Monday, January 30, 2012


Even the word transition makes me cringe a little...and I'm not sure why. Maybe because I find change unsettling at times. And when I think about transition, I think it's a little more uncomfortable than just change...I think transition is what happens when change is met with resistance. Your'e not completely on board with what's happening, but you are trying to move into a new direction. You are in transition.

Last Friday we had our first transition meeting with the school system and our Early Steps team. It's something that has been coming for quite awhile, and I have just been in denial about it. Maddie will turn 3 in June, and when that happens she will no longer be in the care of EarlySteps. I guess to understand what that means for us, you have to first understand what Earlysteps is. Every state has their own form of Early Intervention for babies born with special needs, and under these programs, kids are provided free therapies from birth to age three. Maddie's SB qualified her for PT from the beginning, and OT within the last year. So for the last 2 1/2 years these therapists have been a part of our lives, providing amazing one-on-one therapy for Maddie, and support for our family. And anyone who knows us, or follows this blog, knows what a HUGE difference this therapy has made for Maddie. She has done phenomenal, and I don't want it to end. With her third birthday approaching, we are starting the transition process to exit from EarlySteps' care, and enter the public school system. There are so many things that frighten me about this transition.

I guess the biggest concern is the level of therapy that she will receive. Everything I am learning suggests that it will not be one-on-one, it will not challenge her, and it will focus on functioning within the school system...not continuing to progess and gain function. The school people at our meeting made that much abundantly clear. I told them that Maddie is currently "functioning within a school setting", with very little assistance, and I wanted to make sure that the therapy they provide her would conitnue to focus on her thriving and not just "existing". I found their response disheartening, and somewhat condescending. "Lots of parents tend to get confused about the therapy we provide"...she began. "Our responsibiliy is that she"exist" within the school system... Therapy focused on gaining function and challenging her is more the responsibility of a private PT through your insurance." My heart sank.

PT through insurance is not an option for Maddie. I haven't posted about this before, mainly because I haven't been ready to deal with it. I'm still not, but we're on the clock now, so I have to. Unfortunately, our policy states "therapy is to be covered for acute conditions only". Because Spina Bifida cannot be cured or recovered from in a set amount of time, it is clearly a chronic condition. Our insurance company has told us they will not pay for any therapy at all for Maddie because she has a chronic you see why we will dearly miss Earlysteps. It has been a Godsend. While it's true, you can't recover from SB, if they could only see what a huge difference therapy has made, then they would realize it's in everyone's best interest to cover it. She is doing things no one expected her to do, and I want it to keep going. I can't explain how frustrating it is to be in this situation...To see how far she's come with this incredible team, and tell them goodbye...To hear that your child's condition doesn't warrant therapy, because someone thinks it's a wasted effort... To know the amazing potential that is there, and be told "It's not our responsibility" to utilize it. It infuriates me beyond words. I am shaking right now just letting myself go there.

Don't get me wrong...I'm not giving up. I am appealing everything possible. I am learning all I can about any other resources that may be an option for us. And I am praying...and trusting that Maddie's story is not dependant on any one person. I have to believe that with or without therapy, she will continue to thrive...because it's in her. Because it's in me. Because "existing" is not an option.

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.

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!

Monday, January 2, 2012

Great, actually.

Maddie's walker hasn't left it's spot in the garage in 6 weeks. Even as I type that I'm having a hard time wrapping my brain around how HUGE that is! It's a pretty big deal, right?! It started with short outings without it, and she did great. Then one day we forgot to bring it to church...and she did great. Then we got brave and decided to try a day at school without it...she was amazing. Then we realized she had grown some, and we needed to adjust the height of it..well it got stuck in that position and I couldn't fold it down to get it in my it stayed home that day, and hasn't left since. It wasn't an overnight miracle, but instead it came quietly and day at a time. And we almost didn't even notice it. In the middle of all the holiday whirlwind, my little girl became an independent walker, and somehow we are just now realizing it.

Does this mean she will always walk on her own? I don't know. Maybe. Maybe not. But today she is walking independently, and I'm good with that...great, actually.

Both kids are enjoying the horseback riding lessons, and I really think it's been a huge help with Maddie's balance and coordination. It's giving Mason courage and self-confidence. I can see it in his eyes...when he's on that horse, he's a pretty big guy. :)

Our holidays were as beautiful as they've ever been, and we have enjoyed every last second.

We spent Thanksgiving in Hammond at my Grandparents home. The kids love going there. It's wide open country, complete with horses, cows, tire swings, and tractor rides. I love watching them enjoying the simple things that brought me so much joy when I was little.

Christmas is always our favorite, and I'm so sorry I didn't take more pictures, and post more updates. It was wonderful. From Christmas in The Oaks, to The Polar Express at Barnes and Noble...we trimmed the tree, baked the cookies, and sprinkled reindeer food all over the sidewalks. It was everything it's supposed to be, and it was magic.

Dancing on Christmas Eve

So it's a new year, full of new possibilities. There all still many concerns...many things that keep me up at night...Like brand new braces that don't fit right, and speech issues that I can't explain...but I'll save that for another post. It's 2012, and the glass is half full.
My family is happy and healthy, and all is good...great, actually!
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