Rambo's Rampages...

Oh! The incessant beeping!! I can't take it anymore, I tell you. I can't take it!  Sometimes I think maybe, just maybe, to have a slight case of hearing loss wouldn't be a bad thing. I'm not talking full out deafness, just a little hearing impaired. My world could truly be a better place. There'd be a lot less to bother me, that's for sure. No more "Mom. Mom. Mom? Mom. Mommy. Mom." quietly in my ear because I just sat down after telling the kids I was going to be on the phone; yet they decide that's the perfect moment for asking about playing a game on the phone... that I'm talking on. And I suppose whispering it over and over and over again makes it less disobedient. Or less annoying. Or possible.  I could literally miss out on THOUSANDS of "mom's" a day. And I'm not talking about the sweet little "Mom. Mom? I love you." 's. But the thousands of times that it really honestly doesn't matter. Case and poin...

Who told this boy he was allowed to grow up? I certainly didn't approve of that. Of course, I wouldn't say that I have 'approved' of about 50% of the way he's done things as of yet, but he hasn't really asked me. Rambo has suddenly gone from baby to boy. Yes, people! He is sitting up on his own!!! He is still really unsteady, but I was able to snap a few pictures without him tumbling over.  Just adorable. It can't be denied. This one just makes me laugh. I love the gap in between his two front teeth. It only adds to the adorableness factor. I might be crazy but after only 3 days on his new formula with a lesser calorie intake, I already feel like I can see a difference. Don't lose it too fast, buddy. The chunk is really what keeps you so darn cute. And it also makes me feel like you're still a baby. Stay thirsty, my friend. Drink up.

Rambo was just pulling on his trach. His actual trach that goes into his neck. Yeah.... decanulation, I see you in our near future and I can tell that we are not going to be friends.

and the answer is..... we have a fat one. I was going to draw up a few charts to show you just what I mean, but my life has not been conducive to doing so this week.So you'll just have to do with a basic explanation. On the weight chart Rambo is finally up to about 40%. That was a pretty big jump he made in the past two months. On the height chart he is still not even on it - below the 3%. And on the weight vs. height chart he actually exceeds 100%. His doctor is putting him on a diet. I'm not going to mind watching him shed a few ounces. His feet are like pinpoints on the bottom of a trunk. His fingers and hands are just.... round. He has a checkup in 6 weeks where he hopefully won't have gained any weight, and if he has it better be with some length.  We also got the results of the sleep study. There wasn't much news. His desating has nothing to do with apnea or collapsing airways or anything like that. Just chronic lung disease. The only way to treat that? Outgrow ...

We officially have a facebook page for Rambo's Heart. You know we're serious now!  http://www.facebook.com/pages/Rambos-Heart/229106107170283  Check us out! And 'like' us!!

Have you ever thought about how many disorders there are? How many defects? How 1 in however many are born with something? If you put those numbers together it truly becomes a miracle that any children are born healthy.  I have 3 healthy children.  3.  That is amazing.  Count yourselves blessed if you have healthy children. Children who can run and play and cry and breathe and see. Think about the odds.  Miracles. Today I feel truly blessed to have that. What is seen as the norm in reality is not normal at all. Today I am blessed to also have a son who is not 'normal' or 'perfect'. Who has given us difficulties and heartache we never thought we would face. He is here today when he shouldn't be. He is absolutely a miracle, but no more a miracle than my others. 4 miracles. And they are mine. Miracles that make us stronger each day. That drive us crazy. That take all of ourselves. That are worth it. That make us who we are.  Thanks a lot, S...

In accordance with my resolution to see the bright side, I give you: Our Saturday Morning. Nevermind the mess the pancakes made, the fuss to find all their winter clothes (you might be able to tell they did that on their own) and a fussy little man this morning. Oh, also, a brother who made a sister step in an old dirty, wet litter box outside. Yup, showers are happening as we speak. All in all, that's a lot said and done by 11am. A good Saturday morning, indeed.   

I should have known. Maybe my standards are high. Too high, apparently. And I recognize (and hope) that our time at Mt. Washington has been a rare one. But again, I come away not in the slightest impressed with that place. As I walked out of the doors this morning at 5:30 and breathed in the air I was so happy to be free. I didn't care that it was freezing. With my back turned to the building I could only hope it was the last time I would be making that walk to my car. I'm not trying to be harsh and would love to hear some good experiences concerning the Mount. But ours, and a few Hopkins friends, have had no such luck. I also should have known that we wouldn't have any news this morning. I didn't realize that it would be a tech doing the study and not a nurse. Nothing wrong with that, just my oversight. But they aren't allowed to tell you anything about anything I guess because they aren't 'qualified'. So we come away today knowing only what we alr...

Ladies and gentlemen, it is finally here. Yes, that's right, the much awaited sleep study happens tonight. It's been put off time after time for various reasons, but I'm hoping with only 9 hours to go until this event we can safely say it's here.  What will this accomplish? Supposedly: it will determine why he needs oxygen at night : apnea of some sort?, wheezing?, too shallow breaths?, etc. From my understanding they hook him up to a whole bunch of monitors and then watch.  I do expect some kind of answers although I'm not sure what they'll be. Maybe they will say that his 'desating' isn't that bad and we can try him off the oxygen every other night. Maybe they'll say to start him off oxygen while he's awake. I don't know. In any case, when they kick us out at 5:30am tomorrow morning, hopefully we'll be coming home with some answers.  Rambo also had his one year check up yesterday. And, despite having the same nurse that screwe...

Part 2 of bad memories begins thus: As I was saying last time, coming home was never easy. No matter what, you always feel pulled in the direction that you aren't. It was also hard for the kids. Seeing us only to know that the hours were ticking down until they would have to leave us again. I can remember the tension building as they could just sense what was going to happen even without us saying a word.  Nevertheless, we tried to come every few weeks or so. We tried to grasp the threads of some kind of normal.  This time we decided to come home for two nights. It was late in January and we had never done that before. Rambo was still in the PICU because he had yet to thrive and they had yet to figure out what was going on. I can't remember the specific details of why we decided to come home. I have to assume that he was stable when we left because I know that we only left him when we felt comfortable that he would be in the same position (hopefully better - certainly not ...

In pictures. Only the good stuff.  Not sure why Theodore always happens to be in that outfit every time I take pictures, but that's apparently the way it is. Snow, time to paint, and happy kids all in a weeks work. I'd say that's  a pretty good week.

As much as we are no longer dealing with some of the same challenges we were last year, I am convinced it has only made room for different ones.  This, for instance: is our biggest problem now. How in the world is this going to work when he is crawling? He already almost pulls his equipment over. It'll be interesting, that's for sure.  Also napping is something that he doesn't really do. About every 4 hours he'll sleep really hard. For 15 minutes. You MIGHT get 20 out of him. What can you get done in 15 minutes? That's barely enough time to get a cup of coffee and put your legs up. Sure, there are plenty of chores that can be knocked out in 15 minutes or less, but what kind of fun is that?  Again, I'll choose to count my blessings. Which leads me to the second part of this post.... kind of. I was reminiscing today (I guess 'reminiscing' can be used when you are talking about bad memories... there is probably a more accurate word. Not ...

*really bad beatboxing* "Hellooo everybody.." *really bad beatboxing ensues* source . Life for me has been pretty low key. Yes, I chanced it and said it. Maybe not the smartest move, but apparently I'll take that risk. This week has consisted of mostly the ins and outs of getting back on track with homeschool. Thankfully there have been no emergency trips anywhere, nothing too exciting, just our normal. Which is fiiiiiiine with me. Last night we had the chance to get out with Ben's twin brother and his wife. They are visiting from China and are going back tomorrow after having been home for a month. We have never met her before, except over Skype, so it has been really fun getting to know her - and her getting to know us. Even if she was practically appalled by the amount of casserole dishes I have. :) We went bowling, and I must say that I started out the first game with a bang. Like, literally a bang. I'm not the best at 'setting' the ball down. Ben s...

Our God manifests Himself in our mangers and muck, our mundane and mess. Ours is the God manifesting Himself in the unlikely and unbearable, in the surprise and the second-chance. The God Who bears the burdens and brings the hope.- Ann Voscamp Today I choose joy. The Lord is the portion of my inheritance and my cup; You support my lot. The lines have fallen to me in pleasant places; Indeed my heritage is beautiful to me. Isaiah 16: 5-6 What I realized today? That my inheritance is the Lord- in entirety. There is no lacking. HE is my portion. Satan will try to steal my joy - constantly, moment by moment. But he can't today. Because today I choose joy. As things in my life seem uncertain, as my keyboard fritzes out on me, as my computer won't play videos from my camera it plays videos from everyday... In the big things and in the little things Satan tries to come in and make me discontent, angry, get a foothold. He doesn't want me entering the land God has brou...

It's uncanny, really.  Sometimes, looking at Rambo I feel as though I'm looking at an overstuffed piggy. MUCH cuter, mind you, but still.  Case and point: Do you see those jowls?? How could you miss them? It's like two big hamhocks on either side of his face.  I literally felt like I was casing my own sausage trying to get these pajamas on this boy. I'm surprised his hands weren't purple in the morning for lack of circulation. That sleeve was pulled taut.  This one doesn't remind me of food - just my view about 50% of the time. A little foot sticking up over the edge of his crib. We'll have to move the mattress lower before long. But until then, this is one of my favorite things to see.

One.) This is why my church family is awesome: Two.) There's a new page up - RAMBO'S HEART. Check- check- check it out :) Okay, three things.. I lied. Three.) You can now find me at rambosrampages.com . No need to type in the '.blogspot.com' anymore but you still can if you wish.  That's all folks!