Sunday, January 22, 2012

Home again.

It's good to be home. In spite of the fact that it's a sticky 74 degrees outside, in January...In spite of the fact that I have a week's worth of laundry awaiting me...I am glad to be home.

Our trip back to Philly was incredible. It went better than I ever hoped for, and I am so thankful for all the many prayers lifted up for us while we were there. I am happy to report, Lil' Miss redefined SB for everyone at CHOP this week, and I couldn't have been more proud.

We flew in on Tuesday, and both kiddos were super excited. They were really geared up at first, but soon both were sound asleep.

We got to our hotel around lunchtime, and ventured out for something to eat. Thankfully a great little pizza place was directly across the street, and both kids were up for pizza. Afterwards we slept. Alot. Like the kind of nap that you wake up and it's dark, and you're totally disoriented, but strangely we ate again.

Wednesday was all about urology...and quite honestly, I was nervous. I didn't think Maddie would lay quietly for an hour while we waited for her bladder to fill and empty...but she did. I didn't think she would allow them to position and re-position wires and cameras all around her without making a fuss...but she did. And I certainly didn't think she would grab her tummy and announce "Tummy hurts, I need to go potty", as they filled her up....but she did. And we were all stunned. Dr. Carr said it was actually the appropriate time for a typical child to feel discomfort from a full bladder, but it was the first time I'd ever heard Maddie say it, and I was truly baffled. Still am, a little. Her bladder never really started contractions, and she didn't want to sit on their gigantic potty we really don't know if she felt a full bladder or not...but between you and me, I think she did. ;)

The urodynamics study showed that her kidneys were healthy, and that she did not have any reflux...which is awesome. She also had very little in her bladder when they started, which means she is adequately emptying on her own. We were also told that cathing for social continence is still basically inevitable, but we will cross that bridge when we get there. Right now, there is no medical reason to begin cathing...and that is a great thing!

Thursday was the physical and neuro developmental evaluations. These are pretty interesting. They are performed by outside docs who are "blind" to the study participant groups. This means they cannot know who is in the prenatal group or the postnatal group, so they are completely objective when testing and finding results. They even bandage up the scar because the postnatal scar looks different than the prenatal scar. So anyways, you get the picture...they had no clue she was a postnatal baby.

The physical exam went really well. She improved a whole function level since her last eval!! The doctor classified her as a functional L5, with feeling to S1-S2. Maddie definitely did her part showing off. She did every kick and wiggle on command....she sat up, rolled over, and walked unlimited distances. The doc even had her walk the hallway AFO's...and she did!!! It was unbelievable!
Beyond the exam, Sister walked all over that hospital like nobody's business. She wanted nothing to do with her stroller, and it did my heart good to see how far she's come since our last visit. The last time we were here she was a year old, and still not crawling...This time she was unstoppable.

The neuro exam went on for almost 3 hours...but it was a good thing, because she wasn't getting enough wrong for it to end. The doc was blown away by her vocabulary, and Maddie kept her laughing with all her little comments and mannerisms. ( One pic to identify was a mug...Any other kid would have said "cup" to identify. My girl looked at it and said " that's coffee." LOL She's my child!)

It was so much fun seeing all the doctors and nurses who played such a huge part in our lives from the moment we were diagnosed. They all remembered us, and Maddie, and were thrilled to see this spunky little girl chasing her brother through the halls. It was amazing to think how far we've come. We visited everyone in the SDU who first explained to us what SB really meant, and gave us hope for the first time. I got goosebumps visiting the staff in the labor/delivery unit. We went into that SDU facing very scary circumstances, and left with only happy memories. I will forever be grateful to every person at CHOP who made such a difference to us.

A little sightseeing...

Some were more excited about the bell than others...

A street artist in the market offered to draw Mason's portrait for a few dollars, so we did it...And he struck this peculiar pose and held it the whole time! My little goofball...

It was an awesome trip...and I can't imagine what it will be like when she's 5 and we go back again, but I'm already looking forward to it.

1 comment:

  1. Woo-hoo!!!! That is just plain AWESOME! Go Maddie! I'm so thrilled for you guys. :) :) :)


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