EMERGENCY!

Another interesting week to document...

On Friday, we took Jack to Children's Hospital for a scheduled MRI appointment.  This scan and accompanying blood work should help our insurance company accept and cover his growth hormone treatments.  So, the alarm went off at 4:45am, and we packed a busy bag to entertain Jack because, let's face it...we knew we were going to be there for at least three hours.  At least.   The MRI went off without a hitch.  It was a little disconcerting to see Jack's tiny limp feet hanging out of the MRI scanner, but I focused on an ancient issue of  People Magazine and got through it without panicking. 

In recovery, we waited for Jack to rouse...and waited and waited.  While Jack slept, the doctor came in and told us that there were some concerns about his blood work - his red blood cell count was 7.1, with normal levels being around 11 for someone his age and size.  So, they were going to run more tests.  I immediately hopped online and read things like "anemia," "mineral deficiency"..."cancer".  Okay, okay...let's not get all freaked out by playing Internet doctor now.  Two hours later, Jack woke up unhappily, and the doctor returned to tell us that his white blood cell and platelet counts were also below normal.  They wanted to run more tests, so, they were admitting us to the ER.  At this point, we were already in the hospital for five hours.

The ER doc visited shortly after we got a room downstairs and point blank told us that at this point, they had no idea what was going on, but they were looking for signs of cancer, mainly leukemia.  WHAT?!?  So, we watched as he checked Jack's body for lymph nodes and waited another three hours for a chest x-ray and a hematologist to review his blood slides, not knowing what to think - trying not to think.

Well...nine hours, three blood tests, one MRI and two x-rays later, the doctor informed us that his blood slides looked great, and the hematologist saw nothing emerging or anything currently of concern.  Phew!  But really?  Did we need to go through all of that?  What would it be like to go to the hospital for a scheduled appointment and leave within a reasonable time without a scare, I wonder?

We got home and ordered some food, and that evening, my face started dripping.  The stress and lack of sleep opened me up to a fantastic head cold that immediately traveled to my chest.  Two ear infections and bronchitis for me, my men are now sick, and I've completed one round of antibiotics and still feel like crap.  I'm so behind on my work.  Ugh.

Our knight in shining armor!  With his protection and love, we'll persevere!

On a positive note, we've administered the growth hormone for over two weeks now.  We've noticed some improvements in eye contact and play.  He's pulling more toys of the shelves and exploring more intently and consistently.  He also seems to weigh 20 pounds more than before, but I think I'm just weak from illness.  ;)  School has had an amazing impact on him, and we're set to start wraparound services with a TSS in our home Mondays, Tuesdays and Thursdays from 9:30 until after noon.  Intense?  Yes, especially when combined with school and outpatient therapies, but it's much-needed help.  I hope we gel with the TSS.  That's my next worry.  ;)  I'll always worry.

She's BAAAAACK! - Part 1

Friends, the wait has been long.  Another catch-up entry needs to happen unfortunately, but I will be starting a blogfest from this point onward.  I promise.  No really.  Blogfest.  It's what's for dinner.  It's amazing how life makes those unexpected turns and puts you in a different frame of mind and moves you forward, for better or worse.  I'd like to think that we're moving forward in a positive sense, and here's my explanation why...

1.  GROWTH HORMONES
The test results came back, and Jack does indeed have a growth hormone deficiency.  This is also the cause of his random bouts of hypoglycemia.  So, that problem is solved!  I've been doing some research and found a study that looked at children with autism secreting low levels of GH.  They discovered consistent advancements in socialization and communication after the children had been administered GH injections for three to four months.  I also know a fellow teaching artist who gives his son GH injections, and he's seen a dramatic increase in focus and eye contact soon after the initial treatments.  So, these are all good things!  Here's the downside:  GH treatments are horribly expensive, and we've already gotten our first denial letter from the insurance company.  We have an advocate from the pharmaceutical company that will help us with the appeal process, and they put us on the interim program, which provides the hormone treatment free-of-cost until the insurance company caves.  Apparently, it's common for medical insurance providers to refuse this treatment right off the bat because it's considered experimental.  Hence, the MRI and additional blood work we're getting next week to push our case.  Long story short, we received our first shipment, and a nurse came this evening to show us how to give him the injections...DAILY injections, mind you.  We shall see, folks.  We shall see...

2.  SCHOOL DAYS
Jack is in his third week of school at the LEAP Preschool, and he loves it!   I'm overjoyed because I know he's getting his needs met those three hours/day:  therapies, socialization, play, etc.  Since I work with children and have this intense background in education/arts, I felt that I could do everything for Jack on my own, and when I couldn't live up to my expectations, the weight of failure and pressure to be "on" every moment of every day started to cripple me.   He's with professionals who are dedicated to working with children on the spectrum, and he heads excitedly to the door when he hears the phrase "go to school".  AND...I have three hours of "me time" every afternoon.  I didn't even know what to do with myself the first week.  My house is actually clean.  I'm getting lesson plans written and developing a new training.  I can even watch reruns of Desperate Housewives and have a mimosa, if I want.  Here's a recent article in the Pittsburgh Post-Gazette about Jack's school: 

http://www.post-gazette.com/pg/11255/1173585-114-0.stm

So, Jack's schedule just got extremely intense.  School M-F from 12:30-3:15.  W and F mornings, he's in therapy at Sensory Link  www.sensorylink.com , and soon, we'll have wraparound services, also from The Watson Institute, M, Tu and Th mornings.  All good things.  He'll have someone on his tail from 9am - 3:15 every weekday.  That's right, buddy.  You can't escape anymore.  ;)  We also received his Dynavox Maestro speech device last week, but it needs to be programmed to suit his particular communication needs.  www.dynavoxtech.com   Adding it to the to-do list...

3.  MY PROFESSIONAL LIFE
I'm a teaching artist for Gateway to the Arts, and this organization is affiliated with Wolftrap's Education Program for Early Learning (PreK mostly).  See link below for more information about the program:   http://www.wolftrap.org/Education/Institute_for_Early_Learning_Through_the_Arts.aspx
Well, my boss recently submitted my teacher training materials to Wolftrap's headquarters to be considered as a national presenter, and they liked what they saw!  So, I'm headed to DC in late November with fellow TA, Christina Farrell, to audition for their roster.  That means, I could be called upon to present anywhere in the US for a nice fee and travel expenses paid!  For someone who does not feel comfortable talking in front of adults, I'm a little flabbergasted by this!

Also, a child care center, The Alphabet Tree in Blawnox, decided to redesign their entire school curriculum based on my teacher training, STRETCH Your Storytime.  I'll be offering them professional development throughout the year and completing a 6-week residency with two classrooms.

Bob and I watched a documentary called "Autism - The Musical" a couple months ago, and it chronicles The Miracle Project, developed by Elaine Hall, that provides socialization opportunities for families of autism via the children writing/performing in a musical.  Dramatic play, music and movement are all used to help children on the spectrum socialize and express themselves, and the results are amazing!  I co-taught with the amazing visual artist, Alison Zapata, this summer, and we decided that we're going to launch a similar arts-based project for the Pittsburgh autism community!   Laurie Tarter, another teaching artist colleague and fabulous modern dancer, is joining our cause, and I've talked to several other amazing performers and musicians to volunteer their time.   So, this fall is all about grant writing and program development!  Maybe a launch next year?  My goal is to give parents an AFFORDABLE and accessible way to provide these experiences for their children because the arts motivate, inspire and surprise, right?  Plus, who can afford $300 for six music therapy sessions?  UGH!  That's the other option here in town. 

And there's more:  there's a possible part-time job opportunity on the horizon that might double my current salary in addition to Gateway and make things much, much easier on us financially.  I'll keep you posted!

Well, I think I wrote enough for five blogs here, but I thought I would at least get the ball rolling.  There's more to share.  I mean, it's been about six weeks since my last post!  Later, gators!

The Growth Hormone Test

Yesterday, we trudged back to Children's Hospital for Jack's Arginine/Insuline Tolerance test designed to check growth hormone levels.  This test stimulates the pituitary gland to produce growth hormones, and if the test proves that Jack does indeed have a growth hormone deficiency, this might be what's impacting his occasional bouts of hypoglycemia.  Somehow, it's all connected.  If I had an hour and a strong margarita in me, I might be able to make more sense of it all for you.  Alas, it's 7:30am, and I'm delirious and barely through my first cuppa joe.  So, bear with me, friends.

The test itself is about two and half hours long, during which they take 10 blood samples.  They hooked Jack up to an IV to make the dispensing of medicine and blood work go much easier.  Jack, who before this point was his happy-go-lucky self, saw the various IV gear and, I think, recognized it from an earlier hospital visit.  The incredulous look he threw at the nurse was classic.  He's a trooper though and managed to stay seated for the first hour of the test, happily playing with the iPad. 

Side note:  I would like to personally thank the creative team at Apple for inventing this marvelous piece of technology.  Not only is watching our little Jack navigate the iPad faster than an any savvy adult completely fascinating, but also it saves our tired butts during these grueling hospital visits.  From the bottom of my heart, I love you, Apple.  You rock.

At the top of the second hour, the nurse administered the insulin, which would dramatically drop his blood sugar level.  This is the scary bit.  Another nurse needed to be in the room to help monitor his behavior, just in case his levels dropped to life-threatening levels.  They had a charge of sugar water to surge into his IV, if that happened.  His blood sugar dropped to 16 (remember, anything below 70 is low), and the effects of hypoglycemia are sleepiness and irritability, among other things.  We needed to keep Jack awake for 7 minutes to get the next blood sample, which was horribly difficult.  He made this constant part-whine/part-scream that gutted me, and he desperately wanted to pass out - more than a lush after an all-night bender.  So, the nurse gave us ice chips to rub on his body to keep him alert.  He started shaking slightly and would fall asleep within seconds until the next ice cube hit his skin.  To say Jack hated us at this moment is an understatement.

Needless to say, we survived the ordeal.  Fifteen minutes later, Jack's blood sugar rose to normal levels after a cup of juice.  And, thank the dear lord, after falling asleep at 6:45pm, he slept through the night last night.  Yeah, we were up at 6am, but having a night of uninterrupted sleep is a gift!

We'll have the test results in about two weeks.  If he is growth hormone deficient, he'll need hormone injections several times/month, probably through puberty, that we'll learn how to administer here at home.  Those will help him physically develop at a typical pace.  I'll keep you posted when we get the news!

That's Just the Sadness Creepin' Up on You

You know, I started thinking that I was finally accepting Jack's diagnosis, and all of a sudden, I'm crying in Jack's bed, holding his tiny hand, after he fell asleep.  It was the little things today that eventually set me off.  His happy squeals at the pool, seeing his skinny body shiver in the cool breeze, dozing off to sleep in the car...

And back at home...I call his name over and over with no response.   Finally, I lightly restrain him to get his attention, turning his face toward mine as his eyes deliberately look past me.  I watch and puzzle over his enjoyment in the repetitive behaviors:  pushing the same button over and over to hear an interesting sound, spinning in his swing, chewing on toys and the iPad, the same nonsense babble spoken again and again, staring and flapping with excitement at his party store kazoo.

Frustrated with my inability to connect, I desperately ask, "Jack, can Mama play your kazoo?"  He stops and looks straight in my eyes, putting the cheap plastic instrument in my mouth and waiting until I play a quick song.  Then, he retrieves the kazoo, leaves the room and retreats back into Jack's world.  It was a little moment where he acknowledged me.  He heard me and chose to interact.  15 glorious seconds. 

Part of me is elated that I broke through, but then, I briefly think about what "could be" or "should have been" and grow sad.  After that, I feel guilty that I'm wishing things were different, which brings about more sadness (and a strong inclination to pour myself a glass of wine).  He's a beautiful, happy boy, but the difficulty, for me, lies in the regression.  Bob and I glimpsed the "could be"...we saw the personality develop, the keen interest in the world around him - we heard his words, and then, something cruel stripped that away, leaving us with a little boy struggling to make sense of our world and preferring to reside in his own.

I often think this will never be "okay" - that this sadness will permeate through each day, everyday and erupt without warning, like tonight.  When will acceptance come, I wonder?  How can I accept something that strangles my son's development and has no understandable cause and an uncertain future?  How can I parent a child and not feel secure about my decisions regarding his treatment?  What if we did something to cause this, or we're making things worse?  I know, I know, don't think that way, but honestly, it's difficult not to let this train of thought take over some days, especially when fatigue rears its ugly head.  This whole thing is just plain sad...a sad weight I feel will never truly lift.

Autism Party at the Mall

With a high temperature today of 95 and a heat index of 105, even with our a/c quickly working itself into  a sweat, our house reached a balmy 87.  Jack was whining.  Parents were whining. What's a miserable family to do?  Why, go to the mall!

We headed up McKnight Road to Ross Park Mall.  There is a kid's play area with slides and a carpet representing the Pittsburgh rivers that Jack likes to explore.  On a typical visit, he obsessively goes up and down, up and down, up and down one slide or crouches down to examine the large carpeted letters spelling out the three rivers.

It was 7:30pm when we arrived, and it was hopping.  There must have been 30 kids running amok and hanging off the play equipment while parents chilled on the sidelines, texting or deciding which store to hit up next. Jack, recognizing the joint, immediately gave us that gold medal smile and started excitedly babbling and gesturing emphatically with his arms. 

After removing his sandals (mall policy), we put him on the Ohio River portion of the carpet, and he was off.  While screeching and squealing, he managed to run the perimeter of the play area, successfully avoiding contact with any other child's body, or eyes for that matter.  It always amazes me to watch him navigate a crowded space, whether crowded with people or toys.  I never see him LOOK at what he so expertly avoids.  He just knows that there is something to evade.  Every once in a while, he'll approach one of the other parents and smile, which we always like to see.

Ten minutes later, Jack realized that there are too many bodies on the slides, making it difficult to do his typical up/down, up/down, up/down routine.  So, he started escaping the play area, barefoot, and running toward the outside doors.  Bob's after him, and Jack quickly cuts to the right and races, still barefoot, through the mall thoroughfare.  And let me tell you something, Jack is quick.  I'm hobbling after them, and finally catch Bob stuffing Jack's feet into his shoes near the escalators.  A mall cop, riding a Segway, chuckles and says to me, "It looks like you've got your hands full."  Yeah, buddy.  Sure.

Jack wanders around this area and discovers two leather benches pushed side-by-side with a grooved horizontal pattern that feels much like a gymnastics mat.  He shimmies his body up on the couch and starts commando crawling to the opposite end, peering over the side onto the floor.  Back and forth, back and forth, back and forth.  Once satisfied with that experience, he rubs his hands and arms across the grooves, smiling and babbling to himself.  Then, he log rolls across the couch, stopping only to examine the sky lights and beams above.  This full-out, unexpected sensory experience happily occupies about 15 minutes of our mall visit.

All of a sudden, he's off and running again.  He noticed an Abercrombie and Fitch sign outside the store and examined the letters closely, rubbing the back of his hand on the words to gather more information.  The boy loves his alphabet, and the mall is an excellent place to view letters of all sorts. 

Then, it was off to the escalators.  I needed to run and pick up a few things for a bachelorette party that I'm throwing tomorrow night for two lovely brides-to-be.  So, I left the boys to their escalator fun.  Bob told me that they must have ridden up/down, up/down, up/down about fifteen times.  When I returned, they were on a downward returning trip, Jack smiling ear-to-ear with Dada talking him through the "step off" portion of the experience.

Who knew the mall was this interesting?  Capital letters entice the eye!  Furniture built for a tumbling routine abounds!  Moving stairways to paradise (or the food court) take us to new heights!  Kid's playground?  Bah!  Who needs it?  Jack knows where the party truly is.

Time to Face the Music

Yeah, yeah, yeah...it's been some time. 

We're on another whirlwind:  summer school, singing, motherdom, weddings, etc.

I guess I'll start with summer school.  For monetary reasons alone, I opted to teach an arts curriculum for Pittsburgh Public School's Summer Dreamers Academy, a fancy title for summer school.  Aren't they clever?  Alison Zapata and I are co-teaching (thank the dear Lord) inner city first and second graders in an unairconditioned building, and it has been an eye-opening, completely draining experience.  First of all, the lack of communication between administration and teaching staff is mind-boggling, and secondly, I cannot believe how many 7-year-old gangsta thugs we have in the room.  Like father, like son?  I don't know...these are the kids that need us the most, and their need for attention manifests in MANY different ways.  I'm trying to hone my empathy as a calming tool when things go awry, but it's difficult.  I don't think the 95 degree and up temperatures in the school help much either.  Oh well...14 more days.

Singing.  WOO!  Well, Bob asked Dan and I to play a gig at Caribou next Wednesday, the 27th.  C'mon down!  I think we start around 6:30pm. We're doing our blues/soul set.  We're simultaneously prepping for a wedding gig and the cabaret I'm apparently debuting in Westmoreland county in late August.   Add to that some soloist work with the Eclectic Laboratory Chamber Orchestra on August 5th, and I suddenly feel like a honest-to-goodness working singer again.  And it feels great!  It's time for Dan and I to make some dough wailing on voice/guitar because dang, we rock, yo.  We just dilly-dally in the marketing, go-get-'em department.  The cabaret is coming together s-l-o-w-l-y (I still need to write it), but I'm stoked to have something under my belt that's completely mine.  It will all come together because it has to.  Yesterday, I mailed my application and dvd audition for the second season of "The Voice," too.  Why the heck not?  If I've got it, might as well flaunt it.  If nothing happens, then it's no skin off our backs - business as usual.  But if something does happen...well...let's just say karma owes us big time.

In Jack news, we decided to take him off the gluten/casein free diet for a spell.  After eight months, we have not seen any major benefits from this diet.  He had sleep issues both on/off the diet, never had any major gastrointestinal problems to begin with and some of his focus improvement might have more to do with age and behavioral therapy.  With his hypoglycemia issues, we feel that a healthy, well-fed boy is more important right now.  The diet is so restrictive and SO expensive, and it's benefits are still conjecture.  Many parents/doctors feel strongly about the benefits or lack there of for children with autism, and most research is inconclusive.  So far, it's hard to tell whether there's been any major change by adding gluten and dairy back in the mix. He's thrilled to have goldfish, ice cream and mac-n-cheese again.  He's been stimming a little bit more, but he's also going through another waking-up-in-the-middle-of-the-night phase, something that happened regularly even on the diet.  When he's exhausted, he tends to stim more, and yesterday, he konked out at 7:15pm.  He has two weeks to give his body a chance to adjust, and then, we'll decide.  I've read several autism websites that talk about adding digestive enzymes to the child's diet to help them process troublesome foods.  Many parents have had much success with their children on the spectrum taking these enzymes while keeping a regular diet.  That might be our next step.  If there are naysayers out there, disapproving of our decision...bite me.  We're doing the best we can.  AND he can go back on the GFCF diet at any time.

Other than that, it's wedding and shower time a-go-go.  We have five weddings to attend this summer and one friend having a baby.  So, every weekend from last week onward holds a new bridal/baby shower, bachelorette party or ceremony.  We're a little stressed about money and wanting to represent ourselves gift-wise, but you know, we'll do what we can.  Luckily, our friends mostly understand where we're at and what we can handle, but I still want to do something nice for them.  I have a few tricks up my sleeve yet.

Well, time to do the dishes and prepare for another sweaty afternoon in the classroom....

Tummy Obsession after Three Years

Jack discovered our bellies this week.  He's obsessed with them and takes any oppotunity to lift up our shirts and squish his face into our belly fat.  We do talk about our belly buttons a lot in this house, but I'm not sure what preciptated this new interest.  He likes to motorboat bellies now.  Hey, it's direct interaction with his parents, and however odd it may be, we'll run with it.  It could be worse...he could be motorboating elsewhere like a many a male. 

Jack turns THREE tomororow!  Crazy, right?  This year was a total blur, but when I look at him these days, I see a growing boy ready to start school in two months.  My baby is gone.  He's all legs and attitude now.  ;)  There's been some upset when people ask me what we're doing for Jack's birthday.  Our answer typically involves some stutters and "ummms" and ends with a "nothing much."  I don't see the need for a party at this point in the game.  Birthdays aren't really on Jack's radar yet, and I feel any to-do we would throw together would be more about us - not the clueless boy running around the house, clutching his kazoo.  We planned on getting him a special GFCF bakery treat at Glutteny and having him pick out a toy or two at Target to bring home.  The museum or a visit to the splash park might happen, too.  I think he'll dig that.  After a year at school, he'll gain some buddies to invite to a party next summer. 

In other news, today was our last day with in-home therapists.  When he turns three, his services shift, and he'll receive his therapy at school.  Honestly, for me, it's a relief.  He's been extremely ornery and unreceptive to the girls trying to work with him here, but he loves his OT at Sensory Link, the gym he visits in Gibsonia twice/week.  We're adding another day of OT and an additional hour of Speech Therapy there this month.  It'll be good for him to relax a little more at home and not have strangers trapsing through the house throughout the week, agitating and upsetting him. 

I don't believe that a forceful approach is key for autism therapy.  He does great work and shows progress when it's motivating and more on his terms, and since he's so young, I don't want Jack to associate what the therapists deem "play" (sitting him down to put shapes in a sorter, rings on a stacker, etc.) as the be-all/end-all way to socialize with an adult.  We have more meaningful interactions when following his lead and cues.  He can complete his task work at school and keep home as a safe, fun zone. 

Here's a trip down memory lane...Jack's first birthday: