Tuesday, September 27, 2011

TCM - and no, I don't mean Turner Classic Movies

Thurman Carlos Meadows.
Lived 88 full years.
Died September 27, 2011.

I had the honor of meeting this man, my husbands grandfather, only once. Even still, I had heard so many stories that literally came to life when they were shared by his children and grandchildren that I felt as though he was a close friend. The first time I met him I felt I had an unfair advantage of knowing all about him while he knew probably very little of me (except that I was beautiful, and wonderful and all that) And yet, even though I likely had the advantage, I was still so nervous to make a good impression on this man who was so highly respected and loved by my husband and his entire family. And the meeting didn't disappoint - at least for my part. I'm not sure what he thought about me :) - He was the life of the party. I mean, how many people in their 80's do you see out shooting a potato gun? 

He is the only person I know who, after years of being highly allergic to poison ivy, would rub his entire face in a patch of it to prove it no longer affected him. I believe he scared the poison right out of the ivy when it saw him coming. Either that or he commanded his skin not to itch.

He worked out and ran marathons late into his life.

He was THE reason Old Spice was made.

He fought in WWII.

He was a husband.

He was a daddy.

He was granddad.

Both sides of his pillow are cool.
He spoke fluent French in Russian.
He once had an awkward moment just to see how it felt.
He is the most interesting man in the world.

He loved Jesus and lived for Him.

He was confident.

He was loving.

He was the epitome of cool.

And now, he is home :)

We love you, granddad!
Forever xoxoxoxoxoxox

Saturday, September 24, 2011

Same ol'. Same ol'.

Heart defect
Extubations (many)
Ocular issues
Daily multiple medications
Occupational/physical therapy
Rough days
Exercise in patience, trust, and contentment

not to mention....

Close calls
Kind of reminds me of the big woman/alien thing from
Fifth Element that the stones were in. Anybody?
Motility problems
Opposition with physicians
Higher oxygen requirement
Unable to swallow

I could go on, but I won't. You've heard it all before.

My point? Those things are what make THEODORE. (And also scigamnoshu.) They are an important part of who he is, but they are not all that he is.

With mom mom (his great grandmother) and Kitty Cat.
Rolls (literally, rolls everywhere. He's fat.)
His scars
An absolutely sublime smile
Interested in his siblings
Loves new people
Sleeps serenely
Makes me laugh
Keeps us guessing
Progresses each day
Wonderful work of God's hands

We focus on the good because those are the things that keep us going. But we remember the bad - where we were and are not anymore, the unknowns, the sickness, the unforged road ahead. We put the good in with the bad. That is Theodore Rambo.    

And by golly, he is really adorable.

Progress report: There is none. No, just kidding. :) He is really starting to lift his head and upper body up when he is on his belly. Just the other day he rolled from his belly to his back all by himself. He did it twice too, so I know it wasn't just a fluke. And I have seen him a handful of times actually try to turn onto his belly himself. There are also times (few and far between, but still) where he can sit up by himself for a few seconds. I'm such a proud mama *big beaming smile*. He is still a little short stack but ever so slowly working his way up to the chart. (Yes, I did say 'up to' because he has not even reached the chart yet.) He's fat as ever. Cute as ever. Happy as ever.

I know I've said it before and I'm sure you're tired of hearing it - Let's be honest, you can only handle someone talking about their own kid so much, so God bless you if you still read this blog - but I love that little boy.

Wednesday, September 21, 2011

Where in the world is Sylvester Stallone?

*If you did not read the title of this post in the Carmen Sandiego tv show theme song tune please do so now. Word of advice: you need to add an extra syllable somewhere- you choose. If you do not know the tune of said show off hand then you're 'an ignorant scoundrel; I disapprove of your very existence.' Doc Holliday's words, not mine. Thank you. Enjoy the show.

It's morning and I'm just getting settled in the PICU. I hear a small commotion in the corner by the door. I look up to see none other than Sylvester Stallone himself. Mr. Stallone is asking for the baby child Rambo and his wonderful dedicated mother. The nurses, all staring in wonder now, direct him my way. He starts walking toward me, I look up from my book and see him coming. Fidgeting with my hair and cursing myself for not putting on makeup today, I do my best to act comfortable and nonchalant (inside I'm DYING), yet also the appropriate amount of surprised and honored. Sylvester finally makes his way to me after what feels like 10 1/2 hours, because of course he's moving in slow motion as he walks across the room. He reaches me, introductions are done, I'm shaking Rambo's hand!, and Rambo finally meets Rambo. This, of course, is only the beginning of a beautiful friendship. We instantly hit it off and Sylvester Stallone is not only a very active part of our lives but he is now also Rambo's godfather.

.... or so it goes in my head.

In reality, Rambo doesn't yet know his namesake, Sylvester Stallone still has not graced us with his presence, and I have yet to go a day at the hospital with no makeup :)  

The sad thing? There was a TINY part of me that actually believed it was going to happen. Stallone would, through a series of random events, become aware of our situation and would feel the need to meet the baby whose mother actually named Rambo. Like, actually legally named him Rambo (middle name, not first - don't worry). I'm thinking now those were high hopes. Maybe. 

I still love you, Sylvester. No hard feelings. I'm sure you're a busy man.

But now let's get down to business. I have something to show you that you have never seen before. Or should I say 'heard'? You can believe your ears this time. It IS what you think it is:

Can you believe it?? We finally know what he sounds like! And it feels so good :) He has the best little cry! Poor guy. He hates the speaking valve but that is what allows us to hear him. Its a little one way valve that we put on the end of his trach. It allows him to breathe in through the trach but not out of it. All the air has to go up through the vocal cords and out his mouth or nose. Not something he's used to. We only do it about once a week - we want him to get used to it, but we don't want to stress him and we don't do it when he's sick. 

The first time we put it on I can't even tell you how neat it was. I, of course, cried because I couldn't remember the last time I heard him do something other than gurgle out of his trach. He's upset, non stop crying, I'm crying and saying "Take it off! No, leave it on!" and Ben is holding us together while rolling his eyes at how easily we all lose control. (He will try to insert a certain power outage story here, but don't believe him. It's all lies.)  

I definitely look forward to the day where he no longer needs trach, speaking valve or any other external device to be self sufficient. He's amazing. Also, I look forward to the day Sylvester Stallone is standing at my door.


Saturday, September 17, 2011

Bound and determined.

A few things Rambo is bound and determined to do:

1)  Be his brothers best friend.

2) Sit up on his own.

3)  Have the chubbiest cheeks ever.

4) Be as cute as humanly possible.

5) Get his sisters nose.

6) Figure out what in the world Ruth is doing to his hand.

A few things I am bound and determined to do:

1) Make good, edible homemade bread.

2) Enjoy it. 

As you can see we are both well on our way to accomplishing the aforementioned. I'm also determined to treat weekends as weekends as long as my house isn't disastrous - it can look like a tropical storm ran through it but hurricane is where I draw the line and give into chores once again. Theodore also still appears be determined to get back into the hospital. We thought he was happy at home as there were no hospital attempts in the past few months. This past week proved us wrong. But we're onto him. We've figured out his tricks. No hospital for you, little man.  

Thursday, September 15, 2011

9 months. Could it be?

Today Rambo is 9 months old. Unbelievable. He is turning from a baby into a little boy. Every time i look at him its bittersweet. Thinking about how far he has come is weird. It actually seems like a different world or he can't be the same baby. And in a way, I guess that's true. 
He is now ridiculously chubby. We took him to the doctors and as the nurse went to take his blood pressure she said she wasn't sure the machine would be able to read it through all his fat. Indeed, that was the case. Legs and arms were tried to no avail. He is trying (or at least he did once) to turn himself over to his belly. He can even sit up on his own for a few seconds at a time. SLOWLY we are making progress. And what could this be?

Yup. It's the tooth the doctor said wasn't there. The second one is close behind.

We narrowly avoided being admitted to the hospital yesterday, but thankfully, he turned the corner just in time. He had been running an increasing fever for a few days and was becoming more and more miserable. He was coughing almost constantly. After a trip to the pediatricians and phone calls to the pulmonary doctors it was decided that if he couldn't get back down to his normal oxygen requirement he would need to go. I guess hearing those words scared him into submission because we turned his oxygen down and he did fine, his fever broke and he was much more comfortable. His lungs are still pretty junky. The doctor called it 'a pnemonia' because he didn't know what else to call it (nothing new). Rambo is getting a few extra meds but he appears to be getting much better. Another pediatrician visit today, pulomonary tomorrow and hopefully we'll be able to steer clear of all hospitals. 

Happy nine month birthday, little man!!

Thursday, September 8, 2011

Oregon Trail

We had an appointment with the swallow specialist yesterday. I've been anticipating this for quite some time now knowing that Rambo doesn't swallow. I was interested in hearing what the doctor had to say about helping, treating, teaching, etc. 

I gathered from the paperwork I received and phone conversations I had with a not-quite-competent receptionist that the doctor needed to watch him eat to see what the problem was. This makes sense. Bringing baby food (which he's never had) or rice puffs (which he's never had) did not make sense. So I brought his formula in his 'favorite bottle' at the receptionists insistance. I don't think it's necessary to remind anyone that he hasn't eaten from a bottle since he was about a week old (because he.couldn't.swallow) so I'm thinking he doesn't have a favorite bottle. Aaaannnnnnyway we find ourselves at the appointment. Mind you, I've worked his entire schedule out - thankfully it wasn't too far off - so that he would show up hungry, per the offices request, and want to eat. Needless to say he ended up getting his formula an hour late via his g-tube because the doctor wasn't going to watch him eat this time anyway. Way to know what the left hand is doing, right hand. 

Silver lining: The doctor said she couldn't teach anyone how to swallow. Okay, WHY AM I HERE?? It seriously is laughable. It wasn't a 100% fruitless day though.  We did come away with a few ideas on how to encourage swallowing and how to make eating enjoyable. Rambo gets to try different liquids to experience different flavors. We do this by dipping his fingers in a drink, for example. She couldn't say whether or not he'd actually be able to swallow one day because he is 'unidentified' genetically, but I do still have hope for him as far as eating goes. This whole unidentified business is proving to cause more problems..... It would be so nice to have a definite answer. And I don't mean definitely "we don't know." To know ONE thing, ANYthing about ANY of his issues would be awesome. Alas, that is not the path for us. The path of most resistance, least traveled, forging our way through is where we find ourselves. I keep waiting for somebody to die of dysentery.

But today as Theodore was looking up at me like he does ever so sweetly

(See? I told you it was sweet.) I suddenly realized that he is a picture of Jesus that I would have never known had it not been for him. Difficult, tiresome, frustrating, lonely though it is at times, and it IS all those things, it is also fulfilling and truly something that not everyone gets to experience. He never fails to smile that goofy grin of his when he sees me. He's forgiving, always happy to see me even if I've been frustrated, always welcoming. And even as a baby he has taught me more lessons in love, trust and joy than anything before. I will take the cup I have been given. I will enter in order to possess. I will press on. 

And I'll be sure to show you all the cute pictures along the way :)


Monday, September 5, 2011

Are you ready for an upgrade upgrade?

After many many months of having this blog I've finally found some time to explore all the options blogger has for me, ergo you as well. You may have noticed some of the changes - maybe not. Either way, changes there have been. Mostly it is in the way things are displayed however there are some neat new features. At the top of the page are two new tabs: 'The Fam' and 'Daily Cup'. These are mostly just for fun and as a way to include the whole family in this blog. 'The Fam' will be updated periodically but the 'Daily Cup' I hope to update... well, daily. Hence the name. It's a good exercise for me and a way to keep perspective. So make sure you check those out from time to time. At the bottom of the page you'll find other blogs that I follow - if you want to as well. I mean, I'm not gonna force you. And that, my friends, is that. 

Enjoy your labor day! Eat drink and be merry. Make resolutions and then break them. Oh wait... wrong holiday. And in the words of Truman Burbank "Good afternoon. Good evening. And goodnight."

By the way.... WHAT is he doing???

Sunday, September 4, 2011

Silence is golden.

*beepbeepbeep beepbeep* *beepbeepbeep beepbeep* A few seconds pass then *beepbeepbeep beepbeep* *beepbeepbeep beepbeep* all over again. This is one of those background noises that soon becomes so annoying it's all you can hear. Now, Rambo's equipment makes a lot of noise. But most of it is constant. The humidifier always has a low vibration humming that you don't realize until you turn it off to refill the bottle; then suddenly you become aware of the silence you've been missing. Other things like his nebulizer and suction machine are loud but only occasional. 

Then there's the beeping. 
The bane of my existence.

*beepbeepbeep beepbeep* *beepbeepbeep beepbeep* 

Are you starting to feel my pain yet? This beeping comes from an unfortunately necessary item: the pulsox. The pulsox measures the amount of oxygen in Rambo's blood. It's a little 'probe', for lack of a better word, with a light that goes on his foot or hand. And it's there all. the. time. 24 hours a day. Every day. The point of the pulsox, obviously, is to alert us if Rambo is not getting the amount of oxygen he needs. This could be due to many reasons: needing suctioning, wheezing in his lungs, needs repositioning. See - necessary. 

The problem with this vital piece of machinery (*beepbeepbeep beepbeep* *beepbeepbeep beepbeep*) is that it's almost never accurate. It doesn't read correctly if he's moving. So obviously it makes TOTAL sense that is should go on his hand or foot. Now, for accuracy sake, I should tell you that it could be placed elsewhere. Like, his earlobe. Something tells me that's not going to be any better. What child is going to let something be taped to his ear? Not this one. It could also go in other unmentionable places but I am just not willing to do that to this poor child. He's been through enough. So we are left with our best option: the feet. As I said before, it does not read if he's moving. His feet also get poor circulation at times so although the reading might be accurate for his foot it is not necessarily true of his whole body. As well as the fact that it has to be on just so for an accurate reading. In the hospital they would replace these daily. Sometimes two or three times a day depending on how they were working. Here we get 4 a month. Tape has become our new best friend. 

Here's the real kicker. It's absolutely THE machine you want when it does alert you to a real need. This has happened a few times since we've been home. Well, we're working on being home 5 months so maybe a little more than a few. I would say an average of two to three times a week it alerts us to an actual need. But for all the *beepbeepbeep beepbeep*ing it does - it's not worth it! Except that it is. 

What the pulsox really needs is a remote. How much simpler that would make my life! But, alas, that would cause for much liability. Not to mention, defeating it's own purpose: getting up and checking on the child. So we are left getting up and hitting the silence button over and over and over and over again. 

Being a bionic baby is cool except for the noise. I can't take the noise!! *beepbeepbeep beepbeep* *beepbeepbeep beepbeep* Silence is a commodity I will never take for granted again. If I ever get the chance. 

So as you sit down to watch a movie or eat a meal or read a book or take a nap or do whatever you do in silence- think of me. Think of me and the constant incessant beeping.