Saturday, July 14, 2012

This blog post is brought to you today by the letter P!

*I know, I know.....that whole "blogging more regularly" thing isn't going so well.  I definitely need to post a summer catch up blog, just so that I can remember everything we've been doing!  In the meantime....read on!*

Yesterday morning, Adam and I were watching Team Umizoomi.  (a moderately mind numbing, but not entirely eye twitch inducing, kids show on Nick Jr that actually does a pretty good job teaching early math concepts)  The "umi friends" were on a pirate ship, so naturally Adam was riveted.  As one may need to do when on a pirate ship, they had to feed the crocodiles while sailing.....and these crocodiles only ate things that started with P.  (I don't know why.  Some of them were also blue.  Suspension of disbelief.....whatever.)  Adam did a really good job picking out all of the P food, and then started listing other P words.  "puh....puh.....pirate!  puh.....puh.....party!"  I began a list of all the P words we could both think of, and just like that yesterday became "Letter P Day!" 

To start off the festivities, we decided to stay in our pajamas all day.  Even when we went to the grocery store.  (Fortunately I slept in yoga pants and a tank top, so I didn't look entirely like I belonged on the People of Walmart site.  Just mostly.  And yes, of course, we ran into people we knew. Never fails.) Here's a recap of the fun!


                                                                 
Pjs to the store?!  Oh yeah!



We read Pickle Things!



Snack time! (potato chips, peanut butter pretzels, popcorn, peaches, and pears)



We watched Peter Pan!  (feel the classic disney vhs power!!)



Puh....puh....puzzle!



Playdoh time is serious business!



We painted on paper plates too!



Pretty pictures!



We finished our list with 33 P words!  Not too shabby!





Of course we also had pizza for dinner, and popsicles for dessert.  It was such a fun day, and by bedtime Adam was actually shouting out P words he was hearing people say in conversations or on tv. His last question of the day was "What yettew can we has a day of next?" so I guess this will become a tradition.  Once a week we'll have a letter day.....I'll let everyone know how it goes.  Of course I may be in trouble when we get to a letter that doesn't correspond with a bunch of stuff I just happen to have around the house!

Happy weekend everybody!
~Jess  :-)






Monday, June 4, 2012

A picture is worth......



June 3, 2008

June 3, 2009

June 3, 2010


June 3, 2011


June 3, 2012



   















































Monday, May 14, 2012

AWOL!

Yikes, it's been a long time since I posted a blog!  I've noticed that blogging about things has the funny little side effect of taking time away from actually *doing* things, and frankly, that's annoying.  Nevertheless, I shall attempt to be more prompt in my postings in the future.

These days we're pretty much just livin' life.  This coming week marks the end of Adam's first year of preschool, and he's already asked me if I can find him another school to go to until his starts again in the fall.  I suspect he may not always be quite so enthusiastic about the educational process, so I'm going to enjoy this while it lasts!  Aside from some snotty/spring cold-ish/upper respiratory something or other that he's trying to fight off right now, he's been feeling great.  The scar on his belly from his g-tube closure has healed beautifully, and I'm told will continue to fade as time goes on.  (It's cool that Adam likes pirates, because when he takes his shirt off it looks like he's been in an epic sword battle!)


"Ahoy me hearties, where's my rum?"

I'm finishing up some choreography at the dance studio, and working on a rough draft of a parent advocacy pamphlet for the hospital.  Once all my clearances and whatnot are updated, I'll also be starting to substitute teach at Discovery Kids in Middletown....the preschool/daycare where I taught before Adam was born.  Subbing will be fantastic for me right now, I think.  Getting back to teaching once in a while will be great, a little extra money is never a frowned upon thing, and I'll have the flexibility to say no if I'm needed on a day that Adam has appointments or isn't feeling well.  Plus...bonus!....he can come to work with me! 

And, just because I'm pretty darned proud of my engineering skills, we'll close with a few photos of the "scuba gear" that I pieced together for Adam out of some bits of old medical equiptment that was around the house.  His new tv show du jour is called The Octonauts.  The Octonauts have scuba gear....so obviously Adam needed some too!  For our medically inclined friends.....the face mask is part of a trach collar, the medicine cup from a nebulizer, and some oxygen tubing.  The "bweaving tank" is an ambu bag connected to part of a ventilator circuit.  Top with swim goggles, and you're ready to dive!  Or at least pretend to dive! 

Hope everyone has a great week!
~Jess


Face Mask
Breathing Tank



Let's do this thing.




Wednesday, April 11, 2012

Seasons of Love

It could certainly be argued that Rent references have become cliche.  Today, however, as we celebrate the one year anniversary of Adam's successful airway reconstruction surgery, I am overwhelmed by how truly amazing the past 525,600 minutes of his life have been.  So indulge my theatre geekery.  :-) 

As a wonderful prelude to this anniversary Adam had two very successful procedures at CHOP on Monday.  He had the hole where his g-tube used to be surgically closed, and he had his...drumroll please....last bronchoscopy!  The general surgeon said that the belly procedure went well and smoothly, and he wouldn't need to see us again at all.  The Wizard said that his airway looked good....and in fact was wider this time than it was six months ago.  She said that we should of course keep in touch about any changes, problems, or issues, but otherwise she would now see us ONCE A YEAR in clinic.  You are correct then, friends, in assuming that as far as we know now, Adam is finished with surgeries.  (I must clarify here that if there's one thing this journey has taught me it's to never speak in absolutes....the minute you say something is the worst or grossest or scariest or final thing ever, it's like a challenge to the universe to prove you wrong.  So I'm not saying never....but I am saying that after 12 trips to the OR in 3 1/2 years this gets a big HELL YEAH!)

We're having a mellow celebration at home tonight, as Adam is still having some pain from his belly procedure.  Pizza, ice cream, and movies in our jammies will be just the thing to remind us of how close we came to the dark side, and how beautiful every single moment is in the light.  So, you ask, how did we measure this year in the life?  In no more tubes and wires....in speaking out loud for the first time....in starting school....in making friends....in embracing life.....and yes, most assuredly....in love.

Saturday, April 7, 2012

Update from Oz

Just wanted to fill everyone in on our visit to CHOP yesterday.  Incidentally, the Wizard of Oz references started when we began referring to the airway surgeon as "The Wizard".  This led to CHOP being called Oz.....which then led to lots of unnecessary but entertaining analogies about flying monkeys, witches, scarecrows, etc.  You get the idea. 

The "worm bench".  Always a favorite!
At first there was some concern that we were going to get benched from the procedures on Monday.  (Adam is having a bronchoscopy, and his g tube stoma surgically closed.)  He was on a 5 day course of steroids two weeks ago to help this crazy cough he's had, and typically they don't like to do any sort of surgery too close to when the kids have been on steroids.  After some deliberation though it was decided that since it was a small amount for a short time, and since his lungs sounded clear during his exam that it was ok to go ahead. 

We had lots of fun at the voice clinic visit, and got some good news too!  First Adam got to be totally in his element....singing, talking, and telling stories into a "weal yife micwophone"!  (which was attached to a computer that mapped his voice...volumes, patterns, etc)  He had the speech therapist thoroughly entertained!  Then we had audience with the wizard, who snaked a tiny camera down Adam's nose to get a look at his throat.....and she somehow managed to keep him calm enough to talk while she had it down there!  (Wizard...see....this is what I'm saying.)  This birds eye view showed that Adam does not, in fact have a partially paralyzed left vocal cord as we had previously believed.  Both cords vibrated beautifully!  The entire mechanism is slightly swollen and more sluggish than normal....something about having to be cut apart and put back together and whatnot.....but his voice does, in fact, function exactly as it should.  Suh-weet!

"Sunny day, sweeping the clouds away...."

Waiting for The Wizard
Everyone was very pleased with how much Adam was talking, and with all of the progress he has made as far as volume and being able to control having different sound qualities to his voice.  (We call them the Elmo voice and the Cookie Monster voice, and he can use either if it's requested.)  We learned that the lower, raspier sounding voice that he uses most often is a result of something called supraglottic phonation.  (fancy, right?!)  Basically that means that he's using the structures above his vocal cords to do most of his talking.....apparently very common in people who have had airway/vocal cord reconstructions.  When he speaks in the higher sounding vocal timbre, he's using all of the structures appropriately, as a person with a normal throat would.  The consensus was to let Adam continue to explore and play with his voice for another six months to a year, but that after that time he would be a great candidate for more formalized sort of weekly voice therapy exercises.  They feel like he has the potential to gain more volume, and minimize some of the gravelly sound over time. 

Passed out on the couch after we got home!
I'll be sure to update everyone again after the procedures on Monday.  This should be....cross everything!!!.....his last bronc!  And I'm not gonna lie....I will NOT miss that hole in his belly one tiny little bit!  We're also approaching the one year anniversary of Adam's reconstruction surgery, so stay tuned for some sort of weepy, reflective, how did we get so lucky post coming soon.  I know you're all excited now!  In the meantime, everyone take good care, and enjoy the Easter/Passover festivities with friends and family! 

Friday, March 30, 2012

"Story Story"

Adam has been really entertained by making up stories lately, so last night we tried playing the "story story" game.  This was during yet another span of countless minutes...hours...days (it feels like it sometimes) that found me sitting on my bathroom floor waiting for Adam to get finished doing something.  Whether he is getting finished on the potty, getting done in the tub, brushing his teeth "jusht one mowe time" to be sure he got every tooth, or pretending that the cabinet under the sink is the repair garage for his cars, I spend a LOT of time waiting for Adam to get done in the bathroom!  So last night I decided to try and make the time interesting.  I wasn't really sure if he would catch on to the game, but it turned out to be fantastic!  I wrote the story down right away so I wouldn't forget....I think we're going to type it out and let him illustrate it.  The transcript is below, for your enjoyment!  :-)

**For those of you that have never taken an acting class, improv workshop, or had a really fun english/comp/creative writing/whatever teacher......this is a game where one person starts a story, and then one at a time each person playing adds on to the story to eventually (hopefully) bring it to a conclusion. There really aren't any rules, other than that you have to support the story and keep it going to a natural end.  (i.e. you can't just say "And then they all died." if you're tired of playing!)  I've indicated which lines are mine and which are Adam's in the story.  (Adam came up with the title after we finished writing it.) I was pretty jazzed about how quickly he took to the idea!**

The Princess and the King's Rescue Story

(J) Once upon a time there was a kingdom with a green dragon and a purple dragon.  (A) And once upon a time there was also a King.  (J) The King only liked to ride the green dragon and that made the purple dragon sad.  (A) But the Princess liked to ride the purple dragon and that made him happy again.  (J) So the King and the Princess went for a ride on their dragons.  (A) When they got back they saw their whole castle had disappeared.  (J) They flew to the Royal Magician to find out what had happened to their castle.  (A) The Magician told them that some birds broke the castle with their beaks and flew away with the pieces.  (J) The King and the Princess found the brids and asked for the pieces of their castle back.  (A) The birds said ok, but only if they could build a birdhouse next to the castle.  (J) The King and the Princess agreed, and they all worked together to build the castle and birdhouse.  (A)  The King gave the birds some gravel to play with, and they all lived happily ever after.  The End!

Sunday, March 25, 2012

Doctor Land

I'm pleased to bring you another installment of the "This is why I have gray hair!" show!  Starring me.

Adam is sick right now. I'm hoping that he's finally turning the corner towards improving, after over a week....fingers crossed!  He's had the gnarliest, goopy sounding cough and a fever that started last Saturday morning and didn't go totally away until yesterday.  He's been lethargic, less appetite, increased work of breathing, snotty nose.....not cool.  As an aside...I'm convinced that the word "preschool" is just a carefully crafted euphemism for "drop your kid in a petri dish full of horrifying pestilence and hope for the best." Now, back to the conversation at hand.  After three visits to the primary care doctor, and one phone call to pulmonology, we've got antibiotics, 5 days of steroids for the airway inflammation, and a plan for extra chest pt to get the gunk up and moving.  Proactive.  I like that.  The specific source of my increased gray hair during this last very long week, however, was primary care visit number 2. 

At the point of visit number 2, I had...obviously...already had Adam at the doctor once.  I was told that it was most likely viral, and to ride it out for another 48 hours.  Now, there is a very limited amount of time that I'm willing to let Adam "ride out" a cough and increased work of breathing.....something about the two years on a ventilator and the airway made out of rib cartilage...but what do I know, right?  So, 48 hours after visit one, when the fever was still present and the cough was getting worse, back we went.  On this visit, we saw an attending physicain who I had never met.  It's always someone different covering the acute clinic, so you kinda have to take what you can get.  He seemed pleasant enough upon entering the room, but it all went down hill fast.  He did an extremely brief exam....didn't look in Adam's nose, didn't listen to all the lobes of his lungs, and looked at his belly but didn't actually touch it.  Then he asked me what I felt Adam's problems were.  After I finished explaining the progression of all his symptoms, and how I was especially concerned about the lingering fever, the doctor gifted me with what may, in fact, be the most douchecanoeish comment I've ever heard.  "In Doctor Land, this fever is not a concern."

I'm sorry, what was that?  Doctor Land?  Oh, I've heard of that place...it's just south of Asshatville, on the banks of Did You Seriously Just Say That creek.....right?!  Doctor Land?  Oh dude.  Welcome to I'd Like to Smack the Crap Out of You Town. After staring blankly at said doctor for a moment, trying to wrap my brain around the utter ridiculousness of what had just ensued, I was able to respond.  "Thanks for that," I said, "But I live in Adam Land, where we have a history of prematurity, ventilator dependence, chronic lung disease, subglottic stenosis, and airway reconstruction which makes every symptom of infection a concern.  So I'm going to come back another day when I can see someone who doesn't live in Doctor Land."  And then I snatched the check out form from the poor resident who looked like he wanted to melt into the floor, and I left.  After paying my co-pay.  Again.

Let's not even begin to explore the fact that this guy completely invalidated my concerns, made sweeping generalizations regarding the fact that all symptoms are the same in all children regardless of medical history, and missed the chance to actually find and diagnose the issues that were dealt with in visit number 3.  Let's just stop the bus right at Doctor Land.  Doctor. freaking. Land.  Someday, I'm going to go to Doctor Land.....and I'm going to find that guy.  In the meantime, I've given the office's medical director an account of my unfortunate visit.  Apparently I'm not the only one who thinks that Doctor Land isn't an ideal vacation destination.

Tuesday, March 13, 2012

Ahhh....perspective

I have recently had several well intentioned people ask me questions about Adam.  The first question is "Are you going to get his scar fixed?"  and the second is "Will he always talk like that?"  Since I feel it is in bad form to smack the crap out of generally nice people in public, I shall avail myself of this opportunity to address those questions.  I might swear.  Just sayin'. 

Question #1:
If, as a parent, the worst thing that you can wrap your brain around having happen to your child is that they should have a scar on their neck.....you are so god damned lucky there are not even real words to describe how god damned lucky you are.  If, however, as a parent, you have been told things like "You probably shouldn't leave the hospital tonight, because it could go either way." or "Several of the conditions we're testing him for are incompatible with long term life." then you would realize that ending up with just a scar is sort of the equivalent to winning the lottery while in Disney World.  I don't give a rat's ass about that scar.  If Adam decides he doesn't like it some day, then sure, we'll get it fixed.  In the meantime I'll look at it every single day and thank every single doctor and deity that bestowed their graces on him.  If he didn't have that scar he wouldn't be here. 

Question #2:
For the first three years of his life, Adam couldn't make any noise at all.  His airway was completely closed off by scar tissue, and his vocal cords were fused into one scarred mass.  Then once upon a time the good fairy of airway reconstruction bestowed upon him a miracle of modern medicine.  She cored all the scar tissue out of his airway, and using bits of his rib cartilage, made grafts to hold it open.  Then she separated his fused vocal cords, sprinkled on a healthy shake of fairy dust and POOF!  That shit worked!!  It boggles the mind, it does!!  Three months, one decannulation, and a sluggish left cord later....he spoke out loud for the very first time.   Now all the kid does is talk!  And yes indeed, he sounds like a cross between Froggy from the Little Rascals and the world's whitest Barry White impersonator.  "Will he always talk like that?"  WHO CARES????!!!!!!

Dude.  I feel so. much. better.  :-)  

Monday, March 5, 2012

Confessions of a "chronic" Mom

Adam has a little bit of a head cold right now.  It's really not much of anything but a clear drippy nose and a little bit of sneezing, and he's eating like a horse....so I'm not too concerned.  It's interesting to me now though, since I'm dealing with more "regular kid" situations than medical issues, to reflect on how life as a "chronic kid" mom has warped my otherwise rational mind.  (Don't judge that rational mind comment....leave me to my delusions!)



Steaming away the stuffy nose

One thing I have learned from being Adam's mom is that I am extremely cool under pressure of the medical variety.  I have done emergency trach changes in the car, been covered in blood, trach secretions, and stomach acid, watched a reintubation, seen my child with a heart rate of 40 and oxygen sats so low they stopped reading, and signed surgical consents like it was my job.  I can tell you if my son is tachypnic, tachycardic, cyanotic, retracting, whether his lungs sound clear bilaterally, and if his cap refill is good.  I can piss off an entire medical team in less time than it takes me to shower, and BRING IT insurance companies and pharmacies.  I will eat your livers with some....you know the rest.  If it's go time....I'm going.  You would think then, that the normal bumps, bruises, and germies of childhood would be no big deal.  You would be incorrect.

Surgical consent...boom!

Once upon a time, (just about a year ago) I was pushing Adam in the swing in our backyard.  We were out there for a long time...swinging, winding and then unwinding the chains, seeing how high we could go....all those fun swing related things.  When Adam was finally ready to get out of the swing, I stood him on the ground and he promptly fell over.  I stood him up again, and he fell over again.  The third time I stood him up, he took three steps and then fell over.  And then I flipped out.  I scooped him up and ran upstairs to his room.  I put him on his pulse ox....I listened to his lungs.....I shined a light in his eyes to see if his pupils dilated properly.  My mind was racing with thoughts of all the neurologically horrifying reasons that my perfectly mobile child suddenly couldn't stand up and walk.  And then I noticed him point to his tummy and sign "funny".  I'm sorry....what?!  Your tummy feels funny?!  You mean to tell me that instead of having a stroke you're having motion sickness from being swung and twisted for the past hour?!  You're just DIZZY??!!  I started to do that hysterical laugh/cry thing....you know that thing....fear, mixed with relief, tinged with the unavoidable reality that you're just a wee bit bonkers.  Adam held still for about 5 minutes, and then signed "play trucks, bye" and wandered off to find his toys.  And there I sat, adrift once again in the realization that motherhood, for me, is a whole different kind of party. 

Spring 2011







Saturday, February 25, 2012

There's a first time for everything!



Well, here we are then.  It would seem I've started a blog.  Hello to all!  Since I can't even count the number of times that I have heard some variation of the phrase "You should blog about Adam"......I've decided I will!  Factoring in the obvious maternal bias, I'm fairly certain I have one of the world's coolest kids!  Adam has been on an amazing journey in his brief 3 1/2 years, and I look forward to sharing his story, his antics, and his general love of life! 

 *I would like to take this opportunity to insert a disclaimer, however.  While this blog will, most assuredly, be a whole lot about Adam, it will also be a little bit about me.  Opinions, frustrations, joys, reflections, general musings on the universe, and whatever else I happen to think is snazzy at the moment could, in fact, be a part of this blog.  You've been warned, people who think I'm not allowed to talk about anything but Adam.  You've been warned.* 

Whew!  Ok, now that we've gotten that bit of housekeeping taken care of, my next assignment will be to figure out how to present the epic insanity that is Adam's back story in tidy blog format.  This calls for coffee!  :-)

~ Jess ~