Sunday, August 31, 2008

You say it's your birthday...'s my birthday too!

How could it not be happy???

Tuesday, August 26, 2008

The Box Children

We're going on almost two weeks of congestion and coughing. Luckily moods and appetites are hanging in there, so I'm not too worried. But, it has put a little damper on our last few days of summer...

I go back to work (part-time) on Tuesday and the girls start school on the 15th. To say I am freaking out would be an understatement. I am, however, looking forward to 6 hours a week kid-free. I think I might get back to the gym! I haven't worked out for 4 years!

Thursday, August 14, 2008

Hippos: Greek for Horse

Yay! I am so excited! Eden had her very first hippotherapy session on Wednesday. She did an incredible job, and I am so proud of her.

Hippotherapy is basically just physical therapy on a horse. The horses movements mimic the pattern of human walking, and require the rider to use their core muscles for trunk support, while at the same time really stretching those adductor muscles on the inside of the legs. Exactly what Eden needs.

Plus, it's really, really fun, making it that much better.

I have to admit that I had an emotional moment at the beginning. I can't describe the feeling, except that it was a combination of pride, joy, and absolute panic. I thought that I would be involved in the process. You know, helping get her on the horse, helping hold her while they led the horse...something. But the therapist took her from me, and she went willingly. And that was it. I was supposed to sit on the bench and watch. Gasp.

I guess it was separation anxiety that I was feeling, stemming from that relinquishing of control. I have been completely involved in everything that Eden has ever done, especially when it's something big and new. I KNOW what she is thinking and feeling, and I know how to help her manage her body and tone. I know what she needs and it was hard for me to take a step back and let her be independent, separate from me or from her dad. I know I've gotta do it, but it's not going to be easy.

It was just a small taste of what we have in store when she goes to school. A mere 31 days from today...

Tuesday, August 12, 2008

My Four-Year-Olds

I picked up Holland and Eden's 4-year-old photos today from the photographer. We have them done every year, right around the time of their birthday. Each year, as I am putting them in their frames, I spread out all of the photos from previous years and compare how they have grown.

This is the first year that I can say unequivocally that they don't look like babies anymore. They don't really even look like toddlers. They look like little girls. Sigh.

Four years.

Where have they gone?

It's terribly sad that my memories of our time in the NICU are so crisp and vivid, down to the smells and sounds, while memories of the good times are so fleeting. I wish I could bottle up each age, so that I could pull it out any old time to breathe it in and remember.

The best I can do is to keep blogging, so that I can look back to this time last year, or two years ago, or three. I love that I am able to do this, and any time I think of retiring the blog, I remind myself of how fast the time flies by and how quickly our memories fade.

So, let me try to capture my sweet, sassy, quirky, beautiful little girls, as they are at 4-years-old. Although words can never really do them justice...


Holland is a little bit tomboy, a little bit drama, and a little bit rock & roll. She is very sweet and affectionate, but also bossy. She feels her emotions intensely, very much like her mommy. She wants what she wants when she wants it, and will whine, pout, and turn on the tears in an instant when she doesn't get her way. Somewhere along the line she picked up the line "It's not fair!", and uses it a LOT. Life's not fair. Yes, I do tell her that, and the irony is not lost on me.

At the same time, she is super friendly and always up for a good time. She has a way about her that makes everything fun. She is the kid who wants to know everyone's name. She walks up to other kids at the playground (or anywhere really), and says, "My name's Holland, what's your name? Do you want to play with me." When she meets a kid who responds to her, she is happy for hours, telling me "I made a new friend!" She is sensitive to rejection, which is something that worries me.

Holland is finally really interested in growing up, but at the same time reluctant to relinquish her babyhood. She balances this transition by frequently telling me "I'm a baby-big girl." We've FINALLY got the potty-training down, but not to perfection quite yet. She still wears a pull-up to bed, and has occasional accidents. I'm impressed nonetheless, especially with the fact that she wore a pull-up while we were at Disney, and only had a couple small accidents the whole time.

I prepped her for months about giving up her bottle. I started telling her that 4-year-olds don't drink bottles. They drink their milk from cups. On her birthday I woke her up saying happy birthday. She popped up and asked, "I'm four-years-old now?" I said yes, and she responded "That means I don't drink a bottle anymore!" With only one small hitch (NANA), she hasn't had one since, and IS drinking her milk out of a special princess milk cup.

The one area that she (we) are really lagging behind, aside from her size, is in terms of self-feeding. But that is a post unto itself... Right now she weighs about 28.5 pounds, and is just over 38 inches tall. I've officially given up on growth charts, so I have no idea if that equates to any percentile. Probably not, but does that change anything?

Holland's favorite foods are ramen noodles, spaghetti, broccoli, carrots, pickles, tomatoes, Ritz crackers, bananas, and cheese. Her favorite color is blue, and she LOVES Thomas the Tank Engine with a passion. She knows all of the trains by name, and has quite a collection. Thomas is her first choice in what to watch, but she also still loves Elmo's World, as well as Word World and Caillou.

She's really into telling jokes now. She has an old joke book that she "borrowed" from Nana's house that she spends hours "reading." Her two best jokes are:
Q: What's black, white, and green?
A: A carsick zebra!
Q: What does a cow read at the breakfast table?
A: A Mooospaper!
She loves when we tell her jokes too, and always plays along even when she already knows the punch line. She laughs and says "that cracks me up!"

Holland LOVES music and loves to dance. She is the drummer in our family band, Princess Monkey Chicken, and has pretty good rhythm, though you wouldn't know it to see her dance!

Holland is somewhat sensitive to loud noises, and doesn't do scary. She HATES those ads that you see during previews to movies where they are showing you the wonders of digital sound. She will pass on a movie she loves just because she hates the previews. Like the movie Cars, for example. Loves the movie, but HATES the cows mooing before the movie starts. I don't even know what it's an ad for, but it freaks Holland right out. There's also a crazy puppet on one episode of Teletubbies that she (and Eden) cannot STAND, and we can't even watch the show anymore because of that puppet. It IS kind of a weird humanoid puppet in a pink house that scares the bejesus out of my kids. Anyone know what I'm talking about? That's OKAY with me, cause "tubbytubbies" isn't my favorite show anyway.

Holland tends to flit from one activity to the next pretty quickly, and has a hard time paying attention for long periods of time. She is also really easily distracted in situations where there is a lot going on. We really noticed it at Shedd Aquarium in Chicago. We tried to let her walk some of the time, but she would get so distracted that she would run right into people or poles, or end up tripping over her own feet. I'm not sure if this means anything significant at this point in time, or is just where she is developmentally, but I'll be interested to see how it plays out at school.

Holland LOVES her family, her cousins, and her "friends" intensely, and is very loyal in her affections. She continues to be a mommy's girl, but is really enjoying her daddy right now as well. Each night when I tuck her into bed she says "I love you very, very, very, very, very, very, very much." She wraps her little arms around my neck and gives lots of kisses.

I could live without some of the whining, but ultimately, she is a really, really, cool kid.


Eden is a little bit princess, a little bit comedian, and a little bit attitude. She has always been so laid back and sweet, but as of lately, has decided to try the sass on for size. She has found some of our buttons, and is experimenting with her ability to push them. I remember a few months ago, when she had her last speech eval, the therapist asking if she used the word "not" yet. At the time I said no, and was given the homework of teaching her that word. So, we practiced it for about a week in different contexts. Then one day, I went to get her out of her walker and she said, "Wet go of me. I NOT." I was SO excited! She got it! Little did I know that it would soon become one of her favorite words. Now we get the pleasure of hearing Little Miss Attitude mumbling under her breath "I NOT go do it, I NOT" over and over again. She's even got her arms crossed and the look of defiance on her face is priceless.

Eden has historically been Daddy's sweetheart. It was all about Daddy. Well, things have changed and she is giving Daddy a run for his money BIG time. Oh she torments him. "I no want Daddy! I want Mommy! I wike Mommy!" One day at Disney John got Eden out of the car. She told him she wanted Mommy to do it, but he did it anyway. Boy was she pi**ed. And she can hold a GRUDGE! She was rude and mean to him for several hours that day, any time he tried to touch or talk to her. She can be really mean. Yes, my sweet little Eden, hitting and biting when she gets mad. We're working on it, and she is getting it, but it takes time. I did teach her that it's not okay to say you don't like your family. She will say "I wike YOU Mommy" and I will say, "I like you too Eden. I like you, and Holland, and Daddy, I love our family." So now she will sometimes say "I wike you Mommy. I wike Holland, Daddy, Nana, Papa, and YOU. I wike everybody."

For all of her defiance though, her heart breaks when she gets in trouble, especially if she thinks she hurt someone. She bit Holland's hand the other day for grabbing a toy away and Holland started crying. All I had to do was LOOK at her and her bottom lip jutted out and she started sobbing. I put her in time out (a fate worse than death) and after a few minutes I picked her up and she hiccuped out a "Sorry Holland." She gets so sad when I am upset with her that I have a hard time disciplining her. We've had to really buckle down on being consistent with the punishments lately because she is getting so sassy. Up until now, we've been able to get by with the fact that when she is being a brat, we just have to make a silly face at her and she cracks up and forgets about being bad.

Eden LOVES to be silly, and has always had such a great sense of humor. She laughs at all of Holland's jokes, and tries to tell them herself, but doesn't quite get it yet. If she wants to make someone laugh, she will often just bust out with the punchline. For example, she might, out of the blue, say "Chicken Butt!" Or "CockadoodleCHOO!" Or "Mooooospaper!" It cracks US up, but no one else has a clue what she is talking about!

Eden has princesses on the brain. The only songs she wants to sing...the only books she wants to read...the only movies she wants to watch. Princesses. I love it. It's the best of both worlds. I get to watch Thomas and Belle. McQueen and Ariel. Mickey and Cinderella. But don't tell Eden she IS a princess. She always responds the same way. "Noooo...I not a princess. I Eden!"

Both of the girls LOVE to pretend. We pretend to be characters all the time. It's pretty constant. "You can be...(insert character of choice)." Holland is Ariel, Eden is Flounder, Daddy is King Triton, Mommy is Sebastien... Eden is Belle, Holland is little Chip, Mommy is Mrs. Potts, Daddy is Beast...Holland is Mickey, Eden is Minnie, Mommy is Daisy, Daddy is Goofy...Holland is Thomas, Eden is Percy, Mommy is Salty, Daddy is Cranky...Eden is Dora, Holland is Diego, Mommy is Boots, Daddy is Swiper. You get the picture.

Eden's language has come along in leaps and bounds since this time last year. She still isn't at the same level in terms of the depth of her understanding and expression as Holland, but she is definitely at a point where we can carry on conversations. She can tell me when something hurts, or when I don't have her orthotics on right. She can tell us about her day, or recount a story in simple terms. I love it. I really and truly LOVE talking to her and listening to her talk to me. Sometimes it actually DOES bring me to tears. Her hearing impairment and cerebral palsy are both things that could have significantly impacted her ability to communicate with us, in a variety of ways, and I am so thankful everyday that she can hear with her cochlear implant, that she has the ability to talk, and that she seems cognitively "normal". I feel humbled by the fact that things could have turned out so differently.

As with Holland, we have made a tremendous amount of progress on the eating front with Eden. Mealtimes are much less stressful than they were a year ago, but we certainly still have a way to go. Eden is not a picky eater at all, she just has a hard time eating enough volume to grow. She gets full easily, and when she is over-full her reflux bothers her. Eden has a ton of energy and burns a LOT of calories trying to get around. She weighs about 24.5 pounds and is 37 inches tall.

Eden's favorite foods are pizza, chicken nuggets, cookies, chocolate birthday cake, fajitas, guacamole, hot dogs, oranges, and watermelon. She willingly gave up her bottle for her birthday as well. I feel like it is the right thing to do in terms of her social and emotional development, but I am kinda sick to my stomach over the loss of calories, vitamin D, and calcium. I'm hoping over time she'll be hungrier without the bottle, and thus will eat more. Well..It's been a week and a half and I think she is losing weight:( If only she'd drink milk out of a cup. She drank it out of a bottle, and liked it, but when I give her a cup of milk she acts like I'm trying to poison her. I've tried different cups, different variations on milk (strawberry, chocolate, etc)... Nothing works. I'm just going to keep offering it, over and over again, and hope that at some point she'll decide it's not so bad. She does drink a ton of juice (V8 Fusion with Duocal), so I don't have to worry about dehydration, but I just love all the good nutrition in MILK.

Eden is the keyboardist/singer in our family band. She loves to play the piano, and sing in the microphone. We just need to expand her repertoire, since the only song she wants us to play is "Whole New World."

We have a big collection of plush characters, and puppets that we made from our favorite shows. Both girls are big on telling me "We should get Pete at the store." Or, "We should get a Tinkerbell costume." Or, "We should make Thomas puppets." They think you can just go to the store and buy a costume for any character. I think it is so funny. Just today Holland told me, "We should get Word World costumes." She said she wants to be Dog. Eden wants to be Ant.

They fight a lot. Is that normal? We have to have two of all the best toys, because they HAVE to HAVE whatever the other is playing with. It's infuriating sometimes. They each have a few toys that are "theirs" and you should see the meltdowns that ensue when the other touches "their" toy. They also purposely antagonize each other just to get a reaction. There's a lot of screaming and hitting and grabbing and crying. But at the same time, they really love each other, and it's fun to see their relationship develop as Eden becomes more able to interact with Holland. I hope so much that they will be friends, there for each other, and that they genuinely grow to like each other. But even more than that, I hope that they grow up to like themselves as much as I like them. If that's even possible!

Friday, August 08, 2008

You stole my story!

It has recently been brought to my attention that someone is/was stealing pictures of Eden from this blog and using them as their own. This person apparently joined an online parenting forum, and was passing Eden and her story off as a little girl named "Dani" for the past THREE years. I know several people online that this has happened to, and I figured it was just a matter of time before we got hit too.

This person has a photobucket account with quite a collection of Eden's pictures and videos, pictures of our dog, and even a picture of me and one random photo of Holland! The strangest part to me was the photo collage that they made of Eden that had their name watermarked across it in big letters.

Honestly, I don't feel alarmed or violated or outraged by least not too much. I just feel...incredulous, and maybe even fascinated trying to understand what makes people do these sorts of things. I even feel a little bit sad. Sad for the person doing it, that they would be so desperate for attention, compassion, friendship, or whatever it is that they are looking for, that they would resort to something like this. Even more I feel sad for the people who have been following "Dani's" story for three years, praying for her and her "family" and becoming so invested in her life. I know that I am very emotionally invested in the lives of some of the kids that I read about online. I feel really attached to many of them, and think of them often. I would be devastated to find out that they were "fake."

My guess is that, in most cases, the people doing this are young kids who don't really have their own story to tell yet. On the other hand, they may be people with personality disorders, who have an intense need for attention, and a penchant for compulsive lying. Either way, the moral to the story is that you can't believe everything you read on the internet.

I hope that my new readers, directed here after finding out that "Dani's" story was a fake, enjoy getting to know the "real" Eden. She's a pretty awesome kid after all.

Thursday, August 07, 2008

Happy 4th Birthday Holland and Eden: Our Disney Adventure

Wow! What a whirlwind the past couple of weeks have been!

So, we survived our BIG trip, and very thoroughly enjoyed ourselves. We left last Monday, the 28th, and returned home on Monday the 4th. In those 8 days, we packed a serious amount of fun into 4 Disney parks in 5 days. FIVE days of theme parks...I don't know what we were thinking???! The girls were such troupers. Sometimes I can't believe how flippin lucky I am to have such awesome kids. They are so much fun, and have such sweet and interesting personalities, that I can't help but fall more and more in love with them every day.

On Tuesday we did the Magic Kingdom, Wednesday was Animal Kingdom, Thursday Epcot, Friday Hollywood Studios, and Saturday back to Magic Kingdom. We got to see a Lion King musical, Beauty and the Beast on stage, a Nemo musical, have a princess breakfast, ride Cinderella's carousel, play in Ariel's grotto, check out Pooh's treehouse, talk to Crush (the sea turtle from Finding Nemo), see a Monster's Inc. comedy show with Mike Wazowski, check out Mickey and Minnie's country homes, take an African safari, see Playhouse Disney Live on Stage, see the Spectral Magic Light Parade and the fireworks over Cinderella's castle, and meet LOTS and LOTS of Disney characters. Holland and Eden loved the rides and the shows, but meeting the characters was by far the highlight for them, and thus for us.

They got SO excited when they saw any character, complete with squeals and waves. We actually had to hold them back on a few occasions because it was just SO hard to wait their turn! Every character we met got huge arms wide open hugs from Holland, and kisses on the nose from Eden. Eden especially couldn't take her eyes off of them, and we had to work hard to get them to look at us for pictures. They were big hams with Holland showing off her wacky knee dance, and Eden spinning her wheelchair.

We had an exceptionally awesome experience on their birthday at Epcot. Near the end of the day we thought we would leave the park a little early, and go back to the condo for dinner. On the way out, we passed a character greeting area, and Eden spotted Minnie Mouse through the window. We wheeled up to the window, and I crouched down next to her to wave to Minnie. Minnie saw us, and came to the window to blow Eden some kisses. Next thing we knew, one of the greeters came around to get us, saying that Miss Minnie had requested to meet us. We bypassed the entire line to go meet Minnie, who was so amazingly sweet and kind to my kids that it brought tears to all of our eyes. She then took us down to meet Mickey, and Pluto joined us for a group photo. The girls were completely overjoyed and excited. Everyone in the room was watching them, laughing, and enjoying the moment along with them. Their excitement was contagious. It was truly an awesome day, and I was so happy to be able to celebrate their lives with such joy.

Four years ago, I might never have imagined that such a day would come, and I am forever grateful.