Monday, September 20, 2010


Change is good. Change is necessary. It represents the ending of one chapter, and the beginning of the next. Change is growth...It doesn't always come easy, but it always comes just the same...whether we welcome it or not. So in the spirit of welcoming new growth and new change, I put on my brave face and did something I've never done before...

I dropped my little guy off at the front door of his preschool, and watched him walk away with the other "big kids" who are new to the carpool line.

Change is good. Change is necessary. Change is growth.

With a little wave over his shoulder, and an "I love you too, Mommy," he was gone...wisked away by a teacher. I watched him in my rearview mirror walk to class with his monkey backpack and Mr. Bear tucked under his arm. Who am I kidding? Change sucks.

And there's not a trace of my baby left in this little guy...When did this happen?

Change is tough. Change hurts. Change is 2 weeks of carpool, and I still drive away with a lump in my throat.

Everyone always says how quickly they grow up, but nothing prepared me for this. I've got that "sand through your fingers" feeling again. I'm trying to hold on so tightly, but it's slipping away just the same. And Madison isn't helping either...Nope. Miss Independent is no longer interested in cuddle time, refuses to fall asleep while being held, and would much rather hold her own bottle and let you watch........ from across the room. Sigh. I hate change.


On a happier note, some positive changes taking place...

It looks like Madison will be getting OT twice a month from Early Steps. My frustrations eventually worked their way up to the right people, and things are moving really quickly now. LOL Funny how that works... Anyway, I am hoping this will help us at least address the feeding issues. After 2 more choking episodes last week, I am really looking forward to getting some help with things. The plan is to start with sessions every other week, and increase or decrease if necessary. SO stay tuned, and I'll let you know how it goes...

Last week was also the end of our follow up appointments for Maddie. We saw the orthopedic surgeon, and the urologist. She had an ultrasound on her kidneys and bladder, and x-rays done of her hips. I'm happy to report everything went well. Here's how Mason kept himself busy during clinic...

He was a champ the whole day!

We will be getting casted for new AFO's next week, and we have recently acquired this new walker from our PT...

This peice of equipment brings both excitement and fear every time I walk past it. I'm trying to get past my fears and remind myself that this is the next step for her to walk...

Change is good. Change is necessary. Change is growth.

But change can sometimes scare the bejesus out of you.


One more thing...

I just want to say Thank you so very much to those of you who have donated to Maddie's page for the SBGNO fundraiser. We exceeded our first goal in less than a we made a new one! We have been so touched by everyone's kindness and generosity! Please continue to circulate the link, and pass it on to anyone who may want to help this amazing organization... Much love, and many Thanks !

Friday, September 10, 2010

Giving Back

I remember the first time I called the Spina Bifida of Greater New Orleans organization. I was pregnant, and overwhelmed by a diagnoses I didn't understand. I was scared and heartbroken. I left a message asking for help and information. The President of the SBGNO called me that evening, and talked with me for over an hour. He gave me support and encouragement, and put me in touch with other individuals within the group who helped me throughout the pregnancy.

Now, the SBGNO continues to help families like ours, and individuals like Maddie who have been born with SB. They have connected us with many other local families who also have children with SB, and have provided several social functions as opportunities for us to meet and join into their community. I am so thankful to have an organization like this, with individuals as dedicated and giving as they are, as a resource for us. They were there from day one, and I know they will still be a resource to Madison when she is an adult.

We have an opportunity to give back to this organization who has given us so much, but we need help. We will be participating in a bowl-a-thon to help raise money for the SBGNO. I am a terrible bowler, but they are kindly allowing me to participate. :) I would love to raise $300 for this cause, so I am asking for sponsors...donations of any amount, in Maddie's name, to help other families just like us. I'm new at fundraising, so I'm hoping we don't dissappoint them. :) I know alot of people have read our story here, and have been touched by Maddie's sweet smile and her strong spirit, and we have been touched by kindness and generosity from all around us...Now we have a chance to give back and help SBGNO to continue to make a difference in the lives of others. Please check out the link, and if you are able to donate then please leave your name, so I can send you my thanks.
Thank you all !!

Sunday, September 5, 2010

I'm Loving This...

So, my last post was kind of a downer, and I want to say Thank You to each one of you who sent me encouraging messages and comments. I have some amazing friends out there...Some of whom I've never met, but honestly can't imagine not "knowing" you. Thank you for allowing me to be honest with myself, and with you.

An update on things: I spoke to our EI Services Coordinator about my frustrations and concerns, and she has assured me that she will work to find a solution...Either another OT evaluation, or a Speech we will see. Maddie continues to tease me with glimpses of forward motion when trying to crawl...I know it will come. I just need to be patient, and maybe change up our routine a bit. Maybe a new PT location, or a new incentive will help shake things up.

So anyway, it was a long week for me, spent soul-searching and trying to work through all the things that I felt were going completely wrong. And although I'm not quite back to rainbows and unicorns yet, I thought the best way for me to get back there is to remind myself of everything around me that is completely right. So, in no particular order, here are some of the things I'm loving right now...

1. Trips to the Playground

2. Watching the Tigers win the first game of the season (barely)

3. Mason waiting for Chris to get home

4. My Girl in her polka-dot bow

5. The first cool front of the season (Yes, it only got down to the 70's, but it was heaven)

6. An orange Shutterfly package waiting at my door (the new summer book is here, and it is delish!)

7. The little guy that he is becoming

8. The bond these two share

9. One last trip to the pool before school starts

10. An unexpected gift from an unexpected friend...Kelly, we love the hat, we love the note, we love you!

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