Rambo's Rampages...

"I don't think you understand the concept of Fun Land." - Benjamin     I cried. Right there under the Paratrooper ride next to the hose for vomit. Right in the middle of FunLand with screams and laughs and smiles all around me. For the most part I think I went unnoticed. Parents too busy videotaping their children on rides for the first time, boys too busy trying to impress girls, kids too busy running away from their parents.  I'm sure I wasn't noticed. That is until Emma turns around and in an effort to speak above all the noise loudly says "Mom, you look like you might be crying!" And EVERYBODY and EVERYTHING stops. All the noise and rides are suddenly supernaturally suspended mid air and all eyes are on me. The void of movement is palpable. I'm pretty sure time stopped. Yes, yes, people, I'm crying, get over it. And they do in a matter of about 0.2 seconds because, thankfully, nobody really cares.   I cried at FunLand. How in the w...

Last night Theodore decannulated himself. Yes, it happened and it scared the **** out of me. There are so many reasons it could have been way worse than it was and I am so thankful that God gave me the urging to look over when He did. I'm happy to say that Theodore is doing just fine and my stomach is back where it belong as opposed to on the floor.  So here's what happened. I put Theodore in bed last night the same way I do every night... off to his dreams so he can try to take over the world. But he had a late nap so he was not falling asleep. He's happily in his bed, I'm on the other side of the room and I can hear and see him sitting up and standing up and playing, etc. At one point I heard a familiar noise. It's hard to describe unless you are familiar with it. But I looked over to make sure that Theodore wasn't blocking his trach with his finger like he so often does. He was standing up and I could clearly see him and his trach collar still in tact so I ...

Last time I wrote I said something to the effect of weaning Theodore off oxygen and hopefully being off completely within a month or so. HAHAHAHA. Pipe dreams. Here's the deal: he was doing really well, but then he got sick. A week of fever and low sats and high heart rate..... some kind of infection or virus, who knows. Anyway, we are going on 2 weeks now of no time off the oxygen at all. And that's okay. It shows us that he isn't ready to be free of it yet. Not fully anyway. Once he fully recovers we'll start weaning again, but he's showing that recovery takes some time. So we have just settled back into same ol' same ol' and aren't rushing anything.  Below I am listing a link to a bunch of signs that Theodore has learned and is using or is learning. Several people have asked so here is your reference :) Mama Dad School More Please Music No Time Change Home Thank you That's a good start for now. These are the ones that...

Big news on the blog today. (Drum roll please......) We have started weaning Theodore's oxygen! You can probably recall that many many months ago we took him off his vent. (Remember that terrible summer of 2012 that landed him on the vent in the first place?) His oxygen requirement since then has also come down. Way down.  We took him to the pulmonary doctor the other day, who apparently did not remember that he no longer uses the vent. She was quite pleased that he was doing so well. She also was the first person, aside from his primary doctor, who actually showed some concern about the bleeding from his trach issue. If you recall, last year he was flown to Hopkins because he had a lot of fresh blood and a clot come out of his trach. This has happened 3 times since then. Each time it's over within 30 minutes and he shows no signs of distress but we have no idea what is causing this. So the pulmonary doctor asked several questions and ordered an xray but I've heard no...

A few things for this blustery winter day. #1: I can't recall a better coffee experience than I had this morning. The smell, the warmth, the taste.... everything was exceptionally nice on this cold morning. I'm savoring every second. #2: I'm out of almost everything. Milk, flour, coffee, cheese, and butter.... what's a girl to do? And I am certainly not heading to the store in this weather. Ben being on night shift means hauling all of the kids with me and I won't risk that. Maybe tomorrow will be a little nicer.... I think we have a few Ramen packs to get us there.  #3: Yes, I still like Ramen. Thankfully my whole family does so that's a plus.  #4: Ramen Girl with Brittany Murphy was a good movie. You should check it out. #5: (No more Ramen, don't worry.) I visited my Grandmother with the kids yesterday. I haven't seen her since the Christmas before last and I'm pretty certain she's only met Theodore twice prior to our visit yesterday....

I've never been a huge fan of sleeping in. I am, however, a huge fan of naps. I've taken naps ever since I can remember. In fact, I can recall a particular nap where my mom and sister used a wooden spoon to snap me back to reality when I would not wake from a deep deep sleep for a phone call. (Thanks, guys... still have scars from that...)  My point is this: I would do anything for a chance to sleep in. In fact, I feel like I live for mornings where Theodore doesn't have school because when that's the case I can roll out of bed just before 8. (Literally roll.) But when he does have school I need to be up and moving and dressed (yuck) and ready by 7. Every morning. And on the weekends I have to be up by 7 because that is when the nurse leaves. So I really don't have the chance to sleep in.  And I do realize that 7 is not that early. A lot of you are up at 5 or 6 every morning and, basically, that just really stinks. So I don't envy you. However, it's a ...

I could fill a book- a big book- probably at least the size of one of those Readers Digest Condensed version books- of nursing stories.  I genuinely have no desire to do this. Mostly for the fact that I am truly grateful for our nurses. And really, there's only one that I have an issue with. Like, I'm not sure how she's actually managed to live this long. It's scarey. But this post is not to throw her under the bus, or talk about how much sense I feel she may be lacking, or express my frustration over a folding door she just cannot figure out.  This post is purely to announce that it has spilled over into my dreams. My dreams, people. Not that my dreams were anything really worth mentioning before. Usually they are made up of every day lack lustre things- the kind of dreams where you wake up and realize it could have been a reality in a really boring common way. It almost feels like my already overwhelming boring life was extended by 6 or 7 hours.  Now that I thin...