dadblog

Playing Hookie

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We didn’t even tell him. Got him dressed and packed into his wheelchair. We even left the house at the same time that he does every day for school, but Liam didn’t go to school yesterday. I had the day off of work, and the weather was right.

Yesterday, we all went to the zoo.

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We’ve of course been to the zoo before but we were excited to go during school hours in the hopes that the zoo would be fairly quiet. It was, but not nearly as empty as we expected. Still, we were able to enjoy every exhibit at our own pace and didn’t have to battle through other groups to get Liam right up close, with only a minimal amount of the uncomfortable stares (sadly enough, they’re usually from the other parents more than the children).

There was one animal though, that I was more excited to show Liam up close and personal for the first time than any other, and I knew that no matter the feeding schedule or the weather, this animal would be available for Liam to meet.

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If you grew up in Rhode Island, chances are there is a picture somewhere in your parent’s old photo albums of you proudly astride the dog in front of the gift shop at the Roger Williams Park Zoo. I know for a fact that there are pictures of me on this thing along with my siblings and cousins. When we decided on letting Liam play hookie to head to the zoo getting to take this photograph was the first thing on my mind.

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Having the time to unhook Liam’s ventilator, feeding pump and oximeter, safely lift him onto the dog’s back and then have the picture taken? Well, that right there was more a more meaningful experience in Liam’s life than one more afternoon in a classroom could possibly bring, and I don’t care what his report card says about it.

The First Post Back

So let’s just recap a few things first here,

I got to be on the radio, and then on TV.

I got to make a movie.

I got to walk around on the field at Fenway Park before meeting Terry Francona!

I’ve made friendships, real friendships with people from California, Ohio, North Carolina, California. As far as The United Kingdom and as close as Massachusetts to name only a few and, just as nice as making new friends is, as recently as last week I reconnected with a high school friend I haven’t talked to in 17 years.

Even in just the last month I have received emails from three parents of kids of all types of special needs, thanking me for sharing Liam’s story because it has helped them with their own. (I am absolutely humbled and touched by every single one of you.  Thank you all so much.)

And none of it, None of those things would have ever happened had I not grabbed onto Liam’s coattails and exploited his strength and character by starting this blog to tell our story to the world.

So why then have I only posted twice in the entire month of January? I’m not being rhetorical. I’m genuinely asking, please, if any of you have any idea what happened to my blogging or have seen it anywhere, please send it home or at least let me know. All those nice things happening was great and I’d like it to continue.

I suppose if I had accomplished some sort of monumental achievement or goal during the month I could point to it and say “Hey, get off my back I did this great and awesome thing.” But guess what? Yep. Good guess, I got nothing. Nothing but some rest, and some reading done, and a sense of guilt and dread whenever I get online and realize that yes all of those wonderful friends up there in that list have blog posts up that I haven’t read yet or commented on. More than a few.

I’ve been writing. Er, well I’ve been trying to write, and the last time I sat down to write a blog post the piece decided to digress into something different. Something longer. Something not quite right for a blog. Other ideas sit as drafts half-baked and unfinished, the longer I went without posting the more pressure I put on myself that the first post back had to be The First Post Back. And on and on it goes until I realize the damn groundhog came out and a whole month has slipped by.

So here it is. The First Post Back. now that it’s out-of-the-way I can get back to writing about what’s really important again. Like my kid pooping in his class and how Karin and I never get any sleep.

Thanks for sticking around.

The baby monitor broadcasting ventilator breaths behind me, I’m sitting on my couch trying to figure out what to post about. I didn’t intend for a whole week to pass between posts, but then, I never do. Doesn’t stop it from happening. Liam is asleep in his room and I am down the hall in the living room counting the seconds between each breath like a conductor counting beats to ensure that he’s sleeping and not seizing. Liam’s seizures seldom effect his heart rate or oxygen saturations enough to set off the alarms on his oximeter so counting breaths really is the best way to know when you don’t have eyes on the boy.

The seizures have been consistent lately. Consistently strong, and intense, and up until the last few days, consistently needing medicinal intervention to break at least once a day. Two or three a day, in truth is a pretty manageable number. There have been stretches when it was double digits every day so we’ll take 2 or three if we have to, but the boy is getting stronger now. After weaning the vigabitrin at the end of the summer Liam has had a significant increase in muscle tone only making the tension in his arms and legs during seizures that much more painful for him. Wincing in pain between twitches and tensions where before there was none.

I’m certainly not complaining about the muscle tone. It is that muscle tone that helps him in therapy at school, that helps him to roll over almost on his own now, that helps him make it more and more frustratingly difficult to get him in and out of a onezie. The reverse of an illusionist escaping a straightjacket — Liam seems determined to have his shoulder dislocated by having clothing put on.

School is going well. So well in fact that we will be adding another day this week in our effort to get him going all week-long by the end of the year. Adjusting his sleep schedule to be ready for school however is not going well at all. Liam flat-out refuses to conform to our schedule by either staying up until the wee hours of morning or by falling asleep right away only to wake up a few hours later ready to play until when he should be getting ready. We are holding to the routine in the hopes that he will bend to our will but believe me his stubbornness is unmatched (even by me).

I can hear the ventilator as the baby monitor whispers a little more than 2 Mississippi’s between breaths in a steady unbroken rhythm  of what I’m guessing is about 18 breaths per minute. Slow enough that I know it’s a deep sleep. Deep enough that I can let my guard down just a bit. So I will. Good night all.

I’ll talk to you soon.

If Liam can fight as hard as he does . . .

Worrying about the daily why’s and what-for’s of an intensive care unit are difficult enough without rehashing them afterwards in a blog post, but not posting anything at all isn’t fair to those of you who care so much for Liam and simply want to know how he is doing. So before I get to the rest of this post I’ll sum up…

Liam has had a bunch of boring days. Given the severity of his acute illness at the start of this admission boring is definitely a good thing. He is awake and alert for longer periods, he is back on his home ventilator, his labs and other vitals are unremarkable (my favorite hospital word). At this point we are still far from getting out of here but much of that time is for his body to heal. The septic shock wreaked havoc on all of his organs but his G.I. is so sensitive and has such a history that it will take some finesse to get his gut started again. I’ll do a big picture recap after the admission is over if people are interested.

Karin and I are tired but coping. As Liam heals being in the hospital gets more and more frustrating. In the beginning there is no room for worrying about when/if you will be discharged or how long it will take to get there. Acute illnesses call for acute focus on the here and now. One day, one hour, and sometimes even one single breath at a time. Like a carrot on a string, once the light of home is visible at the end of the tunnel it becomes harder and harder to forget, ignore, or deny the fact that we are not in our house as a family.

At the end of the day though, I think that Karin sums it up best when she says that if Liam can fight as hard as he does to get better, then we can too.

And as usual she’s absolutely right. Considering what Liam has gone through in the past three weeks I am in no place to complain about being tired or getting sick of hospital food.

We will get through this.

We always do.

That survival though is wholly dependant on the routine. The hospital schedule.

A few months ago people seemed to enjoy my post about our family sleep schedule and how we manage ’round-the-clock’ care. I can only assume then that there is some interest in what works for us to bring order and coverage to hour after hour of the constant stresses in the PICU. Overall, Liam has spent a little over a year of his three and a half in the hospital. (That year is actually less than anyone could have predicted when Liam was trached and vented. We have been very lucky.) So this is what works for us, but we have a specific set of circumstances that make this possible so your mileage may vary. I work in the building next door to this hospital and have supportive co-workers who understand if I need to run next door throughout the day. Also, my work schedule is not 9-5 which also makes things like attending Dr’s rounds every morning possible. And of course, we do manage to scrape by without Karin working outside the home which save for the fact that Liam is our only child, is the most important reason of all that we can make this work.

Without those specific circumstances, being at Liam’s bedside at all times just would not be possible and I can’t even imagine the difficulty most parents have spending large chunks of time away from their child in an intensive care unit while they head to work or home to their other children. Don’t get me wrong, the overall staff in the unit are more than qualified to keep every child safe and fairly comfortable when it is not possible for a parent to stay day or night but it is very important to Karin and I that if at all possible, anytime Liam wakes up in a hospital bed either his mommy or daddy (or both) are there to comfort him. That’s why we developed the hospital schedule.

When Liam is in the hospital the whole world shrinks down to revolve (for us anyway) around his room. Months, weeks, and ultimately even what day of the week it is become irrelevant. Once Liam is admitted Karin and I revert to a kind of 48 hour “day” rotation, alternating who sleeps in the hospital with Liam and who gets a few hours of sleep in our own bed.

We’ll start in the morning…
8:30 – 9am — This seems as good a place as any to start. This is when whoever spent the night in our house will arrive with coffee. By this time whoever spent the night with Liam has most definitely been awake since at least the nursing shift change at 7am. Liam’s labs have been drawn and a big bunch of his medicines given at 8a. The residents, and his outside pediatrician have already come by to asses any changes and Liam drifts back to sleep.

9am – 11am — Dr.’s Rounds. I love rounds. Even at Liam’s sickest I love being heavily involved in the resident’s and attending physician’s discussions about diagnosis, treatment, plan for the day. I also enjoy questioning everything that gets brought up. Questioning and questioning until I am sure that I have a strong understanding not only of what the team ultimately decides for a plan but additionally why that was the decision. If Karin and I are lucky rounds ends early enough that we can run down to the cafeteria for some breakfast. (breakfast in any hospital cafeteria is going to be the best meal they offer. Just trust me on this one. You can even skip lunch if you get a big enough breakfast.) Then there is just enough time for whoever spent the night in the hospital (last night it was Karin) to run home for a quick shower to return to the hospital in enough time for me to head out to work.

11am – 3pm — Sometime between 11 and 12 I mosey my way over to work and try to concentrate on something other than Liam with varying degrees of success. While I am gone Karin coordinates the information and communication of the PICU residents, attending, surgical team, neurological team, G.I. team, Liam’s home pediatrician, nurses, respiratory therapists, radiologists, case managers, child life advocates, and environmental services staff. Sure, I guess not every single one of those come through the door every single day but pretty damn close and Karin keeps it all together. I said in my last post that the hospital can be a game of telephone which makes the consistency of Karin handling the communication between departments so important. I don’t know how she does it. While I’m running back and forth between work and here there are times when Karin will be in this tiny little room for stretches as long as 26 hours. I would go crazy. Truly, totally, batshit crazy.
3pm – 8pm — Things tend to calm down a bit later in the afternoon. After the lunch rush ends for me I take a break from work and run back to Liam’s room for a visit and an update. Karin and I (along with whichever dr’s need to be involved) discuss any test results or changes to the plan. After a nice little break with Liam and his mom I head back to work. Generally consults aren’t going to happen after 5pm and so this is when Karin and Liam will snuggle as much as they are able. Yesterday was the first time in nearly 2 weeks that Karin was able to hold Liam. Before that it has been lots and lots of hand holding and kisses.


8pm – 10pm — My shift at work ends at 8pm and so depending on what we served in my cafe I usually bring dinner here to this hospital. If not then we’ll run downstairs to this hospital’s cafe and grab a quick bite before returning to Liam’s room to watch TV and chat while I get my snuggles with the boy in. We chat with the overnight nurse while they give his 8pm and 10pm meds. (because of Liam’s limited IV access and his need for IV nutrition while we wait for his gut to heal it can take a long time to get all of his meds infused. By the time his 8pm meds are in, it’s time to start giving his 10pm’s. All told, nighttime medicine can be about a three and a half hour process.)

10pm – 12am — Barring anything crazy happening – 10:00pm is when whoever is going to the house leaves. For a few hours whoever stays in the hospital will read by Liam’s bedside until he falls asleep before converting the uncomfortable easy chair into an uncomfortable cot. When we are confident that Liam will stay asleep (or at least stay comfy and calm if he wakes) then I’ll shut off all the lights in the room and try to get some sleep. The nurses generally try to be quiet enough that some sleeping can be done but it really depends on Liam and what he decides to do overnight.

6am – 8:30am — The early morning rush consists of the daily blood draw for labs so results can be ready for rounds, the resident assessment for rounds. Safety checks of med lines for the nursing shift change and more often than not a visit from the rounding partner from Liam’s pediatric practice. Between 7:30 and 8:30am the complimentary breakfast cart makes its way through the unit and a small cup of coffee makes do until whoever went to the house the night before can return with more ammunition.

Lather.

Rinse.

Repeat, alternating which one of us stays here in the hospital with Liam.


I should mention that when the stars align in just the right way — perfect nurse who we trust, perfect resident on-call who has experience treating Liam, and of course how Liam himself is feeling, — Karin and I very occasionally leave the hospital together. More often than not if this does happen it is only for a few hours. Just long enough to get home and throw a load of laundry in the washer or maybe for a quick dinner at a restaurant! Even more rare, as in twice in the last three years rare, if all those things happen we may even both go home overnight just once to give ourselves a break and remind ourselves that in addition to being Liam’s parents we’re still also a couple. I’ll be honest and tell you that I am hoping for one of those situations soon. It gets frustrating when the only time you see your spouse is in the least private place on the planet.

And that’s what works for us. It worked for us during his 109 day stay here in 2009, his 40 day stay here last year, and the half a dozen or so stays of 5 to 15 days in between. It will work for this stay no matter how long it goes on.
It has to.

Because If Liam can fight as hard as he does to get better for us, sacrificing a bit of sleep together is the least we could do for him.

Good Day / Bad Day

In the span of 12 hours yesterday Liam endured an EKG, an EEG, an unsuccessful attempt at placing a picc-line (a fancy IV in which the catheter extends all the way to just outside the heart), a two hour ultrasound with the rudest medical professional I have ever met, the insertion of a central line into his subclavian vein  (another fancy IV line directly into his chest) by the surgical team and a CT scan of his brain. So I guess your day wasn’t as crappy as you thought was it?

For my part in this mess I took on the role of pacing, sweating, swearing at our medical team, huffing and puffing in pure rage and coming dangerously close to being escorted from the building by security for almost punching the radiologist I mentioned above. That was my job yesterday and I did it to the best of my ability and if a few of the residents remain intimidated by me then so be it.

Karin on the other hand was FREAKING AMAZING! She was calm and collected. She was able to prioritize the specialists and all of their tests like an all-star air traffic controller. While I raged she remedied. While I screamed and swore, she settled and soothed. While I got stressed and worried, she got even more confident and calming. Her grace yesterday is something that I will not soon forget.

And that is how we make this work. On tuesday Karin was the worried one, and even though it wasn’t as crazy a day as yesterday it was a day of worry, what with Liam in the throes of septic shock. That stress and worry which manifests with anger in me, is instead sadness in Karin. Some days I get to be the strong one, and others, not so much. The wonderful part is that they very nearly never overlap.

By 9pm things for Liam had finally calmed down. With the subclavian line we had our access both for putting meds in and drawing blood for labs out. We were made  aware of the large blood clot in his leg (clogging up his original central line) and immediately beginning treatment for it. We had a new seizure med introduced to compensate for the fact that 2 of his 4 meds have no IV equivilant, and we had a full 12 hours of blood pressures remaining within the safe and allowable limits we had set. By the time I left for my turn at home Liam was sleeping comfortably and Karin was setting up the bed in Liam’s room to get some rest herself. We may have turned a corner yesterday. No thanks to me.

I was too angry to even see the corner coming, and I’ll be damned if I was going to turn this thing around and ask for directions.

It’s a good thing Karin was.

Until my knuckles bleed.

The text messages came to me at work just as the lunch rush was winding down.

He is vomiting badly — 1:49pm

and then

Need you — 1:53pm

Seven minutes and a run through the underground tunnel connecting the hospital I work in and the hospital Liam is currently admitted later I entered Liam’s room to find Karin and a respiratory therapist put the finishing touches on an emergency trach change with Liam stripped to his diaper and looking a little grayer than his normal pasty pale. (The nurse, who was in the room when it happened, apparently bailed out and left soon after the vomit, showing her inexperience with trachs and vents. This is why Liam should have been admitted to the PICU. For those first important minutes when the risk of aspiration was greatest Karin’s were the only capable set of hands in the room. But anyway.)

Vomit. I suppose that most parents become accustomed to vomit by the time their kids are three. Not us. Liam just isn’t a puker. Today marked the third time the Liam has ever vomited.

Third.

The first two were the result of major and I mean major intestinal blockage. Both occurred during long, long hospital stays. So, when a text message says vomit I go a running.

Thankfully this one was not as serious. No, today’s Technicolor yawn was brought to us by a poorly timed bolus of water that should have been pumped in slowly with his feeding pump but instead was pushed in with a large syringe in a matter of minutes (I don’t mean to harp on her but this was also the result of the same nurse not knowing enough about Liam’s medical needs.) and a lunchtime feed being pushed too quickly afterward. The acidosis of the transition to the ketogenic diet certainly didn’t help matters and the diarrhea he experienced from a med given to help an elevated potassium reading the night before left us with a very dehydrated, grumpy, and did I mention gray little boy.

I’ll admit to being nervous and anxious and then an overwhelming sense of guilt that what Liam was going through was the result of our decision to begin this treatment. If it ain’t broke don’t fix it we always say but Karin and I took a healthy, if somewhat twitchy, little boy into a den of germs and put him through this pain and discomfort. Had we really made the right decision?

It was only a few minutes later when Dr. G arrived. To try to explain the respect, admiration and trust the Karin and I have for Liam’s neurologist who first saw Liam when he was only three weeks old would make this post unbearably long so just know that he is a very calming presence at a time when we needed one. He was followed by three residents who stayed silent and observed while Dr. G, Karin and I discussed symptoms, tests and then the options for nearly every scenario of test result for a little while. Sensing the end of the consult as Dr. G’s beeper went off I asked a question I normally never do since I prefer numbers and hard data over impressions or feelings.

“so, uh…you aren’t . . .concerned about this?” I was pretty sure I knew the answer to the question before I even asked it since Karin and I have done our homework on the diet and this transition and I always knew something like this could happen. At that moment, with Liam lethargic and miserable lying nearly naked in front of me, I needed to hear him say it.

“No this is normal. Episodes such as this are what we expect to see as we make the transition into ketosis. This is the reason we start this diet with a hospital admission.” The words came so easily to him that they instantly neutralized the tension in the air.

Photo by Karin.

The neurology nutritionist working with us entered the room to hear what our new plan was and with the release of all of my nervous, worried energy I called out to her “Hey, this is all your fault! I can’t believe you told us how smoothly this was going just this morning in front of Liam!” I pointed over to Dr. G. “Ask him. Liam hears something like that he’s going to throw you another wrinkle. He doesn’t ever let us off that easy!” The whole room laughed out loud. More than one of us got up to get closer to anything wooden to give it a knock because any mention of things going well, or worse the unspoken H-word*, is only tempting fate. Karin resumed hugging Liam  and the team disbanded to put our newly formed plan to action.

I waited a little while to witness the blood draw and get a few of the results we were looking for before heading back through the tunnel to work confident in the knowledge that all of the people who needed to hear the plan did so (including the capable nurse for the next shift who has been assigned to Liam 3 of the 5 evenings of this admission). Hospitals on their best days are a scary and stressful game of “telephone” where information and orders can change ever so slightly between departments and shifts. I love it when we can have everyone together at once.

After my shift had ended 5 hours later I returned to Liam’s room to find a pink, awake little boy snuggling comfortably in the large hospital bed with his mom. A small iv drip that had already been stopped and the tolerance of two feeds in my absence and you’d find it hard to believe it was the same boy who earlier had struggled so just to open his eyes. Dr. G who is the on call neurologist this weekend just happened to stop by only a little while later. We discussed the plan moving forward and reveled in the reveal of acceptable test result numbers in all of the categories that we were looking for. This time we didn’t have to ask for his impression, Dr. G decided to give it anyway.

“I’m really encouraged with these results. He seems to be transitioning very well. Like I said we do expect little events like this one. How have the seizures been?” He asked.

The kid caught up on some serious sleep this week. Alas, his parents, did not.

“Well It’s been about 36 hours now since we’ve seen anything!**.” We were so excited with the news Karin and I responded in unison. It has been a long time since we could say that.

“That’s wonderful.” Dr. G said with a great big smile “Now someone better knock on some wood!”

And all three of us did. Now you should too.

* the unspoken H word for the uninitiated begins with an h and rhymes with gnome and shall not be uttered until all three of us are in the van.

** We are in no way expecting this treatment to eliminate all seizures and I am positive that they will occur but a stretch that long this early is an encouraging sign that as he continues on the diet we may see a reduction in their quantity and severity. We may even be able to ween from some of the dangerous seizure medicines he is currently taking. We’ll see. Right now I am hopefully optimistic.

Elective not Emergency

The loud thunk of an ambulance door as it closes sounds equally ominous from either side. Inside on the bench seat, struggling to hold Liam’s hand and stay balanced as the EMT keeps checking vitals, or in the car, speeding behind trying to make it to the hospital as quickly as the rescue unit does. Unfortunately, Karin and I have been in both postition a few times each. Right now though, with Liam due to be admitted to the hospital in less than 12 hours, I almost envy those adreneline fueled roles.

Emergencies don’t give you time enough to stress. To worry. To obsess.

Tomorrow morning, Liam is being admitted to the hospital to start the Ketogenic Diet (go here to learn more about the diet) which hopefully will help control his seizures. He will be admitted for 3-5 days but I’m banking on 5. Given our history with hospital stays, hell I’m crossing all of my fingers and toes and HOPING for 5. Let’s just say that we know how quickly things can change in the big house and having two weeks to plan for this stay also means we’ve had two weeks to imagine every possible worst case scenario (and some of the impossible ones too.)

The possibility that Liam responds to the diet and we see a reduction in seizure activity and maybe even reduce the amount of medications he needs to control them make this hospital stay more than worth the inherent risks involved.

Anyway, as strange as it may sound we’d definitely prefer to stay in the PICU as we have spent so much time there that at this point it feels downright comfortable but I suspect that even though the nurses on the floors are unable to change a trach if the need arises, we’ll be up in gen-pop hoping we don’t get shivved instead of downstairs in solitary.

Don’t worry, this is actually a very exciting time for us all and I am almost giddy at the prospect of this treatment working. I’m trying very hard not to let my hopes get too high. It’s just that the anticipation of returning the family routine into “hospital mode” can be a tough pill to swallow. We’ve had hospital stays that were expected to be days turn into weeks and yes even months before so choosing to spend a week in the joint can seem a little crazy.

As you know I’m not a day-to-day-update kind of blogger. When I find a topic or an event and can think of a way to twist it into an essay then up it goes, but the general details of our lives go mostly unmentioned until I can work them into something bigger. Hospital stays though, change all that. The overnights next to Liam’s hospital bed or the sleepless nights alone in a much-too-quiet-house, both tend to inccrease the blogging drive and increase potential material so,.. I guess there’s that.

Like I said, I generally don’t like to post about a thing until I delude myself into thinking I have it all figured out. It’s why I can’t figure out how to end this disjointed and awkward post. I really just don’t know enough about what will happen in the next week to explain to you how I feel about it. Right now, I have nothing figured out. Just a whole lot of worry and a desire to fast forward the next 5 days away so my family and I can all be home again.

By then, probably, I’ll have it all figured out again.

Waiting for Class to End.

Every morning at about 11:15am I glance at the clock and shout “oh shit, I’m going to be late for work!”, kiss Karin and Liam goodbye before hurrying out to the car leaving them to their daily routine. A daily routine that since I don’t witness I just assume includes lot’s and lot’s of playtime, naps and fun for them both while I slave away at the old salt mine. There must be helper elves or magical fairies getting all the cooking, cleaning, laundry, medical calls, Liam care and the other house stuff done, I don’t really know how that all works. The point is I’m not there, and so I know very well what it feels like to miss Liam. I do it every day.

Aside from a little joke in my last blog post I was very supportive and understanding of Karin’s feelings of loss and worry when she couldn’t follow her baby into his classroom at school last week. His first day in the full classroom setting with other children. I was understanding and supportive yet all the while thinking that I was immune to such feelings. After all, I left him behind to head out to work for nine hours every day I knew what missing the boy felt like, but only when I was the one doing the leaving.

PT/OT were fun for Liam this week. It was such a beautiful spring day that it was a no brainer that he would be spending it outside on the playground instead of inside on a padded mat. Their swing is different from ours but is supportive enough that he was able to swing a little bit, but it was much too soothing. He almost fell asleep. No, sleeping is not ideal when we’re trying to get him to work his core and head control so off to the big boy slide we went to really wake him up.

Scared the hell out of him, but as I may have mentioned before in other blogs fear shows an awareness to your surroundings and since he wasn’t in any real danger, a little scare can be a good thing. Got his heart rate up that’s for sure. By the time he reached the bottom though he had look of pleasure on his face and we sent him back down again three more times.

Can I just take second here to direct your attention to that picture again. See anything missing? Pretty cool huh?

Once back inside Liam participated in his playgroup which is always wonderful since Karin and I are allowed to help out with play group. Seeing other children take an interest in Liam warms my heart. We threw and rolled and kicked different colored balls all around the room for about a half an hour until the proverbial bell rang and it was time for Liam to head off to class.

I followed Liam, his speech therapist, and his nurse into the hall and it suddenly dawned on me that although doing it in a wheelchair and with the help of his nurse, Liam was essentially walking away from me to a place where I wasn’t allowed to follow. Instead of me saying goodbye on my way out to work, he was saying goodbye to me. I didn’t like that at all. I didn’t even know what to say. Sensing that I was about to say something, Liam’s nurse and therapist waited and looked at me, while keeping one hand on his stroller struggling to let it and him go.

“uh, . . . Uh, . . You be a good boy.” I found some words to fill the awkward silence and kissed the top of Liam’s head with Karin behind me probably grinning from ear to ear knowing that the heart ache and fear that I had given her such a hard time about last week had just washed over me. We walked to the couches at the front office while Liam and his crew headed down the hall in the other direction. Liam is in class for an hour (making all of this seem even more silly) so we waited by the front office with our kindles instead of leaving and picking him up.

“It’s hard watching him leave you like that isn’t it?” Karin asked me with a grin.

“It really is!” I gave her a hug and we sat together and read glancing down to the end of the hall toward the classroom between almost every word. Waiting for our baby boy to come back from his big boy classroom.