family

Looff

When my father rode it as a boy it was the jewel of Crescent Park. The amusement park made Riverside a summertime destination until the seventies. The Crescent Park Looff Carousel. It was loud and it was fast and at the time was already 70 years old. It was Riverside. It was home.

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When I rode it as a boy it was the only remaining structure from the long out of business amusement park. In my early-teenage years the trashed abandoned bumper cars out behind the ride would be cleaned for the construction of condos. It was loud and it was fast and at over 90 years old didn’t have the funding to stay open every year but when it was open we went and rode. It was Riverside. It was home.

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When Liam rode it as a boy it was two weeks ago. The staff and the fire marshall monitoring the event taking place were welcoming and helpful in allowing us time to get Liam and his ventilator on board. It was loud and it was fast, so much so that I don’t think Liam enjoyed the ride at all but that’s ok. He never really had a choice in the matter. At 118 years old and a local historical landmark, Liam was going to ride that thing at least once no matter what. It was Riverside. . . .

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… and he’s a Riverside boy now.

It’s his home.

Our holiday in pictures.

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And the hustle and bustle of the holidays end and we fall into old routines or embrace new beginnings. I haven’t made any resolutions for the coming year but I have set some goals. I’ll keep the details to myself but suffice it to say that if I follow through on some of them the results will be seen here.

And so as I so often do when I return from a long hiatus I will ease the pressure to write anything worth reading I will dazzle you with photos of my boy and our adventures.

And adventures we did have.

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On Christmas Eve we packed up the van and headed down the storied Connecticut Turnpike for a holiday celebration that’s been a long time in coming. Karin was able to spend Christmas with her own parents for the first time in 5 years. Liam was able to see his Grammy and Opa on Christmas for the first time in his life. The Olson’s were heading to Jersey!

The ride was uneventful. Just as we had hoped it would be, and as we crested a hill and passed the sign marking our entrance to Wanaque New Jersey, our destination, the first flakes of our white Christmas hit our windshield. Like magic.

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Christmas day was filled with visits and meetings with relatives not seen in years. Stuffed with good food, good drink, and great conversation my in-laws brand new house felt like home even though it was our first ever visit there.

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Liam was incredible. Well behaved and happy he stayed awake and engaged for almost all of the festivities. We asked so much of him between the long car rides and the overstimulation of a new environment and meeting so many new people I was amazed at how well he responded.

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He even got to sleep in a big boy bed. I’m talking really big boy, like king sized. A kid could get lost in a bed like that.

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The return trip would be the afternoon of the 26th, Liam’s fourth birthday. He had breakfast with his Grammy and Opa in the morning and had dinner and birthday cake with his Meme and Grampa, he’s a pretty lucky 4-year-old. Over those 48 hours he also saw his 4 Great Grandparents as well!

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Before Karin and I even knew what was happening an impromptu birthday party broke out as aunts and uncles and cousins from all over began stopping by to wish Liam a happy birthday. Since we had been away for a few days and had returned home from NJ less than an hour before all we could offer our gracious guests was tap water and a small cake my mother baked for Liam but no one seemed to care. We hooted and hollered and filled the house with laughter for a while.

We don’t have candles in our house, we have oxygen tanks instead. But on Liam’s birthday we throw caution to the wind and light a few because every child should have candles on their birthday cake. We turn the supplemental oxygen off and even pop off Liam’s circuit and point the tube at his cake so that Liam’s vent “blows” out his candles. We’re a little weird that way.

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So that was our Christmas Eve, Christmas, and Liam’s birthday in three crazy days and over three hundred miles of travelling. It was wonderful. If I had the energy I’d try to wrap it all into some neat little narrative package. But I don’t so I’ll let the pictures try to do that.

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Thankful

For Liam’s vent, because nothing will work better at ensuring that Karin, Liam and I will be home in time to see the kickoff of the Patriot’s game after Thanksgiving dinner better than the phrase “aww shucks, looks like we’re almost out of battery power.”

For Liam’s pulse oximeter, because watching him fake that he’s asleep when he gets overwhelmed seeing all his relatives at once is one of the more adorable things you’ll see. Watching his behavior and how it correlates to his heart rate just proves just how impressive an actor Liam is.

For cell phone cameras and nurses who enjoy playing dress-up at school.

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For the superhero in my life who inspires, amazes, and strengthens me more and more each day.

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For family

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For all the little things that make our life our life. It may not be perfect but there’s a whole lot more than just this list within it for me to be thankful for. It’s nice to take a moment and remember what they are.

I hope you spend the day finding joy in the things you are thankful for.

Happy Thanksgiving.

Chicago — #janphi

A few years ago and only shortly after Liam had come home for any significant length of time, my father and I drove out to Springfield Massachusetts for my cousin’s Eagle Scout Court of Honor. I remember getting more and more anxious with every passing mile knowing that this was the farthest I had ever been from him. About an hour in and only 2/3rds of the way there I realized that if an emergency had happened at home there was absolutely nothing I could do to help. It was an uneasy and uncomfortable freedom. I knew that no matter the emergency Karin would be able to handle anything that could happen and I was in a weird sense, off the hook and so I should have been able to enjoy myself.

Except that of course I couldn’t. Of course I fidgeted nervously through the speeches and accolades and aside from the short speech and presentation of the award that I was a part of (I am an Eagle Scout myself) my head was at home the entire time. My father and I had a light meal and a piece of cake with everyone and commiserated for just the appropriate amount of chit-chat before ducking out to speed home since after a few hours outside my bubble of usefulness as a caregiver I was beginning to get a little twitchy.

So you can imagine my anxiety this past Saturday morning as I left the house before dawn to get on an airplane headed for Chicago to see my younger brother marry his longtime girlfriend and my new sister-in-law, Jannah. I packed light and wore my suit on the plane in order to save time since the ceremony was taking place only a few hours after my arrival. A change of clothes was all I needed anyway since my return flight stood firm only 49 hours later. I’ve never travelled by plane alone before. I’ve never left Liam for more than a day before. I’ve never stood in the doorway of the house knowing that absolutely anything in the world could happen for TWO WHOLE DAYS and I would be powerless to help, or prevent any of it. There is still not a doubt in my mind that Karin could handle anything anyway but that knowledge didn’t settle my nervous legs from rattling the seat in front of me. Didn’t calm the what-ifs as the jet lurched off the ground to start my deepest separation from Karin and Liam in his entire life.

This wasn’t the plan at all.

The plan was for Liam and Karin and I to pack up the van and make a three-day drive out to my brother’s place to take part in the nearly weeklong festivities that will forever be known by its instagram hashtag — #janphi. (go ahead and search it. It was a hell of a time.) The plan was for me to participate in the time-honored fatherly tradition of taking his family on vacation. A road trip no less. The plan was to rejoice in the celebration of the love between my brother and his wonderful fiance with my own wonderful wife by my side. That was the plan, but as any special needs family will tell you, All plans are tentative.

All of them.

The wedding itself was wonderful. Quirky and non-traditional, emotional and touching. The happy couple with each of their families coming from opposite coasts to meet in the middle of the country rose to the challenge of keeping them all entertained. A feat nearly impossible, it would surprise no one that they pulled it off. It’s what they do. But while I could detail the bits that even I got to be a part of given that I was only able to attend the weekend portion of the program, PressureSupport.com is at its heart a blog about my journey parenting Liam. One that I had not anticipated including any journeys taken without him.

It’s the blood clot. Actually no, it’s the blood thinners taken to reduce and destroy the blood clot, and their increased risk of bleeding. Whether internally at the site of the clot, the belts and buckles on his transport laying near to his thighs and hips knocking a too large chunk of the clot free, or the possibility of cranial bruising or bleeding that a long car ride may have created with his head bouncing off the head support of his chair. Not only an accident or sudden screeching stop bringing risk but even just the 18 hours of bounce and rumble in what we could have only hoped would be a calm, leisurely drive.

We consulted with doctors. We consulted with each other. We consulted with Liam. When it was all said and done we knew what the only smart decision could be. In fact I’m pretty sure we both saw the writing on the hospital room wall at least a month before the decision was made but were both unable to admit it.

All plans are tentative. Even the ones that mean the most to you.

Of course I couldn’t miss my little brother’s wedding. So a new plan was put together. Thanks to my mom and her planning skills, hotel plans were changed and flights were booked. With everyone else flying in on Wednesday I’d fly in early saturday morning, only a few hours before the actual ceremony, then fly out early monday morning in what would up being only a few a few hours after leaving the actual reception. Like I said, this wedding was a week-long affair.

I am happy I went. I wouldn’t have been able to live with myself had I missed it and the amount of fun I had dwarfed what I thought would be possible in the three-week long anxiety attack I suffered in the build-up to leaving my wife and son. But even in challenging my expectations, much of the fun was mitigated by a feeling that a large piece of me was missing. A feeling that had it been there, would have helped me to appreciate the moments fully. Off hand comments and gestures to a partner in crime who wasn’t there. A celebration of love taking place a thousand miles from mine.

I could say with some truth that the highlight was the burgers. A rain-soaked “reception” at the downtown hot dog place. One of my favorites in Chicago since Karin and I had eaten there with Phil and Jannah about 4 and a half years ago. (Liam was there too. and he would help his mother give those delicious hot dogs back to Chicago only minutes later.) But it wouldn’t be the whole truth.

I could say and almost be honest that the highlight was the three and a half hour walk I took around Chicago on Sunday afternoon. Without a doubt the longest chunk of time I have spent by myself in the almost four years since Liam was born. Dodging intermittent showers and even a tornado warning that the weather service pushed to my smartphone warning me to keep vigilant and duck into one of Chicago’s towering buildings should I see anything strange approach. Had I had a plan I would have just walked directly to the Art Institute of Chicago and wandered the galleries trying to check off the sections I didn’t have time to see on our previous trip there. Instead I took in the artwork that is the city of Chicago. It is a walk I will not soon forget and a truly fulfilling experience in a fiercely personal way. I am usually a nervous traveller. My anxiety being focused on what could be going on at home grew into a confidence in my step as I explored a distant city taking many of the photos in this post. Like I said, I could say that was the highlight. I’d almost be honest saying so.

Was it the speech? Heartfelt words from my brother to the gathered guests during a  barn burner of a party at Revolution Brewing. When Phil spoke of his amazing nephew and how much he wished that his own sister-in-law was present. A speech  that set me to tears that wouldn’t stop until bordering on the awkward. Yeah maybe the speech was the highlight. It was seldom mentioned but understood by my family how much I wished my own family could have been there with me. To hear Phil talk about how much it meant to him as well, was a pretty special moment. But I think I can think of one more.

While I was out having fun, surrounded by friends and family, food and booze, brand new friends and even more booze, Karin was at home on 24 hour duty. Her parents came to visit and help around the house. The time alone, I mean really alone, could not have been easy for her. Seizures, suction and ventilators and I will forever be grateful for her understanding and support of me going on my own to represent our little family there with my brother who wanted us all to be there. She is a truly remarkable wife and mother and the sacrifice that she made this weekend weighed on my mind. My anxiety came not that she wouldn’t be able to handle whatever could have happened with Liam while she was alone, but that she would handle it perfectly. I have seen Liam start a morning with the sniffles and end the evening being admitted into the PICU. It can happen that fast. It’s not his fault and it wouldn’t have been hers but I had a very irrational yet very real fear that I would return to Rhode Island and have to drive to the hospital from the airport instead of our home. The idea that Karin could go through something like that without me made not only my stomach but also my heart ache.

So I suppose if you were to twist my arm, I mean, to really draw it out of me, back to the wall and gun to my head, the number one highlight of getting on a plane and going so far away?

Today. Coming home. Seeing this boy and the smile on his face.

Thank you for a wonderful weekend Phil and Jannah. Congratulations! I love you both and am inspired by your happiness. And thank you to you mom and dad for making it possible for so many of us to be there to celebrate with Phil and Jannah. But most of all thank you to you Karin and Liam. For understanding why it was important for daddy to leave you both alone, and for making sure nothing crazy happened that mom would have to tell dad about over the phone. Pretty sure my heart wouldn’t have been able to take it.

Happy Birthday Ben

We went to visit Ben today.

Ben was born and passed away six years ago today. Not a day has gone by since that we have not thought about him. A true guardian angel that has kept careful watch over his little brother and in ways you wouldn’t believe has sent messages when we need them that things will be ok.

Someday I’ll tell you how he does it, but I’ve always thought that was material better suited for a book than a blog.

So instead I’m going to spend the rest of the day quietly with my family. Cooking a nice dinner and thinking back on these last six years.

We miss you Ben, and we always will.

For now the Keto is a no-no

Liam had a long slow burn of a seizure tonight. It started slow with a twitch and a full body spasm for only a few seconds every three or four minutes until it clustered about ten minutes after it started. The nasal versed we’ve been trialing to break larger events worked just fine though, and he drifted into his drug induced haze right at his normal bedtime. If he’s going to have a big one, that is just about the perfect time for it. So aside from his normal twitches that’s two for the day today,  this morning’s was much milder.

You may recall that in late July Karin and I elected to admit a healthy Liam into the hospital to transition him onto the ketogenic diet. Hoping that the high fat, no carbohydrate diet and the ketones his body would produce as a result would reduce the quantity and/or severity of his seizures. Within days we were seeing a change. Cranky and miserable while his body fought what instinct told him was starvation, by the end of that first week we saw a few seizure free days and returned home hopeful that this diet really would help Liam reduce the amount of seizures and as such, anti-seizure meds he has always been prescribed.

Just about 14 hours later Karin and I were admitting a very sick Liam into the emergency room for what would end up being a 26 day stay in the intensive care unit to battle septic shock, the ileus (intestinal obstruction) that resulted, a severe increase in seizures, the constant struggles in finding and maintaining IV access including two different central lines being put in (one of them by the surgical team), and the discovery of an enormous blood clot which is the result of the first of those lines. Oh and one other thing but we’ll get to that later.

For the first few weeks of that stay we stayed true to the diet, even when Liam was NPO. instead of the normal D10 or D5 for hydration, Liam’s maintenance fluids were specially made in the pharmacy to give him as little dextrose as possible. His IV meds were specially made because most solutions contain dextrose. The chlorhexidine wipes that hospitals use for sponge baths contain glucose so we went old-fashioned with good old soap and water. Basically, let’s just say that keeping a kid who was sick enough to stay asleep for days and days at a time on  this ketogenic diet was getting a lot more complicated.

While investigating some blood in his stool (I know some of these details are a little  “too much information” but they really do tell the story, ultimately it was another byproduct of the shock and resolved itself eventually) a bright circle appeared on one of his x-rays. A circle that seemed so symmetrical as to appear unnatural it was at first disregarded medically,  The assumption being that it was one of the leads to Liam’s heart monitor or a piece to the in-line suction tube of his circuit. A few days and a few more films later, the diagnosis surprised us all. Gall stones. A ton of them. Little crystals that when his gall bladder was tasked with breaking up such a high fat diet  rose up in revolt and clustered together into a mass to protest.

Freaking gall stones at three and a half.

Now I don’t think I need to explain how severe a gall bladder surgery on any three-year old would be nevermind a child as medically complex as Liam. Lucky for us, the medical consensus was not to do anything. remove the strain on the gall bladder and they should spread out again and not cause Liam any pain I was told. So I asked another doctor, and then another, not believing that finding a gall bladder full of tiny stones wasn’t a more major problem that would require at least some kind of intervention. Come to find out, no one was even all that surprised.

All told, by my very rough estimate, I think Liam has spent about 6 to 8 months of his life on TPN and Lipids, nutrition through an IV instead of his gut. Of course nothing is without its side effects and apparently gall stones is one of them so to find out that they were there was hardly a shock. They were there the whole time. The only reason that we know they are there now is because Karin and I took our healthy little Liam into the hospital to try the ketogenic diet.

A diet.

Adjusting for weight every half-year or so, day in and day out Liam eats the same amount of calories. Pumping through his g-tube exact amounts of protein, fats, and carbs in his formula Liam’s diet for his entire life had been designed to make it as easy as possible for his body to digest. He has grown so big and strong and since we hadn’t had a hospital admission in just about a year Karin and I were convinced that now was the time to try the diet.

Liam is no longer on the ketogenic diet. Until he is strong enough that we consider removing the gall stones (and with them probably the whole gall bladder itself) he will not be able to resume the ketogenic diet. Sepsis and blood clots, staying on seizure meds and giving injections of blood thinners, I feel guilty about trying this diet every single day.

I think I always will.

But even living with the constant guilt, I know that we made the right choice in trying.

We knew what the risks were going in. We were the ones who approached our neurologist to try. Seizures suck enough, the long and short-term side effects of pretty much all meds to control seizures suck just about as bad. To think that there was an option to control seizures and reduce the amount of meds Liam required simply by changing his formula? A case could be made that we would have been negligent in not trying it. Right?

That doesn’t make it hurt any less when I think about everything Liam went through for us to find out. I know he understands. I know he’s a fighter and wants to beat these seizures as much as any of us do. He tells me with his eyes. That doesn’t make me sleep any easier remembering what he had to go through in that intensive care unit. There was no reason that anyone could have predicted the events that transpired from this change. That doesn’t make the thoughts go away that I somehow should have seen it all coming.

*****

The universe works in amazing ways.

Liam’s NICU stay was 153 days long. In a teaching hospital that’s 5 months of residents rotating in and out every 30 days. Among them when Liam was born was Dr. S. just beginning her residency and in her first rotation. About 10 months later she started her rotation into the PICU. At the time Liam was about halfway through a 109 day stay there. The following year Liam was admitted for a virus that attacked his GI and who should arrive to consult when the GI team was called but Dr. S now onto that rotation. During his last few admissions though, Dr. S would just come by to say hi to her buddy Liam whenever she saw his name on the patient list.

Liam has a hematologist now. Cross another specialist off the list. He is now a patient of the hematology clinic at the Tomorrow Fund of Hasbro children’s Hospital. Last week we went in to asses the level of his blood thinner and go over any other concerns of the three to six month course. We weren’t there to meet with the attending of course but the fellow. The fellow, a year-long assignment instead of a month. The end of being in medical school and the beginning of being a doctor. (technically they are “doctors” the whole time but you catch my meaning.)

So it should not surprise anyone at this point when in walks the hematology fellow — Dr. S.

For us and for her it was coming around full circle. Liam had been a part of her entire med school career. She even remarked about it to the attending who popped in towards the end of the appointment.

“Yeah, you’ve been a part of Liam’s team his whole life.” I said.

The attending looked at Dr. S and then back down at Liam and said ” Oh she’s not alone. I’ve looked over his chart. I bet there are a whole lot of doctors out there who this boy has taught something to.”

She’s right. There are. And Liam is an excellent teacher.

The connections that we make with other people mean something. Something important. That is no less true for a person like Liam who can’t make a connection verbally. He can’t sign and for the most part he can hardly smile (with his mouth. Liam smiles with his eyes and anyone who has seen it can tell you that it has the power to change the way you look at the world.) but the connections and bonds that Liam can make above all those obstacles mean something, to him and to us.

During that last hospital stay Karin and I were able to meet a parent whose child had just been trached. We were able to give our experience in how we are able to manage a trach and vent at home. That means something. We were able to meet a doctor we hadn’t yet met and although Liam was not her patient she would visit him and us, and we would talk for long periods about what this life of ours is like. A strong bond of friendship not doctor/patient was quickly formed. That means something.

Any future patients that enter Hasbro Children’s Hospital to try to start the ketogenic diet will be getting an ultrasound of their gall bladders beforehand. Liam did that, and that alone is worth the risk. Maybe the next kid wouldn’t have been as strong as Liam is. He has helped to make sure that other kids don’t need to encounter this problem in the same way. That means something too.

Karin and I brought our healthy boy into the hospital for a week to try the ketogenic diet hoping it would reduce his seizures. A 33 day hospital stay, crazy complications, twice daily injections at home, and we are right back where we started. Only Liam won’t allow me to think that it was all for nothing. It’s his strength that gives me the courage to try whatever we can do to improve his medical needs. Along the way, connections are made that show me how much Liam means to nearly everyone he meets. It’s those connections that I hold on to when I wonder if I made the right move. If it was worth the risk.

It hurts like hell, but I still think that is was.

A quick wave

Set adrift in a fog of exhaustion and cold medicine I’m struggling to find interesting blog topics. The day to day just seems so day to day, and it is tiresome to constantly write about seizures, sickness and shots. Always with this guy it’s the seizures, sickness, and shots.

Until now. Because after a summer of seizures, sickness and shots, now we have …

Squash!

Mmmmmmmm, I don’t even like eating squash but I do so love growing them. Got a favorite recipe for a soup or a secret ingredient we should use when cooking these bad boys? Drop me a line in the comments.

Aside from a lonely little bell pepper just about large enough to pick, my garden has borne all of its fruit, and after harvests of gooseberries (which will be used in beer)and three different varieties of Hops (well, duh),  along with zucchini, a couple types of peppers, tomatoes, of course, and my awesome squash, 2012 was an awesome year for gardening in my yard.

Of course with the squash comes the fall and since my beloved Red Sox decided not to even field a team this year (through selective memory that is how I will remember the 2012 baseball season so if you see me just play along ok?) Liam and I, as you can see, begin to focus our attention to the Patriots 2012 season.

Go Pats!

And so there you have it – a nice quick post to say hello. This way tonight, trying to sleep, when I normally beat myself up about NOT posting nearly as often as I should, I can say “Shut-Up and go to sleep, jerk! I posted today!”

I didn’t even talk about seizures, sickness or shots this time.

Just Squash.

Thank You for Thinking of Us, Now Stay Away.

 

As you can see we are all very excited that Liam is home.

Yes, we are all at home now and we are going to savor this time. When I come home from work tomorrow night I will raise the drawbridge behind me. Release the gators into the moat and begin a weekend of family time in a sublime little bubble of privacy. No nurses, no doctors, no visitors or well wishers, no unit assistants to fill the med-cart, no family, no friends, no case managers with “just one more thing…” It will be me, my wife, and my boy in our home.

If I owe you an email, a tweet, or a blog post explaining how a 3-5 day hospital stay to start the ketogenic diet can turn into a 35 day PICU stay containing some of our scariest moments, I’ll get to it next week. (maybe) but for the next three days I will be a little boy’s father and not a patient’s parent.

Thank you, thank you, thank each and every one of you for reading the blog and sending all of the kind thoughts, comments, instagram and facebook likes, emails, tweets and texts of support and congratulations. Feel free to keep them coming because they all make us smile and it always helps to know how many people are pulling for us. You all have helped us get through the last month and I know many of you are pretty excited that we are at home now and for that I thank you again.

I’ll talk to you all sometime next week.

And the Rocket’s Red Glare. Happy Independence Day

In my earliest Independence Day memories my family would walk down the street to Sabin Point Park for the enormous, unsanctioned, and tremendously unsafe neighborhood bonfire. Bottle rockets zipping around all over the place while all the kids waved around sparklers. It was loud, it was dangerous and it was FREAKING AWESOME.

But as much fun as 6-year-old me thought that running around dodging bottle rockets near an enormous fire was, Mom would have none of it and so after a couple of years the remainder of my childhood 4th of July’s would instead involve professional fireworks displays put on at the local minor league baseball stadium or here in town after an oldies band of course (even when some traitor decided it was ok to start doing all the fireworks on the 3rd. Or no, no let’s do it on the weekend, Yeah it will still ring true on the 6th, right?? aargh, Don’t get me started…). So growing up, I seldom got the chance to partake in the american tradition of blowing stuff up for the 4th.

But I still remember that thrill of seeing my dad lighting off fireworks at Sabin Point Park.

With fireworks being legal this year here in Rhode Island and the whole neighborhood being covered in a dense layer of colored gunpowder smoke for the past three nights how could I deny that kind of fun to Liam?

So just after dark and safely across the street from my house in a huge empty parking lot behind the closed and empty school, Karin and I took my boy out to blow some stuff up.

It was so much more fun than I ever thought that it could be.

I will of course mention that the entire thing was done safely. We left the oxygen tank inside, and the fireworks I purchased were a ground firing type producing a tower of sparks and colors only about 10 to 15 feet high but over a minute or two instead of the rocket type which fire into the sky. These ground bursts were so much better for Liam to focus on and process that he was enthralled with every one of them. Seeing him wave his arms and kick his legs as the sparks started to fly was beyond incredible.

Now I’m hooked.

I didn’t buy enough.

So next year? Oh next year is going to be a blast!

If you are reading this from the USA then I hope you had a great 4th. If you’re not then I hope you had a great Wednesday.

I know I did.

Life at a Glance

So we’ll just have to ease back into things with some photos okay?

I know it’s been a while, I’ll try to do better.

He's Always Had a Head for Hats

Anyway, since last I wrote and you read I joined Instagram (a few days before they were bought by Facebook of course, I’ve worked very hard all these years to avoid facebook completely and now this) and while on the plus side it’s a fun, fast, and easy way to get pictures from my phone to the web the minus side is that it is kind of a closed off app so I haven’t figured out a way to link to a home page or gallery of images for those of you without the app. Instead I’ll post a collection of my best Liam cell phone photos here every weekend (until I forget about this plan and move on to some other thing I won’t get around to.)

Saturday Stripes

You all deserve at least an update on things though, so a couple things from the week that was…

Ready for Sleep

We packed up and headed north for a day at Children’s Hospital Boston to see an eye specialist last week which went about as well as it could despite it taking so long.  I need to remind myself next time that trips to Boston will ALWAYS take twice as long as I predict they should and that way I won’t set myself up to get angry when whatever can delay us does delay us. But as you can see Liam handled it well which is all that matters.

Come With Me if You Want to Live

Easter happened and we were lucky enough to have a weekend long visit from Karin’s brother, his wife, and my 4 wonderful nieces from Pennsylvania. Unfortunately Liam came down with some kind of nasty bug just as they got here and so his time with them was cut a bit short but it was a wonderful visit just the same. We don’t get to see them nearly enough and I’m glad to say that I think everyone involved had a great time.

Sabin Point Park and Niece

A long time ago when I was a more reliable blogger I hatched a plan to photograph and catalogue all the little bits involved in Liam’s care. Equipment, accessories, medical supplies and the like I had wanted to dedicate a post to each and every part.  Initially I had planned on breaking out all my old photography equipment.  Backdrops and stands, umbrellas and light boxes I wanted to take a portrait of each piece.

Neb

Washing Liam's Dishes

Maybe someday I’ll find the time to do that but for now I think of this as more guerrilla documentary style. Instead of well-lit and in a vacuum I’ll show the pieces in action.

What 10pm Looks Like Here

Remember the game Boxing for the Atari 2600?

It’s Liam’s life at a glance. Put enough glances together and you just might start to see a bigger piece of the whole picture.