Saturday, December 31, 2011

Resolutions Schmesolutions

Here's how we started out the new year...



Recognize the background? That's us back at Hopkins. We woke up first thing in the morning to find that somewhere in the wee hours of the morning his Gtube had fallen out (the balloon inside had burst) and the hole was practically closed. We tried several times to get it back in but to no avail. Thankfully we had a great outcome and this was me after they got it back in...





A little fragged from very little sleep but happy we were going home! Because the hole had closed so much they had to use catheters starting at a smaller size and gradually increase the diameter until we reached the gtube size. It took a little bit of effort but all in all it added up to the shortest ER trip ever. They were very expedient this time and they even sent us home with some smaller catheters so we can do it ourselves if the need ever arises again. A++ this time, Hopkins. 

*Now to our originally scheduled post, which is kind of apprapo.*  


Here's the thing about resolutions: who needs them? Who wants to be reminded of how they've failed the past year and how they will, most likely, fail again in the coming year? All resolutions do is make you feel bad about yourself. They say, 'Hey, you did a,b, and c wrong, you stupid silly person. Try me again and see if you can't do any better this year.' And then they mockingly laugh in your face. Resolutions should have died back when schools stopped using E as a grade. 

Here's the other thing about resolutions: I have a few.

Believe. Enter. Do. Possess. Walk. Own. Trust. These are the verbs that God has been pressing into me the past two months. I can't go a day without at least one of those words being a prominent part of my day. So this year today I resolve to live those. How? I'm not sure but I think this is how I will start:


Each night without a nurse is another opportunity to catch up on lost time with Rambo.


Every weakness is a chance to let God be strong.

Each miscommunication is a chance to be more deliberate about what I say.


Any bad news is an increase in faith.


A messy house is a thankful heart for my children and things that make it messy.


Every disappointment is a new place for God to fill.


Dirty dishes in the sink and a laundry room filled with dirty laundry... well, I'm still working on those...

Oh, and I want to do 100 jumping jacks a day. Ben won't let me go running without a) a gun or b) a dog. One of which we have a plethora of and the other we don't have any. I see his point and yet, I still will not strap a 12 gauge to my side while I try to exercise. And since a membership to the gym is certainly not going to happen this is the option I'm left with. Considering I haven't run since college, I think jumping jacks is a good starting point. A drop in the bucket, mind you, but a start none the less.

So there you have it, world. Let's see how well I do. By the way, this is in no way saying there won't be posts where I'm venting or yelling or crying or mad or sad.... don't worry. But maybe this year there will be less.

2011, you can shove it. You pretty much sucked. 2012, I welcome you with open arms. You've kind of had a shaky start. Maybe you just forgot the new year had started. Please don't disappoint!!  


You shall walk in all the way which the Lord your God has commanded you, that you may live and that it may be well with you, and that you may prolong your days in the land which you will possess. Deuteronomy 5:33









Friday, December 30, 2011

Hmmmm....

"I feel......cold." 


10 points to anyone (except Ben) who can guess what that is from.


I do literally feel cold because it would appear that winter has finally hit. But more than that, today I feel heavy. Rambo is thankfully doing well and that cold we were trying to hold at bay has started to move from him to me. I would rather it be that way but I feel this cough deep down in my chest. You know that kind where you feel it but you can't quite get it? Yup, that's the one. Other than that I feel fine and Rambo seems to be settling back into normal.

Yesterday was trying to say the least. We had to take Rambo to the doctors to get his monthly shot in each leg. No big deal. But the nurse must have mentally gone on vacation because she did a horrible job. I don't say that lightly. On the first shot she didn't have his leg down well enough so the needle came out and she had to put it in again. Actually, I can't say for certain the needle came all the way out. I don't remember. But I do know she had to push it back in. Whether partially or all the way, I'm unsure. Then on the second leg the syringe actually came disconnected from the needle so he had a needle sticking out of his leg for no reason. The medicine spilled everywhere. Result? Rambo only got a partial dose of the medicine. Only a specific amount of this medicine gets sent to the doctors so there was not any left for him to get the full amount. The nurse said "We'll just have to go with that." Not that there was anything else she could really say, but it seemed so casual to me. Here's hoping he doesn't get RSV. 

Then there are the pharmacies who don't do what they say they will do. Me spending 3 days trying to get 1 prescription. Of which 2 of those days I spent waiting 40 minutes in the actual pharmacy because they hadn't yet done what they said they would do. It's the same with one doctors office getting in touch with another one.

It was all too much. I don't know how I'm supposed to be a doctor, nurse, pharmacy, insurance company on top of wife and mom. Why can everyone else get away with not doing there job, or doing it poorly, but I can't? And I think that's the catch. I don't desire to do my job poorly. I want to be good at it. I want to wake up everyday and try to do the best I can with my husband, my children, my responsibilities. Maybe all these people were just having a bad day. It happens. But it all ends up on me. I have to be the one staying on top of everybody and keeping everyone else straight. 

On top of that, yesterday morning was a very reflective day for me. I don't know why exactly. But I was thinking about how Rambo is a year old. Already. 12 months have passed and we are not any closer to getting him off any machines then we were when we brought him home 8 months ago. Next year could literally hold the same exact thing this year did. 

The same. Nothing.

He's growing for sure. More outwards than upwards, but growing non the less. 21 pounds at yesterdays appointment. He's getting there developmentally - still behind - maybe always will be - but he's trying. Health-wise nothing is different.

Oygen.
Trach.
Suctioning.
Nebs.
Feeding tube.
No swallowing.

That's where there has been no growth. None. 

Next year could be the same.

I sigh. Whether in sadness or frustration or realization I don't know. But it feels like a complete thought. And that's about as deep as I want my thoughts to get concerning this.

As we speak my dear sister in law is in the hospital having her baby boy. Yay Lauren!! I'm so happy for you and your family. Truly I am. But it makes my heart hurt. Knowing that her son will one day surpass mine. Knowing that he'll attain things in his first year my son may not even see in his second. I didn't think it would be this hard. (Although, when she found out she was having a boy I did want to curse the sun moon and stars. :) Why couldn't it be a girl???!?!) Not stealing your joy, Lauren. I am happy beyond words for you. But it does bring back memories of things I missed. Things I never got to have with Theodore. Time that slipped away. 

On the flip side, I just went over and held Teddydore because he woke up from his nap and he gave me that sweet sublime wonderful smile. Indeed, I love this boy. And I think that is the thought I will leave with.                 

Wednesday, December 28, 2011

Now wait just a minute.

Everyone please stop what you are doing for a moment. Put down your pencils and look up. Because I received something for Christmas that is worth some attention.

Something breath taking.
Life changing.

Dream making.
Epically epic.



It's okay to be jealous. I know they are awesome. 

My dear cousin and her husband got me THE mugs. And guess what....


Yup. That's eggnog. Just call us Clark and Eddie. Thanks, Theresa and Dewey! Ben and I are gonna get you something "*wink* real nice."
I must say those mugs really did round out our Christmas nicely. We were extremely busy Christmas weekend visiting both sides of the family, opening presents, and eating copious amounts of food. Moving Rambo isn't the easiest thing in the world. Especially when you're taking ALL of his stuff.. not just the portable. Which of course, we had to because we were going to be gone for hours at a time. But last night, we were finally able to sit down and recover by drinking some eggnog in our mugs. 

I am complete.
Rambo apparently needed to summon some Elvis spirit to recover because I found him taking a nap yesterday looking like this...


He must have been all shook up. 

So, my fellow Americans and all the rest of the world, I once again bid you Merry Christmas. I hope you all had lovely weekends.

Friday, December 23, 2011

Skidoosh.

For those who don't know... the past two weekends we have been without a nurse. Now, in the scheme of things that's not so bad. It really isn't. I mean, I was up with him day AND night for the first two months after we brought him home. I'll take three nights a week... if I have to. And the company called today to say that they finally found a nurse to fill in on the weekends. This weekend, at least. Not Christmas Eve but tonight and Sunday night. And I need to do orientation with the nurse they send tonight so I'll still be sleeping downstairs BUT we have a nurse. I repeat, we have a nurse. 

Back to what I was saying before: Having to stay up on the weekends with the boy isn't that bad. Or.... it could be worse, let's say that. I'm keeping my head up and trying to not have a pity party. But this does lead me to all the wonderful little things I forgot I would be dealing with through the night.

Cats. On the couch. On top of me.

Sleeping on the couch and not being able to turn to my side and put my knees up. 

Again, sleeping on the couch and how my back really doesn't like it.


Setting my alarm to feed him, warming up his bottle and then falling asleep before it's ready only to wake up 45 minutes later realizing the bottle is still in the bottle warmer. 


*beepbeepbeep beepbeep* and the constant repositioning


Trying to find the trach to get the suction catheter down without turning on every light and waking Rambo up.


Him coughing around 2am- constantly for an hour. (This is a newer habit he started after having that wretched doctors appointment in November. Yeah, remember that one? He still isn't straight from it.)


Getting only around 20 minutes of sleep at a time.

Rambo waking up at 6am.

All that being said, three nights out of a week is do-able. Tiring, sure. Frustrating, yes, But do-able. And hopefully I'll only have to do it once this weekend (so they say). 


Also, he is getting a molar. So not exciting. The poor boy is miserable.


I hope everyone has a very Merry Christmas! Enjoy your weekend. And in the words of tiny Tim (who I'm honestly not a big fan of - don't hate me.) God bless us. Everyone. Or in the words of Ellen Griswald, 'It's Christmas and we're all in misery.' Hopefully that is not the case. 



 









 

Wednesday, December 21, 2011

It's beginning to look a lot like Christmas


Can you smell the cookies baking?
(Or in our case right now, the bacon... No relation to Christmas. Just what we were in the mood for.)


  Do you hear Bing Crosby singing Mele Kalikimaka, the Hawaiian Christmas song? It's the thing to say, you know.

  


Are your stockings hung by the chimney with care??



Did you remember to water the tree? Nobody wants a thousand dry dead needles to pick up in a few weeks. We all know the vacuum cleaner does not work. (You're welcome.)


 
Have you stopped and breathed it in and remembered?


Holler!!! We have!! And Christmas will be here soon! 

It took me a little while to 'get into the mood' this year. Maybe it was the warmer weather. Maybe it was the fact that we are home this year. Maybe it's because I started buying presents in September. Maybe I'm just a cottonheadedninnymuggins. In any case, I am now officially in the mood. Bring on the crowds (I say this because I can't actually make it to the stores...), and the eggnog, and the parties (which of course, are now pretty much over because Christmas is in 4 days). So maybe I'm a little late this year, but at least I finally made it before Christmas day. 

We debated letting the kids open a present early last night. Ben asked Ruth if and why she was excited for Christmas. Her answer? Yes because its the day Jesus was born. 

Right answer.

Open away, kids!
Thank you, God, for Christmas Day! Thank you, God, for Jesus! Thank you that we are home together! 

Rambo is excited this year too. He just doesn't know it yet. Hopefully next year will be one of more realization for him. 

Until then, keep one hand in your pocket and the other one making a peace sign. Or else you might find yourself in need of a knife but only able to find spoons.

 
 

With both feet.

Something a little different for today. Linking up with Ann Voscamp. You may have seen this under my Daily Cup page. Using it as a reminder.  Reminding myself to live. Right now. Take each moment, each new circumstance. Jump in with both feet.

Rambo is here.


Rambo is home.

Life is different.


Embrace.

Don't wait.


See I have placed the land before you; go in and possess the land which the Lord swore to give to your fathers; to Abraham to Isaac, and to Jacob. See the Lord your God has placed the land before you; go up, take possession, as the Lord , the God of your fathers, has spoken to you. Do not fear or be dismayed. The Lord your God who goes before you will Himself fight on your behalf, just as He did for you in Egypt before your eyes, and in the wilderness where you saw how the Lord your God carried you just as a man carries his son, in all the way which you have walked until you came to this place.

The land is before me. Indeed I am IN the land, and no matter the things God has done for me bringing me to this point (goes before me, carries me, seeks a place for me to camp, fire by night, cloud by day) I still fight against it. I still say no. I'm still afraid.

The Lord was angry saying, 'Not one of you shall see the good land which I swore to give your fathers... But as for you, turn around and set out for the wilderness...'
Then you said to me, 'We have sinned against the Lord; we will indeed go up and fight, just as the Lord our God commanded us.' And every man of you girded on his weapons of war, and regarded it as easy to go up into the hill country. And the Lord said to me, 'Do no go up or fight, for I am not among you; otherwise you will be defeated before your enemies.' So I spoke to you but you would not listen.

Too late.


Instead you rebelled against the command of the Lord, and acted presumptuously and went up into the hill country. The Amorites who lived in that hill country came out against you and chased you as bees do, and crushed you. Then you returned and wept before the Lord; but the Lord did not listen to your voice nor give ear to you. So you remained in Kadesh many days, the days that you spent there.


Then we turned and set out for the wilderness....


Don't wait. I can't wait. The Lord has promised good to me. To be my portion and my supply. To GIVE me this land. I don't need to fight - He will do it for me. Don't wait. The wilderness waits for me if I don't trust. Believe. Do. Enter.

Before it's too late.

*Deuteronomy 1 and 2:1*

Saturday, December 17, 2011

Are you ready for some football?????!!!

Um... no, definitely not. Not this year. The Colts are 0 - shameful, and the Ravens are doing well. Barf. So instead, let's get ready for some pictures!!

We celebrated Rambo's first birthday last night with family. We tried to keep it small but when you have two decent sized families, 'small' usually means 20 or so people. But that also means more delicious food! 

The night began with.....


It began with the making of this cake anyway. The eating came later. Spice cake with sprinkles. It has nothing to do with baby or boy or Rambo or camo, but at least it was made. I am not a baker and have never claimed to be. It was me, a cake mix, a Chinese lady who has never baked a cake, and sprinkles. Lots and lots of sprinkles to cover up the horrible icing job. All I can say is- it was edible.


Of course, the night really began with the man of the hour:




Then lots and lots of food which we didn't get a picture of. But let me tell you, it was good. Chicken wings, chili, meatball subs, salad, cheesy rotelle dip, and more. Your mouth is watering, isn't it? 

Then presents, visiting, dessert....


Towards the end, the adults found themselves enjoying a kids look and find book (which was seriously way hard) and playing video games.


And then.... this is what I did.....


Ahhhhhhhhhh. Hippo was happy too.



And if you'll be ever so kind (trust me, you'll be glad you did) you can check out a wonderful video of the birthday boy here. Much thanks to Laura at In His Grace Photography for taking those pictures one year ago and putting this montage together.

Thanks for sharing in Rambo: First Year with us!!









Wednesday, December 14, 2011

364.

One year ago I was fat and miserable.

I was tired and swollen.

I was afraid, anxious, overwhelmed and excited.

I was pregnant. Bleh.

I don't know that I've ever told you this before but I hate pregnancy. I hate it with a deep passion. I'm not sure how I've managed to get through four of them. Four. Ugh. Just thinking about it makes me shudder. I've tried embracing pregnancy - doesn't work. I've tried enjoying pregnancy - really doesn't work. For me it always comes down to- take it for what it is and get through it. Yes, you are fat, forgetful, and miserable. Deal with it. There's nothing you can do about it. 

That being said, I do love children. My children. I love my children. (Let's not get carried away.) I love them from the moment I find out I'm having them until, well, present tense. They somehow find a way to be innately worth all the pains and troubles that come with pregnancy. Not enough to make me forget, but apparently enough that I've done it several times. 

This fourth pregnancy was the pregnancy to end all pregnancies. It was a roller coaster ride physically and mentally the likes of which I've never experienced. From legs constantly falling asleep to irregular heart palpitations to high blood pressure to extreme amounts of amniotic fluid - to not knowing if they were going to induce me each week to twice weekly stress tests to weekly ultrasounds. You get the picture. I won't bore you with all the details that no one else really cares about, but that I would love to share for your pity. I was done. I'm not sure how many times I said that during those 9 months but I'm pretty sure it came close to 1,000,002. 

And now it's done. It's been over for 364 days. Tomorrow marks 365. 

One entire year.

And I am SO glad.

Right here is where I would love to say that I was glad because he was here and some of the unknowns were now answered and he was semi-okay. And that was a big part of it. But mostly, I was just  reeeaaally happy to not have a baby in my body anymore.

And now he's one. Ridiculous. 

Unbelievable.

He's even started in the past two days acting older. I'm not doing the whole 'mommy-parting-with-baby-stage-sad-her-baby-is-growing-up' thing here. I'm serious. You saw the picture from the last post. Hello... how do you go from not doing that to suddenly doing that? He's seriously entertaining himself. He actually reached out to grab something with two hands because he couldn't get it with just one. He's never done that before. He's becoming a little man. A short still unstable big headed little man. With curly hair. Who is this kid?

He's Rambo. And he's mine. :) And yes, I still say that despite hating pregnancy to the utter most parts of the earth and despite everything we've been through with him - he is worth it. :)

 

   

Tuesday, December 13, 2011

Mary did you know?


Aunt Mary, your sister Dolly wanted you to know that despite her best efforts she was unable to kill the Christmas cactus. Well, left to her own devices she probably would have, indeed, succeeded in killing both of them. But she graciously let me take them home in an effort to raise them from the almost dead. And it appears they are happy. And blooming! Okay, only one of them is blooming but I'm hoping the other one will bud in it's own good time. It is definitely looking up.

And, looky here, who's trying to keep up:


I guess he didn't want a plant to show him up. I'm gonna be honest - it was close. I was PRE-TTY pleased when I saw this cactus budding. But it did make me at least just as happy to see him putting weight on his arms. It was only last week when he needed maximum support on both arms. Go, Rambo, go!

T-minus 2 days until Rambo: First Year. I can't believe he actually made it. Let me rephrase: I can't believe I actually made it. On the other hand, I'm going to hold off on saying that until the 15th is here. Who knows what can happen in two days. Thus far everything is hunky dunky.



 

Friday, December 9, 2011

Say my name, say my name.

The occupational therapist asked me the other day if Rambo turns his head when I call his name. I paused. In that moment a list as long as... well, a really long list... of all the things he is called flashed through my mind. 'Which one?' was all I could mutter out. This poor child will never know his name because he never gets called the same thing two times in a row. He doesn't have a chance! And it's all my fault. Below is a list of all the names he gets called each day.

Rambo
Theodore
Teddy-dore
Theedo
Bubs (I know... this one is awful but it just comes out.)
Teeodore (pronounced like his nurse from the islands)
Teddy Rambo
Theo
Teddy

And that's just off the top of my head. As if this kid doesn't have enough problems. Of course, he probably only hears half of them. Hahaha - I made a funny. Cause he isn't hearing out of his left ear. Get it? He only hears half.... No? 

Aaaaaaaanyway.... his first birthday is arriving quickly. Which just feels weird. Good. But weird. I wanted to have a big shebang but we're going to keep it to a small family thing. Avoiding the hospital until after the new years is my goal. 

Our Christmas tree is up. Presents are wrapped. Stockings are hung. Cousin Eddie is in the driveway. And the kids are eagerly anticipating Christmas Eve and Christmas morning. 

*By the way, favorite scene in Christmas Vacation is when Eddie knocks over the wooden display on the table in the living room while he and Clark are talking over eggnog in the reindeer cups. Hi-larious.*

**Also, I want those cups.**

Signing off for now. Happy December 9th, everyone.  

Monday, December 5, 2011

Do you hear what I hear?

Well, if you're Theodore and you're listening with your left ear the answer is no. Yes, folks, that's right. It appears Theodore is deaf in his left ear. 

For the moment.

This is an important fact that I am trying to hold on to. You see, he also has fluid in both ears. Why that is there we don't know, but it could be that the fluid is what is causing his hearing to be poor, nay, nonexistent in the one ear. That is what I am hoping. Can you imagine? Deaf in one ear? I mean, I guess that's better than both ears, but seriously? One more thing? My prayer is that is not the case. 

Today was one of those days where I just couldn't process that information. I'm trying desperately to fight the 'what ifs' and keep the faith, as it were. I'm trying to think positively. I'm trying not to think about all the things Rambo is missing and will miss out on. I'm trying not to get ahead of myself. 

I'm trying.

But tonight as I sit here and wait for our nurse, I am defeated. All the things I am trying not to think about plague my mind. I'm trying to take every thought captive but instead they captivate me. 

So here is my physical deliberate attempt to get control:


It is possible that once the fluid is gone his hearing will improve. As I said before we don't know why the fluid is there; it could be residual from when he was in the hospital, it could always have been there. The question arises - has he ever been able to hear out of that ear? We don't know. The next step is to take him back to Hopkins and have him sedated so they can look more closely at his inner ear. This will be able to tell them what the true issue is. Even though his right ear had fluid in it the *audiologist was still able to get really good responses in that ear. That is good news.

*Yes this is the same audiologist that asked if he could breathe quieter. I'm proud to report that she did not repeat the same offense today. In fact, Theodore did extremely well and barely seemed to notice anything was going on. Of course, I guess him not hearing anything contributed to that fact, but I'll take whatever I can get. 

It's late. I'm tired. Our nurse will soon be here and I will be snuggled up in my electric blanket in no time. That is what I am going to think about tonight as I drift off to that sweet release of sleep.

Goodnight, all.