Pressure Support

Liam meets Santa

For almost ten years I’ve called Evelyn a friend but I suppose acquaintance would be more accurate. Walking past her desk every morning on my way to my own our talks would range from 15 second hellos to 20 minute complaint sessions about the Red Sox. She even took these photos, as we passed her desk on the day Liam was discharged from the NICU. (I wrote about that day and these photos here.)

For ten years I’ve called Evelynn a friend. After yesterday, and what she and her family did for Liam, I feel like I should call her family, and I don’t know if I’ll ever be able to thank her enough.

*****

“Hey Eric, have you taken Liam to get his picture taken with Santa yet this year ?” She asked, the beginning of last week, as I made my way into the office.

 

“Hmmm, No. Actually Liam hasn’t ever met Santa Claus yet, we just can’t wait in a germy line of kids at the mall or anything. Someday though, and he’s almost 6 years old now so soon I hope.” I explained, but Evelynn asks about Liam every day. She knows the deal.

 

“PERFECT!!” She shouted ” what are you doing next Saturday? You have to come to my sister’s house.” She picked up the phone in front of her and held a finger up to make sure I didn’t walk away. “Yeah, it’s me, what time on Saturday? Liam is going to come….. Liam!, that kid I was telling you about. His family is going to come on Saturday. Ok. I’ll let him know.” She hung up the phone and that was that. On my way into work on a monday morning I somehow had made plans to go to someone from work’s sister’s house for dinner on Saturday night. And I still wasn’t exactly sure why.

Evelynn had to explain.

If we came to her sister’s house on Saturday night, Liam would finally get to meet Santa.

******

Evelynn’s sister’s family had had her own children’s pictures taken with Santa and Mrs. Claus at a local restaurant from when they were infants until they were in college. With all the kids home for the holiday this year they had hoped to continue the tradition with a picture of their nearly adult children but the restaurant now closed leaving them without a place for Santa to see them this year. Until Evelynn’s sister had run into Mrs. Claus somewhere shopping. Mrs. Claus explained that Santa would be happy to stop by her house to take the picture, and a date was set. Plans were made.

Santa was coming, and by Evelynn’s thoughtfulness, and her entire family’s boundless generosity, it turned into one of the most magical evenings of my life.

We arrived a little early, and after getting Liam’s chair up the portable ramp we travel with, introductions were made. Introductions made so warm and comfortable that we were instantly set at an ease of familiarity among a group of strangers and one acquaintance. No one asked about Liam’s chair, or his syndrome, or his wheelchair, but each and every one of them pinched his cheeks, and said hello, and told him how handsome he was. A house filled with relatives and lifelong friends who instantly treated us as one of their own.

And when they all heard that Liam had never before met Santa Claus, the entire party seemed to change from a oppurtunity for them to relive old family traditions to a celebration of their part in starting a new one for us.

*****

And then Santa arrived and met Liam.

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Along with Mrs. Claus and their elf helper Tiny, Santa was able to stay for about 45 minutes. He sat, holding Liam’s hand and whispering in his ear for easily 35 of them. Concerned that we were monopolizing Santa’s time too much, many in the room with their own camera’s firing away and with joyful happy tears in their eyes waved away my concern telling us and Liam to take as much time as we wanted. They would ultimately get their own pictures taken but their patience and interest in being a part of Liam’s first exposure to Santa was truly a testament to the power of the Christmas Spirit as hokey and Charlie Brown Christmas as that may sound.

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Liam had slept for almost 22 hours that day. A rough end to the week with seizures induced a medicine change on friday night which wiped him right out for most of Saturday. Most but not all, for when St. Nick was whispering in his ear and holding his hand, Liam was wide-eyed and alert, engaged in communication and tugging for dear life on Santa’s beard with his free hand. Liam won’t tell me what they talked about. He won’t even tell me if Santa told him if he’s on the nice list or not. Whatever Santa had to say to Liam will always stay between them. I like that.

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After Santa had to leave and get back to his busy week-before-Christmas schedule, we stayed and we ate dinner and we got to know everyone a little better. When they found out that Liam’s birthday is the day after Christmas the whole group of our new friends sang Happy Birthday to him. We left happy and to invitations for future plans including a repeat holiday visit next year if possible, and as we made our way out the front door and down the ramp the first snow of the season here started sticking to the ground.

It was downright magical.

The magic of friendship, the magic of a kind and open-hearted family, and the magic of Liam’s positivity and love.

But, I think most of all, it was the magic of Santa.

 

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The Names of Things

Liam’s agency and dignity being among our top priorities as parents, it’s important to us that , whenever possible, Liam get to choose what is done to/for him. Unable to speak, or point, or  grasp, Liam communicates his wants with eye gaze and head nods. He picks out his outfits every day (between choices given him by his stylist.) Sometimes he decides in an instant. Sometimes he needs a little while to think about it, and sometimes he just can’t be bothered with the demands of making his own decision. He’s five. I’m gonna just assume that all that is universal.

The thing is, when Liam is really alert and engaged in the decision-making process, his preferences are apparent. His attitudes obvious, even strangers would have no problem recognizing his meanings. So it was the first friday night in June during the Dream Night festivities at the Roger Williams Park Zoo. His wheelchair parked in the gift shop, in a corner to stay out of traffic, Karin and I would each approach with pairs of stuffed animals.  A bracket style gladiator tournament to find the winning souvenir  with Liam’s head turns and eye gaze applying the thumbs-up or down decision on just who would come home with us that night.

 

Elephant vs. Zebra., Monkey vs Buffalo, on and on it went until the winners were then put in again. Decision after decision until we were left with a winner.

An Anteater.

Liam’s anteater.

And his name is Anton.

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*****

There are an awful lot of stuffed animals in our house, and they all have names. Karin is the namer of things, and she’s incredibly good at what she does. We have lions named Levon, Lemar, Levi and Lenny (and Frodo, and Ribbons, and Roar-y). Penguins named Gordon, Gordon Jr. and Freddy. A whale named Whale-n Smithers, and even a watering can shaped like a pig and whose name is Rusty. Everything has a name around here. We have a dragon named Douglas, and a stuffed Dinosaur from a hospital gift shop named Enterobacter-saurus after the bacteria in his blood stream from his burst appendix that kept Liam in that damned hospital.

*****

But right from the start Anton seemed different. Liam seemed a bit more attached to the stuffed friend he had to tell his parents he wanted three times before we believed him. He was one of only two stuffed animals that made the trip down to Jersey with us last month. (The other one also in the picture below, LeMar the Lion, has been in Liam’s bed with him since he was ten days old. A gift from his Uncle Phil and Auntie Jannah)

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And before long it would become apparent to us that Liam had decided that Anton was his favorite friend to sleep with. Months now, it’s been Anton, through adventures with flooded diapers and trips in the washing machine and dryer. It’s Anton. So much so in fact that eventually I just had to post a picture to Instagram about it.

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And after seeing the picture, when I tagged their handle, The good folks at the Roger Williams Park Zoo sent along a comment…

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See it? That alone, I thought was a pretty cool thing. Cool because it’s been fun to interact with the zoo on twitter and instagram every time we go there, but also cool because they’re right. Anton is a good name for an anteater.

As cool as I thought all that was though, this morning things got a whole lot cooler. This morning I got an email from the good folks at the Roger Williams Park Zoo. An email with the subject line Anton the Anteater.

Here, I’ll let them tell you, Here’s the text of the email I got.

Hi Eric –

Firstly, I would like to let you know that here at the Zoo we read your blog and it makes us so proud to be able to offer Dream Night, as well as being a space that you and your family love to come to. I noticed on Instagram that you had recently visited the Zoo, and your son Liam had picked out an anteater toy, named Anton. Well, it is a happy coincidence that we recently had an anteater birth, a little boy!

So, in recognition of the support you’ve given to the Zoo over the years, we would like to name our newest addition Anton as well, and invite your family (original Anton included!) to come visit the Zoo as our guests for the day.

Let us know when you’d like to schedule your visit, and thank you for your continued support!

Anne

 

MIND. BLOWN.

There are so many reasons why this is probably the coolest thing that has happened since I’ve started this blog. I’ll only get to a few …

First: I was already almost dancing around our house this morning when I read this since it was just plain awesome to hear that an animal at the local zoo was being named indirectly by us, and by extension Liam. The Roger Williams Park Zoo has always been such an important place for us as a family (as new readers can read about here, here and also here) but then Karin started sending me more information that she was reading about our new friend Anton from the Zoo website and I got even more excited since it seems Anton himself is kind of a big deal. (from the linked article)

Zoo Executive Director Dr. Jeremy Goodman commented that the birth of a male giant anteater is a significant occurrence in captive populations, because there are very few males in the Association of Zoos and Aquariums (AZA) Species Survival Program.

Corndog (Anton’s Mom) was selected to come to Roger Williams Park Zoo to be bred with Johei based on recommendations made by the AZA. Giant anteaters, native to grassland and lowland tropical forests in Central and South America, are listed as “vulnerable” by the IUCN due to loss of habitat and hunting. It is estimated that only 5,000 animals remain in the wild.

Besides, How can you not fall in love with something like this…

 

Photo by Bret Cortesi for the Roger Williams Park Zoo Website

Photo by Bret Cortesi for the Roger Williams Park Zoo Website

 

Second: As goofy and silly as Karin and I can get with the naming thing. Names mean things. As Anton the anteater makes his way in this world and is transferred to another zoo somewhere in the hopes that he will help the population of his species, he will continue to be called Anton. Liam will always have that indirect connection to him. I realize that this may seem like I’m greatly overstating  things but like any parent, I often think about the impact that my son will have on this world. The waves of influence that Liam and his unique position and perspective will create. The fact that my wife’s love of alliteration and of naming things (ESPECIALLY for her son) have become one of those waves, and that it will continue to go on rippling, fills me with happiness and pride.

Names have power. In the Patrick Rothfuss novel The Name of the Wind (which I highly recommend) he writes…

Words are pale shadows of forgotten names. As names have power, words have power. Words can light fires in the minds of men. Words can wring tears from the hardest hearts. There are seven words that will make a woman love you. There are ten words that will break a strong man’s will. But a word is nothing but a painting of a fire. A name is the fire itself.

Yeah, in the novel he’s referring to a type of magic. I still think it fits and the line quickly jumped into my head this morning as I thought about all of this, because no matter the meaning of the name Anton, the story behind him coming to it will always mean something to me. To my family.

To my boy.

Third: I’m already living vicariously through him. I assume the AZA will probably end up transferring him somewhere when he’s old enough to breed. Maybe we can visit him. San Diego? The Bronx? Maybe someday we’ll decide to plan a whole vacation to wherever little Anton ends up having kids of his own. We’re zoo people. Why not take a vacation to see other zoos?

And finally, just because it’s one more story that we get to tell about how lucky we are to be the parents of this wonderful boy of ours. Things like this would obviously never happen without him. His influence and the energy that he puts into the world has continued to come back to us in surprising and exciting ways. This is a story that I will forever enjoy telling.

The time my son and my wife got to name the new giant anteater at our local zoo. How cools is that?

And it’s all in a name

A name like Anton.

 

Still here.

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I could (and will) tell you awesome stories about Liam about to start trialing time unattached from his ventilator, or how amazing his progress as we cruised towards the end of his school year. I could (and will) post the essays I’ve started on my problems with the IEP process or my frustrations with what is commonly called the “dadblogging community”. I could (and will) regale you with the tale of finding a hidden gem of a local hiking path that is wheelchair accessible.

Although I could also (but won’t) tell you awful stories of two months of my erratic and inconvenient work schedule wreaking havoc on the time I’ve had to spend with my wife and son. I could (but won’t) post an essay about the grind of 24/7 care especially when the once a week night nurse relief unfortunately had to miss her shift due to a family emergency, leaving a 14 day stretch of less than 4 hours of sleep a night for both Karin and I. I could (and still might) regale you with the tale of the 14 hour hiccup attack and the car inconveniences and all the other things that come up and take away our ability to get the rest we need. The rest I apparently need to have the energy to blog at the end of the night (early morning) while I’m up watching Liam.

I really need to just start blogging in the morning.

In the meantime I’ll just post a picture and a wave hello. Tomorrow my work schedule goes back to normal. Tomorrow our usual daytime nurse (who has been caring for Liam for the past four years) comes back after 6 weeks on a medical leave. On Friday I’ll start a ten day vacation from the day job.

I’ll be around soon. For now here’s a picture, and a wave hello.

We’re still here. Thanks for coming back.

Events

They’re not even Current Events at this point. The most recent of which happened over a week ago now, I can’t exactly call them news.  Instead we’ll go with events. Events that have all happened within the past 3 weeks, but are the results of the past five years.

If you follow my twitter feed you already know what I’m about to say. Throwing 140 characters together on my phone is much more convenient to shout something into the ether. A blog post takes a bit of time. Time that could be spent sleeping, or reading, or watching Futurama episodes that I’ve only seen three times already.

But these are significant events, and do deserve their own blog post. They are accomplishments that I never would have achieved without this blog, in both direct and indirect ways. They are accomplishments that (hopefully) have already changed the path my career and ultimately my life will follow moving forward. But enough chatter….

Event the First: Three weeks ago, after a month of emails and two separate interviews, I was asked to serve a two-year term on the Board of Directors for the Rhode Island Parent Information Network. (RIPIN.org). It’s a pretty big deal. My term will start in September. I can’t even begin to express how proud and honored I am to be a part of this wonderful organization as they continue to help all Rhode Islanders by supporting and training parents to be their own best advocates in health care and education.

Two days after hearing the news I was lucky enough to be able to attend the RIPIN annual staff meeting of 115 employees (70% of which are the parents of children with special needs, or are people with special needs).  Humbled and awestruck by the level of excitement, dedication, and positivity in the room I gave myself permission to accept the legitimacy of my story, of our story, and realized that I could add my voice to this group. That along with the nervousness of trying something new, I belonged in that room with those people.

I realized that it was time to get to work.

Event the second: Only a few days after having my mind blown by the enormity of the opportunities that I now find myself given, it happened again.  The very next Monday I gave a speech at a conference on fatherhood during and after a child’s NICU stay. I gave a version of a presentation that I have given before, adding some points on the aspects specific to fathers. It was well received and I’m happy with how it went even if I’ve spent the week and a half since remembering things that I should have written into the presentation. There was a significant number of questions from the audience and while I didn’t check my watch I’m fairly certain that I more than filled the hour I was allotted to speak on the day’s agenda.

But it was during the second half of the conference that I was asked to be a part of a panel discussing the resources available to fathers post-NICU. A panel that the conference organizers wanted me to discuss and focus on this space right here. My blog. PressureSupport.com. To be approached solely because of the writing I do here has made me incredibly proud, (Hrm, So proud, I guess, that I waited 10 days before posting about it here. I’ll be better.) and I think I had some valid points to bring to the discussion but it was the other men on the panel that humbled me and inspired me. Men from state organizations, and non-profits across Rhode Island. Men dedicated to advocating for fathers, their rights, their needs, and their emotional supports.

I truly felt like I had no business even being introduced to sit at the same table. These men all have dedicated their careers and in essence lives to advocate for others. For parents. For fathers and ultimately for their children. For anyone who needs a voice.

For me.

These men, that speech, and being asked to sit on such a prestigious board. Inside of a month all the little small decisions I’ve made in the past 4 and half years since starting this blog, like a timely email to the right person, or a blog post that someone I work with shared on facebook, and deciding that I did have something to contribute to the Women & Infants Hospital Wide Advisory Committee for Patient and Family Centered Care and throwing my hat into the ring for membership. All decisions that had something to do with this blog and all that have led me to this point in my life have all come to pass in these last three weeks.

Not only do I finally know what I want to do with my life, but I’m at a place in my ability, knowledge, and confidence that I just might have also found a way to get there.

Every day since that conference (save for the fourth of July holiday and the Saturday and Sunday after) I have had some form of contact, emails, phone calls with someone who was either there or heard about the speech I gave. I’ve been asked to do more speeches. Tomorrow I have a breakfast meeting with one of the men that I sat on the panel with. Next week on my day off I have another scheduled with a different organization.

It’s all happening now.

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Sometime last year I spoke on the phone for a few hours with another blogger who I respect and admire, and who has worked in this advocacy realm since her daughter was born with special needs, about how to increase my role of advocating not only for my own family but for other families of children with special needs. To turn this passion into a career. To support my family by doing the thing I am most passionate about. To support my family by doing something that I would be (and already am) doing for free. Ultimately the main takeaway wasn’t any specific steps, or classes to take, but only to allow myself permission to accept that our story and my perspective have value. That Liam’s story can change the way a medical professional sees their role, or their own patient’s perspective. That the experiences that Karin, Liam and I have endured can in any way help a family out there going through something similar.

Karin and I have always said that there must be a reason that we were the parents picked to raise a child as special as Liam.

I think I may finally be starting to accept that.

Coming from someone who has never really had the confidence to take risks or stick my neck out there, that is a pretty big deal.

Now it’s time to get to work.

 

 

Staying Ahead

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It’s hard work being five years old.

I haven’t posted much about seizures lately because things were going so well, I certainly wasn’t going to be the one to jinx it all. Without a doubt, 2013 has been Liam’s most comfortable year in regards to seizures.

The year started shaky as we got used to intervening with either versed or diastat daily but in May all that changed when Liam had a seizure that lasted close to an hour.

It lasted through the hemming and hawing of a night nurse who no longer works here not waking us up until it was way too late. It lasted through the ambulance ride to the hospital. It lasted through multiple medical interventions by ER and PICU docs. It lasted until Liam, already given multiple IV doses of Adivan was given a loading dose of phenobarbital.

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And then, as quickly as it all began, it ended. Defeated by dose after dose of sedation and more than exhausted by the electrical storm in his brain Liam lost consciousness. He would be discharged from the hospital the next morning without any other symptoms present.

Liam wouldn’t wake up for three and a half days. Sadly, we’ve seen this type of thing before (actually on more than one occasion we’ve had to medically induce a coma for weeks at a time.) We weren’t surprised as we knew how long the half life of all the phenobarbital he took was but it was starting to concern us. On day four Liam woke up and though he was groggy for another 12 hours, he was, in essence, none the worse for wear.

I’m sure that both Karin and I were marking the days in our heads but niether of us would say it out loud for at least a month in fear that talking about it would end it all.

A Month?!

A month without any seizures. A month without even the twitches and other signs of underlying seizure activity, and then one month turns into two. Two into three and before you know it an entire summer has gone by without a seizure. It would seem that a near overdose of anti seizure and sedation meds worked as what we like to call Liam’s “reset button”. He was awake more, he was more attentive at his school programs. He was alert and active (and now I’m all out of a adjectives for this alliteration).

We’ve had to medically intervene with some seizures lately. I’m pretty sure it’s been four times in the last 6 weeks. 4 times last year would be a day and a half so I’m certainly not complaining. It’s the start of something bigger though so it’s time to make a change.

The thing is, it’s never going to stop chasing him. It will always catch up. Whether by weight outpacing recommended doses or side effects outpacing the benefits, be it seizures or their “treatments”, nothing lasts.

It’s time to make a change.

What we are seeing now are signs that these are no longer tonic-clinic seizures but Liam is back to what we used to call “infantile spasms” but now due to his age, the neurologists call them “epileptic spasms”. Of course most of his current medical cocktail are ineffective against spasms and so after a phone call with Liam’s neurologist this morning we’ll be re-starting a med that proved itself early on in Liam’s life. We’ll get an appointment to go into the office next week to start weaning off of some of the other meds he’s currently on but for now we want to get ahead of this.

Liam needs the head start because while five or six big tonic seizures a day last year was hard, the thirty or forty spasm attacks a day when he was an infant was even harder.

I hate every single seizure med and treatment that Liam had ever tried, but I hate the seizures more. So when they bob we’ll weave. When they zig, we’ll zag. I’m not happy about changing Liam’s medical regimen but I’m hopeful. Hopeful because this treatment has worked before and he’s been off of it for a few years so hopefully it’s still effective.

We’ll see.

The short stay that we wanted.

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We’ve never taken Liam home from the hospital while he was still “sick”. 40 day stays seldom end with discharge if there is still the hint of infection, so we were slightly surprised when the word to break free came on Thursday afternoon. Not that we complained or did anything to stop it mind you, but slightly surprised nonetheless. The attending doc who discharged us was right when she commented that once the seizure that brought us into the ER had been stabilized the remaining symptoms were not enough to keep us in the PICU. Since heading upstairs to the non-ICU floors is not really an option for Liam it was only logical to send us home. I believe her direct quote was actually “there’s nothing here that you guys couldn’t handle.” She’s gotten to know us pretty well over the years.

Still, I’d be lying if I didn’t say that these last 24 hours hadn’t been tinted with more than the usual amounts of stress and worry. Barely 30 hours after getting home Karin and I still find ourselves waiting for the other shoe to drop, for one of these mild symptoms to send us bouncing back into the PICU just like we have so many times after a hospital stay.

******

I blog more when Liam is in the hospital. It’s a great way to let family and friends know what’s going on but it also gives me something to talk about. Something in the present because lately I’ve been focusing more on our past.

A few months ago I told you about a presentation I was writing about our story. I’m happy to report that it went well. Very well in fact and I have been asked to do another. Tuesday I will be the keynote speaker for the Women & Infants Hospital Schwartz Center Rounds. (You can read more about Schwartz Center Rounds here). After speaking for 15-20 minutes (no small feat in itself, that first presentation I went on and on for almost 45!) Karin and Liam and I, with the aide of a facilitator, will answer questions as part of a panel discussion for an audience of doctors and nurses, who will receive continuing education credits, along with other caregivers and hospital staff.

It’s kind of a big deal.

It’s why I have been focusing so much on our past. On Liam’s time in the NiCU. On the impact that nurses and case managers, and therapists have had on our family and its development.

It’s why along with meditations on our past there have arisen very new and exciting thoughts about our future. About my future. It may have taken me 35 years but I think I may have finally figured out what I want to be when I grow up and that it has something to do with writing and speaking about patient advocacy.

And it’s why I shouldn’t be blogging any of this right now. It’s all time that I should be working on my speech.

Thank you all for the thoughts, prayers, and well wishes this week when you heard that Liam had been hospitalized. Getting all of those tweets and comments and emails is another reason why I blog more when Liam is in the hospital. It’s nice to know there are so many people out there who care about us. It means more than you all know.

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Dental Plan

Rare Disease Day was this week and I did nothing here to commemorate it. I’m terrible with those things and don’t even know they are happening until the morning of, when inevitably someone will mention it in my twitter feed. The week before last was National Tubefeed Awareness week or “Tubey” Week but even though Liam has been tube fed his entire life, you wouldn’t have heard that from me because, like I already said, I’m terrible with those things.

Anyway, I’m falling back into that trap where blog posts need to encompass some grand idea or story and so I’m trying to head it off at the pass. Parenting Liam while exciting at times isn’t all big revelations and medical emergencies. Most of the time it’s just getting through the day to day like anybody else.

Like going to the dentist.

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Liam handled it better than I did but in the end the dentist’s final words were “whatever you’re doing, just keep right on doing that because everything in there looks exactly as it should.” so, we’ll take it.

Due to Liam’s annual month-long hospital stays and other illnesses, then throw in a half year on blood thinners, and this was Liam’s first ever dental appointment. Thanks to prematurity, not eating food by mouth and breathing not by mouth but by ventilator (causes the gums to become more fibrous making it more difficult for teeth to break through) the delay was not a problem because Liam, in essence, still has the mouth of a two year old. Which is why at this very moment of 2:12AM instead of sleeping peacefully, he is fitfully tossing and turning in the pain of yet even more teething.

There isn’t enough Children’s Motrin in the state, the teething just doesn’t stop around here. Ever.

Might be time to switch to a bit of Whisky on the gums. . .

and time to try something new for Liam’s teething pain also.

G’night.

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.