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#tbt

Over on Twitter (@pressuresupport) and Instagram (Pressuresupport) Throwback Thursdays or #TBT is for posting pictures of yourself from the past. I don’t think I’ve ever taken part, but over the weekend I pulled out the old Nikon to take some photos for my dad and I found a memory card that I hadn’t used in close to five years. 

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In the last few weeks of Liam’s five and a half month NICU stay we were allowed to book a “family room” for up to 12 hours to spend the day away from the nurses and the other patients of the bay system unit. We would invite family to visit so they could hold Liam away from the noise and stress of the bay. More often than not Karin and I would take turns taking naps with Liam in our arms. We would watch movies and take pictures and started learning what it was going to feel like being a family at home.

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Here we are. Almost 5 years ago. The memory card was chock full of good shots so in the coming weeks leading up to Liam’s fifth I’ll throw back on Thursdays to a time of innocence. A time of naive confidence. A time without a single grey hair in my beard.

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Looking back on these, even though we had already been through so much; we had no idea what we were in for.

Still don’t.

Easing back into it.

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Sure, I could make excuses. I could tell you how tired we are. I could tell you how the day job has been busier than normal for the past few months. I could tell you how there really hasn’t been that much to blog about as we have been settled so deeply into our routine. But that wouldn’t exactly be accurate. It wouldn’t be the truth since, to be honest, so very much has happened. Let’s see,

  • School started and Liam has taken very well to being a full-time part of the classroom. He has a special relationship with his classmates and his full-time teacher is nothing short of wonderful.
  • Liam has started to reliably make choices using eye gaze including such things as picking out his clothes every morning.
  • Karin and I got to attend our first Open House at school, our own rite of passage we never thought we’d see. We had our latest and greatest IEP and everything that entails.
  • We started the ongoing process of breaking in a new night nurse in the hopes that someday when she works we’ll actually get to sleep for a full 8 hours.
  • I made two different beers using only the hops that I grew in my backyard that I told you all so much about.
  • And maybe most importantly, The Boston Red Sox won the World Series.

And that’s just the big stuff. That doesn’t even count all the little moments. All the little happenings that were probably worthy of their own blog posts. Making his pediatrician cry showing him a video of Liam in his walker. Being able to ask my parents to babysit for the first time in Liam’s life. Starting to plan for Liam’s FIFTH (!!!!!!!!!) birthday party (January 11th 2014. More details to come. Mark your calendars.  You are all welcome.)

Anyway, I obviously cannot be trusted to assure you that I will post more reliably now but at the very least this post will serve to break the seal. With the pressure of the first post back out-of-the-way I can get back to little updates more frequently.

Thank you all for hanging in there or coming back. I appreciate it. While not blogging I was also not reading or commenting on other blogs. I’ll work on that too.

In the meantime, things here are going well. I hope that all of you can say the same for where you are.

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Catching up.

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I posted this picture on Instagram and Twitter the other day with the caption 10pm. Instagram and Twitter is where I spend most of my online time, time obviously not spent blogging these days. An online friend on twitter who knows me more for my home brewing content than my special needs parenting content commented how crazy it was that we had so many medical supplies in the home. I laughed and relayed that Liam’s medical chest is nothing, he should see the spare room literally filled with feeding tube, suction, and ventilator supply, and that this was our normal. The “craziness” of medical supplies in our house had worn off long ago.

It got me thinking that maybe that was why I haven’t been blogging. The “crazy” stuff just hasn’t been happening very much. Which is a good thing. A very good thing. But I’ve never been very good with making the normal every day stuff very interesting. (That’s my friend Elizabeth’s game. In between posts about Great Big Things she manages to make the everyday things seem even more crucial and important.) Sure, a month-long hospital stay or a blizzard hits and I’m cranking out multiple 2500 word posts but make it through an entire summer without a hospital visit or not needing to give Liam Diastat or Versed to medically intervene with a seizure SINCE MAY(!!!!!!!) and boom! the posts just dry right up.

That, my friends, is what we call burying the lede.

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School has started again and picking up right where he left off Liam has taken to it like a fish to water. Still young enough to only go half day (thank you very much December birthday) we moved him into the afternoon session since he is not a morning person at all  and that has proven to be the right choice. By all accounts from his nurse (who sent home the picture below last week) and teacher he is making friends and staying awake, alert and engaged for most of every day. An improvement from last year when the opposite was true.

In fact tomorrow is our very first Parent/ Teacher Night! I’m probably a bit more excited about this than I should be but anytime we get to enjoy those “normal” parenting things we relish it.  I can’t wait.

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And in the meantime I made a pretty delicious beer.

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Arnold Street Ale.

It’s a bit sweeter than I wanted it to be and the carbonation and head retention need some work, ( I know exactly what I need to do about both of these things and the next batch of this particular recipe will be better) but it’s the first beer that I wrote the recipe for and is also the first beer that 100% of the hops used were grown in my backyard. Hence the name. I may have been brewing for the last 2 years but this one felt like the first time and I love it.

Cheers.

Crib Notes

I get to go to bed earlier than 4:15am now! No longer tossing and turning on the couch grumbling about the pain in my neck it creates while counting the ventilator breaths I can hear on the baby monitor. Karin can lie back down in bed from 4am to 8am instead of sitting up by Liam’s crib while he has his daily awake time from 5am to 6:30am.

It’s a comfortable bed. A nice wide full size bed. Probably the nicest bed that I’ve ever even purchased. The only thing that would make it nicer would be if it were mine.

This one is a big boy’s bed.

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Last week on a day that also included Liam’s first ever trip to see a movie in the theater, (Despicable Me 2, and yes the whole family enjoyed the movie and the experience) I worked past the emotions of how on earth Liam could possibly be too old for a crib and got to work turning this

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into this.

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I’m betting that the parenting books tell you it’s a bad idea to sleep in the same bed as your 4 year old but we don’t go in for parenting manuals around here. Instead we just do what works for us. What works for him.

The phrase 24 hour a day care is not hyperbole and for the past 4 years Karin and I have split the night in two. Couch time and bed time. Neither of us in either space together and unfortunately that isn’t likely to change anytime soon. But our level of rest will. The light from the ipad or kindle is hardly brighter than the displays on his feeding pump, vent or oximeter. I can read and I can sleep and I can get a little more rest all the while being less than an arm’s length away from the boy. From the circuit. From the suction rig.

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A big boy bed. Just as exciting as the day that Liam left the confines of his NICU isolette and into an open air crib but I’m not sure which of us has been more excited about it. Liam, who now has the room he needs to stretch out as much as he wants, (and even has the audacity to learn how to roll over by himself, the little scamp.) or me and Karin who will get bits of sleep that we so desperately need while still being close enough to care for the big boy stretching next us.

Pretty sure it’s us, but even if it’s not today, it will be once Liam gets to hear me snore.

New Routine

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We go for walks now. All three of us. Everyday.

For the past 7 years I have had to work until 8pm at the earliest. There wasn’t any way for me to go out for a walk around the neighborhood in the sunshine. Then in November I got a promotion and was able to get home by 6 almost every night. A welcome change but being November it would still be another 5 months before I would get to enjoy the feeling of leaving work able to enjoy even a little bit of sun.

I used to come home from work with barely enough time to eat dinner before Liam would fall asleep. Now I come home with hours and hours to play with before bed time. We’ve got a new routine now.

We go for walks.

All three of us.

Everyday.

BRCH/OBSV

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We got new phones. Our old phones started acting wonky enough that it was becoming imperative, so we splurged. For what it’s worth, we went with iphones and that decision for me was totally based solely on the quality of the camera. I’m glad that I did. Not only for the quality of the camera itself but the ease with which I can edit those photos in my phone.

They arrived just in time for Liam’s hospital stay which ended about an hour and a half ago. It may sound silly but playing with a new gadget like this is exactly the right kind of activity to pass the time by Liam’s bedside.

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The hospital stay was planned. A routine bronchoscopy brought us in but we figured why not use the opportunity to take care of a few other things so Karin coordinated a neuro consult to adjust his seizure meds and an ultrasound for hematology to check on that thrombosis from last year piggybacked on top of the vent assessment that was keeping us there for 24 hours anyway.

The blood clot is completely gone, we’ve got a new schedule and a slight weight adjustment to his seizure meds, and while we didn’t need to make any vent changes (we did that about 6 weeks ago) we were able to confirm some fantastic blood gases overnight. In that time I played with my new phone and got comfortable enough with it to be able to shoot, edit, and post photos right here onto the old blog.

So, you know, productive trip.

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Blizzard Interlude

I know I promised you the first part of the story tonight. I just didn’t get it started finished yet.  Instead I had a really pleasant, productive, and yet somehow relaxing day off of work. The first since before the storm. Liam’s night nurse has arrived (also a first since before the storm) and a full night of sleep is just what this family needs. Don’t worry, I’m not going to lose my steam on this story so you will all have to indulge me for the next week or so.

As a reward for your patience here are a few pictures of yours truly from the Blizzard of 78. After finally losing heat in addition to power my Mom and I went to hunker down at my Nan and Grampa’s house. My Auntie Carol took these while we were there. She sent them to me this morning after reading my post from last night.

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Thank you so much Auntie Carol! And while I don’t need to borrow it to take my picture next to it again, A picture of Liam and Kermit would no doubt be pretty adorable.

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And The Walking Boy Walks

On Twitter last night I made fun of myself a bit for being too lazy to post here. I have been writing, I just haven’t been happy enough with anything that I felt I could post it here. With today being my day off I had high hopes that I would get some writing done today and was confident that I would polish something enough to post. I suppose that there’s a chance I still might.

But instead, and only because how could I NOT post this, I have to share a photo.

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Liam has been reluctant to work in his walker lately. In fact on the way home from school today Karin and I realized that Liam hasn’t had a good day in his walker since before the month-long hospital stay last fall. Don’t get me wrong, he’s worked hard all school year but he had so much physical therapy to catch up on that he simply didn’t have the strength.

There’s nothing better than having a day off of work on any of Liam’s school days. Then I get to pick him up and participate in his therapies. He may have been holding his Mom’s hand in the picture above, but he was also walking towards something today.

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His Dad.