Visit with the Big Man

Holland asked Santa for Jessie and Woody from Toy Story 3. Eden asked for the Magic Rise Oven to use in her pink cupcake making factory. I bet they will get what they wish for. They have been really good girls this year!

And the Winner Is.....

Thank you all so much for sharing your holiday traditions. I read them to the girls and they really enjoyed hearing about how different families celebrate:-)

So crazy that the very first commenter was the winner! Congratulations Stacy! I hope you enjoy your jewelry as much as I do. Lisa will be in contact with you with details on how to redeem your gift certificate.

And to everyone else...don't forget that you can still use the code preemie15 to get 15% of your jewelry order at Lisa Leonard Designs.

Here is a photo of the finished product (our tree), as well as some of Holland and Eden with their new ornaments from Bronner's (another one of our favorite traditions).

Holiday Spirit and a Giveaway!!

Holland and Eden helped me put up our Christmas tree tonight. Holland was especially interested and helpful this year. She is usually the kid who loses interest in a project pretty quickly, so I was pleasantly surprised that she stuck with me until the last ornament was unwrapped and on the tree. It was very sweet. I must admit however, that it was a bit of a trial for me. I am kinda what you might call...hmmm...a perfectionist?..about the tree. I like everything a certain way and I generally methodically put it up according to my own agenda. John gave up on helping me a long time ago because...I guess, maybe...I can be a little controlling when it comes to the tree. So it was tough for me to relinquish my control and just enjoy letting the girls help. But I did it! I let them help and I didn't freak out. I might move one or two (or several) ornaments (that ended up piled on two branches of the tree) while they are asleep, but I am pretty happy with myself for not getting all stressed and anxious about it! I still have a couple of finishing touches to put on the tree this weekend, but overall I am quite relieved to have it mostly done with. Now for the outside lights...

The girls were pretty healthy over the Thanksgiving holiday and we had a nice weekend spending time with both sides of the family. We both feel very lucky to have such lovely families who adore our kids so much and shower them with love. Holland and Eden enjoy nothing more than spending time with their cousins - they like their aunts and uncles too, but nothing compares to cousins! Last Friday we spent the day at my parents' house doing our annual tradition of stringing popcorn and cranberries for our Christmas trees.

I have had a little bit of trouble this year getting into the holiday spirit. I have that familiar feeling of being overwhelmed by life's usual demands, then pile on all of the extras like family parties, a dish to pass, putting up the tree, decorating the house, and SHOPPING (which I haven't even begun), and it can get to be a little much. But, now the tree is up and I am headed to Bronners on Sunday with my sisters for our annual trip, which will also include dinner at Zhender's and a couple of stops at the outlet mall on our way home. I am sure to be feeling the Holiday Spirit in full force any day now.

I did get an early Christmas gift that has me feeling all warm and fuzzy. I love, love, love my new daisy chain bracelet from Lisa Leonard! When I saw this bracelet on her blog I knew I had to have it. Daisies are my very favorite, and in a way I consider them my "signature" flower. As a bonus, the bracelet is personalized with Holland and Eden's names and I have been wearing it pretty much every day since I got it. Lisa makes such beautiful jewelry. I have a couple of necklaces that I also wear often and I continue to get compliments on them ALL the time. With the holidays coming up, it's the perfect time to get yourself (or pass along a hint to your special someone) a new piece of Lisa's jewelry. She has graciously offered to give my blog readers 15% off their entire order if they use the code preemie15. In addition to that one of my lucky blog readers can win a $50 gift certificate from Lisa Leonard! For details on how to enter your name in the drawing...read on.

I really love, and have always loved, holiday traditions...even when it takes me some time to get in the mood. For me, the holidays are even sweeter now that I have a couple of little munchkins to share them with. I can snap myself out of the funkiest of moods just by thinking about life from their perspective. They continually teach me about appreciating the small things in life and they help me to enjoy the magic and beauty of every season.

To enter your name in a drawing for a $50 gift certificate to Lisa Leonard Designs, please leave a comment on this post. To have your name entered twice, tell me about your favorite holiday tradition, or if you aren't quite feeling the holiday spirit, tell me what lessons the little people in your life teach you. Be sure to leave your name and an email address where you can be reached if you win! I will close the comments at the end of the day on Wednesday and all names will be entered into a hat (or maybe a bowl). I will let Holland and/or Eden draw one name and will announce the winner by next Friday, Dec 10th! That will give the winner time to place an order before xmas:-)

Fabulous...and Not

We had a really fabulous weekend. On Friday night we modeled in our Sixth Annual Fashionable Growth Fashion Show, helping to raise money for the NICU where Holland and Eden were born. We got to wear some really awesome clothes and spend time with some really great people, all while supporting a cause that is dear to our hearts.

On Saturday we spent some QT with one of our NICU friend's family. Their son also has Cerebral Palsy, and we had the great fortune of running into them at the CLC this past summer and getting to know them a little bit better. It really is amazing to be able to connect with other CP families. There's just that little extra immediate depth to the relationship because they are the ones who truly "get it."

Then, on Sunday we took the girls to the circus for the first time! We all really enjoyed the show - including the dogs in tutus, the high wire act, the flying trapeze, and the stunt people shot out of cannons. Very cool. I also personally enjoyed my $12 cotton candy. Except for the fact that it cost $12. Just before the show started we ran into one of our old school friends, there with his family, and went out to dinner with them after the show. Bonus!

It was a fabulous weekend. But today...not so much.

John and Eden were (are) mildly sick with some kind of stuffy nose thing for a few days last week. It started for Holland sometime over the weekend, but wasn't much of a concern until today. Today the wheezing started like we haven't heard for a looooong time (like October last year). I noticed it a little bit after school, but it didn't start to get really bad until dinner and progressed pretty quickly. I got ahold of the doctor and started her on some oral steroid before bed. She also had 2 albuterol treatments fairly close together. At bedtime she was overly tired and hopped up on albuterol, which always makes everything worse, and was pretty much sounding like a train wreck. We decided to put her to bed and see what happened (because sometimes once she relaxes and falls asleep her breathing gets better). After she was down I started mentally preparing for a trip to the ER, thinking it was pretty much inevitable. But I just went up and checked on her and she is sounding much better and breathing a lot more quietly and evenly. So for now we're on the fence. I'll probably keep checking her through the night and try to let her get a good night's rest, then take her to her pediatrician tomorrow. I just really, really, REALLY hope that we can make it till tomorrow.

The hospital does not sound fabulous. At all.

Conversation at Bedtime

John and I were chatting with the girls tonight before bed, and the conversation went something like this...

Me:"You guys are so great, I am so lucky to have two such sweet girls. I love you to pieces!"
Eden: "Yeah, you thought you were only going to have one baby and you got two!"
Me: "That's right, surprise!"
Eden: "Well, you could have had three...what's that called when you have three?"
Me: "It's called triplets."
Holland: "Yeah, I say that a lot. I wish you had triplets because then I would have someone to play with when Eden won't play with me."
Eden: "Yeah, we should have two sisters and a brother!"
Me: (Chuckling) "Yeah, that would have been GREAT..." (With sincerity) "But we were lucky to have just twins, because not everybody gets a twin sister to play with at all."
Eden: "Well, I think you should have two sisters and a brother BABIES!" (implying that I should have triplets NOW.) Thinks for a minute..." But then you would have to get married again."
Me: (Laughing) "You are right about that! I would have to get married again if I wanted to have triplets!"
Daddy: "But would you want Mom to get married again?"
Eden: (adamantly) "NO!"
Daddy: "Why not?"
Eden: (looking at me) "Because you fell in love with HIM."
Me: "You are right. I am in love with him."
Both girls smile happily.
Me: "Why do you think I fell in love with him?"
Eden: "Because he is really cute."
Holland: "Because he is HOT."

ROFL. These girls of mine. They really make me laugh.


(Pics are from our trip to Michigan's Adventure on the girls' birthday. Just came across them again and think they are cute:))

Fancy Nancy and Pinkalicious!

I think Papa might have eaten too many pink cupcakes too!


Ready to Trick-or-Treat!



Cousins Rock!

We had a FANTASTIC Halloween!

Everyone stayed healthy throughout the weekend festivities, and we had no major breakdowns or meltdowns (even though we pushed our luck with one party after another). I am pretty excited to report that Holland and Eden have even been eating quite a bit of their candy this year.

As I was tucking the girls in on Halloween night, Holland said to me, "Mom, this was my best day ever!" Sigh.

Mission accomplished.

Picture Perfect Fall

Holland is a riot to search for a pumpkin with. She is always looking for Spookley (the Square Pumpkin, in case you were wondering). She wanted one that was as square as we could find...a certain size too...and kept changing her mind over and over. She did eventually find one that fit the bill.



Eden still has the same reaction to these goats that she did the very first time we visited this orchard:-) Love it!


And this is my prized pumpkin. We saved seeds from one of our pumpkins last year and planted them in our garden this spring. It was our first time venturing to grow pumpkins. We got three great ones, but I love this one particularly...warts and all!

For Sale, Fall Fun, and Fashion!

Our house is for sale. It has been on the market for almost three months now, and we have had exactly two people come look at it. We're in that spot (familiar to many) where our house is not worth what we paid for it, and maybe not even what we owe on it, and it's difficult to compete with the short-sales and foreclosures in our area. So I am really thinking it's not going to happen any time soon.

We are lucky in that we can easily afford to keep paying our mortgage, and we are pretty comfortable in our house. We like the location, neighborhood, and schools, and would probably not even consider selling at this point except that we really want to get into a ranch style home that will be more accessible for Eden. Our current home is a colonial and all of the bedrooms are upstairs. So, not only is Eden not able to get to her room on her own, but also ALL of the toys in the house are on the main level, and it's difficult to keep things picked up! I would love, love, love to be able to put the girls' toys away in their bedrooms and still have them able to get to them. There will also be an issue in the future, when Eden is bigger and heavier, with picking her up and carrying her up and down the stairs.

Another issue is school and friends. The girls are in kindergarten now, and I had kinda hoped to keep them in the same school for the majority of their schooling. John and I both went to the same elementary school, middle and high school for our school careers and we are still friends with a lot of the same people that we grew up with. Kids in the early grades tend to be very accepting of differences, and I think it will be nice for Holland and Eden to stay with the same kids as they grow up. This is another reason I want to make the move sooner rather than later.

I've looked at lots and lots of houses, mostly online. There have been a couple that I have really had my eye on that sold, so I am trying not to look much anymore. I don't want to get my heart set on anything seeing as how the chances of us getting out of this house are pretty slim.

In the meantime we are staying put, and enjoying some fall fun. We've done a trip to the apple orchard, and are enjoying our warm apple cider, cinnamon donuts, and pumpkin spice lattes (well, that one is just me). I've put up a few decorations and we have picked out the girls' Halloween costumes. They are going to be Pinkalicious and Fancy Nancy. Should be super cute! They get to dress up for a school party and parade this year (something their preschool did not do) which is sure to be loads of fun. We are still anxiously awaiting the leaves actually falling off of the trees so we can rake and jump in our leaf piles, but alas this has not yet happened. Holland really thought it would happen on the first day of fall and has expressed her disappointment regularly since!

In health related news, both girls have had two fairly mild colds since school started and recovered without incident. That means we have been one year hospital-free with Holland, and a year and a half with Eden!! Yay! I am hopeful that they have possibly outgrown the prematurity-related-crappy-lungs phase of their lives. Only time will tell.

We haven't outgrown the prematurity-related we-hate-food or the gain-some-weight-already phases, but we continue to plug along with some good days and some bad days. Holland is currently 42 inches tall, and about 32 pounds. Eden is 41 inches tall and hits 32 pounds on a good day (more consistently about 31.5). We are definitely not getting anywhere quickly these days.

The girls got new lenses in their glasses in August. Holland's prescription is very similar to in past (R -4.75, L -10.5, with astigmatism in both), but Eden's eyes got waaaaay worse:-( Her first pair of glasses (about a year ago) were only about a -2 in each eye and she had very little interest in wearing them, claiming she didn't need them and they hurt her nose. Around April of this year her new eye doc confirmed that she wasn't seeing much better with or without them (about 20/40) so said she didn't have to wear them if she didn't want to. At her 6 month appointment we find out that she is much more nearsighted than she was before (R -5.25, L -6.75, with astigmatism in both) and should definitely be wearing glasses. Since getting the new glasses she wears them every day without complaint and even asks for them in the morning. So, she clearly needs them.

Gosh, I don't know what else I might have left out. Holland's allergies have been horrible this year in the spring and early fall so we have been playing around with her allergy meds a little bit...not sure anything really helped. We tried taking E off of her Prevacid but that seemed to be a failed attempt and she is back on the 15mg solutab. Maybe we'll try again in a couple of months.

The girlies got their hair cut short...really short for Holland, at her request. She asked for it to be cut "like a boy in the back and a girl in the front" and that's what she got. It pained me a little bit at the time, but I am determined NOT to let my own hair issues rub off on my girls, so I let her do what she wanted and now think it looks super-cute (though it is already needing a touch-up).

I am toying with the idea of another 4-week Conductive Education session with Eden in February...we'll have to see if I can work that out.

And finally (I should probably wrap up since this is getting long), our 6th Annual Fashionable Growth Fashion Show is coming up on November 12th, and our family will be modeling again for the 6th time! The fashion show and silent auction are our major fundraising event of the year, to raise money for the Family Advisory Board and NICU families at St. Joe, where our girls were born and spent the first 110 days of their lives. We were so lucky that our girls were born at such a great place, and will be forever grateful to the NICU staff for the exceptional care that they provided our girls and our family. If you are interested in attending please let me know!

Thankful Thursday

Hooray!

"The new pick up schedule has been approved by transportation and will be put into effect on Tuesday, September 27. The students will get on their bus at 3:30 p.m., with a departure from (school) around 3:35."

Kindergartners

So, it's official. H and E are "kindergartners." Last week they had their first full week of school, Monday through Friday half-days in the afternoon. It appears to have been an easy transition for them. They are generally happy to go, and generally happy when they get home. Eden has the same one-on-one aide that she had in preschool, and that has certainly helped make everything simpler in terms of not having to train a new person on all of her equipment and cochlear implant, plus a familiar face and pair of hands in the classroom.

The only glitch has been with busing, and I haven't fully decided how big of a glitch it is. Originally, when I got the bus schedule, it said that the girls would be dropped off at home 25 minutes after school got out. That seemed like a long time, since we literally live 5 minutes from the school, so I called transportation to find out why. I turns out that there are 2 other students riding home after school and they will be dropping them off first, and H and E off last. Plus, there is an issue of the big buses coming in at the same time and there maybe being a wait to get the girls' bus out of there. So, after a reasonable explanation as to why the bus would be home so late, I was satisfied.

Then, on the first day, the girls got home 12 minutes before I was expecting them, and I was told that it was easier than they thought and they would probably be able to get them home at that time every day (12 minutes after school release). This seemed great at first...until the next day when Eden started crying after being dropped off and told me that she didn't have time to "climb on the stegosaurus" because she had to get on the bus. The same thing happened the next day, with both girls crying because they didn't have time to play.

After looking into it further I have discovered that they are putting the girls on the bus to come home 12 minutes before dismissal time. Currently, this translates into them missing most of recess because their teacher is bringing the kids out shortly before the end of the day...and just before H and E have to get on the bus. Once it becomes too cold (or too whatever else) for recess, they will be missing the last bit of class every day, whether it be a story or a game or last minute instructions or whatever...

I figured out that missing 12 minutes of kindergarten a day translates into missing 1 hour of kindergarten a week, which translates into missing approximately 12 days of school a year right off the bat, in addition to whatever time them will have to miss for illnesses and/or appointments. It just doesn't seem right to me, and I am puzzled as to why anyone thinks it is a good idea. I guarantee that no one would find it acceptable for me to bring them to school 12 minutes late every day.

My kids should be in school the same amount of time as all of the kindergartners. They should be doing the same activities as the other kids. I don't want them to be singled out. I really only want for them to have access to the same opportunities as all the other kids, and to be treated with the same kindness and consideration.

Because they are kids. Just like the other kids.

Eating Worms

What's worse? Eating worms, or the idea of going back to work tomorrow? Hmmmm. Tough question.

"I Wish I Could Walk"

I knew the day would come, and now it has. John and I have had many heartfelt talks about how we will handle it. What will we say? We have the challenge of trying to strike a balance between acknowledging her pain and the fact that life hasn't exactly handed Eden the easiest set of circumstances, but also remaining positive and helping her to realize all of her wonderful attributes and pointing out the many things that she does well.

We have always talked frankly to her about her disabilities. She knows, as well as a 6-year-old can, that she has CP and that she is deaf, and that these are a result of her being born way too early. We have always involved her in equipment decisions and have talked about the importance of stretching, PT, and exercise. She has always been pretty upbeat and excited about trouble-shooting new activities to see how she can participate. And up until now, she has always just been pretty matter-of-fact about all of it.

I think that the Conductive Education summer camp really stirred up some realizations and got her thinking about it a lot more. I don't know if she went into it thinking that she was going to learn to walk while she was there (which she did not), or if it had to do more with Holland being able to do gymnastics camp (which Eden can not), or if it was just being around so many other kids with various levels of disability (some with more limited ability than her), that brought on a greater or deeper understanding of her own limitations.

Whatever it was, there were a couple of occasions during the camp that she mentioned that she wished she could walk so she could go to camp with Holland. Since we have been home she has mentioned it a couple of times as well. "I wish I could walk."

As much as I tried to prepare myself for these words, I gotta say that each time it still feels a little bit like a punch in the gut. It kinda takes my breath away and breaks my heart a little bit more.

I still feel tongue-tied and a little bit unsure of myself and the best way to handle it. What should I say? What do I say?

I generally say something along the lines of, "Oh Honey, I wish walking wasn't so hard for you too. But you know, everybody has different things that they are good at. You are very lucky because you are a kind and smart girl, with a family who loves you very much just the way you are. You work really hard and you are able to do so many things. You can see. You can hear with your cochlear implant. You can talk and eat. You can crawl all around the house and are a great driver in your power chair. You have a great imagination when you play and you already know how to read and you haven't even started kindergarten yet! You are an amazing little girl who can do so many things. So, let's just keep working on your walking and with practice I am sure it will get better and better. But even if you never walk, I will always love you exactly the way you are."

Sometimes she smiles at me, gives me a hug, and says, "I love you too Mom." Other times she gets a little sad and teary, and gets really quiet for a while.

Every day I just hope that I am doing a good enough job at this.

Happy 6th Birthday H-Bomb and Edielicious!

Details to follow soon! We are heading home this Friday!

Points of Interest

• We now lovingly refer to the house we are staying in as "The Cheese House." The house is very unique in style, particularly when compared to other houses on the street. It is square and kind of a yellowish-green color, with a flat roof and brown shutters. After seeing the house for the first time, Eden said, "I think it looks like cheese. It's a cheesy house. When we come back I think I am going to cut it up and eat it!" She cracks us up.

• Holland has a rash around her mouth. It looks like eczema. My assumption is that she is allergic to something, but we can't seem to pinpoint what it is...especially because nothing in her diet has really changed and it started before we came out to Grand Rapids. I have developed and tested several hypotheses, but every time I think I have it figured out and it's improving, she wakes up with it looking terrible again out of the blue.

• Eden goes swimming with her CE class on Mondays. Now that she has a new cochlear implant processor we decided to play around with her back-up (old) processor to see if we could devise something that would allow her to hear while swimming. So we rigged up a way to keep it on her ponytail with a plastic baggie over it - and it works! It's really nice bc her conductor gives a lot of instruction while we are at the pool, and Eden can actually follow along. It is always a source of frustration for us when she can't hear in the water.
  

• I've been noticing that Holland is really on her toes a lot these past few weeks - literally. I thought it was getting better for a long time, but now it seems to be quite a lot worse. Her feet have grown quite a bit lately and her old shoe inserts are getting small. We just got her a new pair of PollyWogs and will have to do some shoe shopping and see if a better fit helps the situation. She does not have any muscle tightness related to her CP. This seems to be more idiopathic toe walking - maybe some sort of sensory or proprioceptive thing. She'll come down if we remind her, but is usually back up within seconds. We've tried to avoid any more restrictive bracing, but I wonder if we might have to explore it further down the road.

• Eden cried last week when we went home for the weekend. She didn't want to leave the cheese house. She says that this house is better for her because it is close to her school, she can get to every room by herself, the bathroom is by her room, and her bedroom is pink. I think the pink bedroom is the real clincher for her. We put our real house up for sale before we left. No one has looked at it yet. But someday I hope we will be able to buy a new house that meets all of Eden's criteria.

• Holland is really loving her summer camps. This week she is back at gym camp. It's at a place with a huge gymnastics area...soft squishy floor with built in trampolines, ropes and bars and rings to swing from, foam pits, etc. There are only a handful of kids there each day so she pretty much has free rein to do what she wants and she looooooves that! The "nature" camps at the Meijer Gardens are great too - more kids and more structured - but Holland is a true nature lover so she really enjoys that as well. She calls herself a "collector girl" and wants to collect nature everywhere we go. She especially enjoys collecting rocks, sticks, and pine cones, and on her first day of "nature camp" she came home with a handful of rocks and a note that said she enjoyed collecting rocks on their nature walk:-) She gave one of her rocks to Eden - one with a pale pink tinge, and Eden calls it her "lucky rock."

• Eden loves to eat hard boiled egg whites and mushrooms from a can. She loves the texture and taste of those foods and will happily chow down on them as snacks. Holland can't stand either one. She actually won't even try them because the texture freaks her out. If she accidentally gets a mushroom in her mouth when we are eating pizza she starts gagging! It's crazy how different these girls are!

• We get a free membership to the gym next door to Eden's school while we are here in Grand Rapids. What a major perk! I have been working out several times a week for the past couple of weeks and it feels GREAT. I used to work out regularly before the girls were born, but hadn't been to the gym since - until now. I had forgotten how good it feels. Now I wish I could figure out a way to incorporate it back into my regular life. I need to have a strong back and body, and good endurance, to be able to help Eden. She's not getting any smaller.

• We met another set of preemie twins while visiting Holland, MI on Saturday (our 12th wedding anniversary). A family from California came up and introduced themselves to us. It turned out that their twins were born at 27 weeks. One of them suffered a grade III/IV brain bleed at birth and now has mild cerebral palsy. They were beautiful grown-up girls celebrating their 18th birthday! One of them keeps a blog called Teen Cerebral Palsy that is quite informative and a great resource for other teens with CP. I was glad that they took the time to stop and chat with us.
  

• My babies are going to be SIX in 5 days. Un-frickin-believable. I don't feel sad around their birthday anymore. I mean I might if I just sat and allowed myself to, but for the most part we are so busy that I don't have the time. Plus it's hard to be sad for long when I have two lovely girls so full of life and vigor anxiously counting down the days. They are so excited this year and I am just going to try to enjoy all of that excitement with them. We are going to an amusement park and are going to have a crazy fun-filled day. I know they will enjoy every minute of it. They always do.