Comment