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!