Wednesday, August 31, 2011

Shhh. Smell something?

I sure did as I was confronted with a wall of odors coming from my now 4 day 'powerless' vacant home. 4 days. Not that bad - you would think. Oh, it was THAT bad. Before I go any further, I should say that our power is now back on. Yay. We are home. :) 

Our dear cats did actually keep to the litter box this time, but considering we have three of them and that is the first thing you smell when you walk in the door, it's a little overwhelming. Don't worry, it gets better. As you walk through the small hot (because the ac has not been on) entrance into the kitchen the odor slowly changes from cat mess into a less distinctive but just as horrible raw almost tangy smell. Like that description? I thought you would. If you haven't guessed it yet, that would be my entire refrigerator and freezer storing thawed meat, condiments, milk, etc. Out of everything in my refrigerator I get to keep a box of waffles. That's all. The smell has wafted through the entire downstairs mingling with staleness. But wait. There's something else. Something.... even worse. Something.... indescribable. I search it out. What is that??? Then I find it and instantly wished I hadn't. Maggots. Yup. In a practically empty closed trash can. How'd they get in there? No idea. But they were there. So now I had to stop everything else I was doing to clean that out. Gloves: check. Copious amounts of bleach: check. Hose: check. Okay, that chore is done. Onto bigger and better things. 

I don't want this to sound like I'm not thankful, at least for a few things. 1) Our power has been restored. Thank you Jesus! 2) Everyone is back in their own element which always bodes well for the kids. 3) It was nice enough outside to keep doors and windows open to let everything air out. 4) God always provides. We had a place to stay and we were all together.

There's still a lot of catching up work to be done before we can fully get back to normal but that's okay. Comes with the territory. It wasn't the best welcome home but not the worst either. In parting, remember: there is no Dana. There is only Zuul.     

Tuesday, August 30, 2011


An update for those who want or have wanted to comment in the past. I have now changed it so that anyone can. Sorry it's taken me so long. Oy vey... life with four kids. :)

Power Update

Day 4 and still no power. Hoping today is the day. We're still bunking at my parents and as you can see......

.....Rambo doesn't seem to mind. :) Our nurse has even come here so that we can still sleep at night. I'm anxious to get home but not so anxious about cleaning up all the odd smells that will be emanating from our refrigerator due to four days without power.

On a side note, to all those saying that Irene was lame or a disappointment or whatever - remember that some places were massively flooded, streets closed, and there are/were long standing power outages. Just because your house or neighborhood was not affected doesn't mean that nowhere was. Try being thankful. :)

Enough reprimand. I need to go make some very stern (but loving) phone calls to Delmarva Power.


Sunday, August 28, 2011

Operation: Hurricane hunkerdown

Well, the storm is over. Hurricane Irene has come and gone. Most things have been left undamaged and we're all still standing. Just as we thought it would most likely be. But I did one thing this time around that I had never done before. I prepared for a hurricane. Now, it's not because we've never had a hurricane (although, to my recollection this is the first 'big one' in my lifetime). It is because I don't prepare. Ever. Even having been a mom for now 7 (wow) years, I have always enjoyed being flexible, go with the flow, spontaneous, naieve - call it what you will. I. don't. prepare. BUT a certain someone that entered our lives on Dec 15 2010 has changed all that. Against my will too! That boy cramps my style.

Back to the hurricane. I actually started boiling water and putting it in empty gallon containers two days ago. I bought extra wipes and diapers. I even, get this, got medications refilled ahead of time. I generally find myself ordering his meds the day before he needs them and then spend my time running from pharmacy to pharmacy trying to find someone who can fill it. This, of course, is not my fault. It's the pharmacies fault because.... well, just because. Things at home were tied down, taped up, and turned over just incase. Just in case what? I'm glad you asked. Just in case the wind blew something into the window and broke it and now Theodore's area is drenched in water. Just in case something was blown into the van and now we can't get Theodore to the hospital. Just in case we ran out of electricity for an extended period of time and we don't have water to make his bottles. (Also, damage to our house would really stink.) Yet even though we found ourselves as prepared as possible at home, here we sit, at my parents house because we just couldn't take the risk. And it's a good thing we did because power at our house did go out yesterday evening and is still out at 11am the next morning. Who knows how long it will be like that. And we only have so much portable oxygen.

Now, I can see a lot of perks to being at my own house. First of all, it's MY house. We've spent enough time away from it already. You're always more comfortable in your own home. The kids like playing in their own rooms. The list goes on and on. But as I sit here with my kids watching a movie on Netflix, me just having gotten out of a nice hot shower, and a cup of hot fresh coffee in my hands I think how nice it is to be here. I'm so glad I'm not 'camping out' in my own living room. How my parents feel about that, I'm not sure considering we're taking over, not just their living room with all of Rambo's supplies, but their entire house.

The kids enjoyed watching the hurricane from the garage for awhile. They enjoyed it until it was time to go to bed anyway. Then the 'weird' room and the strange noises pretty much kept them up the entire night. (Note: this make is sound like we made them sleep in the garage. Not quite.) Rambo was none the wiser to the entire situation. It would figure that the person responsible for the whole mess had no idea what was going on.

All in all Operation: Hurricane hunkerdown was a success. Now as soon as we get power at our house then we'll really be talking.

Wednesday, August 24, 2011

And the winner is........

The audiologist.

Why, you ask. What is she the winner of? She, my friends, holds first place for dumbest question we've been asked thus far. 

Because of Rambo's unknown genetic disorder and possibly some of the medicines used in the hospital, he could potentially be at risk for hearing loss. Again, nobody really has any idea what is going on, so we are just covering all the bases. Seeing an audiologist to assess him was the next step. 

They did initially say that it was best for the baby to be sleeping for these tests because it has to be as quiet as possible. Understood.  But I'd like to meet the person who can get a child to sleep on command. If you know one, please pass along the number. We did, however, manage to get Rambo there asleep. Of course in the midst of getting him inside the building with all his equipment and then the fact that she is STICKING STUFF IN HIS EAR.... Well, I'm sure you can imagine that he didn't stay that way. Thus leading us to the prize winning question. After many assurances that what she is doing doesn't hurt it's just uncomfortable and that most babies (not this one) stay asleep during these assessments, we finally get Rambo calmed down. She decides to try again, but before doing so looks at me and asks if quote 'he can breathe any quieter.' To which I answer by looking her square in the face and passionately declaring "You can't handle the truth!!" Okay, no I didn't. It was more of a flat look and reply of "" 

I suppose she probably doesn't see too many children with all these issues, trach included. But really? Did she expect me to reach over and turn the 'silent' option on? Needless to say, the appointment was a total waste of time. 

So that, ladies and gentlemen, is the question with the blue ribbon for now. I eagerly anticipate the one that will take it's place. 

  And so does he, as you can tell by the sly little smile on his face. :)      

Friday, August 19, 2011

Cold Water Confessions

This past week we had no hot water. I don't know if you can remember the last time you had to be without hot water, but it wasn't fun. You would think maybe it's not such a big deal with the weather still being warm - well, I thought maybe it wouldn't be a huge deal. At least the first day that's what I thought. Then the second day came and the dishes were piling up, no one had had a shower, laundry was piled high. This is when it started getting to me. To even wash the dishes (because we couldn't use our dishwasher - absurd and cruel!!) I had to boil two huge pots of water. By day four I thought enough is enough! On top of all this, Rambo had a stomach bug of some sort and needed constant diaper changes for three days. Needless to say, he was grumpy which meant that I was grumpy which meant that EVERYONE. was. grumpy. 

This, however, is not the point. I've done enough complaining in my past several posts. Which, by the way, IS the point. It's sad that having no hot water can get me in such a funk. Yes, we have a lot going on. Yes, it's nice to have the kitchen clean. Yes, its nice to be clean (Ok, this one I'm not willing to budge on. I need to be clean. And thanks to my neighbors who I've totally freeloaded off of this past week, that was possible) But when my attitude is bad because a little luxury was taken away then I need to step back and figure out what the real problem is. It SHOULD bring me joy to sit and read a book with the kids because I can't do the dishes. It SHOULD bring me joy to help them clean their rooms. It SHOULD bring me joy when I hold my son who is upset and see him smile because I'm around. It SHOULD, but it didn't. 

In our care group we are reading James. The ever convicting book of James. In high school I had the entire book memorized. Thank you, Mr. Morely. Now, I can only remember the first 8 verses of the first chapter. If you know James then you would think that those verses, the only 8 I remember out of 5 whole chapters, would be appropriate for my current situation. That's what you would think. But you'd be wrong. You see, I can ramble off those 8 verses without thinking twice. I say them but I don't hear them. If I had heard those verses then I would have taken heed. James says to "consider it all joy when you face trials of many kinds." Well, I certainly wasn't doing that. In fact, joy was nowhere on my radar at all. Later he talks about not just being a hearer but being an effectual doer. I was being neither a hearer nor a doer. An effectual avoider was more like it. I was in my own little world of frustration and inconvenience. I'm sure you can imagine that wasn't helpful to my husband, my children or our house as a whole. 
Maybe I purposefully blocked out the rest of the book of James because I don't like what he says. :) It doesn't come naturally for me to take joy in stress, difficulties, and chaos. I'd much rather have the instant gratification of anger or short-temperdness (if that's even a word). However, I'm finding out that that gets me nowhere. So, with a different perspective, the goal of being an effectual doer, and a new hot water heater I am out to get through this day. Just today. We'll take tomorrow when it gets here. 

"Consider it all joy, my brothers, whenever you face trials of many kinds because you know that the testing of your faith develops perseverance. Perseverance must finish it's work so that you may become mature and complete not lacking anything. But prove yourselves doers of the word, and not merely hearers who delude themselves. But one who looks intently at the perfect law, the law of liberty, and abides by it, not having become a forgetful hearer but an effectual doer, this man will be blessed in what he does." James 1: 2-4, 22, 25 

Rambo Update:

His poopy little butt is becoming less poopy.
He is starting to sleep better because he is feeling a little better.
He weighs 16 pounds 8 ounces!!
The doctor says no signs of teeth but I disagree. What does he know? :)
He is becoming a little man:

Look at him all kicked back in his chair. He looks like his grandfather. I won't say which one. 

Tuesday, August 16, 2011

A little somethin somethin

Okay, how cute is that? He just fell asleep on the floor and I couldn't pass up the opportunity to snap a quick picture. Love that boy. Love that serious wrist and finger fat too. Thank you, God, for him!

Triple R

Rambo is crying in the foreground. Crumbs are on the countertops. The sink and dishwasher are full of dirty dishes. The carpet is emanating bits of paper, dirt, and old broken crayons. We had a doctors appointment yesterday and another one tomorrow. Flies are overtaking my house. I'm out of diapers. And we have no hot water. BUT, I can blog. There's always blogging. (Which, by the way, when did "blog" become a verb? Or even a word?) Forsaking responsibility today seems like a terrific idea.

Rambo, Responsiblity (or lack thereof) and other miscellaneous Ramblings - aka Triple R- is my theme for today.

So here I sit, at the computer, my back turned to the world (as little as my world is right now) typing about things that no one in their right mind would want to read about. Theodore has finally put himself to sleep - something he has been fighting lately. And just now a stupid *insert bad word of your choice here* fly lands on his head and wakes him up. ARE YOU SERIOUS?? As you'll notice, I haven't moved from this chair. I'm still typing. Still ignoring. Still dreaming that if I close my eyes it will all go away. 

Okay, okay... it's not all that bad. It's not like my kids have walked in here and interrupted me 19 times telling me, as though I can't hear, that Theodore is crying (or any other various reason). It's not like that happened. Not at all. Nope. And my house is actually terribly messy. So maybe it IS all that bad. But my good attitude is still hanging on. If I just keep reminding myself that responsibility is overrated then I think I'll be okay.

On a good note, I thought my coffee maker was broken but it's not! I had a nice freshly ground freshly brewed cup of hazlenut coffee this morning with just the right amount of creamer. Thank you, Cuisinart. I may have had to drink it while holding a screaming baby, but I chose to enjoy that delicious piece of sunshine despite the circumstances. Also, my dear neighbor did bring me some diapers so I don't have to use linens or papertowels. Yes, indeed, things are looking up. 

This leads me to Triple A: Attitude, Always having coffee, and Avoidance at all costs. Triple R might be my theme but this is the means. 

For those actually reading this to keep updated with Rambo and not to just read whatever mindless whim I have taken, this is for you. We went to the cardiologist yesterday and things are looking good! They don't want to see him for another 6 months. This is the one department in which he does not seem to have the doctors confused. For now. Maybe I shouldn't have said that. Let's pretend I didn't. The doctor said that we should keep an eye on his mitral valve as he grows to be sure the repairs are staying put as they should. But other than that, he looks good. He even has P waves!! There should, as one doctor in the PICU put it "be much rejoicing" over this. It all has to do with the natural way your heart beats and which side fires first and all that jazz. I'm sure that you have figured out that he has not always been on board with the P waves. Maybe with age Rambo is realizing that the simple life is the better life. Or maybe this is just the calm before the storm. Let's hope its the former. 

He weighed in at 15 pounds 14 ounces and 25 inches long. Grow, baby, grow! This past week has been a little hectic in the sleep department. Rambo is going through what I can only describe as a 'clingy stage.' We've been having him practice putting himself to sleep which has apparently been against his will. However, each night it has gotten a little easier. He has also become very engaging. He likes seeing new faces, he smiles more, he's wants to be interacted with. In other words, Rambo is a socialist. 

So here is what we are aiming for with Rambo. Triple S: Simplicity. Sleep. Stability - in every sense of the word. 

I suppose I should finally take some responsibility today and vacuum or do something else just as pointless. Because, let's face it, I'm gonna have to do the same thing tomorrow (or later today if you live in my house). Vicious cycle these things called 'chores' are. But with my Triple A outlook (obviously trading in the Avoidance for Alcohol) we will persevere. :) 

*Just kidding about the alcohol by the way, at least in high quantities.

Wednesday, August 10, 2011

Life According to Emma

Emma is our third child -the youngest girl. She is a sweetheart. Hugs and kisses are her specialty. She loves all her siblings especially Rambo. She's always making cards and giving you 'gifts'. Although, those usually consist of a pair of your own old worn shoes or a plastic pink saucer from her tea set. She'll fall asleep wherever she lies if she's tired and she loves to sing songs. She is also extremely sneaky. Dare I say, at times, a little trickster. Which is why her nickname is SneakySnead. This, however, is obviously cancelled out by the fact that she is cute. Indisputably, terribly, ridiculously cute.

 And not just because she looks cute, but because she sounds cute as well. If you sat and listened to her talk you would not be able to help but smile. And talk she does. There's always a story she made up, a knock knock joke to tell, a song to sing, something she wants to tell you for the millionth time, or a story that Israel or Ruth already told you but she has changed one tiny little non-important detail that for some reason makes the whole thing hilariously funny to her. And while we're on the subject, I don't think she fully understands the concept of knock knock jokes. Hers look a little something like this-

     Emma: Knock Knock. Who's there?

     *waits for you to say something*

     Emma: have you ever seen a bear who hurt his arm because he wasn't strong and he was a baby?

     *fierce laughter ensues*

Sometimes Ben and I will talk in Emma speak. You just can't help yourself. She has the most adorable voice and somewhere along the line she ended up with my little tiny barely noticeable speech impediment. 'R's are very hard for her to say. Impossible really. So cuteness is automatically magnified 50% by this (on her, not me. Let's hope she outgrows it like I did.) And other things she just doesn't say correctly and we all go along with it. Here are a few examples of Emma speak:

Theedo is Theodore

hanitizer is hand sanitizer

sweekets are secrets

poppart is poptart

tinackskis is gymnastics

PBSA is VBS - no idea where that one came from but it makes me laugh.

She also uses the phrase 'in case' incorrectly. An Emma speak example is: Can I put on my bathing suit in case I can do tinackskis? Or, Theedo wants to be suctioned in case he can breath.

You might be pretty but God is prettier. She's a good dancer but God is the best dancer. He's nice but God is nicer.

Her favorite movie is Realpunzel because they have none steps or ladders.

She was singing to Rambo the other day- "Everything is pretty what God made, even rainbows." And her other favorite song to sing right now is "No one comes to the Father except me." - Not sure her theology is right on that one.

She's adorable and she knows it, yet she still seems so sweetly unaware. I love that girl.

As far as Rambo goes, well, he's pretty much the same. He did sit in a Bumbo this week and really enjoyed it. That will hopefully help him strengthen stomach, back and neck muscles so he can sit up on his own.

He's getting big but has seemed to hit a plateau developmentally. He's been very socially interactive so I guess that's a step. He still raises a ruckus when he's not happy and keeps us all busy. Everyone keeps saying that this is just a season but I think we are realizing it's a new path for our life - not just a season. I love him still and will gladly walk down that new path. Most days. Today was not one of those days I was glad to be walking it. I would have rather been walking out my door and down the street. But I will survive. I will survive. As long as I know how to love I know I'll be alright. Because I'm a surviver. I'm gonna make it. I will survive. Keep on surviving.

Okay, my tribute to Gloria and Beyonce is done. I'm going to go think of something amazing to make out of ground beef for dinner.