Tuesday, March 27, 2012

Incredible Hope ... Casting #4

I am overwhelmed with how much I love my child ... with how brave he is ... with all he's been through ... and with how lucky we are that he has Progressive Infantile Scoliosis.  

That, I know, probably comes across as a strange sentiment ... especially the latter part.  However, as I have said to those closest to me on numerous occasions:  having a child with a "special need" brings you into contact with so many other families of other special needs children.  And while I won't go into details at the present time, throughout our Mehta casting journey we have met so many other families facing far greater challenges than we are, and that has made us immensely thankful that Jackson's condition is one with major hope for a bright future.

Jackson's fourth Mehta casting procedure this Monday brought us just that ... incredible hope!

Naturally, even this overall "good" casting experience was marked with a healthy dose of Heath-family drama.  Naturally!  For starters, when we were about 45 minutes from Philadelphia, and with absolutely no warning whatsoever, Jackson vomited.  We heard a momentary gag, and then the real fun began.  Up until this moment ... Jax had not had any GI symptoms whatsoever ... and as soon as he finished throwing up, he went back to jabbering and smiling in the back seat.  It was a great mystery really, but enough to really freak me out.  I became fearful that the anesthesia team would not be comfortable intubating him after an episode of vomiting due to the increased risk for aspiration.  However, because he was acting completely normal, was afebrile, and had not had any other related symptoms, they chose to proceed with his 4th casting as scheduled.

Then, if the vomiting wasn't enough ... I was still able to experience a few moments of true panic as well.  Two months ago, I had requested that Dr. Perez be the anesthesiologist to handle Jackson's casting procedures from now on.  I love this woman's bedside manor, and I am completely confident in her expertise.  I was promised in writing by Jackson's care coordinator that Dr. Perez would be handing his "case."  Then, on the Friday before casting, I confirmed this verbally with the PACU.  Fastforward to Monday morning in pre-op -- and Dr. Perez was NOT assigned to Jackson.  Although I questioned this and explained my frustration and concern ... they refused to change the assignments, and Jax was left with the other anesthesiologist.  It isn't that I don't like the other anesthesiologist, per se, it is just that on a previous casting with his "team," Jackson's ET tube was not properly taped (not necessarily by him) which resulted in a dangerous laryngospasm.  Therefore, I have lost some of my confidence in this "team."  Not having any choice in the matter, we proceeded with casting #4.

Jax weighed in at 28 pounds (fully clothed and diapered).  I was, however, pleased to see that he had gained a little weight.  Granted, only one pound since his 18 month check-up (he's currently almost 23 months) ... but still, a little.  Trust me: it's not from a lack of eating!

He received his "casting day" toy from Shriners Hospital.

His vital signs were taken, his premeds (Versed and Tylenol) were given, and soon he was taken back into the operating room.  More than usual, I was very tearful to kiss him "goodbye."

Thankfully, however, within about 1.5 hours ... Jackson's orthopedic surgeon, Dr. Cahill, came into the waiting area to give us some amazing news!

Jackson's last out-of-cast, standing X-ray (the most accurate measurement) revealed a curve of 40 degrees.  His out-of-cast, standing X-ray taken on Monday revealed a curve of 22 degrees!!!  That is a HUGE improvement in casts #2 and #3 ... averaging 9 degrees improvement in each cast (plus at least 4 degrees in his first cast).  We were absolutely ecstatic to hear this wonderful report.

Dr. Cahill also gave us the option of stopping casting for the summer and putting Jackson into a removable brace ... then restarted casting in September.  We, however, declined this option.  My exhaustive research on Dr. Min Mehta's casting model ... the "golden standard" for correcting PIS ... has taught me that harnessing the rapid growth of the early infant/toddler years is the keystone on achieving permanent correction of spinal curvature.  Taking a "cast break" over the summer would cost Jackson 3 months of "early growth," and that is not something we are comfortable doing.  Besides, Jackson is so used to being casted at this time ... why stop now and restart later?  That seems kinda cruel to me!  So, we will proceed with serial plaster casting throughout the summer.

Jackson awoke from casting in much better spirits than usual.  While there were a few expected tears, it was nothing compared to our last traumatic experience.  Jackson's cast was trimmed, petaled, and duck taped with "happy feet" duck tape.  He was very excited about that!

We were ready to leave Shriners before lunchtime ... which was a definite plus as Jackson kept repeating "egg" and "orange juice" in the PACU!  My boy loves his breakfast!

Jackson's in-cast X-rays (in cast #4) show that his curve is being held at 4 to 5 degrees ... about the same as it was in cast #3.  We will continue to be optimistic and prayerful that his spinal curvature will continue to resolve in this cast as well.

After lunch, we headed to our hotel for the evening ... and had a little miniature party ... aka, Jax got his usual "casting day" gifts from Mommy, Daddy, and his NeNe.

The rest of our trip was relaxing ... with a long afternoon nap (for everyone), a trip to the mall, and a nice dinner.  Jackson slept well throughout the night and our drive home was uneventful.  We are thankful to all those who sent up prayers for our family this time!  It was honestly our first casting that truly went what I would consider "normally."

Praise the Lord for safety, resolving numbers, and proper casting!
All that we asked for ... may He continue to guide our journey.

Sunday, March 25, 2012

Prayers for Casting Day

Hello to all my readers out there! Just stopping by the blog before bed to ask for your prayers for Jackson's 4th casting at Shriners Hospital tomorrow morning. Specifically, please pray for safe anesthesia, correct cast placement, and improving spinal curvature numbers! Thank you all! Updates to come as we are able.

Saturday, March 24, 2012

Thursday, March 22, 2012

Zoo, Take Two

With beautiful weather predicted and a temporarily cast-free kid ... Justin and I decided to be very brave today.  Ha!  We ventured back to the National Zoo in Washington D.C. with Jackson.  This time, I'm pleased to say ... it was much less stressful ... probably because we drove our own car and we left the zoo to eat our lunch.  No matter how you spin it, it was a "glass half full" kind of day!

"Wave to the monkeys, Jax!"

This, as you may begin to notice, has become Jackson's new smile ... very cheesy!

Thank goodness he still looks cute with one eye closed!

Jackson's favorite exhibit was definitely the "Dumbos."  Actually, he cried every time we walked away from them.

And although he wasn't crazy about his sunhat either ... the day was still a "roaring" success.  Couldn't resist!

Wednesday, March 21, 2012

Farewell, Cast #3

It's that time again ... Mehta casting time!

This Friday was supposed to be "cast removal day" for Jackson's third Mehta cast to correct his scoliosis.  However, throughout the week ... we started to notice that he was burping, eating less, and even limping a little bit on his left leg.  The bottom of his third cast was really tight when it was applied ... and during the past 8 weeks, it had grown so tight that I could no longer get a fingertip beneath it.  Thankfully, our local orthopedic practice was able to squeeze him in for a cast removal this morning ... two days early!  That gives him 4 upcoming days -- cast free!

It was really neat this time at the doctors' office.  For the first time, Jax actually understood that we were getting his cast removed (or at least we think so).  When we entered the waiting room, he said "belly" and started patting himself.  That's because he knew he was going to see his usually MIA belly again.  Then, as we were waiting for our name to be called, he started pulling on his cast and saying "off, off."  This is not something he does at home ... believe it or not!

Soon ... it was our turn ... and there was a bit of anxiety as the cast saw was immediately brought into the room.  Unfortunately, our usual "daddy picture" does not show Jackson's smiling face this time.

Thankfully, Jax still didn't cry very much during the loud sawing.  I think he is so brave!

Once the back of cast #3 was cut through, Daddy was able to pry it off as usual-- revealing Jackson's teenie tiny waist.  It always amazes us how VERY little he is beneath that bulky cast!  In fact, I had to run to the mall to get him something to wear tomorrow ... as he is only about a size 18 months out of his cast!

Jackson's skin was very, very dry as it always is ... but there were no open sores.  We are a little concerned about a patch of raised tissue at the bottom of his spine ... but we will have to wait and address that with Shriners on Monday before casting.  His spine is looking excellent to the naked eye! (stay tuned ... saving that photo for my usual comparison)

After Jax regained his balance, he spent the next few minutes checking out that "belly" of his ... and making up for lost smiles at the beginning of his appointment.

Farewell, Mehta cast #3 ... we hope you performed your duty well!

*   *   *

And now, the really important part:

Prior to cast #1:

Prior to cast #2:

Prior to cast #3:

Prior to cast #4 (today):

Woohoo!  Lookin' good ... we hope!

Now, we ask for your earnest prayers ... for a healthy next 4 days ... for safe travel ... safe anesthesia ... smooth, issue free casting ... good X-ray results ... and good tolerance of cast #4!

Tuesday, March 13, 2012

Oliver's Baby Shower

On Saturday, my wonderful mom, MIL, and SIL threw me another AMAZING baby shower for "Oliver."  My heart was warmed by all of the incredible friends and family members who came to celebrate the upcoming arrival of our second baby!  I am so very thankful for those people in my life who have made (and are still making) this pregnancy so special.  With beautiful weather, yummy food, fun games, cute decor, and the best company in the world ... our family was truly blessed this weekend ... even if our grouchy neighbors did call the cops three times for supposed "street parking violations."  Haha ... it wouldn't be complete without just a little drama, right?

Nevertheless, I think everyone still had a "hoot" ... sorry, couldn't resist!

"Big Brother" even got in on the action!

Now, let the "nesting" officially begin!

Baby Oliver, we can't wait to meet you ... in only about 8 weeks!