Friday, January 13, 2012

Back to Philly- Part II

It seriously blows my mind that we are about to make our 30 month visit back to CHOP. It doesn't seem that long ago that we were there for Maddie's 1 yr. follow up, seeing all the familiar faces, and meeting lots of new ones. We have really great memories from our time in Philly, and I'm excited to be going back.

We will fly out early Tuesday and come home on Friday. Wednesday will be urology day. Maddie will have a videourodynamics study done to show how her bladder is functioning. This test always makes me nervous. Of all the issues that come with SB, the bladder/bowel issues can be the most frustrating and difficult to manage. And that seems to be the case at any age. This test always has us walking a fine line between cathing and not cathing. And depending on what we learn Wednesday, we will once again revisit that line, and determine where to go from here.

I'm not so worried about the other evaluations, because Maddie's been doing so awesome...but even so, every parent wants to hear that they are doing a great job and just reaffirm that it's actually working. All the countless hours of stretching their little muscles, working in PT, and encouraging our kiddos to keep pushing, and get back up and try's actually making a difference.

The fact that this visit is already here, is just another reminder how quickly the time is going. Maddie will be 3 in June, and with that comes more changes than I can even process. The biggest one of all is losing EarlySteps. Maddie will age out of the EarlySteps program at age 3, and we will lose all of these amazing therapists who have become like family to us. Michele has been seeing Maddie in our home since she was newborn, and the idea of not seeing her anymore is so difficult. I'm not even sure how to explain it to Maddie when the time comes. I know every special needs parent goes through this transistion, and lives to tell about it. :) We will too. It's funny....I remember when this all started, I couldn't even imagine having these strangers in my house, several times a week, all the time....Now I can't imagine life without them.

Change is so dificult, but it comes whether I like it or not. Maddie is growing up. She's left her baby days waaayy behind her. She's become a full-blown preschooler overnight. (she won't even let me hold her hand in the school hallways now. "I don't need your hand Mama...I do it self!") Sigh. I hate change.

So keep us all in your thoughts and prayers for a smooth, and happy trip back to Philly next week. I hope to be posting a GREAT report when we get back!


  1. I hope you have a great time in Philly. You guys should take a visit to Smiths Free Play Place if you get a chance. I wish that our trips would have lined up so that we could see you again this time. I'm pretty jealous that you will be in Philly!! Say hi to everyone for us! Maddie is going to blow them all away! Safe travels!

  2. Maddie is adorable we were in the MOMS study at San Fran and had are 20 month evualuation in November. I seen you at the National Spina Bifida Confernece and wish I would have got to talk to you. Looks like she is walking great. HOORAY for beating the odds!


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