Wednesday, October 31, 2012

First things first.

Currently the kids are making me breakfast on the couch (a variation of breakfast in bed) which consists of oatmeal, granola, coffee, and KoolAid Jammers. They slept in a bit and that is birthday present enough for me. Especially when it is immediately followed by their rendition of 'Happy Birthday'. They have already told me that I will get their special spa treatment today and if it's anything like last time it will involve everything from a foot massage in a Morton salt foot bath to getting my teeth flossed. This is the real deal, people. 

I love my kids.

Any second I will be ordered to go sit on the couch, turn on the tv, and put my feet up so I better scoot. 

Happy birthday to me! 

Friday, October 26, 2012

That's all part of the experience, honey.

I'm not sure if lately I've come across as frustrated or not. I don't mean to be. And although my facebook posts may be entertaining, they are, unfortunately, true. And 99.95% of my frustration has to do with the nursing company. We have been up and down so many times with them I can't even tell you. Being promised a nurse and then not getting one. Changing our schedule around because we were told it would, without a doubt, make it possible for us to get a nurse. Orienting a nurse who says she'll be back and then changing her mind. Nurses showing up late - like half an hour to an hour and a half late... and not being apologetic at all. Someone calling and asking me where the nurse was but the only information they give me is that she missed her exit. As though there is only one exit between here and Baltimore. 

It is never ending. It is so ridiculous, in fact, that I feel like God has got to be showing me something, but all I can come up with is that people are stupid. Really stupid. I'm not so certain that's what He has in mind.

But I'm still convinced it's true.

And it is having a negative affect (affect? effect? I don't know) on me. I am so scatterbrained; more so than usual. That is not good. There isn't too much wiggle room in that area for me. I'm misplacing stuff, I'm short tempered, I'm tired, I'm forgetting what I'm doing mid doing it. And I am busy. A lot of it stuff that I want to be doing which is leaving less time for the things that I need to be doing.

And, honestly, who needs a broken dishwasher during a time like this?! It's a crisis, people. Plus, I missed the stinking trash pick up again. Dang. I have cardboard boxes piled out the wa-freaking-zoo. All in time to get soaked and scattered in a hurricane. Awesome. 

Here I go again being negative. So my quest for contentment continues. Right now in the mess and muck. Right here in the hard and helpless. Counting 1000 gifts in my journey to joy. Actually, I'm almost halfway there! 

#434. $2 books.
#435. Children sleeping in
#436. Hardees taco salad from my dad.
#437. Dog acting well with visitors. (you know, before he pooped on my floor)
#438. A good night's sleep.
#439. Aloneness with God - even if forced.
#440. Theodore's perfect hearing!
#441. A finished painting. 


       

  

Wednesday, October 24, 2012

Ew.

We did it. We made it to the hospital by 5:30am. Even the hospital was running on time this morning so Rambo had his procedures done with little ado. It's over and we are home. There was a point during recovery where I didn't think we would make it. Rambo was coughing up huge blood clots and his trach was thick with mucous and blood. I thought for sure we would be admitted. But thankfully, they let us stay a few more hours to see if he could push through and he did! Instead of recovery being two hours it took more like four.

Rambo had his ears and throat checked out from..... head to toe?    ...They were completely evaluated. Aaaaannnnnd, drum roll please------------ his ears and hearing are perfect. No fluid. No tubes. No hearing loss. Can I get a revolution?!?!?!

That is the good news. Here is the bad news:

(I warned you with the title that this might be gross.) That is his throat. The little white piece you see is the top curve of his trach. Yes, you should be seeing a lot more of it. That 'lump' is scar tissue and inflammation. It is not blocking his airway to his lungs but it is blocking all the air that gets above his trach making it extremely uncomfortable for him when he uses things like his speaking valve. It also makes him uncomfortable in general and even more so when he is inflamed from tracheitis. Which seems like all the time anymore, but that story comes along later.

So here is what they did:


They chemically eradicated it. At least for now. Once all that black is gone you will be able to see all of the trach that you should. They did the same for the area right outside the stoma (where the trach goes into his neck). 

He was not a happy baby. 

Hopefully this will not need to be done again. Ever. But I think those are high hopes. 

On another 'Rambo note', he was pleased to yet again have the mighty fall. The anesthesiologist felt pretty cocky about getting an IV. He said that it's what they do ALL day; that everyone says they are a hard stick; that the anesthesia dilates the veins and makes it easier; that he would have no trouble. 

Tsk. Tsk. Tsk.

6 sticks later and they finally get an IV. The anesthesiologist admitted that he's a tough one and, although the anesthesia USUALLY helps, it didn't in Rambo's case. We tried to warn him. At least Theodore was asleep for it all.

Now back to the tracheitis- it looks like he still has the difficult bug to kill. And it is, indeed, being difficult. The problem is that we can't get the medicine to treat it. Apparently it is an extremely expensive ($5600) medicine. The pharmacy has to order an entire box and it is nonreturnable. Theodore doesn't need an entire box. Of course. So the pharmacy won't order it. They said they do not have a single other patient on that medicine. They called all the other local pharmacies and they all have the same issue and we may need to get it from Hopkins. Which would be fine if we were still at Hopkins, but we were 10 minutes away from home when I got the call. They are being really good about trying to figure out a way to get the medicine quickly and locally, but I'm not so sure it's going to happen. It just can't be easy, can it?

That is all from me. I've been up since 2:50am and I can barely keep my eyes open. Goodnight, all.

 

Monday, October 22, 2012

The boy...

...is on a mission to go without oxygen. Which WOULD be great if he actually could. Alas, his body just isn't ready for that yet. But I will tell you that if I thought I was busy before.....

I WAS WRONG.

There is no stopping this child. He is fast as lightning. He's practically kung fu fighting. His tubes don't go across the room but his body does. It's constantly moving his stuff from one outlet to the other. There and back again. (Lord of the Rings, anyone???) 



See those marks at the top of the entertainment stand? Yeah, those are teeth marks. He is chewing on EVERYTHING. As long as it's wooden or paper and clearly not a toy or something appropriate for his mouth. He chews on the side of his crib and ends up with paint chips in his mouth. We even gave him a potato today to gnaw on and he wouldn't touch it.


You are silly if you think he's going after that brightly colored box. It's wires. Wires! All the time! All.The.Time. I'm not sure how he's going to make it to his second birthday without electrocuting himself. But it will be a miracle if he does.

The only way to keep him under control and CONSTANT watchful eye is to contain him. Like, I literally put a big plastic container over him. He's lucky if I throw in a toy or two, maybe a potato, and call it a day.


Okay, it's not exactly a big plastic container but it does have buckles and you know I use them. I also use the tv. You can't make me feel bad. I have four kids. FOUR. 

FOUR. The tv is a God send as far as I'm concerned. And let's be honest, his attention span is that of maybe an episode of spongebob. I'll take it.

It's crazy. CRAZY I tell you. He will not be stopped. 

On the bright side, he will not be stopped. This boy has not let anything get in his way from doing what he wants. And thank God he actually wants to do things!! And somehow we have still managed to fit a few fun things in there as well.




Like fall wreath making.



Which he, of course, had to be a part of.
 


And currently he is chasing Israel around the living room. It is fun and busy times at our house. And Rambo's newest habit - chewing on his G tube especially during his feedings. Which always ends with the medicine port coming open and food going onto his clothes and chair instead of into his belly. Yuck. 

This week Theodore is having a few procedures. We leave EARLY Wednesday morning and hope to be home that same day. Do you remember that post I wrote a while back about a procedure that was supposed to be done but wasn't? Well, this is take two. And HOPEFULLY this time it's all worked out. It is still set up as 'outpatient' but since it's in the new Children's Center they are set to handle all of the issues and concerns that might arise with someone like Theodore. Or so they say. But we know how that goes.  

Don't we?

Nope. Not at all.
 

Anyway... they have requested a bed for admission if the need arises. My hope is that it won't. It's in the early morning, so even if a little longer recovery is required I still hope to be leaving by late afternoon. Thus far things have gone smoothly in getting him ready. Even the one thing that I thought would be a hiccup has turned out to be completely fine. He is still on a blood thinner from the clots he had this summer.




Poor buddy. His legs are torn up. But we got the okay from his hematologist to stop the shots the day before and start the day after.

And we should have definitive results from this hearing test at the end of the day Wednesday. 

I'll keep you posted, as always. In the meantime enjoy a few more pictures of some dandelions.




I may be slightly obsessed at the moment. But they were so pretty with the sun shining on..... Nevermind.


Tuesday, October 16, 2012

I SHOULD be....


I bet you'll never guess that she's excited. It's because we SHOULD be doing school work but the oldest is still asleep. And how can I say no to THAT? It's pretty ridiculous, but she makes me laugh so she wins. 




I can't even tell you how much these girls are like their dad. But here is the proof so I probably don't have to say anything. Pray for me. :)

Now onto Rambo, who I don't have any decent pictures of because he never stops moving. NEVER. STOPS. MOVING. He is doing great! Woot! He fought through last weeks fevers and sickness like a champ. (So did all the kids, actually. I seriously couldn't ask for better kids.) He is doing far better this week and my hopes are that he'll stay that way.

We went to a cardiology appointment yesterday. (Thanks to my friend Ashley we were actually able to make this one! And we tore the place down! Or up.. or whatever the saying is.....) Rambo had an EKG and an echo and we were given the good news that things appear stable. Holler! I did ask the cardiologist a question about Theodore's heart rate. I've noticed that just in the past week it has taken a huge jump down of about 20-25 bpm at all times. When I asked her if it was normal she said, "Hold on. Rambo? Normal? Don't be silly." Yes, his reputation precedes him. So we went with 'acceptable' instead of 'normal'. And all is well. His heart rate is slightly below the norm when he's sleeping but she is not concerned. However, if it drops about 10bpm more than we should have him checked again. 

There is a lot in the works here with behind the scenes stuff concerning Rambo: nursing companies, nursing hours, pediatricians.... And hopefully soon I'll have news on those fronts. Let me clarify. Hopefully soon I'll have GOOD news on those fronts. 

For now I think it's about time to wake up Israel, who I can't believe is still asleep, and get some school started. Unfortunately, it has to be done.    

Sunday, October 14, 2012

I am an idiot. Part deux.

*Something technologically incorrect is happening with blogger so I'm hoping this will still post.*

I am an idiot. I really really am.  I am a creat-or. I have a creative mind and not so much a technological mind. I am artsy and whimsical. I paint and craft and crochet and take pictures. I don't build machines or know how a vacuum works. And maybe just MAYBE I have problems following directions. I CAN DO THINGS MY OWN SIZE! I can usually figure out my own way to get the end result that I am seeking. 

That may be why baking has never been my forte. Do you know that when you bake you have to do things EXACTLY they way they say or you could mess the whole thing up? That's crazy! Baking is way too technical for me. But I still keep trying like a fool! 

Case and point:

Let me set the scene for you. It's evening. My dishwasher is broken so the counter is cluttered with clean and dirty dishes. I want to make bread. And I'm also trying to make dinner that the kids will inevitably snub their noses at and I will hear "I don't like it" at least 2 times per child. We haven't had homemade bread for awhile and believe it or not I can actually use the bread maker.... usually. So I was looking forward to some homemade bread for the next day.

Scene 1, Act 1- I clean out and dry the loaf pan the bread is baked in.

Act 2- I gather all the ingredients, which I practically know by heart.

Act 3- I put all the ingredients in order into the pan, put it in the machine and press start. Presto. In three hours we'll have fresh bread.

Scene 2 (2 hours later), Act 1- Finish the dinner which only 2 out of the 3 kids hated.

Act 2- Eat my dinner.

Act 3- Eventually clean up the dishes and what to my wondering eyes should appear on the counter? The mixing paddles. To the bread machine. Ugh.

Act 5- Look in the bread machine and see that, indeed, just as I suspected, nothing has mixed and I'm left with watery, sweet mashed potatoes on the bottom and even drier flour on top. 

Act 6- Close the machine and don't look at it again until..... never? 

End scene.

It's true. I haven't even looked at it again. And I really don't look forward to cleaning it up. 

Example numero dos:

Tonight. Cookie baking! I found a great recipe online- double chocolate- who can say no to that? Let the fun begin! But, in truth, the trouble began upon looking at the recipe. And I'm going to be honest here so I hope you all get a good laugh in at my expense. I found the recipe on a blog and the girl had just bought her first KitchenAid mixer. She mixes the wet ingredients first. Then she moves onto the dry ingredients and says to whip them until they become a meringue. No lie- my first thought was "No way. KitchenAid mixers are great. I didn't know dry ingredients could be mixed into a meringue. I hope my little handheld electric mixer can do that. And also I really need to get a KitchenAid." I seriously wish I were kidding. 

I SERIOUSLY wish I were kidding.

Fast forward 10 minutes or so and I'm trying to whip powdered sugar and cocoa into a meringue. 

What was I thinking?? My entire kitchen is covered in an incredibly fine layer of powder. 

And the worst part is (okay, maybe not the worst part- that was pretty bad) that I had finally convinced myself that my Proctor Silex handheld electric mixer was certainly no KitchenAid, when I saw my entire bowl of wet ingredients just sitting there. And I ran over to the recipe to see what I was supposed to do with them and I couldn't find them anywhere on there!! 

I bet I don't have to tell you why.... 

That's when I realized that I am a big fat baking failure. And also an idiot. In case you didn't know it- you can't mix dry stuff into a meringue. It doesn't work. I dare say it's impossible. 

The good news is that it was salvageable and I am left with some darn good double chocolate cookies.

Unfortunately for me I will probably try again but not have learned my lesson at all. Instructions are for people who don't know what they're doing- not me.       

Friday, October 12, 2012

Taraxacum.


A dandelion. 

A single weed in the middle of the yard.

So who really cares, right?

It's a weed. Basically a dead weed.

It will be tromped under foot and fall apart and be ugly.

And who cares that a weed's seeds are being spread all over the yard only to leave more weeds for next year that bees will inhabit?

And those bees will sting my children's feet.

And make the yard look like an utter mess because they inevitably grow faster than the grass.


The bloom is gone. 

And I realized that's why I stopped and ran back to the house and grabbed the camera and a towel to kneel on to take a picture of this.

A weed.

Because it's not until the flower is dead that it becomes something worth taking a picture of.

When the dandelion dies, only then does it become beautiful.

And it's a picture of me.

Only when I die to myself am I fully alive in Christ.

And don't I want that? 

I don't want to be an ugly yellow bloom that's not worth a second look.

I want to be something that makes t-shirts and tattoos and logos and pretty pictures. 

Something worth keeping.

Something worth running back to the house for.

God already told me I was worth it - worth dying for.

Now I need to live it, through death. 

Because dying is living and living is Christ. 



Thursday, October 11, 2012

Sleep.

Sleep is a wonderful thing. I love sleep. I LOVE sleep. It never fails to be the one thing that I look forward to at the end of the day. And, usually, the one thing that gets interrupted. (Okay, not true. As a mom, most things that are not completely kid centered tend to get interrupted.) It is the one thing I don't get enough of. And it is the number one thing that I have been choosing over everything else lately. 

NAPS ARE WONDERFUL. Said my husband never. But he's obviously a communist, so what does he know? I, however, say it all the time. And I mean it. Won-der-ful. 

Sleep > housework.
Sleep > homework.

This is my mantra lately. And I think it's because I haven't been getting much of it. I'm not really sure why but I've had trouble getting to sleep, staying asleep, falling back asleep when I wake up at 3am. 

 
Theodore has not had the same problem.



No. Whereas I would give anything to lay my head down and sleep peacefully for 8 hours.... or an entire day... he would rather fight sleep. Although, I must say that its generally a delightful fight and not so much awful. GENERALLY. Don't kid yourselves- he can be a nightmare. As was the case 2 nights ago. Obviously not when these pictures were taken.

In a perfect world I would go start schoolwork now so that I could take a nap in a few hours. Then maybe make some food and do a load of laundry so I can take another nap and still feel accomplished and have a dust free house. Not really. In a perfect world I would have enough money to be able to hire a housekeeper and a private tutor. And a full time nurse. So this would be more of a realistic perfect world. 

I say "Naps for everyone!" I hope you all get to enjoy one today. Except for you, Ben. 

Tuesday, October 9, 2012

Fall.

Some things I like about fall.

The skies. Always intricate. Always pretty.


Harses. Harses. Harses. Harses.
Wait, no.... farms.


Butterflies!!








Ruthie's birthday!!! She's 7, people. 7.



Dog. He has nothing to do with fall, but Ben got a good picture of him.



Chiminea.

Things I do not like about fall.
(None of which deserve pictures.)

Wet feet after walking the dog at 6:30 in the morning.

Cold sheets when you get back in bed after having to get out of bed for only 1.07 minutes.

Sick babies.

Sick kids.

Darkness at 7pm.

Sick children. Did I already say that?

Wet dirty floors from the wet cold feet (or shoes if you're not Ben).

Thus concludes my likes and dislikes. For the evening at least.






  

Monday, October 8, 2012

Garden of your mind.

Grrr. 

Today is a minority. I have bad moments. Sometimes even bad minutes but rarely do I have an entire bad day. Today is a bad day.

Theodore has on and off been running a low grade fever. No big deal. But that fever decided at some point last night to become constant. Bigger deal. Because I believe, if I think really really far back, I can remember a time when having fevers was annoying but did not cause too much trouble. However, for the past 5 or so months that hasn't been the case. So when he hit 99.9 once I wasn't concerned but now that he's been sitting at 100.4 I'm really freaking frustrated. A one time 99.9 can pass. But I'm not sure what's going to happen with this persistent stinking slowly creeping up fever. 

Today has been bad. Because SOME school has very brokenly gotten done, but no housework. Because the dog has almost eaten two of the cats. Seriously, almost eaten them. I've hardly been able to leave Theodore's side. And now he has FINALLY fallen asleep and I pledge to kill whatever person or thing wakes him up. Because although the kids can make their own food it's not worth the trouble of having a huge mess. Because no one can explain to my husband or my own head that I just couldn't do it today. And that's not saying that Ben doesn't understand and graciously love me and keep his mouth closed even if the house is bothering him. But I really just can't explain - even to myself- why it all seems like so much today. 

Yes, Mr. Rogers, it's good to be curious about many things. I'm constantly curious about what life would be like without a chronically sick child. I'm also curious about tee shirt yarn. Curiosity isn't bad unless it leads to a desire that can't be attained. Because that desire will always lead to discontentment. That is my struggle today. 

Finding contentment in the fever and the fussiness and busyness of life. And the daily replay of it all. 



     

Monday, October 1, 2012

It DOES exist.

A short admission is not just a thing of dreams. Not that an admission is generally dream material, but I have found that they don't necessarily have to be a nightmare. We are home from a four day admission. 4 days!! 

Theodore was having trouble kicking this certain type of tracheitis and needed some beefed up antibiotics. We got them in his system and got the heck out of Dodge. I still have no idea what the xray showed. The discharge papers said 'bacterial pnemonia' was his diagnosis, so I guess that's the official word... you know how these things go. 

In any case, we are home and he appears to be doing well. Luckily for you I remembered my camera for this short little hospital visit so I shall now endow you with completely unnecessary and way too excessive (double positive???) photos. I call them 'The Going Ons'. 

The Looks.


 
The Love.





 

The View.





Play Time.




Down Time.





Love my little man!


So thankful for a short trip. Thankful for my mother in law. For my parents. For everyone who, yet again, helped or reached out to us.