Ten years ago...

So many people are reminiscing today, about where they were ten years ago. I remember. We all do, but I don't talk about it often. It was one of the hardest days I'd ever experienced. It was a day of fear and adrenaline and exhaustion by the time it was all done. I remember talking immediately to the people I loved, my mom was at home sleeping, my Dad couldn't be reached right away since he was on a private jet to Dallas, and my Nana. I was still working in a TV newsroom, and that made it crazy. From the moment I saw that second plane hit the tower, everything shifted into overdrive and my life was changed.

I like to look at how much has changed in my life since then... and for the better. I'm no longer working a full-time, as a newsroom manager in a crazy, competitive, stressful environment. Instead, I'm able to freelance, work from home, and work my schedule around my family.

Ten years ago, I wasn't married, I hadn't even met Troy yet. I didn't have any of our 3 beautiful children. I didn't know I had a brain tumor (although it was probably already there) and I hadn't survived Max's horrific early birth, his 4 month hospital stay and his several near-death experiences. I was a completely different person.

I think 9-11 changed a lot of people, some in big ways, some in smaller ones. For me, it started a slow, gradual change in my whole life and it's a change that I'm so thankful for. I am where I always wanted to be, doing exactly what I've dreamed of doing, and living my life as if every day is my last. I am grateful for every moment of every day with my family. I can't wait to see where we are in another 10 years!

It all started with a lamp

Recently, we put a new lamp in Ella's bedroom. She'd been asking for a "seashell lamp" since we were in Florida a couple of years ago. So for her birthday this year, she got one. We filled it with the sand we bagged up at Siesta Key. (funny story how it was all bagged in Ziplocs and then double bagged in grocery bags in my luggage and security thought I was trafficking) Then we added the shells, sea weed, sea glass and rocks from Englewood beach. It really is beautiful and grown up and looks nice on her dresser.

But it reminded me of how quickly my girl is growing up. I remember when we found out we were pregnant for the first time. We started talking about the room and painting and we bought a lamp. I found it, in our favorite Brookside boutique (J'Adore) and knew it was perfect for the room. It was a frog prince, sitting under a lilypad, with little butterflies and dragonflies dangling around him. It's been Ella's bedside lamp since the first night when we brought her home from the hospital. It was sweet, something from a fairy tale, something perfect for our baby.

She's not a baby anymore. With concerts and a crush (on Justin Bieber) she's turning into quite a little lady, right before our eyes... it just reminds me that it all started with a lamp... but look how far we've come in these 6 years since.

WE LOVE YOU SELENA!!!

She was screaming with excitement and had the best time! I took Ella to see Selena Gomez. We gave her the ticket and a cd for her birthday last month, and went with her best friend, big sisters and their moms. (including Miss Kimmie)





It was truly and evening of little girls, mommies and mini vans! We sat in front of Ella's friend Riley from dance, we sat behind the school nurse, her daughter and a friend, we sat just a section away from more dance friends... Ella was a social butterfly talking to everyone she knew! (I wonder where she gets that?)

It was a great night, considering it was 102 degrees when we arrived and still in the 90's when Selena hit the stage after dark!




Ella sang and danced for hours and still didn't fall asleep in the car on her way home. It was great to see her have so much fun! (and she actually got up and had a great day at school the following morning, which was our main concern!)

Alex back to school (and the sequel)

Okay, so things have been a little crazy around here... but Alex went back to preschool this week! He was so excited to start pre-K. Last year, he just wasn't ready in the fall, so we waited until he was potty trained and sent him to the red room, with the other 3 year olds in February. He LOVED it and this year, he couldn't wait to get back to his buddies!

A good luck hug from my sister

He's in school 3 days, Tuesday and Thursday, he's in the yellow room pre-K. Wednesdays, he's in the Rainbow Room, which is one of Ella's old classroom for his Explorer group. He already loves his teachers for both classes and is excited to have a few of his buddies from last year, as well as lots of new friends in his class.

Rainbow Explorer teachers Mrs. McCluskey and Mrs. Lud

Yellow Room teachers Mrs. Protzman and Mrs. Haughey

Really the only glitch we've had is my Mommy fail. We showed up Tuesday morning, ready to go! Daddy took the day off, Grammy was in town from Florida, so she joined us, we all packed up and headed for school. We took pictures outside, and went in to see the teachers... but something was horribly wrong. No one was there. Wrong day. School started Wednesday. So we came back the next day and did it all again, minus a few of the photos. Alex was un-phased. He still loved it and well, let's just call it a dry run!

FINALLY!!! In class with my buddies!

Those cute, chubby cheeks... not so much!

Max finally had his appointment with the neonatal developmental psychologist today. We've had to cancel twice, because of his ear infection. This appointment included an evaluation and testing, so he needed to be on top of his game.

It was not an "everything is fantastic and he's great" appointment. But we were not surprised by anything either.

Max's speech and eating are delayed. We know this... we see it everyday and we wanted to ask about it. Now we know more of why....

He has "low muscle tone and fat deposits in his cheeks." It's caused in large part by the lipids, which he received as part of his IV nutrition for the 3+ months when he couldn't eat. Now those cute chubby cheeks are keeping him from chewing and speaking properly. So we're being referred to a speech and eating therapist.

Because of the delay, it's impossible to tell if he can comprehend at the appropriate level. He's not where he should be. The doctor would put out a book, ball and cup and ask Max to pick up the cup. Max can't do that. He'll pick up what he wants, but doesn't follow commands like this. Much like he doesn't way bye bye or play peek a boo. He will kiss if you smooch at him, but that's about it.

It could simply be because he can't speak and to say the sound helps to associate it with an object or action. But it could also be that he has permanent damage from his brain bleed at birth, that's the scariest part. Because he is probably 6-8 months delayed in speech and feeding, it's just too early to tell what's what at this point.

It explains why he only eats crunchy foods, because he can hear and feel them. It explains why he stuffs his cheeks full, like a chipmunk, because he can feel the food and get the sensation of chewing up something. It also explains why he still drinks from a bottle, his cheeks and tongue are not strong enough for a sippee or straw. So we keep working.

We hope and pray everyday that Max will reach his full potential and live a happy, productive life someday. With the physical, we knew that he might not crawl, or might not walk, but we knew there would always be options to help him work around those difficulties. We were prepared for a walker or for a wheelchair, but at this point, the doctor feels his physical development is going well. She expects him to walk on his own in the next couple of months.

The cognitive development is much scarier. It's harder to tell what is happening, and when it's happening and why... but we know that some brain damage won't be reversible. We know that he's more likely to be autistic or have other learning delays. We just continue to work with him and the therapists to help him do the best he can and we take in one day at a time.

We'll love him the same no matter what, we just want the best for him and we want to see him surpass all the expectations people have for him.

I think the best part of the visit, was when the doctor was working with Max on problem solving. When he couldn't figure something out, he would turn to his brother and pat Alex on the arm, obviously looking for help. Or when I asked where Alex was, it was the one word association that he made right away. He would physically turn around and lean over my shoulder to see Alex standing behind me. It was amazing to see how he knows and relies on his big brother. It was so sweet to see how already, he knows that Alex, and any of us will help with whatever he needs in life. We are working to help him, as well as giving him the tools to help himself. We are so blessed to have him in our family.

One year at home

Yesterday was another big milestone for Max... and an even bigger one for us. It's now been one year since we brought him home from the NICU.

That take home day, was the day he really became ours. No more doing things on doctor or nurses or respiratory therapists schedules. It finally was all about our family, and just Max. He could eat, he could sleep, he wasn't hooked to wires or tubes or monitors, we could lift and hold him at anytime for as long as we wanted He was OURS!

It's a day that we never thought would come. It was 123 days later than we wanted it to be. But we'd take it, whenever we could get it.

(first evening at home... snuggling with Daddy)

It was a scary first night at home one year go. We slept with him in the co-sleeper between us. I say slept, but not really. He couldn't lie on his back with out gagging and turning blue. We put him on his tummy and took turns keeping watch over him. We woke every 3 hours to feed him another bottle to keep him growing bigger and stronger... my what a difference a year makes!

(one year later... snuggling with Daddy before bedtime)

Max has grown and thrived and loved and laughed and we are grateful for every minute of this first year at home with him! And we're looking forward to so many more...

Ella: Part 6

We're just a week away from Ella's sixth birthday. I decided to have her party a week early, to avoid all the chaos of school starting... so we opened up the Robinson Drive-In in our driveway this past Saturday night.







It was great fun and we could not have asked for a more beautiful night! Clear, light breeze, no bugs, AWESOME!