Some Dates for Your 2009 Calendar

2009 is going to be an exciting year!

First of all, does anyone want to run the Shamrock Shuffle on March 29th with my neighbor and I? The Shamrock Shuffle is, correct me if I'm wrong, the world's largest 8k race and they cap the race at 32,500 participants. That may sound like a lot, and surely it is while you're running elbow-to-elbow with 32,499 other people down the street, but the race fills up fast and I want to make sure that everyone knows that registration starts on January 1st. I love this race and I've participated in the last 6 out of 7 years, missing only last year because I was too cheap to pay the entry fee. But I did go to the gym that day and run the full 8k. There were just a lot less people there and no one gave me a t-shirt. Needless to say, it wasn't the same and I'm gonna be there this year! C'mon Kari ... whadda ya think!?

I feel as though it's kosher for me to discuss an event that will somehow be incorporated into next year's goals because I ACTUALLY FINISHED ONE OF MY GOALS FOR 2008!!!! As of Saturday, December 13th, I officially finished my 500th mile for 2008. Currently, I'm 18.5 miles over budget, but there are still 5 days left to the year - who knows what I might do. Maybe I should focus on my other goal, a sub-7:30 minute mile. Hmmmm ... I don't know about that one. The people at the gym probably don't want to see me puke.

Another important date for 2009 is the next Chicago installment of the Great Urban Race taking place on August 1st. Registration is already open and if you register before January 1st you'll save at least $5 per person (I should be getting a kick-back for my promos). The race is going to be limited to 500 teams, so I just want to make sure that no one misses out on this awesome experience.

I hope that everyone had a great Christmas and that 2008 was good to you. If it wasn't, then 2009 is just around the corner and new days are a comin'. I'll post more about Christmas just as soon as I figure out how our new camera works. I haven't even unpacked the USB cable yet.

Let's All Sing Together Now

The video quality may not be there, but the musical abilities are shining through! Taken on Brian's cell phone so please excuse the fuzziness.

Baby Jesus, It's Cold Outside

People who know me know that I'm not a religious person. And for the benefit of those of you that don't know me .... I'm not a religious person. However, having grown up in a Catholic household I still have a fascination with religion, specifically the Christian faiths, and it is because of this fascination that I have collected religious mementos, books and other trinkets over the years. Take the Wall of Faith for example:

Located just outside of our bathroom, the Wall of Faith is made up of crosses from all over the world, and I think each one is beautiful. In fact, I love crosses so much I would actually like to get one tattooed on my back. Unfortunately the pain of the last one is still very fresh in my mind, so it may be a few years before I forget. But, if you're ever on vacation and can't think of what to bring back for me, then how about a nice cross? I only ask that you make sure there's no one on it. Too morbid for me.

I also have a special place in my heart for Pope John Paul II, which I believe is adequately conveyed through my pope candles, snow globes and most importantly:

My Pope-On-A-Rope
(handmade by my dear friend, Kari)

The current pope, Benedict something (?), is on the other side of the soap, but let's face it, we're all just waiting to see who the next one's gonna be, so I don't count him.

There are many other items in my collection - my Mother Mary night night (which I don't use because it kind of creeps me out), my Last Supper lunch box, and I even have a Last Supper serving plate (thanks, Kim). Then there's Christmas ....

Every year my favorite part of unwrapping and putting out the Christmas decorations is finding all of my nativity sets. I only have a few, but each one has it's own story and comes from a special place. This year I added my grandmother's nativity set that she handmade back in '82. It goes without saying that it's my most special nativity set.

But the most EXCITING ONE was added this year and I got it FOR FREE on Freecycle. I don't know which part is more exciting - the fact that it was free or the fact that it LIGHTS UP and is currently in front of my house, nestled in a 5'x3' wooden stable.

If you were to ask Brian he would probably say that the fact that it's in front of our house is not that exciting. But if you asked Charlotte she would say to you, "Baby Jeshush .... Outside .... Cold .... Blanket". Yes, the little baby Jesus now sports a small blanket because Charlotte was worried that he was cold in the snow. That's all she talks about now, from the moment she wakes up until she goes to bed.

Now I may not be a religious person (my miscellaneous collections aside), but I do have to thank baby Jesus for helping teach my daughter an important lesson ... Compassion. I knew there was a reason I put those nativity sets out.

Drunk on Vegemite

Can you get drunk on too much yeast extract??!! Look at this poor child. She can't even hold it up the right way! I think it's time for an intervention.

He Sees You When You're Sleeping (isn't that kind of creepy?)

This weekend marked Charlotte's first experiences with Santa Claus. Yes, Santa -the man that all children fear. Yet, somehow, they don't seem to mind the whole toy thing. Yesterday we went over to a local park expecting to see Santa arrive in a helicopter and greet all the good little boys and girls. But, alas, the weather was not cooperating and Santa's reindeer must have been resting up for the big night, so instead of a grand, wind-sweeping entrance Santa arrived via antique firetruck.I was a bit anxious to see how Char would respond to the man in the red suit. We talked about him for the whole week prior, looked at pictures and even played with little Santa figurines. All in the hopes that maybe she wouldn't be like every other kid and she wouldn't cry when he came near her. And for their first meeting she did pretty good! No tears, just that typical toddler look of, "and WHO are YOU??!!"

For Char's 2nd meeting with the big guy we attended her first big Christmas party with Easter Seals today. It was a nice event (except for the fact that it started at 8am) held at Neiman Marcus before the crowds were officially let in to buy their overpriced non-necessities. Char was introduced to a "princess" when she got to meet Miss Illinois. But, honestly, Brian and I were both a little upset when she decided to show some little girl how the crown was held to top of her head with a crazy hodge-podge of bobby pins and tape. C'mon!! She just killed the allure of the perfect beauty queen for me. I thought it was held up by magic and the lack of cellulite. Luckily Charlotte didn't see that. Phew!

And then it was time for SANTA ......

And, it turns out that she is in fact just like every other kid. Char didn't want to have a quaint visit with Santa. BUT she was happy to take the baby doll that he was handing out. Typical. Thanks Easter Seals for a great first Xmas party and thanks for the baby doll Santa!

And now I, like I'm sure a lot of other parents out there, wonder how long it will take until I get a nice pic of my daughter on Santa's lap. It took 18 years for my mother to get one of me. And even then I was still a little afraid of him.

The Long and The Short of It

It's been a couple months since I let you in on our lives, so I thought I would give you, the viewer, the choice of two options to get you back up to speed - a short synopsis or the long version. Proceed as you wish ...

The Short Version
Charlotte is doing great - lots of therapy, crawling, sitting by herself, talking up a storm. My classes are good. I'm all done with my Computer course and only a few weeks left of Anatomy. I love dissecting dead people. Brian is good. He's been working hard to make his end-of-year budget and he was sad when it got cold cuz that means no more motorcycle rides until the Spring.
The Long Version - And I Mean LONG
(Disclaimer - if I forget anyone's birth, wedding, or any other major event that has occured over the past few months, I apologize. My brain is not what it used to be. And that was NOT an open invitation for jokes!)


First, let me just say that Charlotte is doing AMAZING! It seemed for awhile that she had started to plateau and we felt that we weren't seeing the physical gains that we had hoped we would achieve from all the therapy she was receiving. I'm not saying the therapy was bad, it was just that I felt she could have been further along then she was. Well, I don't know what exactly has happened, but in the last few months she has been hitting milestone after milestone. Charlotte can now sit by herself on the floor (which helps A LOT when I need her to play by herself for a bit), she can crawl around on all fours, she can talk in mini-sentences, she knows her colors, sings her ABCs and even knows her left from her right! I know some adults that can't even get that down! In the last few months she has really gone from being a little baby to being a little toddler (yep, she's still on the small side, but I'll get to that later).

In late-Aug/early-Sept we had to say good-bye to some therapists that had been with Charlotte for quite awhile. We lost Jen, her speech therapist at Child's Voice, and Michelle, her physical therapist since March '07. We were sad to see them go, but they're going on to new chapters in their lives and we wish them well. As the saying goes - when one door closes, another one opens - and that was true in this case. We have been very lucky to find Charlotte's new individual PT, Laura. Laura is not afraid to challenge Charlotte and push her just that little bit more. I really think that having Laura's fresh, new perspective on Charlotte's abilities and potential is a huge part of the recipe to Char's recent successes. Oh, we also lost Char's pool PT therapist, but that was due to the pool therapy building burning down. A little ironic, I know, but thankfully no one was hurt. There's not a lot of places around here that have pools warm enough to do PT, but some new friends we have made are building a new house nearby and they're putting in their own therapy pool for their son, so fingers-crossed that we get invited over for some playdates!


Char also gained a new teacher at Child's Voice, Miss Brandi. In Sept. Char joined the toddler group at Child's Voice, which meets 2 mornings a week for 3.5 hrs of intensive speech therapy and auditory training. There are 3 other toddlers in her class and she is doing awesome! I can already tell that she's saying certain sounds much clearer and her vocabulary is increasing exponentially. She's even made friends with the other kids in class - especially Jeffrey. As soon as we get to school she says, "Where's Jeffrey?" She's already becoming a little flirt. That's my girl!

We decided that the Center for Independence, where Char went to Summer Camp this past summer, was such a great program that we enrolled her for their school year program as well. So, two mornings a week (alternating with Child's Voice) Char goes to the Center for 2.5 hrs of PT, OT and DT in a classroom with 4 other little girls with CP. I really like the fact that she gets the experience of being around kids that are like her at the Center, but she also gets to be around "normal" kids at Child's Voice. Yes, the kids at Child's Voice have hearing impairments, but they can all walk, run, climb, etc. I think that balance we have created for her is going to benefit her and the other kids in the end.


Now, about that thing called eating .... with the help of a new speech therapist at Easter Seals we have gained a minute bit of ground in that area. Char can now chew VERY SMALL bits of graham crackers or other easily-dissolvable foods, as long as the food is placed directly on her back teeth. I think this is the part that people have a hard time understanding. And to be honest, we have a hard time grasping and dealing with it ourselves. She still mainly eats purees, she's still on the special, super-expensive casein and soy-free formula, and she still gags a lot of the time. But this new speech therapist is taking a different approach than what we've tried in the past and we're going back to the basics - breathing. Through massage therapy and PT work we're all (and by all, I mean ever single therapist she has in on board with this focus) we're working to expand and strengthen her rib cage to allow her to breathe properly. The thought is that if you can't breathe, how are you going to be able to do anything else, including eating. And, thankfully, I've already seen changes. A few weeks ago Charlotte's ribs had no spaces between them and she took very shallow breaths. Feel your own ribs - you have spaces (muscles) in between each rib. Now, imagine that there's no muscles there and your ribs are stacked on top of each other. It would be pretty hard to breathe, right? Well, a few weeks later I can clearly see that Char's rib cage is expanding and she's taking deeper breaths, which means she's taking on more O2 and her trunk is stonger, which means she can do EVERYTHING better. As soon as we feel the rib cage is where it should be we're going to start focusing on teaching her to chew. I always thought that chewing just came naturally, but that's not so. I'm very interested to see how THAT goes!

So, in some respects, our lives over the past few months have revolved around taking Charlotte to and from therapy sessions. I'm my own version of a "soccer mom". Four mornings a week Char is at "school", then we come home, have lunch, nap and then we have 1 or 2 individual sessions in the afternoon. Fridays are Charlotte's day off. Absolutely no therapy on Fridays. I think it keeps us both sane and it gives her time to goof off and just be a kid.


Actually, our lives haven't been all therapy. In Sept. Brian and I took part in the Great Urban Race. It's just like the Amazing Race, but on a smaller scale. And for those of you who don't know what the Amazing Race is - it's a scavenger hunt where teams of two compete to be the fastest to solve clues and perform certain tasks. It was one of the best experiences of my life! I have been wanting to take part in the Amazing Race since it started and this may well have been the closest I'm going to get. There were about 200 teams that started and we were given a list of 12 clues. We were allowed to skip 1 of the clues, but if you skipped more than 1 then you were a given a 30 minute penalty when you reached the finish line. For example, one of the clues was that there were 2 guys dressed up as the Blues Brothers walking around a four-square block area in downtown Chicago and you had to find them and get someone to take your picture with them. Most of the tasks involved taking a picture as proof, but there were a couple occasions where we had to find a physical item, like a sparkler. That damn sparkler proved to be our downfall. Unbeknowst to us, the city of Chicago banned the sale of sparklers a few weeks before the race and we wasted time trying to find one, never did find it and then had to take a 30 minute penalty cuz we didn't have one. Oh, we will vindicate the name of Team Hellyer next year and we're determined to be in the top 25 (we came in around 150, ouch)! I'll let you y'all know when they've picked the date for next year and hopefully we can recruit some more people to race against!

In Sept. I also helped organize the 1st annual Blanchan Ave. Block Party! And wouldn't you know it, after a very dry summer we had a monsoon that weekend. No bouncy castle, no firetrucks, and no Officer McHottie with his don't do drugs or crap like that for the kids (I put in a special request for him). But we put forth a valiant group effort and gathered in a neighbor's garage for great food and even better sangria. We never had block parties on my block growing up and I was so excited about it, so next year the bouncy castle is on me!

In Oct. Charlotte went to stay with Yia-Yia and Papa and had her 1st weekend away from mom and dad. Or should I say, mom and dad had their 1st weekend away from Charlotte. So, what did we do with all that free time? For some god-awful reason we were up at 7am, so I cleaned the house and and Brian winterized the outside. We also managed to fit in a nice sushi dinner, a movie and my 15-year high school reunion. I think we all felt a little refreshed after that weekend and luckily Yia-Yia and Papa have offered their services again in the future. Next time - Peru.

I'd like to take this opportunity say welcome to baby Samantha, my friends Mel and Sean's daughter, who was born in August, and baby Kennedy, my friends Chris and Ed's daughter, who was born in September. I get a lot of joy watching Charlotte get all excited about seeing the "BABY!!!!!". What she doesn't know is that in a few months these kids are going to weigh more than she does. I guess some of us are just destined to be petite.


October also brought Charlotte's 2nd birthday! Up until then I could always just tell people that Charlotte was 1 when they asked, but now when I tell people she's 2 they give me a weird look. She's still pretty small, and she just broke the 20 pound mark. Basically she's the average size of an 11-month old. It's always funny to see the looks on people's faces when we're in a store and they start coo-ing at her like she's a baby and then she talks to them. I've had a couple people say, " Your baby can talk?!" "She's 2". Blank stare. But back to the birthday. Char got lots of presents and had a nice evening with her parents and grandparents. One of her highlights was getting her first baby-doll. Truth be told, I'm looking forward to the parties when all the little girlfriends come. I'm all about the themes and the games.

I am truly grateful that I took Charlotte down to Florida to meet my grandmother in August. Almost 2 weeks after my grandmother's 90th birthday in Oct. she passed away. My grandmother was a huge role model in my life and taught me how to be a stong, independent woman. Something that I strive to pass along to my daughter. Gram never wanted to be in a nursing home and once she was there it seemed that she decided it was time to go. But I have tons of memories to pass on to Charlotte about time I spent with my Gram - like the time she let me have sugar cookies and cheese slices for breakfast, or the time we stayed up late debating topics like abortion and euthanasia (and crazy enough, she changed my mind), or the Christmas I went down to visit her and we went through all her old photos together. When I was younger I was her granddaughter, but as I got older my Gram treated me like a friend. I will miss her.

I'm almost done with the fall semester. I finished all the coursework for my computer class last week and I'm pretty sure I ended up with a 99% in the class. There's a couple more weeks left to my Anatomy class and I CAN'T WAIT until it's over. I've loved learning anatomy, and I've loved the cadaver section of class, especially dissecting (believe me, I'm more surprised than you are), but my teacher doesn't teach and she keeps changing the way she tests us, grades us, everything. In some respects I would have been better off taking this class online cuz I've ended up teaching everything to myself. Everyone in my class is frustrated and worried about their grades, and unfortunately this is one of the classes that nursing schools really look at, so I really have to get an A. I just have to make it through 2 more tests, finish my dissection and then it's over.

I can't forget a quick "in Mandi's mind" politics update. As you all know I was definitely a Hillary fan, but when she lost the Democratic nomination I whole-heartedly put my support behind Obama. And as I watched the election results on Nov. 4th, while on the phone with my good friend Kari in New York, I had never felt so proud to be an American. Yeah, it's cheesy, but I really feel that now when I tell my special-needs daughter that she can do whatever she wants to do, I feel that I can really mean it. We all have so far to go in respect of tolerance and equal-opportunity, but now there's that much more of a sense of knowing that if you work hard enough you CAN achieve your dreams. And my dream is to get a full 8 hours of sleep.

Happy Thanksgiving to everyone!

Miles to go in 2008: 20

Days in Office Bush : 55

Someone To Look Up To: ABC Person of the Week

Check out this story of an amazing man who followed his dreams and overcame the odds. Makes me realize how truly insignificant my "problems" are. And even though Char teaches me every day how lucky and blessed I am, I still take so much for granted. If we could all be half as motivated as D.J. Gregory imagine what we could accomplish.......

http://abcnews.go.com/WN/PersonOfWeek/story?id=6254778&page=1

Charlotte's First Set of Wheels

We had every intention of encouraging Charlotte to save her own money to purchase her first car, but seeing as she's been so good lately, and we're still celebrating the fact that she's sitting up by herself, we decided to fork over the 5 bucks and buy her first used car. So, there you have it, Charlotte, mommy and daddy bought you your first car. You want anymore and you're on your own, kid!

Charlotte the Globe-Trotter ... Well, Maybe Continent-Trotter

Are my posts too few and far between? Well it just may get worse!! I may have finally stretched myself too thin. My Anatomy & Physiology class is SO MUCH MORE than I thought it would be. True, it's all memorization, but finding the time to commit all of that info to memory is proving to be very difficult. Thank god some of Charlotte's therapies are more peer-oriented now and I don't have to be in the room. That gives me a couple mornings a week to cram. So, I apologize now if you don't hear from me in awhile. But first let me tell you all about the end of our summer!

Charlotte got to do some major travelling in August. First we all spent a week in Wisconsin with tons of friends and were able to partake in some much needed R&R (especially Brian, I think he really needed some lazy beach-and-beer time). During our stay Charlotte amazed us with a new 1st .... she pushed herself up to a sitting position all by herself!! Granted it was followed by an immediate fall back and a head-slam to the floor, BUT she pulled herself together and did it AGAIN!! I was such a proud mama.

Basically our entire week consisted of eating, sleeping, golfing, hanging out on the beach, drinking beer and wine, and then some more sleeping. I've been going up to White Lake Beach Resort in Montello, Wisc. with my friend Patty's family since I was 13, and we've made lots of life-long friendships with the other families that go during the same week. It's so cool to see that now we've all grown up and we're bringing our own families up there. It may not be the most posh place to stay, but it's got lots of charm and really good happy-hour specials. Here are some great pics taken by my friend Linda.

Did you see the beer can in each pic? It's just like Where's Waldo.

Charlotte's next trip took her down to Tampa Bay, Florida, for a visit with my Grandma Teeling (my father's mother). My grandmother recently moved into an assisted living facility and I thought it was a good time for Charlotte and I to take a trip down to see her and for the two of them to meet. I wasn't about to drive down to Florida with a toddler, so Charlotte got to take her first flight!! Thank god grandpa and yia-yia (my mom) came with us and helped keep Charlotte occupied on the flight, cuz I would have probably gone crazy trying to take care of all of the logistics by myself. I can't believe how good she was. She was actually a better companion on the plane than some adults I've sat next to. I'm happy to report that both Charlotte and grandpa were very well behaved and took naps on both legs of the trip.

We only spent one night in Tampa, but during that time we were able to spend lots of time with my grandma, see where's she's living, and even frequent her favorite restaurant. And, of course, all the ladies at my grandma's new home were doting over Charlotte. And now that I know that Charlotte is better at flying then I am (I'm one of those people that will scream that the plane is going down) then we just may take another trip down there soon. I'd like to place a shout out to my Aunt Joan, who hauled us to and from the airport and took great care of us while we were down there. It was great to visit with her as well and we really appreciated all of her hospitality!

There's more to tell .... saying good-bye to some therapists, meeting some new ones, therapy buildings burning down, Brian and I run the Great Urban Race all around Chicago .... but, I gotta go to bed. I'll write more soon. I swear.

Miles to go in 2008: 122.5

Days in Office for Bush: 124

I gotta go with ..... Obama for Prez! Don't get me started on Sarah Palin!

Does This Tub Make My Butt Look Big?

The other day Brian found Charlotte's first bathtub that we used back when she was in the hospital and a few months after she first came home (See 2/16/07 post for old bathtub pic).

Now Char has graduated to the bigger Duck tub. Not too long, and I think she'll be ready to take the full-on-big-bath-plunge!! I wonder if Ozzie is willing to take that plunge with her?

Cheap Laughs

Summertime in Chi-town

Ok, so maybe three months is too long to go without posting on the blog. I thought I had outgrown procrastination, but I guess I was wrong. There's a bunch of stuff to catch up on .... so let's get to it!!

First of all, a huge thank you to everyone who sponsored Team Hellyer in the March of Dimes March for Babies. Even though we all didn't get to walk (I'll get to that shortly), we raised over $1200!! That was really exciting for me and it was fantastic to see how many people out there were supporting us. Unfortunately, Charlotte was unable to attend her first fundraising walk. That weekend she came down with the stomach flu and spent the night before the walk in the ER because we were a bit worried that she was dehydrated. She was fine in the end, but it was an easy decision to have her stay at home and skip out on the walk. Brian, being the martyr that he is, graciously offered to stay home with Charlotte and let me walk the 6.1 miles (convenient timing, eh? Makes you wonder if they didn't plan this whole thing out). But lucky for me Patty and Olive came along and we met up with our friends Anne, Bob and Tommy. We all had a good time and we're looking forward to next year's walk. Although, I gotta say, next year I'm getting to the front of the pack. I can't get over how SLOW people walk. I know it's not a race, but there were points where I didn't know if we were going to be finished that same day or not.

May brought a nice Mother's Day for our little clan (see pic above of the women-folk in the family). It also meant the end of my Organic Chem and Human Growth and Dev. classes, which I both aced, by the way! They were two classes that I enjoyed very much, but since I decided to take Microbiology during summer school I didn't get much of a break in between semesters. Microbiology took up most of my June, but now it's OVER and yep, you guessed it, I got an A! Wooohoooo! For the month of July I've been school-free, but in a few weeks I start Anatomy and Physiology I and Intro to Computers (nope, I can't test out of it - I guess running a software helpdesk doesn't count for computer knowledge). A&P scares me a bit - lots of memorization and we actually have to work on cadavers. I just might need a little liquid courage before class the first time we cut into one. Uggghhh!

Charlotte finally got her AFO's May and the difference in her standing and walking (supported, of course) is amazing. So much that we now refer to them as her Super Shoes. It's almost as if she's a little super-hero when she has them on. And she doesn't seem to mind them at all. Char also started her summer camp classes at the Center for Independence. There were 7 kids in her class, all with varying degrees of cp, but they all had a blast (well, maybe not the youngest one who cried the whole 5 wks, but she'll catch on eventually). The summer camp met 3 mornings a week for 2 hours each time and no matter what every morning all of the kids would walk into the classroom with either their walkers or gait trainers and they would leave the classroom walking. I love the symbolism behind that. It's great that they put such a strong focus on the goal of getting these kids to walk independently. Actually, the whole program is based on teaching kids with cp to do things on their own. Char got to experience and learn so many new things and they even taught her how to take off her own shoes and Super Shoes. This new found skill can be a bit annoying when she takes them off in the back seat of the car all the time, but it's exciting nonetheless that she can do it by herself. Summer camp ended last week with a field trip to the Shedd Aquarium downtown, complete with front row seats to the dolphin show (there definitely are some perks out there for these kids). Classes will start up again in early September and then she'll be going two mornings a week, alternating with two mornings a week at Child's Voice. I feel like I'm going to have a kindergartner on my hands here, but she's not even 2 yet!!

Feeding time hasn't really gotten much better as of late. Char's still only taking puréed foods, but I got her to put a couple Rice Krispies (Rice Bubbles) in her mouth yesterday, so maybe we're nearing a turning point. I'm currently trying to get her into a "feeding clinic" where speech therapists, nutritionists, OTs and GI doctors work together with kids in a group environment. I'm hoping that the peer pressure of seeing other kids eating might help her a bit. However, I still run into the problem that she's NEVER HUNGRY. That's so hard for me to wrap my head around. I think about eating food even after I've just finished stuffing my face at an all-you-can-eat salad bar. Charlotte is still gaining weight, albeit very slowly. She's up to a whole 19 pounds now! The good part is that she doesn't grow out of her clothes too fast and she gets good use out of them.

So, maybe eating is not her strong point, but that kid is hitting milestones like crazy! Charlotte is now a professional army crawler and can get all over the house, much to the dismay of Bart and Amy. It's wonderful to see her finally getting the chance to explore things on her own. From what I've gathered from other parents, children with c.p. tend to have delayed speech due to the low muscle tone in their faces, trunks, etc. In fact, at summer camp I didn't hear any of the other kids say anything. But not our Char. She's talking up a storm and just yesterday she said her first two-word sentence, "Bart outside". When I heard my little girl say that I got a little verklempt and said to myself, "She's gonna be just fine"!!!

Now with all that crawling comes the occasional bump and bruise. Here's a pic of Charlotte's first boo-boo (under her nose), a result of a small yoga accident. Don't let those yoga instructors fool you into thinking it's perfectly safe (just kidding)!

Luckily our lives haven't been all therapy and school lately. Over Memorial Day weekend (late-May for those who don't reside in the U.S.) we drove out to Syracuse, NY to see our friends Kari, Teddy and Isabella. Yes, you read that correctly, we drove. We took the northern route through Canada on our way there and stopped at Niagara Falls for a quick peek. It was 6 a.m. when we got there and the only other people out were the joggers. It was Brian's first time seeing the Falls and we were both impressed with it's power. What we were not impressed with was the absolute insanity that is all the commercialism surrounding the Falls. And I literally mean SURROUNDING - on one side there's a Hard Rock Café, then there's a big resort with an indoor water park facing the Falls, and on the other side you've got plenty of casinos to choose from. Way to ruin one of the wonders of the world, Western Culture!! So, thank god, we were there super early and we were able to enjoy the experience without all of the chaos that probably erupts somewhere around 8 a.m. when the first bus arrives. Our visit with the Avramovs in Syracuse was fantastic - good food, good wine, good company, and Isabella and Char got along great. Unfortunately, Char and I came down with some nasty colds and we ended up having to leave early. We took the southern route back home through Pennsylvania, Ohio and Indiana. And while it was not quite as exciting as getting our passports stamped and venturing through international lands, I gotta say that Char was quite the trooper during the 14 hour drives there and back. If she cried once, then I don't even remember it. I think Brian and I complained more than she did. "Are we there yet??????" Kari, we'll definitely be back, but next time we're flying!

In June I got together with some of my gal pals from college for a long weekend of R&R in Lake Geneva, WI. Having that time away with no house to clean, no kid to watch after and no books to study was AWESOME!!! Thanks to Brian and Char for letting mommy have that time away. This was our group's 4th annual weekend getaway and each year we've gone somewhere different - Seattle, St. Louis, KC and now WI. I can't wait to see where we're going to go next year!

Around home we've been taking some trips to the zoo, hanging out in the pool and seeing some local parades. At the LaGrange Pet Parade we got to meet Hogan, a Great Dane who is just shy of being the world's tallest dog. He was sooooo sweet! Brian, can I have a Great Dane?

The answer is probably no ..... but Brian did let us get a kitten!!!! Meet, Ozzie, the newest member of our family. Ozzie was living in the neighbor's shed for a few days and after it was determined that he was either abandoned or lost we caught him and brought him over to our house of horrors. Within a week this cat managed to completely take over the place. He has absolutely no fear, the dogs stand at attention when he walks by, and Charlotte and Ozzie are now best buddies.

Brian has been keeping himself busy with his new motorcycle. A few months back he sold his motorcross bike and then just recently he bought a road bike. He finally got his motorcycle license yesterday, so I have a feeling that every spare moment Brian has will be spent on that bike. Which is fine by me - it gets good gas mileage and it keeps him out of the pubs.

I don't think I ever got around to addressing the results of the poll I had on my blog a few months back. I can't believe that "Mr. or Mrs." won as the best way for children to address adults?! I'm wishing I had a bit of demographics on the pollsters, cuz that just blows my mind away. After careful consideration I think I'm just going to have Charlotte address everyone as, "Hey, you!"

Miles left to run in 2008: 196.5

Days left in office for Bush: 181

Hillary for Veep!!!!!!

March Came In Like a Lion and Just Kept on Roaring!

Yes, it's been awhile. We've had quite a few wrenches thrown in our lives lately, so it's been a bit difficult for me to find the energy and sit down to type everything out. Plus, I wanted to give myself time to digest some things.

In my last post I mentioned that we were scheduled to see a physiatrist (remember? the physical medicine and rehabilitation specialist). We went to see her in mid-March and I'm still not 100% sure I understand what she does, but she (and her team of what seemed like at least a dozen med students, interns and residents) asked us every question you could possibly think of and watched Charlotte do a variety of movements and tasks. And yes, paper crumbling was again a desired skill. I hope that one's on my Chemistry final, cuz then I've got that one in the bag! Even though the doctor was impressed at how far Charlotte had come considering how premature she was she gave us the diagnosis that I was not expecting ... cerebral palsy (c.p. from here on out). I had had my suspicions, but I kept telling myself that we'd dodged that bullet. So, it turns out that Charlotte has c.p., which affects her legs, trunk and possibly her arm. We've been told that it's a mild case and that she has a very good prognosis. Eventually she should be able to walk unassisted and there's even a chance that she will "outgrow it". Now, when I say "outgrow" I don't mean go away, because c.p. doesn't ever go away. But she may be able to find ways to compensate for it where it doesn't have a huge impact on her day-to-day life.

For those who may not know much about c.p. (that included myself up until last month) it is basically brain damage that affects someone's ability to control movement and to maintain posture and balance. This is why it's been so difficult for Charlotte to sit upright on her own. She actually has the strength to do it, but there's a communication breakdown between her brain and her muscles. And similar to the autism spectrum the range of severity of c.p. is vast. Someone could actually have c.p. and never know it because they've just learned to compensate for whatever part of the brain has been affected, while another person might be in a wheel-chair for life. We'll probably never know exactly what was the actual cause of Charlotte's brain damage, but it was something that resulted from her prematurity. The damage occurs either in utero or at some point during or shortly after the birth, and it is quite common in premature babies, especially micro-preemies like Charlotte. There is SO MUCH information I could share with everyone, but I'll do it a little bit at a time. It makes my head spin, too. But if anyone wants to look a little further United Cerebral Palsy has a good overview.

Since the diagnosis I've been going through different emotions - sadness, denial, a little guilt - in some ways it's a bit like mourning. Perhaps mourning the loss of what I thought our life with Charlotte was going to be like. As selfish as it is, as soon as I had children I had a certain picture in my mind of what I thought the rest of our lives were going to be like. But life decided to teach me a lesson - my daughter is her own person and I can't expect her to fit inside the image I've created for her. She needs to do and be what she wants. I've definitely reached a point of acceptance with Charlotte's c.p., and now I'm back to focusing on raising a happy, stong, independent girl. The part I can't quite get over, though, is knowing that whatever it is she wants to do in life is going to be that much harder to achieve. And don't we all just want things to be easy for our kids? I've said it before and I'll say it again ... I'm a mom and I can't help but stress.

While the diagnosis has brought mixed emotions, as well as some clarity, it has also opened new doors for Charlotte. A couple of weeks ago we started pool therapy, which we will attend once a month. Brian and I are planning to take what we learn there and then apply those techniques at the local YMCA pool. Although, that therapy pool we went to was NICE!!! If I ever win the lottery, first thing I'm doing is putting one of those in my house.

It's also been a bit easier for us to order some equipment for Charlotte. Next week she's going to be fitted for some orthotics (AFOs) that will help her to stabilize while standing and to keep her fleet flat. We also got ourselves a pair of these cute little biker-type shorts (see pic below) that help keep her legs together when standing. I think they're hysterical on, but they seem to do the trick!

In July we are also going to start an intensive physical/occupational/developmental-therapy-all-rolled-into-one regiment at a local place called Center for Independence. This place offers group sessions where all of the children do their therapy together and they sing songs, stretch, work on different positions and even play with play-doh. We watched a session a few weeks ago and we were very impressed. We spoke to some parents and they had all gave us glowing reports. Basically, the program aims to create new neural pathways in the brain to facilitate control of movements through many repetitions of the same movement. Their main goal is to make sure that kids with physical disabilities can do as much independently as possible. I definitely think it's worth a try.

Brian went home to New Zealand for 10 days at the end of March. His grandfather passed away after battling cancer, but Brian was able to make it back for the funeral. While I'm sure he would have preferred to be home under different pretenses, he was finally able to meet his 8-month old niece, Abby, and fit in a much needed visit with family and friends. I can't wait until we can bring Charlotte over to meet everyone in NZ, but I'm definitely not looking forward to that flight! Ugh!

This coming Sunday Charlotte is going to partake in her first fundraiser walk for the March of Dimes. She thought it was fitting that her first walk help raise money to educate about and prevent prematurity. We'd like to thank everyone who has already donated to the cause and helped us reach our goal!! If anyone else would like to make a donation you can do so through our Team Hellyer March for Babies site. We'll let you know how Charlotte does. I don't know if she's going to be able to army crawl all 6 miles. I'll keep the stroller on stand-by.

Let me brag for moment and tell you about all the cool things that Charlotte does ..... she says lots of animal sounds, she can hi to Bart, Amy, her dad, and her ya-ya (grandma). I'm hoping mama is just around the corner. Maybe for Mother's Day?? Hint, hint! She's becoming a pro at army crawling and is even starting to push herself up into the crawling position. She know where most of her body-parts are and she recently learned to drink from a straw, blow kisses and she gives fantastic hugs. Isn't she awesome?! Who ever thought this kind of stuff would excite me??

Now, I'm estatic about the fact that Charlotte has finally broken the 18-pound mark, but check out this picture. This is Tommy, our friends Annie and Bob's son. Guess how old he is? 6 months!! He's almost bigger than Charlotte! Start eating more, kid!

My chemistry class is actually coming along pretty well. I had an A at midterm ... YES, an A in ORGANIC CHEMISTRY! And I don't want anyone saying under their breath, "Oh, it's just a community college," ... It's hard, man! And, unless I really mess something up over the next few weeks, I just might get an A overall. At the end of May I'm going to start a 5-week intensive Microbiology course that meets M-F from 6-9pm. I may just regret that choice.

Sorry if this post was a bit on the serious side, but that's just the way it goes sometimes. I'll post again soon, cuz I still need to address the poll results and figure out who all the old people are reading my blog .... how could "Mr. and Mrs." win?

Miles left to run for 2008: 328.5

Days left in office for Bush: 370

And Hillary's still in the running! Yeah, Baby!!

Happy Day Before Leap Day!

First of all, many thanks to everyone who offered up their food processor(s) for the cause! I was very lucky that my friend Kathy didn't need her mini-processor, so now Charlotte is enjoying the wonderful world of purees! Thanks, Kathy! Or should I say "Miss Kathy"?

Which brings me to what I think is an interesting question .... given the way society is today, what should we expect from our children when they address other adults? And I'm mainly talking about family friends or other caretakers here, not the elderly couple down the block. Obviously, Mr. and Mrs. We Remember When the Titanic Went Down deserve to be called by their last name. I feel like I'm having a little dilemma here. Let's take my food processor friend, Kathy, for example (Kathy has many more wonderful qualities, but I'm trying to simplify here). I feel like having Charlotte call her "Mrs. Carr" is too formal, but "Kathy" seems disrespectful to the age difference between them. But I feel kinda geeky when I say "Say hello to Miss Kathy". I don't know, something about it just kind of wigs me out. And I'm torn between the fact that I understand the world is different now then when I grew up, yet I don't want to lose the concept of respect for elders that I grew up with. I'm curious what you folks out there think. Please feel free to vote over to the right as to how you think kids should address adults. And if your answer isn't there then I welcome comments, too!

The past month has been kind of boring. We've had lots of snow in the midwest, and in fact tonight we're scheduled to have our 35th measurable snow of the season. I love snow, so it hasn't bothered me one bit. We pulled Charlotte around the backyard a couple times in a sled, but since she's still not sitting up so well it looked more like a rescue mission. I think she'll enjoy it much more next year.

Last week we had our first Early Intervention annual meeting where all of Charlotte's therapists get together and discuss her progress and what they want to focus on during the next year. She had glowing reports from everyone. In the weeks prior to the mtg, each therapist did an official evaluation to see where her skills are in comparison to other children her age. And, even to my surprise, she tested pretty much on track for her age bracket for everything except gross motor skills (crawling, walking, etc.). Now, did you know that taking a piece of paper and crumbling it up is a skill? Apparently so! Just a little something to add to your resume. No, seriously, she was doing things during the evaluations that I didn't even know she could do. For example, they took a spoon and pretended like they were stirring something in a bowl, then handed her to spoon to see what she would do. I thought she was going to eat it, or stick it in her ear, but she pretended like she was stirring! We have all totally underestimated this girl! So, the gist here is that she's got it going on up in her noggin, but the physical side is holding her back a bit at the moment. Because of that we decided to increase her PT to twice a week to challenge her a bit more and we're scheduled to see a physiatrist in a few weeks. A physiatrist is someone who specializes in physical medicine and rehabilitation. I knew you were going to ask that. I'll let y'all know what the verdict is after that visit.

To continue my Charlotte update, I'm going back to the food processor for a second. Another thing that's keeping Charlotte behind a bit is her eating. She definitely has some oral sensory issues when it comes to food with texture. Hence the food processor. But she also doesn't seem to be interested in food very much. This has become the issue that keeps me up at night. I can understand that she'll crawl and walk when she's ready, or that eventually the time will come when she'll say "mama" instead of "dada" and realise that at that point I will make sure that all of her dreams come true, but I'm really having a hard time with her not eating and not gaining weight. We do have a wonderful nutritionist and speech-language therapist helping us out with her feeding issues, but I just can't help but focus on the fact that if she's not getting the nutrition she needs then it's going to be hard for everything else to fall in line. But I guess that's what moms do ... we worry. She has been doing better over the past few weeks, and with some oral stimulation and some other methods we have been able to increase her food intake, just not the consistency. Fingers crossed that at the next weigh-in she's gained some weight!

But even stuff like feeding problems don't come without a little comic relief. Check out this chair that her PT brought over for Charlotte to use while feeding! Now, anyone who is involved in rehabilitation will probably have seen something like this, but for simple folk like us, it looks like our little girl is strapped to an electric chair! Luckily, I was able to find something else at Babies R Us that not only keeps her in an upright position, but is more comfortable. I just couldn't take her seriously in that thing!

In late-January I started my new classes for the spring semester - Organic Chemistry and Human Growth and Development. Believe it or not, I am actually enjoying Organic Chemistry. So far it's been kind of fun. I remember in college everyone would groan whenever anyone mentioned that class, but so far I haven't been able to determine why. Maybe that's next chapter. Human Growth and Development has also proven to be very informative, but it's a bit different because this is my first online class. Yes, it's easier but there's still work that has to be done in a certain timeframe. Every week I have to read the text, answer discussion questions and take an online test. The hardest thing to get used to is the fact that when you're "discussing" something online with your peers you have to make sure that what you're saying is valid and that you can back it up. It's not the same as being in a classroom where the chances are no one is listening or no one cares if you speak up. Here, all my responses are written in stone as soon as I hit "SEND" and anyone can call me out on it.

Pretty soon I'm going to have to start looking into what nursing program(s) I want to apply to. I'm just starting to get into taking these classes, so I'm kind of procratinating getting out of my new-found comfort zone and looking at new different schools.

That's it for us. I'm thinking the next post should be a bit more interesting. Hopefully we will have been able to get outside and do some CRAZY stuff. PLUS, the little Peanut has recently started trying to pull herself forward, so hopefully soon I'll have some video of Charlotte crawling around the house driving me nuts! I welcome the insanity! :-)

Miles Left To Run for 2008: 421.5

Days Left In Office For Bush: 327

Go .... Hillary???