Monday, February 26, 2007

Chalkboard Mania

Where did they come from?

Holland and Eden are SO different from each other, that it's hard to believe they both came from the same place. The only way I can believe that they are both mine, is that I can see parts of myself, and their daddy, in both of them. Just totally different parts!

Now, everyone says that Holland looks just like her daddy. And she does, especially in the eyes, which are her most distinguishing feature. I personally think, that except for her eyes, she looks a lot like me. Her hair is much lighter than Eden's, almost blond, and curly. She obviously gets that from me, even though I always thought John's hair genes would be dominant, and expected that my kids would have straight dark hair. Holland's delicate features, and body shape, are more like mine, but she has her daddy's taste in foods. She prefers salty to sweet, fruit and veggies to carbs, and would eat "chippys" over doughnuts or cookies any day. Her other favorite foods include chicken, macaroni and cheese, ham, carrots, green beans, ramen noodles, and pizza.

Eden's coloring and body shape are more like her daddy's. Her hair and eyes are dark chocolaty brown, and she has a long torso with no butt. Minus those exceptions, she looks just like my side of the family. John thinks that she looks like my dad, and I can see that too. I can also see a little of each of my sisters in her, but I don't really see much of myself. She definitely looks more like what I envisioned my children to look like.

Eden also eats like the women in my family. She prefers the sweets, doughnuts and cookies and ice cream and chocolate, to veggies and meats any day, although she is a big fan of hot dogs. The problem is that she doesn't eat enough of anything to gain weight with all of the calories she burns trying to get around. I'd like to believe that might be a good thing in her future, but I still wish she would eat more (she's actually had about 7 or 8 good days in a row, but I don't want to talk about it because I know I'll jinx it!).

Personality-wise, Holland is "the girl with the curl in the middle of her forehead." She is soooo sweet and affectionate and social when she is well rested and well fed. She can turn on you in a red hot second, and become a hellion when things are not going her way. Lately she has taken to walking around the house crying "saaad mama, Hanen saaad." She has also gotten really good at "Peeeease mama" when she really wants something. It makes it really hard to say no, and when you do she throws herself down and rolls around on the floor "nooooo, Hanen saaaad." I have visions of what she will be like as a teenager, and it isn't going to be pretty.

Eden is much more emotionally level, but she has a bigger mean streak. We get a lot more yelling, hitting, and screeching from her, than we do tears. She has to be really upset to cry real tears, but when they do come, it's a lot harder to stick to your guns because she is just SO pitiful. When Eden is really tired she gets either crazy silly, or totally zoned out, rather than whiny like her sis. She is also a lot easier to distract and pacify than Holland. Lower maintenance overall, I guess. At least when it comes to general mood, emotions, and personality. Much higher maintenance when it comes to feeding, and taking care of her physical needs.

They are such great kids. I really enjoy their personalities and getting to know them. I love seeing how they are similar to us, and to each other, in some ways, but so different in other ways. I love watching them grow to become independent little people.

I so hope that the world isn't going to be too hard on them. I hope they will learn to appreciate their lives, and are able to embrace the challenges ahead of them. I worry so much about the future. They have gone through SO MUCH to be here and to be alive today. They are totally worth it all to ME, and I would do it again in a second if MY fulfillment was what mattered. But, ultimately what matters is if it will be worth it to them. I hope it will be.

Friday, February 23, 2007

Computer Literacy

We've had a gajillion hits over the past couple of days (thanks Tertia!), and I really appreciate all of the great suggestions and ideas that were generated with the last post. With all the traffic, our server just hasn't been able to keep up, and I'm sorry that people have had some trouble getting the pictures.

John is the computer literate person in our family. I just cut and paste. So he has come up with a new method for pics, which I hope will work better for everyone. I just have to figure out how to do it myself!!!

So, this is my practice run...and you get to see these great new pics of Eden! She is such a doll. And so accomodating when I want a smile for the camera. I can't get Holland to smile for anything! I'm lucky if she'll even look at me when I have the camera.

Tuesday, February 20, 2007

Disability Logistics

Like everyone else who is thrown into the world of disabilities, we're kind of learning as we go. As Eden is getting bigger, wait, let me rephrase that... As Eden is growing up, we're running into issues regarding how to best accommodate her.

One of our concerns right now is going to restaurants as a family. This is something we love to do, and absolutely will not stop doing. When Eden was a baby it was easy, because we could bring both girls in the infant carriers and they would sleep or play while John and I ate. They outgrew the infant carriers for use as a car seat when they hit 26 inches, which was sometime after their first birthday. We moved them into the bigger car seats, but have still carried the infant carrier in the back of the car to use at restaurants. We sit Eden in her infant carrier on a chair, right up to the table with us.

Up until now, we have carried her in to the restaurant in the carrier because it is easier. One of the problems is that she is getting really heavy in that thing. The other problem, and more of a concern to us, is that she just seems to much like a baby in it. The hostess only brings one kids menu with crayons for Holland, and they often ask if we want a sling for the infant carrier. We've dealt with all of this for long enough that we can handle it okay, but I would really like a better option for Eden to feel more like a big girl.

One thing we have started doing, is to carry Eden and the carrier separately, so she isn't actually in the carrier when we go into the restaurant. This helps the "big girl" situation, but is really hard. If this is the best option, we'll probably just start carrying her booster chair with us. Maybe we can attach some sort of harness to it to make it easier to carry. Like a backpack or something. Eden can't really sit up well enough to use the restaurant high chair. What do other parents of children with disabilities do at the restaurant?

That brings me to my next point. At home Eden has always used the First Years reclining booster chair for feeding. Now that the girls are older, we have started trying to let them sit at the table with us for dinner. We bought a nice chair at Ikea for Holland, but it doesn't work very well for Eden. Her booster isn't quite high enough to reach the table comfortably. One person from the internet emailed us and recommended the Tripp chair. There are two places not too far away that sell it, so we are going to try it out. Does anyone else have any suggestions or recommendations for a good high chair? The chair has to adequate support, a foot rest to help her stabilize, and be able to push all the way up to and under the table. If we're going to have to spend big bucks on it, we'd also like it to grow with her (assuming of course, that she is going to grow).

Another problem we have revolves around the bath. Eden absolutely loves water, and loves her bath. She has been taking baths in the big tub for a long time. We just lay her in the bottom of the tub and fill it up to her ears. She colors all over the sides of the tub with her bath crayons, and manages to swivel and wriggle from one end of the tub to the other. She really likes being IN the water, and having freedom to move around.

She's just now getting to where I think she would really like to be able to sit up in the tub. We've tried a few different options, but nothing has really worked so far. She doesn't like the reclining bath seats because she wants to sit all the way up. She can't use a bath ring or anything that requires a broader base, because she tends to snap her knees together anytime she is sitting up. Eden has just gotten to where she is sitting fairly well in the Bumbo, so we have been letting her sit in that in the tub (although the manufacturers warn against this), but we have to keep our hands on her at all times so she doesn't topple it over. What we really need is something like the Bumbo, that is weighted on the bottom and sticks to the tub rather than floating. Does anyone have any good ideas?

Last issue...transportation. Having two makes this a bigger issue than it would be with just one. Actually, having two makes everything a bigger issue, doesn't it? Holland is not getting around well enough yet for her to walk when we go shopping. I imagine this won't happen until 3 or 4. Once Holland is walking well, we will definitely get Eden a wheelchair. But for now, I need to be able to transport them both. The double stroller we use most often is the Kolcraft twin umbrella stroller. I actually really like this one for the price, although it can be a pain because it is so wide, depending on where we go.** Kohl's, for example, is a nightmare, because they pile too much junk in the aisles. Anyway, back to my point. Occasionally the double wide is a pain, and if John and I are together we would like to each take a girl separately. We got the traditional umbrella strollers as a shower gift way back when, but Eden is too slouchy to sit in it. We tried another kind of cheapie umbrella stroller, with more support in the back, but it was impossible to steer. We just bought a third umbrella stroller, that seems nice in theory, but I haven't had a chance to try it out. I probably should have invested in a nicer single stroller from the beginning, but I am always thinking that it is just a short term solution since we use the double wide most often, and eventually Eden will get a wheelchair anyway. I wonder, at what age do kids usually get their first wheelchair? When she does get it, will she be able to sit in it at the restaurant? Jeez, it's just so much to think about... Can anybody help me out?

**Of course, every time I have a hard time with the double stroller, I start worrying about accessibility with a wheelchair. It is shocking and appalling to notice how much of this world is NOWHERE near accessible for people with disabilities. I know it is not something that your average person ever thinks about, so make it a point the next time you are out. Be aware. Think about how you would go about your business if you were in a wheelchair. What if Eden, as an adult in a wheelchair, wanted to stop in for coffee at the Starbucks in Plymouth? She wouldn't be able to. There's a step up to a very narrow doorway, then a door that is impossible to hold open. It's very frustrating and I really feel for the people out there trying to live their lives having to deal with this on a daily basis.

Wednesday, February 14, 2007

Happy Valentine's Day

I've always loved Valentine's Day. I know a lot of people who knock it as "a Hallmark holiday," but I just can't find anything wrong with setting aside a special day every year to tell your sweetie(s) how much you love them.

Today I got another snow day, so another free day off work. John worked from home because he is sick, and the girls are still a bit sick too, so we didn't really do much in the way of celebrating. I didn't even get flowers...for the first time in, like, 13 years. It's no big deal though. I understand. It's just another illustration of how much having kids changes your life.

Nick Lachey said something in an interview that made me think (hahahah, that's so hilarious to me that I am going to quote Nick Lachey, but it was a good point). He said that marriage is hard, and you have to be willing to put as much energy and effort into your marriage as you do into other aspects of your life (like business and kids). That's why so many marriages don't work. Having kids, especially with all of the needs and issues that ours have had, can really take it's toll on a relationship. John and I are extremely lucky that we have such a strong, solid foundation, because trust me, this job is not for the weak of heart. We are doing fine, and our love for one another is stronger than ever, but we really do need to take more time to focus on our relationship.

We've come to see each other too much as a helper, someone to do one job so I can do another, to carry a little of the weight, to take over when it's just getting too frustrating. We're not taking enough time to enjoy the things we love about each other. It's hard because the kids just demand so much attention and energy. But, like Nick said, we need to put the work into it. If we put even half of the energy that we put into the girls into our relationship, we wouldn't have any problems!!!

So, Happy Valentine's Day John! I love you more than words can express. I can't imagine a better Daddy for our girls in the world, or anyone who could be more perfectly suited for me than you. Well, maybe I could IMAGINE someone, but he could never exist in an actual human person:) Anyway, let's please, please, please, go on a DATE already!

Mailboxes on the Brain

H and E are going through a BIG mailbox phase. Holland is interested in anything mail related. She will carry her "letters" around all day.

Yesterday as we were leaving my mom and dad's house she saw their mailbox. There was a blizzard happening outside, and the wind chill was -14, so we couldn't stop to look at it. The whole way home she cried "more mailbox." To calm her down, I told her we could look at OUR mailbox when we got home. She kept repeating "Hanen see mailbox home" and was so happy when we got home and Daddy took her to our mailbox to get the mail. Of course, when she came in she cried "Hanen more mailbox," "nother one mailbox" repeatedly. So, Daddy and I rigged together this makeshift mailbox, and she and Eden were both happy as could be. Eden liked putting the letters in the slot, and Holland liked opening and shutting the door and taking the letters out. We did have a couple of girl fights over who got to do what, but they eventually sorted it out.

Like I said before, I really shouldn't be spending any money on toys...ever.

Monday, February 12, 2007

Weathering the Snot Storm

Just a quickie...

We had an appt with the peed today and everything looks good. It is "just" a virus, and we are doing all the right things to stay on top of it with breathing treatments, etc. Lungs are clear, and ears are clear, so no antibiotics.

Eden did start to get upset when the nurse put the sat monitor on her toe. She dropped into the 80s, but recovered quickly up to 95.

The doc said to just "keep doing what you're doing" with the Pulmicort and Xopenex.

So, yay! I think we will weather the snot storm!

Sunday, February 11, 2007

Always Second Guessing

***Pictures have been removed from this post due to graphic and excessive snot content.

Not really, I just figured you really didn't want to see that.

Eden has been sick since Friday, when she started sneezing and shooting large amounts of snot out her nose. She seemed a little better during the day yesterday, but started getting worse, and coughing, last night. Today her lungs are crackly and she has a fever. We gave her tylenol and the fever seems to have gone, and she is sounding a little better after a few breathing treatments. We'll see how it goes, but I have a sinking suspicion that we may end up at the ER tonight.

Holland woke up with the sneezing and snot situation this morning. She always gets Pulmicort treatments once a day, as a preventative medicine, so this morning we increased it to twice a day.

I hate the feeling of dread, and worry, and anxiety that sits in the pit of my stomach when they get sick.

I hate trying to gauge whether we need to take them to the hospital.

I hate worrying about taking them to the hospital because they might be exposed to something worse.

I hate that Eden holds her breath and passes out when the doctor tries to measure her oxygen levels, then looks like her sats are way too low, then cries through treatments at the doctor's office like she is being tortured, which in turn, makes her sats look even lower.

I know it should be the least of my worries, but I hate that it costs $50 for a trip to the ER, even if we just get a treatment and go home.

All of these things add up to me constantly second guessing myself.

So, I guess we just wait and see. I so hope it's just a virus, and not RSV, and we don't have to go to the hospital.

Tuesday, February 06, 2007

It's just not like I thought it would be...

Before I had kids I thought a lot about what kind of mother I wanted to be. It's funny how different I am than what I planned.

These are just a few of the things that just aren't like I thought they would be...

What I Thought: My kids will be really healthy eaters. They will eat fresh fruits and veggies, very few processed foods, and low fat healthy snacks.

The Reality: Bwaaahhaaahahaha. I would feed them hot dogs and ice cream for every meal if they would eat it! Kool-Aid is better than water because it has more calories. And BUTTER! Butter on everything!

What I Thought: I will NOT have a picky kid. They will eat what I put on the table, and they will LIKE it. If they don't eat what I make, they will just have to wait until the next meal. I mean, it's not like they will STARVE.

The Reality: They are extremely picky and if they don't like what I serve them they throw it on the floor with a look of pure attitude! I offer as many as five different foods at a meal hoping that I will hit on something they might at least TRY.

What I Thought: MY kids will never throw a fit in the middle of the store!

The Reality: Pretty much every trip to Meijer ends with Holland tantruming because she wants to ride the horsie. We've gotten pretty good at calmly ignoring her. It's a bummer because I sometimes WANT to let her, but I can't because I know how it will end.

What I Thought: No bottles or pacis after age 2.

The Reality: As long as they are drinking them, I'll be giving them. Luckily Holland doesn't take a paci. Eden still uses hers, but on a really limited basis (only at bedtime, and not even every night). But if they wanted it, I'd still let them have it.

What I Thought: I'll never let my kids watch videos (especially Barney) for more than a half hour a day.

The Reality: How the heck else am I supposed to get anything done????

What I Thought: I will keep my house clean, and free of dust and dog hair that might aggravate allergies.

The Reality: IT'S NOT!!!

What I Thought: Kids today have too many toys. I won't buy toys for my kids.

The Reality: I can't resist. Every time I see something really cool that I think they will like, I HAVE to buy it. It's a obsession. I just love to see their faces when they get something new and intriguing. They play with their new toys, for a minute. The rest of the time they pick the oddest things to spend hours with.

What I Thought: I will not let having kids take over my life. I'll still be able to hang out with my friends and do all of the things that I did before.

The Reality: My world revolves around them. For better or worse.

It's just amazing how much motherhood changes you...


Or not...Yay! Snow day! Well, actually it's not really a SNOW day, just a too-freezing-to-go-to-school day. Which means I don't have to go to work! You gotta love a free day that you weren't expecting. Apparently yesterday was a too-freezing-to-go-to-school day too, but since I don't usually work on Mondays, I didn't even know the schools were closed.

So, lucky for you (and me), I have some time to write a post while the girls are having their bottles and watching Barney.

In kind of an addendum to my last post, about having teeny tiny girls who won't eat, I thought I'd mention how hard it is to buy clothes for tall skinny kids. I was looking at some of the tags on their new clothes. Cherokee brand (Target) size 24 months is for kids between 33-35.5 inches, weighing 26.5 to 28 lbs. Old Navy brand, size 2T, is for kids 33-36 inches, 30-33 lbs!!! Now that's why I love an adjustable waist!

H and E have definitely outgrown their 6-9 month clothes, except for a few 9 mo onesies that run big. They have mostly outgrown their 12 months clothes, but pretty much only in length, and they are starting to get too long for some of their 18 month clothes. So, I have been buying 24 months, or 2T for summer and next winter.

The majority of their clothes are hand-me-downs from my sister Missy. My niece Claire is a year older than my girls, and is also a teeny tiny little thing. She was full term and is very healthy, but only weighs 26 pounds at 3 1/2. It works out great for us, cause as she is growing out of her clothes, we are growing into them! And my sister has great taste, so we get some REALLY cute clothes.

There is potentially a slight hitch in the hand-me-down situation that really bums me out. Missy just called me last week to ask if I could bring the 12 months clothes to my mom's. Her youngest daughter Kate is outgrowing the 6-9 month clothes! Uh oh. She's going to catch us! I guess that's what happens when your kid totally likes to eat. They go and grow.

I'm guessing by fall Kate will be in the same size as H and E, so we won't be able to get the hand-me-downs anymore. Also, my sister-in-law Sabrina is expecting a girl at the end of May. If this little one is anything like her big brother, she'll pass everyone up, including CLAIRE in a matter of months!

I promise not to complain TOO much, because I really LOVE shopping and buying clothes for my girls. I get to buy not just one cute girlie outfit, but two! It can be expensive though. That's why I buy all of their clothes at Old Navy, Children's Place, and Target. Preferably on clearance. Nothing makes me happier than a good deal on cute baby clothes (or should I say KID clothes?).

I went to the Kensington Valley outlet mall last week with my sister Kim. Children's Place was having a "50% off already reduced prices" sale. I was so excited. I stocked up on some adorable clothes for next winter at incredible prices. I got the girls 4 skirts, 6 tops, 4 pairs of pants, 2 denim jackets, 2 pairs of tights, and 4 pairs of PJ's for $100.00!!! Now that's a deal I just couldn't pass up!

Sunday, February 04, 2007

Two and a Half Stats

I checked the girls' current stats at home, and plotted them on their growth charts. It's so weird for me that we had their last physical when they turned two, and don't have another one until they are three. How am I supposed to go a whole year without weight checks to make sure they are growing okay? I think I will send the pediatrician an email to see if he thinks we should come in earlier, or if he thinks I am just being neurotic.

Anyway, Holland's weight at 30 months (unadjusted) is 21 pounds 3 ounces. She is 33 inches tall, and her head circumference is 46.75cm. This puts her at the <0 percentile in weight, the 3rd percentile in height, and the 10-25th percentile for head circumference. Her length to weight ratio is at the <0 percentile.
Eden's weight is 19 pounds 2 ounces. She is 32 inches tall, with a head circumference of 48.5cm. Her weight is even further from the curve than Holland. Her length is hovering close to the 3rd percentile (maybe at the first), and her head is at the 50th percentile. Obviously, her length to weight ratio is also at the <0 percentile.

In other words, we don't seem to be getting anywhere fast. On the bright side, they are bigger than they were at two, and they ARE growing. On the not-so-bright side, they are impossible to feed, and although there are some good days, it isn't getting much better. Meal times take SOOOO long, and I feel like my life revolves around trying to get them to eat. It's excruciating. It really is.

The truth is that I start feeling like this (depressed and stressed out) every time I plot them on the stupid chart. At least when we are at the doctor's office he can talk some sense into me. He always stresses that he thinks they are fine, and he doesn't feel like their small size is something we should worry too much about right now.
In some ways I feel like I should get a second opinion. At the same time I am fairly certain if I go looking for someone to say Eden needs the g-tube, I will find them. But does she need it or not?

I think the pro of a g-tube would be that we wouldn't have to worry so much about how many calories we are getting into her. We could make up for anything she did not eat during the day at night while she is sleeping. We could load her up on calories and she might grow. The cons would be another surgery, the possibility that her reflux would worsen and cause problems with her wanting to eat, and her losing the ability to regulate when and what she wants to eat. I wonder if she felt full all the time if she would EVER eat.

I really don't know. I guess at this time, I still feel like the cons outweigh the pros, so I don't think I will go looking for someone to say she needs it just yet.

Other considerations I have to take into account...I looked at John and myself on the adult weight charts. For our heights, John is at the 5th percentile for weight, and I am at the 2-3rd. It just isn't very likely that we would have big kids under any circumstances. Also, Eden's PT pointed us to a growth chart for kids with CP. Eden is between the 10th and 50th percentiles on that chart (around the 30th). So, she has small parents, was born 16 weeks early weighing less than 1.5 pounds, and has CP. G-tube or no g-tube, she is always going to be little.

Maybe I should focus on the advantages to having tiny kids. They aren't as heavy...period. This alone makes it easier to care for Eden. It makes getting her in and out of the tub easier, carrying her, lifting her, moving her around, all of those things. The smaller she stays, the easier it will be to take care of her. And she won't have to worry about her weight when she gets older.

Of course, I'll still continue trying to force all the food and calories into skinny little Eden that I possibly can, in hopes that she will one day grow to a normal adult height and weight.