Wednesday, November 30, 2011

I was always that kid

I was always that kid.

 In elementary school there was a room off of the library where I’d sit and throw a big beach ball with a boy with severe Cerebral Palsy.  In the summers, my mom and I would volunteer at Easter Seals.  I was that kid in middle school who opted out of Channel One news broadcast during homeroom to help out in the Severely Profoundly Disabled (SPD) room.  I can even remember most of their names and stories—shaken by a babysitter, multiple seizures at birth, genetic defects.  Perhaps, though never crossing my mind at the time, it was some ill-fated attempt of mine to bargain with God not to give me a “special needs” child.  Maybe somewhere in my subconscious I thought that by volunteering to push their wheelchairs around the middle school or to dance to Shaniah Twain I would somehow be spared the paralyzing fear of living it.

     Then, as I got older and understood a little more about responsibility, I was that young adult who lingered a little when passing a family with a handicapped child.  I was aware of trying “not to stare” in order to be polite.  The truth was, if I did stare it was because I pittied them—both the parents and the child.  I thought to myself “how do they do it everyday?”  I reveled in how brave they were if they had other, especially younger, children.  I never considered that they really weren’t given a choice.

You guessed it!  We got more news about Jackson’s Progressive Infantile Scoliosis today from Shriners.  Honestly, I am more confused now that I was before I received the call.  Jackson’s curve was originally 44 degrees, and after his first cast it was 40 degrees (4 degrees of correction).  That has always been fairly straight forward.  The RVAD (rib slant) is an entirely different story.  There are so many different numbers swimming in my head right now that I’m not even sure how to write it down.  Bear with me.

Back in September I was told that Jackson’s RVAD before being casted was 27 degrees.  Before he was put into his second (current) cast, I was told that his new RVAD was 23 degrees BUT that his original (pre-cast) RVAD was 51 degrees.  Obviously, this is a big discrepancy.  I waited almost 2 weeks to hear from Jackson’s doctor’s nurse to clarify these numbers.  When she called me today, she told me that Jackson’s original RVAD had been 27 degrees BUT that his RVAD before his second cast was 51.  The number 23 was not mentioned again, and she didn’t know where that number came from (how about the surgeon’s mouth?) or where it went.  If that is correct, Jackson’s RVAD actually worsened 24 degrees while he was wearing his first cast, although it was being held at 2 degrees in the cast itself.  NONE OF THIS MAKES ANY SENSE TO ME!

I requested that the surgeon himself call me because the numbers keep changing, and I feel that there is a breakdown in communication somewhere along the line.  Naturally, however, he did not call me back today … and he leaves tomorrow for a conference that lasts until next week.  Isn’t it ironic that 15 minutes of his time could have radically changed an entire week of my life, yet he still chose not to return my phone call?  In my angst, I telephoned Heather Hyatt-Montoya (the founder of the Infantile Scoliosis Outreach Program, ISOP) to discuss these numbers.  She thinks things sound fishy too.  She said that in over 10 years of working with Dr. Mehta herself, she has never heard of an RVAD progressing that much in a cast!  She suggested that while I wait to hear back from Jackson’s surgeon, I put together a packet for another casting doctor at the Shriners Hospital in Greenville, South Carolina.  Thus began a 4-hour ordeal of ordering x-rays, taking photographs, and writing a three paged letter to another physician.  Still, I really know nothing more than I did 2 weeks ago … except that now there is a possibility that Jackson’s scoliosis actually worsened rather than marginally corrected.  Oh yeah, and that now we may be in the process of getting yet another opinion and traveling to another, further-away, hospital for treatment.

I was always that kid.  Now, I’m that cynic.  I’m that mother who reads mommy-blogs where complaints are issued about being up all night with a teething child, and I think (sometimes aloud) “wah, wah, wah, I feel so sorry for you!”  I find myself thinking the strangest thoughts that probably never cross parents’ of “normal children’s” minds like ‘I wish this was just something like a simple cleft lip or hypospadias or strabismus.  The type-A, control-freak that lives inside me desperately needs a timeline.  I don’t mind the serial plaster torso casts, I just need a guarantee that they are going to actually work … and I’d like to know precisely how long it is going to take.  It can take a long time; I just want to know how long.  Unfortunately, that is not a possibility with PIS.

Granted, Jackson is not in a wheelchair … and I am thankful everyday that he has his mental faculties—he smiles, laughs, dances, and protests loudly when he’s mad.  However, Progressive Infantile Scoliosis is an absolute bear of a condition.  I cannot tell you how many times I have to bite my tongue when someone tells me a story about “a girl they knew in high school who wore a back brace.”  It is a completely and profoundly different condition from juvenile/adult scoliosis, and it is the most difficult to treat and only potentially fatal orthopaedic condition in children.  It sucks every. single. day.  Especially days like today.  It sucks because I have no idea what the future holds.  Heck, at this point (ahem), I have no idea what the past held because I cannot get return phone calls and/or straightforward answers.  Right now, Mehta casting is Jackson’s only option other than an expandable titanium rib that is surgically lengthened every 4-6 months until puberty.  However, with a condition that is progressive, waiting around for phone calls and correct answers doesn’t sit well with me.

When I’m not being cynical, I am mostly tired.  I am tired of making phone calls, faxing forms, and writing letters.  I am tired of mourning the loss of normal motherhood.  I am tired of making difficult decisions.  Most of all, I am tired of worrying everyday if I am making the best decisions for my baby.  I am exhausted from analyzing every detail that might have, could have, or should have gone differently.  I am tired of not being able to take a nap because I am slightly shaking from anxiety.  I am tired of fearing that Jackson may not wake up from anesthesia, that his excessive exposure to radiation might eventually cause cancer, and that the doctor is missing something or doing something incorrectly.  I feel like I have run 25.1 miles of a marathon, yet I am still standing at the starting gate.

I realize that was a very long way of telling you that I am still waiting for 100% clarification on Jackson’s scoliosis measurements, but it was my form of therapy.  And, I am tired.

Sunday, November 27, 2011

Happy Thanksgiving

Happy Thanksgiving
... from our family to yours ...

... from her kitchen to yours ...

... from his bird to yours ...
(also from her kitchen)

... from Roanoke's mall to yours ...

... from our sweetheart to yours ...

May this holiday season be filled with all the things you love the most!

Happy Thanksgiving!

Monday, November 21, 2011


Honesty really is the best policy, right?  Well, let me be honest.

I am extremely disappointed and disheartened by our recent trip to Philadelphia for Jackson's second casting.  I have lost both my trust of the anesthesia team and my optimism about Jackson's treatment.  When we went to see Jackson in the PACU after his second Mehta cast was placed in the OR, we were told that--because his ET tube was not adequately secured with tape, he experienced a laryngospasm which required him to be "bagged" and given albuterol and decadron for breathing.  I would estimate that I spoke to 4 different people on the anesthesia team prior to his procedure about the "tape allergy" that they have recorded on Jackson's chart (I'm assuming this is why they failed to tape the ET properly).  His supposed "tape allergy" is a mild redness on his skin that goes away within hours.  Numerous times I told them to disregard it as an allergy, but obviously they did not.  In the end, fortunately, Jackson recovered fine from the anesthesia and does not seem to have any lasting effects from the episode.
I cannot say the same for myself.

Then, we were told the results from Jackson's first cast.  Well, sort of.  We were told half of the results.  Two months ago, PRIOR to Jackson's first cast, I was told by his doctor that Jackson's curve was 44 degrees and his RVAD (rib slant) was 27 degrees.  Then, on Friday, the SAME DOCTOR READING THE SAME XRAY, told me that these original numbers were a curve of 44 degrees and an RVAD of 51 degrees.  In my opinion, that is a huge discrepancy.  Currently, I am waiting on Jackson's care coordinator to get me the correct information.  But, naturally, due to the holiday there will be a significant delay in getting it.  The story of my life!  Jackson's new "measurements" are a curve of 40 degrees (4 degrees of correction) and an RVAD of 23 degrees (somewhere between 4 and 28 degrees of correction).  I have mixed feelings about that.  An RVAD correction of 28 degrees would be excellent progress; however, it also means that Jackson's scoliosis was worse than we originally thought.  An RVAD correction of 4 degrees is not very good progress.  A curve correction of 4 degrees is also not very good progress.  

So, in a nut shell.  The correction to Jackson's curve was essentially null and void.  The correction to Jackson's RVAD was either null and void or significant, meaning his scoliosis was worse than anticipated.  

But, in the spirit of Thanksgiving, I will try to briefly muster a bit of positivity.  Jackson's spine did show a potential to correct itself by moving slightly.  Many parents of casted kids I have spoken with on the support group have told me that throughout their journey they have had individual casts that were not very effective but others that were.  The 4 degrees that Jackson's spine did move were in the correct direction ... meaning his scoliosis did not continue to progress in the cast.  And, although is was incredibly small, Jackson's spine did make some progress (unlike his poor, sweet roommate who got 0 degrees of correction on both measurements).  

And, perhaps the biggest miracle of all, our poorly-wrapped Christmas present (green cast with red duct tape) is amazingly happy in his cast ... which is a good thing, because now we know that this is going to be a very long process.

Saturday, November 19, 2011

Miss my Griff

Oh, how I miss my sweet Griff when I'm away on these Philadelphia trips. She does a body good ... especially in stressful times. Looking forward to cuddling my sweet girl tonight.

Thursday, November 17, 2011

Prayers for Jackson

If you've stopped by the blog today, please take a moment to lift Jackson up in prayer.  We go for Jackson's second Mehta cast procedure tomorrow morning.  Currently, it is scheduled for 7:30 am.  He will hopefully have an X-ray taken prior to the cast placement to determine what correction his spine got from cast #1.  Please pray for good, resolving numbers (going down).  Also, most of all, please pray for safe anesthesia and for a good tolerance of his second cast.  Thank you so much!

More updates to come as we are able.

And ... now, for a little wow-factor!  At Orlando's SeaWorld, there is a female whale named "300" who has scoliosis like Jackson.  She was just fitted with a special brace to gently correct her crooked spine and guide it to grow straight without surgery.  How amazing is that?

Pray, pray, pray!

Monday, November 14, 2011

Free At Last!

Free at last, free at last, our Jacko-Taco is free at last!

Well ... at least for 4 days ... but every victory counts.

This morning we ventured to our local hospital to have Jackson's first Mehta cast removed before his second cast is placed this Friday in Philadelphia.  Justin and I were filled with nervous excitement as we weren't exactly sure how the morning would go.

Here are Jackson's last few in-cast moments today.

Checking out the cast saw before they started cutting.

The scary looking Mr. Saw.

Here is goes . . . and although the doctor told us to expect him to "scream bloody murder," he was wrong.
Praise God, Jax liked the saw again!

"All done!" we signed when the cast came off.

Then, we had the time to examine Jackson's skin which hasn't seen air, sunlight, or water in 9 weeks.  It wasn't pretty (or for those with weak stomachs), but we were thrilled to find no open sores or areas that looked infected.

And, naturally, we've spent some time gawking at Jackson's back to check out his curvature.  There is still some obvious scoliosis present (which we expected), but we think the "hump" looks reduced and the curve somewhat lessened.  We will find out our numbers on Friday after more X-rays are obtained.

Here are our rather crude before and after photos of Jackson's back.

(may appear slightly worse than reality due to his reaching arm)


Believe me, the X-ray machine is a much better indicator of the actual correction than my photographs and naked eye.  So much depends on angles and position.  So ... we will update you on our "actual correction" as we are able later in the week.

Please keep Jackson in your prayers throughout this week.  Please pray for protection from illness, for good "correction" from cast #1, for tolerance of the anesthesia, and for acceptance/fit of cast #2 to be placed on Friday.  Thank you!

For now, however, we are busy enjoying baths, figuring how to walk steadily again, and being Mommy and Dadddy's skinny, squishy, gummy baby!  :)  Haha!  You wouldn't believe how different he feels!  It's so good to be free.

Sunday, November 13, 2011

Enlighten Me!

DISCLAIMER: (perhaps it's a bad sign if you need one of these, but oh well) This blog post is not meant to insult or discourage anyone who believes differently that I do.  It is, however, meant to express my personal opinion AND to enlighten--me.  So, please, if you have something constructive to say ... do!

Here goes:

Recently I have been, honestly, rather "shocked and appalled" at some other mommy-blogs I have been following in regards to these women's "green/natural/organic" approach to parenting and life in general.  DO NOT misunderstand me:  I enjoy a good block of goats milk soap as well as the next woman.  Also, I love and respect many wonderful, well-educated mothers who have chosen some natural and unconventional remedies to implement into their lives.  I have an amazing cousin who uses an alternative vaccine schedule for her children and (you go girl) gave birth naturally.  I also have some dear friends who use cloth diapers, buy organic produce, etc.  While I do not do these things myself (other than delay Jackson's MMR), I very much respect my friends' decisions and love learning more about them.  Besides ... those cloth diapers now days are super cute!

I do, however, think that when it comes to these natural alternatives, one can get "carried away" so to speak.  Sometimes, less really is more.  I suppose my very simple and strongest sentiment is:  I JUST DON'T GET IT.  I think making healthy decisions is awesome, but I really do not understand why certain people chose to research ad nauseam every way in which they can deviate from what is considered "the norm."  Have they ever stopped to consider that their exhaustive research and herculean efforts to create home remedies for everything (food, medicine, cleaning products, detergent) might actually be taking away from quality time with the children they are supposedly purifying through these efforts?

Here are a few examples of the things that I "just don't get."  

1.  Not using dryer sheets because they cause cancer.  Umm ... as a former Oncology RN, I seriously doubt the 1 in 4 Americans who are diagnosed with cancer attribute their disease to using dryer sheets.

2.  Breastfeeding a child who is old enough to walk up to you and stand suckling at your breast ... and take photographs of this for the internet.

3.  Using a cold water enema to cure a fever.  This particular example is not only ludicrous, it is also incredibly dangerous.  This could cause a vasovagal response in the child, slowing the heart rate, dropping the blood pressure, and causing fainting and subsequent injury.

4.  Giving a child a multivitamin, cod liver oil, Benefiber, organic pear nectar, jarro-dophilus, flax seed oil, and raw honey--every.single.morning--to avoid taking a stool softener.  Overkill much?  Poor kid!

5.  Leaving your children completely unvaccinated by obtaining special waivers.  This is inconsiderate of other people's children and irresponsible for your own.  These are the mothers who run to the pediatricians' office when a measles outbreak is reported on the news and demand an immediate appointment and vaccination.  Can talk the talk, but can't walk the walk, eh?

6.  Creating a fever to cure a sore throat.  Yeah--that's what I thought too.  This mom-blogger suggests placing a child into a bath of "as hot as tolerable" water in order to raise the body temperature and supposedly remedy the sore throat.  "Gee, honey.  The sore throat is gone, but now Johnny has third degree burns, a severe fear of the bathtub, and streptococcal septicemia."

7.  Using cloth paper towel and/or cloth toilet paper.  In my opinion, you might as well save water too by ceasing to wash your hands.  I cannot even comment on the cloth toilet paper--it is honestly beyond my comprehension entirely.

8.  Purging your medicine cabinet from everything ... yes, everything, according to a blog I am following.  I hope I never get a migraine at her house!

9.  Eliminating everything with HFCS from your child's diet.  I have a feeling more people may disagree with me on this item, but I think this is absolutely fine in moderation, and you'll never change my mind.  I'll bet she'd really have a problem with that rainbow cake I made for Jackson yesterday.

10.  Removing your children from preschool/school so that everything they learn is from the family's personal belief system.  While this idea is idyllic ... and while I certainly do think there are legitimate reasons to homeschool and that our children are exposed to unsatisfactory ideas/behaviors in the school setting ... it is impractical.  Unfortunately, the entire world does not revolve around your family's personal belief system.  In my opinion, this only creates children who are unable to socialize, employ proper decision making and prioritizing, and cope with real-world challenges and disappointments.  I know, shoot me!

Okay, I think that is probably enough controversy for one blog post tonight.  It is a topic that has been on my mind for some time now, and I really felt I needed to discuss it.  I welcome any constructive comments (agreeing or disagreeing with my opinions).  And, if any unknown readers out there enjoy this type of lifestyle and can truly explain it to me, please, by all means, enlighten me!

Last (first) Cast Day

Happy Last (first) Cast Day, Jacko-Taco!!! We are so proud of your resilience. Small celebrations just aren't our style.

Saturday, November 12, 2011

Our Little Chinaman

Guess where Daddy just returned from?

Meet:  our little Chinaman

Not looking so excited about his traditional Chinese garb.

Getting there . . .

Almost . . .

There is it!

Watch out Ming Dynasty . . . this little warrior has ideas of his own.

Friday, November 11, 2011

6 Years Old

I seriously cannot believe I have a six year old baby girl.  Granted, she's a canine ... but she is every bit a part of our family!

Happy 6th Birthday to my very best friend ... my velcro-dog ... Maggie Mae.

I love you so much!

Good morning, Sunshine!

Hope you enjoyed your "party" in bed . . . and your gifts.

Judging from your toothy grin, I'd say you did!

I only hope that we bring as much joy to your little life as you do to ours.  May you have many, many more birthdays to come.  We love you!

Monday, November 7, 2011


Fall hues . . . there's nothing quite like them in this world.

Not Me Monday

1.  I have not vomited so many times throughout this pregnancy (thus far) that when asked, "What does Mama do?" Jackson will bend slightly at the waist and proceed to stick his tongue out over and over.  No way!  Not me.

2.  My toddler's new favorite word does not happen to be "no."  He definitely does not say "no" to everything he is asked with the exception of "Do you have a peepee?" to which he did not respond with his first and resounding "yeah!"  No, not him.

3.  I did not go to SweetFrog yesterday to get some sour "original tart" flavored frozen yogurt only to find that they discontinued that flavor at the Winchester location.  How, may I ask, do you discontinue a flavor named original anything?  That's like BK discontinuing the Whopper.  Anyways, when the teenager behind the counter told me that "no one liked it," I did not secretly have to restrain myself from yelling "I LIKE IT, YOU MORON ... AND I'M PREGNANT ... AND YOU SHOULD CARRY THAT FLAVOR IF SOLELY FOR ME!"  Nope.  Not I.  I also did not have to concentrate on not crying when there were no other flavors that appealed to me and I left empty-handed.

4.  I did not go bra shopping yesterday and walk up to the cash register one, two, three different times with a wireless, full coverage, 1/2-inch-thick-strapped "granny" bra because it was just sooo comfortable before deciding that no matter how pregnant I am, I am just too young for said bra.  Nah!  I wouldn't do that ... not me!

5.  If I order french fries with anything I eat, I never have to cover them with a napkin and sneak one out at a time to prevent multiple loud outbursts from my typical dinner date that just might love fries himself.  Certainly not me!  I have also never given him one just to stop the ringing in my ears.  Heck no, that would be irresponsible!

6.  The type-A side of me has not already made, ordered, stuffed, and addressed our Christmas cards.  No way!  I am also not planning a trip to the post office this week to see if Christmas stamps are available already.  Nah ... and I have definitely not finished all of my Christmas shopping either.

7.  I did not sneeze and ask my husband for a tissue only to receive it and, upon wiping my nose, discover that it was wet.  My hubby would certainly never have handed me an already-been-used tissue off of his nightstand.  That tissue was definitely not used after suctioning Jackson's nose with the bulb syringe.  That did not happen at our house!  That would be gross!

8.  My sweet husband did not look over at my from the driver's seat the other day and say "I'm not trying to be mean, but I thought that expensive makeup you bought was supposed to help clear up your acne?"  I did not seriously consider smacking him nor did I loudly proclaim "You are such a jerk!  It's my hormones!  Don't mess with me!"  Nope.  Not me!

Tell me, what have you not done this week?  

Saturday, November 5, 2011

Good Eats

Those of you who know me well know that I am very much a "work in progress" when it comes to cooking. Well, Justin and I have been attempting to cook either lunch or dinner at home on most days, and since we had lunch at the Alamo Drafthouse Cinema today, we opted to cook dinner. Granted, it was simple ... and in hindsight, rather thanksgivingish, but it actually turned out pretty well. We had pork chops with apple sauce (thanks Katie), cranberry stuffing, yams, and a rather ghetto looking piece of garlic bread (ie: hamburger bun with butter and garlic). However, the final result looked pretty good! And, judging from Jackson's belly ... it didn't taste too shabby either!

Wednesday, November 2, 2011


Jackson has met his match: the public library. A lover of the mall, loud music, the circus, and the zoo...there's just something ominous about rows of books and a sweet little librarian singing songs. As soon as we hit the doors he starts crying and clinging to me. Anyone else experienced such bookphobia? Please help us!

Tuesday, November 1, 2011


Extra, Extra, read all about it!

Although I did find this interesting to discover in hindsight, I know that I couldn't have handled it in reality.  God bless you J.K. Rowling for not killing off Ron Weasley!