Archives for the month of: May, 2013

So, Kevin and I were standing in a parking lot outside of a gas station yesterday (each with a 32 oz Diet Pepsi) he said it seemed like everything was pretty balanced but lately we got….. slammed. (I said finishing his thought – Sorry Baby!)

We had just finished an appointment with a kidney doctor. Grace has been having a lot of UTI’s and we need to figure out why so we can prevent them. We went through it all with him. He is going to do his part but he’s also referring us to a pediatric urologist. We’ll got to Minnesota to add the urologist – it was that or Iowa City. Currently Grace doesn’t have any doctors in Iowa City, but she has doctors in three medical systems in the Twin Cities. So Minnesota here we come!

Yesterday there was an x-ray and an ultrasound – and they needed a urine sample. Never fun.

Next week we meet with the GI doctor.

The week after that we’ll head to Minnesota for the urology consult.

Three weeks after that we will be back in Minnesota and Grace will undergo surgery to implant a VNS. Even though it’s nothing as complicated as her brain surgery a few years ago – we will be back with the neurosurgeon who operated on her before. A device will be implanted over her collarbone and a small wire will be run up and connect to the vagus nerve in her neck to her brain. The device will provide regular electrical impulses to Grace’s brain. This should disrupt or decrease the activity in her brain that causes seizures. In addition to that we will have a magnet that we can pass over the device when she’s having a seizure to help decrease the severity and length of the seizure. It will take a year to a year and a half for it to be fully functioning. She may or may not be hospitalized overnight – there is a lot we don’t know. Her being g-tube fed and non-verbal increases the likelihood that she will have to be monitored more closely, but maybe not evidently.

We’ve dreaded having to do this – but the feeling now is that we need to take this next step – in the progression of doing everything we can to help Grace this is the next step.

In the meantime there will be an MRI and more x-rays. Our pediatrician will get to see us a lot because she has to have physicals in conjunction with all these things. We’ll get her braces adjusted, and hopefully we will get a new helmet soon. Pink of course.

In the middle of all of this we will trial a communication device for Grace.

We will not be bored.

Kevin and I had talked about giving up Diet Pepsi in June. All of this to tell you – giving up Diet Pepsi is no longer in the plans for June.



“Though she be but little she is fierce.”

Fierce isn’t necessarily the first word I would use to describe Grace…but when Kevin saw the shirts he said we had to have them for Grace, Chloe, Jacque, and Jill.    Grace is most definitely fierce in her love of dance.

But it’s not just dance – the more I thought about it, the more I realized it’s everything….she is fierce!   I need to add the word to her description.

She has so many obstacles to overcome – and she does it everyday.  She is working to communicate, working to walk, working to engage with others, working to learn, – and doing all of it with a brain that doesn’t work the way it should, a body that doesn’t do exactly what she wants when she wants, and seizures everyday just to keep things interesting.  I truly believe she is winning friends and influencing people – in part due to this fierceness.

And while no longer as little as she once was – she’s still a little girl.  Our little girl, who won’t grow up in the way it’s commonly defined. 

I know she’s physically growing up and I worry about how big she’s getting constantly.  I don’t want her to outgrow us – outgrow our ability to help her, care for her, provide her with the best experiences that we can.  I have wished to be stronger and taller a lot lately! 

Fierce isn’t a word I’d necessarily think to use to describe myself or Kevin either – but as we’ve lived the last few weeks of doctor’s appointments, medicine changes, school meetings, equipment not showing up, and our questioning of what other options we have to help her – we have had to be fierce.  I hope to be fierce respectfully.  I think some people understand that part of the fierce is love, part advocating, part seeker of answers, part voice of Grace, part a plea to continue to work with Grace and never ever give up on her.

As I watched her dance in her recital on Sunday – and watched our friends and family watch her dance I just knew that we could keep going.  Sometimes you have to be reminded evidently.