Skip to main content

Homebodies and Heads

We are still here. Sorry for the long pauses between posts, we have been totally and utterly consumed with moving and making house. Justin has reminded me several times that moving is right up near the top of the list of the most stressful things. There is something deeply unsettling when your home comes down around your ears in boxes. Things are just things, but even little man will tell you, things help make a place "home," instead of just a house. Walking through our old and now empty cabin feels strange and impersonal, while our new home, now slowly emerging from boxes and bins, feels more familier though we have only lived here a couple days so far. The transition hasn't been all roses however, between bouts of a renegade stomach bug that cycled through all of us, at times, it has seemed downright hellish. Leo also, seemed to react to the vibe in the air and rebeled in the only way he could. By blackmailing me to stay right next to him at his beck and call. Usually, litte man's personality is pretty easy going. I'll be the first to say that in the regular baby stuff department, he is perfect. But this past couple weeks he has turned into a hollering, demanding, mom-controlling-freak! It was a little shocking! I underestimated how much "home" really means to him, and how freaked out he really was by all the unsettling activity around him. Once I resigned myself to getting things done during naps, he was much happier. Today he even spent time playing by himself in another room! This is huge people. Just huge. I mean it was so bad at the new house, that Leo perked up to a doctors appointment as an excuse to get away from it all... Speaking of which, he saw his neurosurgeon and plastic surgeon for a post op visit on Tuesday. Apparently, little man's head is healing great, and the forehead is retaining its new shape nicely. Apparently in some cases the foreheads drop back to their old places, if not enough care was given to over-compensation during surgery. Although Leo still looks a bit like a grouchy footballer, the idea is that as he grows, his head will smooth out and his brow will soften. And if the droopy skin around his eyes doesn't tighten up in the next year, he will be the youngest patient to get an eyebrow tuck! Also they said that when he turns six they want to smooth out the slight imperfections of his skull. That is a fairly simple surgery, nothing like what he had before. And we don't have to think about it for a nice long time. He is still on track for eye surgery on July 12th. So as usual, Leo makes us pause in our expectations, and shows us what really matters. A snuggle matters more then getting a box unpacked, and though things do help make a home, it's the vibe in the air that makes it or breaks it. Little man is dialed in, and there is no fooling him. Thank goodness the Leo gauge is showing more peace and less angst so I guess we won't be moving right back to the cabin after all!

Comments

Post a Comment

Popular posts from this blog

With Mixed Feelings

So for the past couple weeks my feed has been filled with the "back to school" and "end of summer" and "beginning of parental freedom from their annoying offspring" photos. It's ok, I totally get it. Another year, another back to school pic, another notch in the door jamb, and another chapter of growth and development with junior. Look at him go! Or not, as the case may be for many children. According to the CDC (Centers for Disease control and Prevention) one in six children has one...a developmental disability. A stamp of "not normal" across their foreheads. A number. A check mark in a box. My kid is one of them. I heard a brief segment on NPR that enticingly started out with the title of developmental delays on the rise, a 17% increase over the last twelve years. And though I turned up the volume the segment only talked about how it's probably only due to poverty, and it's only the upper classes that actually pursue diagnosis...
34 comments
Read more

Putting The Lion Back Into The Wild

I'm actually home tonight while the 'boys" are at the PICU for what could be, maybe, possibly, our last night. It's almost hard to believe that we could go home. It's like those animals who have been in captivity who are finally let out almost don't know what to do, and often cower in fear and confusion in their cages. We would be cowering, but that sounds like it takes too much energy. We are completely exhausted after ten days of this shunt malfunction marathon.  Yesterday afternoon Leo had the hopefully final surgery to fix his shunt. The Neurosurgeon replaced all the tubing and tunneled a whole new channel for it as far away from his lungs as possible. During which he discovered that the connection between the tubing and the shunt valve was leaking and welling up CSF as he was examining it. Also his old tubing was inserted pretty high under his breastbone which often can jeopardize the integrity of the surrounding tissues; in other words, the plu...
8 comments
Read more

Kinda Like 'Nam.

First off, sorry about the disjointed nature of the posting from yesterday. I was updating via text messegaing from my phone and because the service is patchy in the hospital not only were the posts chopped up but they were frequently out of order. You have to be a sleuth to figure it out. On the other hand, I guess it was a direct reflection of what we were experiencing! Between getting little bits of info and there, we had no clue what was going on. This is what we have been able to piece together since yesterday. The surgery itself was a definite success, though there were a few surprises. One of which being that when they took out Leo's shunt of 8 months they discovered that it was not working. Huh??? He never showed any symptoms of shunt failure and brain compression, so what the heck? In between the sobering list of items now holding risks for our guy, the nuero surgeon dropped this little bombshell on us. Does that ...
18 comments
Read more