special needs

Screen Time. 

Timing. It’s about timing.

When games aren’t really games.

Wait for the ring to surround the space invader.

Hit the headswitch when it does.

*BOOM*

Explosions. Fireworks. Applause.

Change to the communication app.

It’s about timing.

Wait for the green box to surround the words you want to say.

Hit the headswitch when it does.

*BOOM*

“Yes”

*BOOM*

“Hi Mom”

*BOOM*

“I love you”

 

You guys can control the screen time of your kids all you want. I get it. It just doesn’t work for our family. An ipad with a headswitch acts as Liam’s voicebox, in the same way that his vent acts as his lungs. And not so long ago neither would be possible. Especially at home and not in an institution. Not so long ago, the technology wasn’t there.

It’s about timing.

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The Limited Edition Olson & Son Hopyard T-shirts are still on sale at this link until September 1st. If you’d like the hottest Pressuresupport and hopyard gear do not miss out on this sale. We have achieved our goal number needed to guaranteeing a print run, so there’s no doubt that shirts will be shipping out about 10 days after the sale ends.

I want to thank everyone who has ordered, or shared the link for all of your help and support. So many people shared the sale page link that I was near tears at work trying to thank everyone as it was happening. It happened so quickly that I was overwhelmed by how many of you out there wanted to get the same shirt Liam and I wear. The Olson family appreciates all of you.

 

 

Proud.

This morning I woke up in a fancy convention center hotel room about a half hour north of Philadelphia after flying there yesterday. A few hours later I gave a speech to a national meeting of more than a hundred pediatric nursing directors for the home nursing company that provides Liam’s nursing. The entire time I was there I was treated like some kind of celebrity. Initially afraid that my speech seemed to focus too much on the negative aspects of home nursing, my speech was very well received and gave me even more reassurance that Liam’s story, our story, has value.

It was pretty awesome.

Still wasn’t the most awesome part of the last 48 hours though.

That distinction goes to visiting Liam at school yesterday morning, a few hours before my flight out of town, to see him use his walker again for the first time in almost four months. Kiddo exceeded everyone’s expectations.

You have never seen true determination until you have witnessed Liam walking down a hallway.

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Before we could even strap him into the walker those legs started pumping and he chased me and his mom down the hallway about 50 feet.

I’m pretty proud of my speech, and the fact that I was even asked to address a national meeting of nursing company professionals, but seeing Liam walk again so well after fearing a big regression over the summer is cooler than anything I could have done the past few days.

It’s not even close.

At my house right now.

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Karin is asleep in our bed.

Liam is asleep in his bed. The gaseous results of his recent formula change rumbling over the baby monitor to the living room and wafting their way across the whole first floor.

I’m on the couch. Listening to Liam’s breathing (and farting) pattern over the monitor and laughing to tears at old Cheers episodes.

1:30am on a Wednesday. It looks a lot like any other night at 1:30am at my house.

Smells the same too.

He’s lucky he’s so damn cute.

Sure Shot

The first three or four times I tried it, it wasn’t so bad. Environment can be everything. In a hospital room, on a hospital bed, IV’s and catheters, nurses and doctors, the med cart, nothing there is designed for comfort.  Learning how to do it was nnecessary for Liam’s discharge so those first four times of doing it myself just didn’t seem as difficult. Not until we got him home. Not until I tried it on our couch, in our living room, somewhere that Liam should feel safe from things like this.

No, it was that 5th time I tried doing it, in the comfort of our home, in front of our TV, stretched out on our own brown couch that brought tears to my eyes. That made me sick to my stomach. That made me hate, actually hate a medicine that I knew Liam needed in order to stay healthy. It’s been almost three weeks of doing this now and it hasn’t gotten any easier. Twice a day for the next 2 to 5 months and I’m sure I’ll never get used to this.

I will always have a hard time giving my son his shot.

It’s only a 27 gauge needle, just about as thin as they make them and barely as long as your thumbnail, but that doesn’t make it any easier. I hate the whole process. Drawing up .2ml dose, finding a bit of fat that hasn’t yet been pierced or bruised, wiping the area with alcohol. The build-up to the main event. To try to be gentle and gingerly about it will only backfire I have learned. You have to just stick that needle in there. A 45 degree angle to stay above the muscle but under the skin, we want fatty tissue for this. Thighs, a bit of the belly, those big beefy arms on my boy, a pinch of the flesh before the prick and a release just after the plunge, his eyes go wide for a second while his upper lip curls in a jolt of quick pain.

Pulling back it’s over as fast as it started and it obviously pains me more than it does him because almost every single time Liam will be back asleep only seconds after it’s over while I obsess over whether this one will bruise. This isn’t a knock-out drug at all, the return to sleep has nothing to do with narcotics. Sadly Liam is too accustomed to being poked and prodded. I’m just not at all accustomed to doing the prodding.

The blood clot begins below the knee and travels high enough into his abdomen and under his intestines to be hidden from the view of the ultrasound. It is a big one, the result of a major disruption to his clotting factor when Liam was in septic shock. His own blood basically poisoning him. The central line it grew around never even had a chance as it was only  in a couple of days before the clot took over and the line stopped giving a blood return for labs. The lovenox in these shots is what will help to break that clot up, hopefully preventing a pulmonary embolism in the process.

He needs this medicine and I know that. Hours before or after I have to give this medicine when the intensity of having to hurt my child in order to help him fades I feel a sense of pride that I am able to give him what he needs to get better. That pride gets forgotten when I take the syringes out though. That’s when the nerves, and frustration set in.

Like I said, it’s been three weeks of doing this and I haven’t gotten used to it yet.

I hope I never do.

 

Freedom

We signed on the dotted line this morning. Checks changed hands, proof of insurances were copied and after 2 years of dreaming, hoping, and fundraising we took hold of the keys.

We didn’t buy a van, we made an investment in Liam’s freedom.

18 months before Liam was born Karin and I bought a new car. “It’s a family car! It has 4 doors! a car seat will fit back there just fine.” we told ourselves as we drove off the lot in our Honda Civic. If I were a more ambitious blogger I would videotape the many, many steps involved in taking Liam’s wheelchair apart to fit it into that car just to get him to a doctor’s appointment or to school. Seat goes in the trunk, wheels are taken off and put on floor of front passenger seat. Frame tipped onto its side and buckled into passenger seat. Liam in his car seat in back middle, vent and go-bag (emergency supplies and suction rig) on passenger side  back seat, Karin, the oxygen tank and a diaper bag all in back on the driver’s side.

It wasn’t exactly the safest of transportation options.

Thank God we have my parents so close and so supportive because we have usually been able to trade cars with them from time to time in order to borrow my mother’s mid-sized SUV. Wheelchair does fit in the back but it’s too heavy to ask Karin to have to lift it almost three feet off the ground and into the storage space by herself. At this point Liam himself is getting too heavy to ask Karin to lift him high enough to get him into his car seat with his afo’s on and neck support collar, oh and the ventilator, that thing is kind of important. She can do it, but the angle needed isn’t fair to anyone’s spine or to Liam himself as he basically gets folded in half for the transfer. Even though it has a bit more space than the civic and has been a workable option so far, the SUV is also not the safest of options.

This morning at around 11:00 we drove off the lot with Liam safely secured in his very own wheelchair accessible van opening this family’s opportunity for adventure  wide open. Gone are the days of worrying how we could attend parties, events, and important appointments. Gone are the weeks that we would suddenly realize that aside from Liam’s school Karin hadn’t left the house in over a week. Gone are the hassles and headaches of taking apart wheelchairs, and transferring ventilators without de-canulating the boy.

Don’t worry, his Mom was driving.

Of course this is a life changing event in the life of our family because its impact on Liam’s safety but Karin and I are also celebrating this because it is the first time ever that we will be a two car family. Karin and I have never had two working cars before and so not having to base each other’s schedules around each other’s schedules will be a new and exciting time for us. Karin won’t be left stranded while I leave for work and I will no longer be stuck looking for a ride home on days when Karin needs the car. This is a major change to our routine and dynamic and I’m excited to see how it plays out.

The local zoo that I wrote about in my last post has no idea what they are in for. Armed with a yearlong membership and the ability to safely transport Liam without me or a nurse Karin and Liam will be there ALL THE TIME! On the weekends that I have to work I think I can now expect a visit from a special little guy every now and again. I don’t even want to think about how often I’ll see the word Target on our incoming credit card bills in the coming months.

It deserves a post of its own of course but I’d be remiss if I didn’t use this particular post to thank the people who helped us get here. To thank my parents for all the help, support, and flexibility to their own schedules that they have given us over the years. To thank all of the family and friends who have volunteered at pasta dinners and raffles, and donated money and time and prizes to the Liam the Lion fund. To my co-workers and all of the employees of Women & Infants Hospital who bought bracelets and made baskets and for the amazing pasta dinner that I wrote about here. We wouldn’t have gotten to this point so quickly without the amazing outpouring of support and help from so many sources.

Thank You for our freedom.

I’ll talk to you later.

By the way… We Olson’s like to name things. As such and as if she were a ship, we need a name for the van. I proposed Rocinante but now that we’ve driven her with her power doors, she’s just too fancy to be a Rocinante. My father’s first suggestion was The Falcon (of the Millenium variety of course) but she hasn’t yet made the Kessel run and also Karin shot that one down. So I’m not promising we’ll use any of them but if you want to throw any name suggestions our way in the comments we would be open to that.

There is no “impossible”.

Head down, hands balled into fists, face turning red.

It took close to thirty minutes but he would eventually make it across the room.

And back again.

Liam independently moved himself from one place to another.

In doing so he demolished my understanding of the terms effort, strength and determination. I am being completely honest when I say that I have no idea where he gets it from. Not from me for sure. I’ve never worked as hard for anything in my life as Liam works to take a walk with his Mama.

To say that I am proud is too common a phrase to use for what moments like this make me feel. This can’t be just pride. There’s got to be some better word for this, I just don’t know what it is.

He wasn’t supposed to do this. Although he wasn’t supposed to thrive, or grow, or eat, or breathe, or come home at all either. But he certainly wasn’t supposed to walk.

Good thing his lazy dad kept forgetting to tell him that.

I’ll talk to you later.

Note: The video was taken by Liam’s nurse who earned himself some big points with me by being quick with his camera so that I could see some good footage  before I even left work that day.

A night in the Life

I’m not sure that many people who ask about Liam understand how literal I am being when I say ’round-the-clock care’ in terms of Liam’s special needs. It means what it says. Due to the ventilator, but more importantly the seizures, Liam needs someone to be at least somewhat awake and alert every minute of the day.

I get asked about it all the time. “Why does Liam need nurses at home?” they ask.

“Liam doesn’t.” I tell them “It’s his Mom and I who need the help.”

So for anyone curious about how we actually achieve “Round-the-clock Care” in our house here’s the schedule. We’ll call it

The (Lack of) Sleep Schedule.

Night Nurse Nights. (mon & tue)

8:30pm. I get home from work.  Dinner time and then playtime with Liam.

10:00pm — Liam gets a couple of medicines at 10:00 along with the start of his ten-hour overnight feed so we get those set-up and change Liam into his pajamas at the same time. After that we have a little more time alone as a family to relax a little bit.

10:45pm —   We get Liam comfy in bed and make sure his room is stocked with anything the nurse may need overnight.

11:00pm — Night nurse arrives and after giving report Karin and I get a break. We watch TV for a little while and are usually in bed by midnight to try to get a nice long night’s sleep.  It doesn’t happen often though since our own sleep schedules are hardwired into the other schedule. The real schedule. Because for the other 5 nights a week the whole thing looks a little something more like this….

No Nurse Nights (Wednesday through Sunday)

8:30pm — I get home from work.  We eat dinner and then playtime with Liam.

10:00pm — Liam gets a couple of medicines at 10:00pm along with the start of his ten-hour overnight feed so we get those set-up and change Liam into his pajamas at the same time. After that we have a little more time alone as a family to relax a bit.

11:30pm —  Bedtime for Liam and his Mom.  We get Liam all comfy in bed together and then Karin heads upstairs to go to bed alone.  I stay downstairs and sit with Liam for a few hours.  He gets another med at 12:00am, which I give to him and once/if he gets into a really deep sleep I take the baby monitor with me and retire to the couch in the living room.  I watch TV and goof off on the internet while listening to the slow peaceful breaths of Liam and his ventilator down the hall. If he is in a deep enough sleep I might drift off a bit of sleep myself on the couch but it is rarely restful.

4:15am — Karin and I switch places.  Karin wakes around 4am and comes downstairs. I give her report and we check the board to communicate if any Tylenol or motrin was given on my “shift” and I head upstairs to catch as close to 40 winks as I can manage. Karin takes her own “shift” on the couch listening for seizures or vent issues.

8:00am — Liam’s overnight feed ends and another med is given.  Karin takes care of these and with any luck Liam gets back to sleep pretty quickly afterwards.

10:00am — Liam is woken up and the Olson family starts the day.

Rinse and repeat 5 nights a week for about 3 years.

Parenting is the never-ending discovery of newer, stronger and more debilitating levels of exhaustion. Every time I think that I couldn’t be any more tired BAM! a new level of fatigue rears its ugly head and along with it, forgetfulness, distraction and moodiness.  Oh it’s awesome.

But you react, and you get used to it, and you just keep plugging along.

You’ll see by the tag on the left that I’m posting this on a Tuesday night. [Update: I didn’t post until after midnight so it says Wednesday, but I wrote this on a Tuesday, I swear.] That means there’s a nurse here right now.

What the hell am I doing still typing this for all of you then?

I have no idea.  I’m going to bed.

Talk to you soon.

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.

Miller-What?

Diagnosis.

A dense, heavy word that seemingly hangs in the air with the presence of a battleship on an ocean. A powerful word capable of changing lives. Filled with contradictions, it is both a label and an outcome, a cause and an effect, a reason and an excuse.

Every family that has one or is seeking one will have a different opinion about the word.

It’s both a blessing and a curse.

A phone conversation with an old friend from the past, some close family friends conquering their own child’s latest hospital stay, milestones marked by Liam that didn’t seem possible even weeks ago, I’ve had the word diagnosis bouncing around my head for weeks now. So when my twitter feed this weekend had not one (@tricky_customer) but two(@havley_pelhem16) links to well written blog posts about the word diagnosis I decided I might as well jump in join the fun myself and get at least a little of all that bouncing going on in my head written down.

Liam’s diagnosis saved his life. There’s no doubt in my mind. Not the diagnosis itself but rather the fact that we were able to find it so early on in his life. I’ve been told that in many cases involving any lissencephaly diagnosis (Of which Liam’s diagnosis — Miller Dieker Syndrome is one of many) is found later in a child’s life when developmental milestones are delayed or missed. A family that we know of had no idea that there was anything at all wrong with their child’s brain until the kid was 18 months old. It was only the fact that Liam was born weighing less than a thousand grams that triggered a routine MRI which led us to Liam’s diagnosis at the ripe old age of three weeks old.

From blood gases to vent settings, heart rates to weights neonatology is mostly a numbers game. Armed with Liam’s diagnosis as added information we were able to watch closely for complications that are commonly found with Miller Dieker and more importantly be ready to treat them. Had Liam been born only a few weeks later (which still would have been before Karin’s third trimester) that MRI would not have taken place and many of Liam’s symptoms may have been more puzzling. Puzzling enough that we would not have known what was happening in time to help fix it. We expected the GI issues, we expected the respiratory problems, and as much as we hoped to never see them, we expected the seizures.

We’ve spent every hospital stay since pleading with residents and interns to forget what they read in the books about Miller Dieker Syndrome the rare diagnosis that they are so excited to encounter and treat and take a good hard look at the boy in front of them. Liam. Look at his story. At his details. At what is going on with him right now. Liam is not his Miller Dieker Syndrome. He is not his diagnosis, and his diagnosis is not him. The diagnosis that helped at first has also been a hinderance since like any diagnosis the varying degrees of severity  and combination of symptoms make each case unique. Young doctors like to treat the textbook. Liam has spent his whole life proving that textbook wrong. He is NOT his diagnosis.

I can only imagine the stress, heartache and worry that I would have felt had i expected Liam to crawl, to roll over, to talk but it never happened. There’s a comfort in knowing that nothing is guaranteed. Liam has never missed or been late for a developmental milestone. Ever. Because knowing what we knew when he was only three weeks old allowed us to free ourselves from any expectations or schedules for him to meet. Like a suit of armor Liam’s diagnosis shielded us from disappointment. Anything and everything that Liam has done or will ever do is cause for celebration and joy. With no schedule to conform to there’s nothing to be late for, only events to be grateful for. A diagnosis gave us that.

But sometimes I wish it were different. And not that I wish Liam didn’t have a diagnosis, Liam is who Liam is and I love him regardless but I’d be lying if I didn’t say there wasn’t such a thing as diagnosis envy. It doesn’t keep me up nights or anything but I do think about it on days like today — Autism Awareness Day. As many questions, myths, and misconceptions that still may persist when it comes to words like down syndrome, autism, epilepsy, or cerebral palsy they are still fairly recognizable to most. Sometimes I think it would be nice to tell someone that Liam has Miller Deiker Syndrome without having to spend the next ten minutes explaining what that means. Sometimes I wonder what it would be like to have one of those popular diagnosis, but we’ll just have to start our own Miller Deiker Syndrome Day.

More often than not I won’t write a blog post about a topic until I’ve got that topic all figured out in my head. Although I read respect, and admire many blogs written by people who are honest and open enough to put their whole thought process out there and really “work things out” on the page,  that’s not my style. Tonight I feel like the more I write the more questions I come up with.

I still don’t have this one all figured out. I’ve got a lot more thinking to do here. Ask me again in a month about this one.  The answer then may be completely different.

Even though Liam’s diagnosis won’t ever change, I think my attitude towards it always will.

Membership Has its Privileges

Occasionally I’ll read a tweet or overhear a “typical” parent discussing a legitimate and “normal” worry or complaint. ( I hate both terms typical and normal since we’re all just parents and what in any of our lives is actually “normal” or “typical” but you catch my meaning more efficiently by using them so that’s what I’ll go with here) A worry or complaint that Karin and I have never had to worry about with Liam. It always gets me thinking of all the bright sides, all the silver linings in the clouds of special needs parenting.

At first I thought about how we never have to wait when we end up in the E.R. (it’s amazing how bringing in a kid hooked up to a ventilator can bump you to the front of the line) or the fact that the pulmonologist, neurologist, and pediatrician will write us a script based solely on a phone call since they know us so well we don’t have to come in to be seen first. But while both of those could in a weird way be considered benefits, what other parent would ever be jealous of things like that? Having the top pediatric surgeons in the state know you on sight isn’t all it’s cracked up to be.

No, instead I’m talking about benefits that will help me feel better when I hear other parents talking about “date nights” knowing that they probably don’t have to involve nursing agencies and insurance companies to get a babysitter. Benefits to think about and comfort my own jealousy over parents who get to sleep in the same bed together more than one or two nights a week.

So I  thought about all the good parts. All of the concerns I’ve heard mentioned that my family doesn’t have to give a second thought to (yet.)

The privileges. These are not worries that I am making fun of at all. Parents absolutely should be worrying about these things. Lucky for us, Karin and I just don’t need to.

1. Baby-proofing — This is the one I heard mention of today that got me thinking about this post in the first place. Liam was born so early we hadn’t even thought of baby-proofing our house yet. By the time we got home from the NICU we had a pretty good idea that we wouldn’t need to. Liam can’t crawl, he can’t grab, hell thanks to the trach he can’t even swallow and so the electrical outlets in my walls are free of little plastic covers to lose or be stepped on. My kitchen and bathroom cabinets, even the ones on the floor, open with a quick flick of the wrist. I can even keep the scotch right out on the counter. (just kidding, I keep that on top of the fridge where Karin can’t reach it. That whiskey is mine!)

2. Story Time. —  Look I love children’s books. The more of them I read the more I find new ones that are so clever or funny and who doesn’t love revisiting the classics of our own childhood’s but I’m willing to bet that I made my parents read Grover’s “Monster at the End of This Book” a million times.  Over, and over, and over again, the poor things. During the daytime and at school Liam hears his fair share of kids books and stories but at bedtime when I get to read him to sleep I get to read my own stuff. It’s all about tone of voice anyway so instead of more Seuss and Silverstein, Liam and I read aloud Vonnegut, and Gaiman, Cherie Priest, and Adam Christopher, Terry Pratchett and Harlan Ellison. And everything else that I find at the library. Liam is very well read for a three-year old.

3. Potty Mouth — I swear a lot. I always have and I always find it funny when we all censor ourselves and politely substitute benign words or start spelling things around our kids. My parents swore around me growing up but I definitely knew there were a bunch of words out there that I wasn’t allowed to say until I grew up. Let’s face it if or when Liam utters his first word if it happens to be shit or another of the four letter variety (it’s not an unheard of occurrence in my family) I would laugh and cry and celebrate that wonderful curse for the rest of my days.

4. The Back of the Milk Carton — I don’t mean to be insensitive about something so serious but kidnapping or abduction? It’s not really a concern of ours. Hard to steal a child securely attached to a 40 pound ventilator and 50 pound wheelchair.

5. So You Want to Go See a Show? — Sure Karin and I don’t get out for a date night very often but I’ll tell you where else we don’t end up. “Disney on Ice”, “Dora the Explorer Live!”, “The Spongebob Squarepants Live Screech-a-Long” or “Raffi’s Two Hour Children Screaming Extravaganza”. I’m sure that every kid in every one of those audiences is having a wonderful time waving their light-up novelty toys and yelling their adorable little heads off. Not so sure about the adults in those same rooms though. Luckily Liam’s not a very big fan of crowds or loud noises. So when he gets just a little older and bigger I’m sure we’ll take him to one of these shows just to say we have but I’ll bet you dollars to doughnuts that he shuts down and sleeps through the entire performance.

6. Open Up the Hanger Here Comes the Airplane — The tricks other parents must have to resort to in order to get a three-year old to choke down enough carrots and peas without spitting it all over themselves or their high chairs is beyond me. Instead I put exactly the amount of formula for the calories that Liam needs in a bag and set the rate on his feeding pump. Boom! consistent nutrition and growth at the press of a button. Can’t beat that with a rubber ended spoon of Gerber Beef and Gravy.

Well there’s a quick list of six and while there may be more I think I’ll end it there before I have all of my “typical” parent readers running out looking for their very own special needs child.  I don’t want to start having to worry about number 4 on the list anytime soon.