Sunday, February 15, 2015

Out.

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. Not that he stood still long enough for her to see him yesterday but, none the less, we were there. I think the five of us wore her out pretty quickly which I feel bad about, but I'm so glad we got to spend some time with her. I love my Granny and wish I could see her more. Love your family, folks. We aren't promised tomorrow. 

#6: I'm not sure whether it's my view of winter or an actual fact, but winter hasn't seemed too terribly bad this year. I know we've had some bitterly cold days. Trust me, I know. But I think overall it's gone by kind of quietly. I usually hate winter and can't fully enjoy fall because I know it means that winter is coming. Just like House Stark. (DON'T SAY ANYTHING. I'VE ONLY SEEN UP THROUGH SEASON 3.) But this year, I decided to embrace to the best of my ability the winter season. It will hopefully be over before we know it, but until then we'll all be huddled in front of our one space heater trying to stay warm. 

#7: Not being able to communicate with Theodore fully is so frustrating at times. He'll come into the room visibly upset and he'll stomp his feet and clap his hands in frustration and I have no idea what is wrong. He has learned to ask for some things but hasn't learned how to sign feelings. I hate not knowing what is going on. 

#8: I would say that developmentally Theodore is around the 24 month mark. He's asking for diaper changes at times and usually needs one when he asks. He is learning his colors, and manners, and is standing from a squatting position. All his therapists and teachers say that he is doing very well and they have seen him grow this school year. 

#9: We have a pulmonary appointment next month and I suspect we will be weaning him off of his oxygen. He is doing really well with little oxygen and I don't think he'll need it full time for much longer at all. What does this mean as far as the trach? Well, in reality, not much at all. Don't get me wrong it is absolutely the first step. And a huge first step at that. And life without oxygen could be much simpler. But we haven't fully broached the whole trach issue yet. What we know is that he has to be able to swallow (which he can't- although I think he's starting to try) and, obviously, his airways need to stay open. As of right now, they still collapse. BUT no oxygen would be AMAZING. I'm not looking too far ahead and just trying to celebrate all the victories. 

#10: The kids found a mouse in their room last night. They screamed at first but then they named him Ralph and are now leaving bread out for him. Not sure I can let that last too long. 

 

Friday, February 13, 2015

Sleep in.

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 catch 22 for me because IF Theodore is home from school, which allows me to sleep in, then our regular routine of schooling the other 3 is completely interrupted and it becomes ridiculously hard to get anything done. It's a lose-lose really. Welcome to adulthood, right?

BUT this morning was the best of both worlds because Theodore didn't have school AND it's a Friday. We don't do school on Friday's. BOOM. I think the universe stood still for a moment. 

Also, I think it should be noted that although Benjamin hates the fact that I take naps sometimes (he calls me an old woman) he's never woken me up with a wooden spoon, MOM. SCARS. :)  

Thursday, February 12, 2015

Fill a book.

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 think about it, it's no surprise that this nurse would make an appearance in my dreams. The only 'up' side was that we held no humility, grace, or decency towards her feelings and were able to express how we actually felt. Of course, even in my dream I felt guilty. 

Stupid.

Anyway, only by the grace of God I truly believe, we have had no major incidences. And her coming allows us to get out of the house which we are thankful for.

Moving on.....  here's two pictures of cutie himself before leaving for school this morning.


 

 

Wednesday, February 11, 2015

Confession

Guys, I have a confession to make. Here goes......

I threw out all my houseplants.

There. I've said it. All of them are gone save for an aloe, because God bless it that plant lives through anything, and a dying orchid just because I can't give up on that one yet. 

They're all gone. Including a plant I've had practically since we got married almost 12 years ago. I abandoned it on the deck to fend for itself and it finally gave in to the terrible conditions. It's dead. Dead dead. (Note: I am in NO way saying that it's a picture of our marraige.... or AM I??? )

It was time. Time to go out with the old; the dearly beloved, close to my heart, old. They sat and looked at me every time I walked into the kitchen with their sad droopy dry leaves and asked me why I no longer loved them. I could never answer. The truth is that I still loved them. I still do! Even though they are now compost. But I had to let them go. And now, the guilt they brought me from their presence is gone (for the most part) and it's quite freeing.

This may seem so silly to some of you. You may be wondering how someone could be so torn by plants. But I really loved them. I loved having green and life and nature inside my home. I loved the look and the feel. I loved the comfort and the familiarity and even the smell. 

But I couldn't keep them anymore. They unfortunately only represented clutter and another responsibility. It was time. 

So I said farewell, old friends. You've been pleasant and a happy place for me. I'll miss you. And then I realized I was talking to plants and the whole relationship was totally one sided; and I chucked them. 

 I've got to be honest---- I've only missed them a little tiny bit. I more miss the idea of them. The what-it-could-be part. I remember the happy days when they were, you know, alive and it hurts that I'm not in the right place in my life to keep them and care for them and enjoy them.  What I do know is that now they aren't that constant reminder of what things used to be like. What I used to have time for. 

My house feels cleaner, less cluttered, and alive. And I hope that maybe one day I'll be able to enjoy plant life inside my home again. 

Monday, December 29, 2014

The honest truth.

You know the saying "No news is good news." And that's the reason things on the blog have been quite quiet. I am happy to say that there isn't anything to report! 2014 has been pretty good to us. Theodore continues to thrive, and with the exception of one bloody trach incident (well 2 actually), there have been no hospital visits or illnesses worth mentioning. He is LOVING school and has a wonderful nurse to care for him there. 

And he is so smart! He is signing more and more and putting multiple signs together. For instance he'll sign "time to eat" or "all done please". He is also learning colors and animals, and really learning them! Tasting things has become quite common for him - he'll take my spoon or fork with the tiniest bit of broth or sauce on it and put it in his mouth and taste the food and, on a whole, he really likes it all. He is also starting to swallow. He's never done that before!!! He is certainly nowhere near proficient but I see him working at it and there's much much much less drool..... tmi? 

His favorite toys at the moment are the metal Hotwheel cars. He LOVES them. But they have to be metal, he doesn't want any of that plastic stuff. They'll keep him occupied for a handful of minutes. He is nearly running at times, although that usually ends in falling over. Walking up steps is becoming easier, however I still tend to have a slight freak out when I find him half way up the stairs at home because coming down has not been mastered yet.

Yeah, all in all, a pretty good year. The other kids are doing very well at school and even I have managed to somehow stay almost organized and on schedule. It's a miracle. 

Okay, so there was some stuff to report - thankfully all good stuff. The real reason I haven't written is because I haven't been able to sit down at the computer. Literally. *hides face in shame* Christmas projects, mail, things that needed to be moved to make room for Christmas things have all been piled up on my computer, my chair and all over the office in general. *whispers shamefully* I've barely been able to open the door. Don't tell my husband. But now it is time to get ahold of this mess (you can see I've already made progress since I'm actually typing something) and start fresh. 

Usually I'm ready to bid farewell to the current year and usher the new one in. However, this year has been one of small changes in the right direction and no disasters for our family personally. I can't say I'm hesitant for the new year to come; I have hope that the small changes will continue and we'll eventually find ourselves saying "Wow, when did we get here?" (in a good way) but 2014 was a blessed filled year for us in ways I could never portray. I look back on it fondly and am in no rush to rush out.