Different

I've been thinking, pondering, wondering... How do I teach Eden that she is just like everyone else? That her disability does not define her? That she can do whatever she wants, based on her strengths? That everyone has strengths and weaknesses?

How do I teach others that she is a "normal" kid? That she should be treated the same as everyone else? That she loves all the same things that the other kids like? That she wants to play too?

Then it hit me...

She is NOT like everyone else.

If I fail to recognize and accept her differences...if I fail to recognize and embrace her many strengths, I am failing her.

She is different.

Just like everyone else.

It's a Wrap!

Merry, Merry Christmas...

...from our families to yours!!!

Mommy's side cousins: Claire, Marion, Holland, Jenna, Malachi, Kate, Mitchell, Evelyn, Eden, and Matthew!


Daddy's side cousins: Cody, Holland, Briana, Eden, Justin, and Connor!

A Spoonful of Sugar...

...yeah right.

We are having a heck of a time getting Holland to take all of the medication she is on right now. As far as the cold goes, she is getting better. Still some stuffiness, and occasional wheezing, but mostly better. But she is still on an antibiotic for an ear infection, and the oral steroid Prednisolone for the lung/breathing issues, in addition to her usual Zyrtec and Singulair.

The steroid tastes like CRAP, and she HATES taking it. I know how bad it is because I tasted it. It is such a sad, dramatic battle, that I can hardly stand it. She has to take it twice a day for 4 days, but she's already thrown it completely up twice, so we'll probably have to redose those. It sucks. It's a nightmare trying to get her to take it, then she gags and retches, and ends up throwing up. She cries so hard, puts her hands up over her face, and throws her head back. We try to hold her down and she thrashes all around. We've tried to keep our cool, and bribe her with everything in the book. Nothing is working.

In addition to that, side effects of the medication include irritability, mood swings, and difficulty sleeping. Well, we've got that. To the total extreme.

Any advice? At least a little empathy? Anything? Please...Help...

She's making me crazy.


On a happier note...Holland and Eden both got gifts from their secret Santas. They both LOVE them SO much. A great big THANK YOU to Brooke and Nathan (and their moms!). It was REALLY fun to get presents in the mail, and both girls received gifts that were perfectly suited for them:) We greatly appreciate your thoughtfulness and kindness. Merry Christmas!

An Early Gift

My little Eden made me so happy and proud today!

We've had a demo powerchair at our house for the past month. It is the same chair, the Koala, that we decided on and are in the process of ordering for Eden. The problem, up until today, was that Eden REFUSED to even sit in it. Holland loves sitting in it, and would drive it around the house and make it go up and down, but even after watching Holland, Eden said "NO WAY" when we asked if she wanted a turn. Every time we tried to push the issue she would cling to me like a little monkey and start crying. If I tried to get her in the seat, she would stiffen like a board, and a couple of times even held her breath until she turned blue. We had kind of backed off, and even decided to give the chair back for a while until she seemed a little more ready.

Holland took a little trip around the house today, and when we asked Eden if she wanted a turn she said "okay, my turn!" We put her in, and away she went!!!! After about 10 trips around the house, John asked her if she was done, and she said "NO WAY!" She probably took 20 trips around, and was very happy the whole time. Then later in the day she took another turn to show off for some of the family. When she was done she said, "that was fun!" It was SOOOOOO awesome and exciting! She totally gets it, and was very happy with her newfound independence. Now we just have to teach her how to steer before our walls are completely destroyed:)



She also spent some time playing the piano in her chair. I love the lift function, because at the lowest height she is eye-level with Holland, but the chair can lift up to reach the piano or a dining room table. Awesome. I can't wait until we get hers. It's going to be a while still...at least 6 months.

Bad Timing???

The girls are both sick. I can't decide if the timing is terrible or great. It has made it really difficult to get ready for the holidays, but at least Santa won't have to visit us in the hospital. Yesterday was a bad day for Holland, but today seems better. I took her in to the doctor's office. Yesterday she was satting 91 when we got there, but came up to 94 after 2 treatments. Today when I took her for a recheck she was at 94. So, it looks like we are on the upswing and should be better in time for the big day:)

Snow Angels

I can't remember being this excited about a snowstorm before! Finally, Holland got her wish. Alas, it just isn't good packing snow, so no snowman today. I'm hoping as it warms up over the next couple of days we'll have more luck with that:)

The first big snowfall of winter is just one of those things that is so much more fun when you have little people to share it with!

Little Artists

3-Year-Olds Continued...

So, I kinda summed up the current state of eating and growing at our house in the last post. Incidentally, today was an excellent eating day, and that always puts me in a happy mood:)


What I've really been wanting to do is to write about some of the really cute and funny things they are doing and saying lately. I love this age, despite all the bickering and whining that sometimes goes on. It seems like the are learning so much so fast, and the next thing you know I will blink my eyes and they will be teenagers. There's so much that I don't want to forget!

I'll start with a few Holland stories. Holland is pretty much talking in complete sentences, asking and answering questions, and following multi-step directions. Well, at least when she actually listens... She adds words to her vocabulary EVERY day, and amazes us with some of the things she comes up with.

I started putting the xmas tree up while Holland was napping. When she woke up and came downstairs she got really excited and said "OOOOHHHHH, it's Christmas!!!" The next day she saw the tree after I had gotten the lights on it. She said, "Wow Mom, you finished it! Can I touch it?" I said "sure, you can touch it." Then she said, "no, I'm not going to touch it...it has germs on it." When she saw the stockings hanging from the mantle she said "Wow Mom, that looks beautiful!"

Every time she looks out the window and sees snow, she says "It's snowing! Can we go sledding? Can we make a snowman?" Nevermind that the snow isn't actually sticking to the ground yet! When she hears a Christmas song on the radio that uses the word holly, she says "Me Mom? Me?" I'll say "Yes you!" And she says "they're singing about ME!"

Many times lately when I ask her to do something she responds, "I can't now. I too busy." The other day I asked her to come down in the family room so I could get her shoes on, and she said "I'm never ever coming down there." "Never ever?" "Nope, never ever."

The first thing she said when I walked in to get her up in the morning after last Thursday when I was sickly ill, was "MOM, you're HAPPY!" I couldn't convince her that the reason I was in bed the day before was NOT because I wasn't happy. She's also still very big on informing us when she is sad. "I'm SOOO SAD." We hear this A LOT! She's also very great about saying "I'm sorry." Sometimes she says it at the wrong times though, like she falls then tells me "I'm sorry Mom." I don't know why she feels the need to apologize all the time. She clearly doesn't get this from me;)


Holland is also thinking a lot of things are "scary" lately. We hear "I'm scared" almost as much as "I'm sad." She is very afraid of the previews to her DVDs especially the Disney ones. I've tried analyzing this fear, and what I can gather is that she does not like the music/noise or the announcers voice that comes on with the digital Disney DVD. I think it surprised her once, so now she thinks it is coming every time the screen turns dark. She either hides, or makes us hug her during the previews of any Disney movie. She'll hide her eyes with certain parts of other movies, but once the video is on, she is okay.

Holland also LOVES dogs, and loves to BE a dog. She also want ME to be a "mommy dog." All. day. long. Every stuffed toy needs to have a mommy and a baby. She pretends to be a baby, and wants me to be the mommy. She says "mommy." I say "baby." Then I get big hugs. Gotta love that. Until about the 200th time, but that's okay.

Eden's language is really coming along now too, but is clearly delayed both expressively and receptively. I'm not sure how much of the delay is due to not hearing for the first year, having CP, a combination of the two, or something else entirely. Even so, I am very encouraged with the progress we are seeing lately, and I think if we can continue to be patient with her she will continue to amaze us all.

She is a total parrot lately, and repeats everything her sister says. Having Holland there as a model, as well as a motivator has been extremely helpful with Eden's speech development. Eden has had a couple of her own breakthroughs just this past week that I am very excited about. First, she has started alerting us when her cochlear implant is not working!!!! Yippee!!! I have waited 2 years for this! Just this past weekend when I was feeding her a meal in her booster chair, I noticed that her magnet would come off when she turned her head. She repeatedly reached up and touched the coil, then looked at me and pointed to her cheek. Now, we have taught her to point to her ear when she hears something outside of the room, and to say "I hear it." She does this ALL the time now, when she hears something interesting like a siren or an airplane, or a dog barking, but instead of her ear she points to her cheek. So her pointing to her cheek when her magnet comes off is her way of saying "I can't hear it!" She did it in school on Monday when it had shut off, and let me know that I needed to fix it. It almost made me cry! I am so glad that she will be able to let her teachers know when she can't hear when she actually starts going to school without me. I was envisioning her at school unable to hear, and never telling anyone. We'll keep working on it until she gets really good at it, so I don't have that worry!


The other really cool thing that she started doing lately is saying and signing diaper change after she poops. Historically she would sit in a wet or poopy diaper all day and never make a peep if I wasn't on top of it. I wondered how it would ever be possible to potty train her if she didn't even care if she had a dirty diaper! In just a week she is consistently telling me when she needs a diaper change, and at least 3 or 4 times has told me BEFORE she actually pooped! We've had her sitting on the potty when she asks, but so far nothing in that department. But I think it will happen...someday. Maybe it will happen for Eden before Holland. You never know. After experiencing some early success with using the potty, Holland has decided that she really is not interested anymore. The only times she asks to go "poop in the potty" are when we are sitting down for dinner at a restaurant, or when it is time for bed. Of course, neither time does she actually need to go:)

The other thing Eden has gotten really good at lately is saying "no way." Why is "no way" SOOOO much more annoying than just "no." And why not "no thanks?" Why "no way?" I don't know where she got that, except for maybe her sister.

I love how Eden says "Hi Guys!" when she enters a room, or when she is playing with her little characters. I also love when she covers her mouth to laugh and says when she thinks something is "funny." I love when she wears the fleece Cinderella shirt, that she has to keep the hood on all day long, and says "uh-oh" over and over if it falls off. I love that she calls us "mommy" and "daddy" now instead of always mama and dada. I love that the past few days she says "santa ho, ho, ho" when she sees a santa, and repeats it over and over if you laugh cause she loves to be funny.

They are both so cool, and funny, and smart, and loving. There are still plenty of challenges, but when I step back and look at the bigger picture, we are mostly pretty lucky, and I have so much to be thankful for.

Three Years

Don't you just hate it when your life gets in the way of your blogging??? Let me just tell you that this has been a crazy, hectic couple of weeks at our house. I can't believe it's already DECEMBER! I guess that means it's not going to get any more relaxed around here until after the holidays.


The girls had their 3-year NICU graduation/due-date birthday on November 17th, and I've been meaning to do a post about what they are like as 3-year-olds. I haven't gotten around to it yet because we've been weathering some sickness. The girls had colds just before Thanksgiving. Holland had it first, with worse cold symptoms, then Eden caught it and didn't eat for a week which is totally just as bad. When Eden gets a cold we always notice an increase in her reflux, more vomiting, and a major breakdown in any progress we thought we had made in her eating. To say it sucks would be a complete understatement. I cannot believe how stressed out we (John, me, my mom) get when she stops eating. Every time I tell myself repeatedly that it is temporary, but I still freak out. It's no help to anyone and we need a better game plan. She really does bounce back pretty well once she feels better, but during this time of year when it's one thing after another we sometimes don't even get a chance to bounce back!

This past Thursday I woke up at 4am with a NASTY stomach bug that lasted about 12 hours. We were so terrified that the girls would catch it, so my awesome husband stayed home and quarantined me to the bedroom. He took the girls downstairs and kept them fed and entertained the entire day, then sanitized the entire house after they went to bed. He also brought me each meal according to the BRAT diet, and didn't get upset when I could only eat a few bites. So far, the girls haven't shown any signs of catching it. Maybe the quarantine worked.

So, what ARE the girls like as three-year-olds? I'll start with Holland, who will always be my baby A. And, of course, I'll start with eating and growing, since that what we spend the vast majority of our days focused on...

Holland is eating pretty well now and has gained over three pounds in the past 4 months. She FINALLY hit the chart for her real age around the 3rd percentile at 25 1/2 pounds. She is just about at the 25th percentile for height at 36 inches. So, she may still be skinny for her height, but I am perfectly happy with those numbers, especially considering her genetics, history, and the way she is eating lately.

Holland LOVES spaghetti, and it is hands down her favorite meal. She gets the high calorie version with ground beef in the sauce, butter, parmesean, and spritzed with olive oil. We eat it at least once a week. With leftovers, she probably has it at least three times a week. Spaghetti, and Ramen Noodles, are probably the only things that Holland will actually feed mostly herself. Oh, and broccoli. Most meals she starts feeding herself, but after a few bites loses interest and we have to take over. She still eats in front of a DVD, and we feed her the vast majority, but she almost always eats without a fuss and actually enjoys it. Three pounds in four months proves it!

Eden has also gained some weight in the past 4 months...about 2 1/2 pounds actually, putting her at 22 pounds. She is not close to the chart for her age, and I truly wonder if that is even a realistic goal. On the CP Growth Chart she is about the 20th percentile for weight, and above the 50th for length at 35.25 inches.

It's hard to talk about how Eden's eating is going, because it can vary so much from one day to the next! Today was a good day. On a Good Day Eden can seriously pack away some food. I am not kidding. Some days you might wonder where she even puts all the food she eats. She will eat everything offered to her for an entire day and we might even stop offering her food because we're afraid she might make herself ill. Then, the next day, she might not eat a thing.

I think the Prevacid Solutabs might be a wonder drug for Eden, as we saw a real significant improvement in her eating in first couple of months after we started it. I only regret that it took us 3 years to try it. I'm also beginning to think we might need an increase on the dose. In addition to the Prevacid, we started the Periactin, and the jury is still out on whether that works for her as well. It's hard to tell because the times we've stopped using is just happened to correspond with a sickness, so I don't know if she stopped eating because she was sick, or because we stopped the Periactin. We're going to renew the prescription another month and see what happens.

Eden's favorite meal is fajitas from Chili's. She LOVES her some Mexican food, just like her mama. She eats the fajita chicken with sour cream, shredded cheese, and especially avocado and guacamole. We've started buying bulk in avocados and she eats at least a few slices every day. In fact, she likes it so much that it works great as dessert after she eats something else. You know, after you can't get her to eat another bite...you just bust out with the avocado.


Don't get too excited about Eden's eating though. I don't. We still have some really rotten days when she WON'T eat a thing and we go crazy worrying about what could be wrong. I am noticing that bad days almost always correspond to an increase in the reflux, which almost always corresponds to a sickness or teething, even if it's not immediately apparent. Luckily she and Holland both JUST cut their very last tooth, so we don't have that worry anymore. Eden's was her last two-year (haha) molar on the top left, and Holland's was that second tooth from center on the top right that I had pretty much resigned myself to thinking must not be there.

I have lots more 3-year-old blog fodder running through my mind, but I am out of time for tonight, so I'll try again later in the week. I have so many cute stories and funny-things-they-say to tell you about! Will post again soon:)

Silly Faces

Don't you love that one little thing you can actually get them to do on command??? They crack themselves up. Us too, of course:)