Thursday, January 31, 2013

News About Maggie Mae

Today I went to what has to be one of the saddest places on Earth ... the "hospital ward" at the vet's office.  It is with a boulder on my chest that I write this post, but I find that writing is often therapeutic for me, so here it goes.

Our beloved Maggie Mae has been steadily losing weight for about 6 months now.  At first, it wasn't anything drastic, so we figured it correlated with Oliver's arrival and was perhaps related to nervousness.  Overall, Maggie was acting like herself ... barking at the front door, begging for leftovers, and snuggling up close to us in bed.  Then, about 2 months ago, she really began to look thin.  Her little 12 pound frame didn't give much room for weight loss.  She was still eating, but it seemed like she only wanted table scraps.  Often, her dog food would go for days untouched ... but, when she got REALLY hungry ... she would eat.  Since her annual vet exam was due in January and she wasn't showing any other symptoms, we waited to take her at the first of the year.

Her January exam went well other than marked weight loss.  She weighed 9 lbs. 13 oz. down from 12 lbs. the year before.  Her vet listened to our account about her eating habits and suggested either dietary changes or an expensive bloodwork panel.  We opted to attempt dietary changes first.  We tried a slow change over to canned dog food ... which worked for awhile until she began to vomit.  Then, we switched to simply chicken with white rice.  Again, it worked for awhile ... until she began to vomit.  Then, Maggie Mae stopped eating all together.

This Tuesday, we took her in for the bloodwork.  Well, today I received a telephone call from the vet explaining the results.  It wasn't good.  In fact, it was very bad.  Maggie's kidney enzymes, Creatinine, and BUN were extremely elevated ... so much so that it was nearly certain she was in chronic renal failure.  As soon as I heard those words, my heart stopped.  I know from my nursing background that people in CRF are candidates for kidney transplants or dialysis.  Neither are options for dogs (unless you are a millionaire).  The vet was gentle in his recommendations, but really gave us only a few options.

As I type, my best friend is hospitalized at the vet's office to receive IV fluids, antibiotics, and antiemetics.  Her little body was so full of toxins that she could not eat without vomiting.  Her current therapy will flush her kidneys enough to allow her to temporarily feel better.  However, after a tearful heart-to-heart with Maggie's wonderful nurse Sherry this afternoon during my visit, the prognosis is probably not good.

There is a fraction of a chance that this therapy will restore enough function to Maggie's damaged kidneys for her to return home and thrive on a special diet and some kidney medications.  If that is the case, we will be thrilled.  However, much more likely, this therapy is palliative.  It will allow Maggie Mae to recover enough to come home a spend a few special days with her family before crossing over the Rainbow Bridge.

We could force Maggie to "fight" her condition with daily, home subcuteaneous fluid bolus injections and a drawer full of medications ... as well as frequent (even weekly) trips to the hospital ward at her vet's office to prolong her life.  But, neither Justin nor I feel that is the type of life our little girl would want.  If her kidneys do not resume function on their own from this initial treatment, they never will.  She would spend the rest of her life on IV drips (at home and inpatient) only headed toward an inevitable death.

My heart is absolutely broken.
She's not even "gone" from us, and I miss her terribly.  I already find myself looking for her on the end of couch or at my feet to find she isn't there.

Maggie Mae has been my confident, my silent but all-knowing best friend in the world.  She has seen me through countless challenges and snuggled away my tears.  If she were here right now, I know she'd be doing just that.

I love her so much.

As always, prayers are greatly appreciated during this time as we make difficult decisions about our first "baby," Maggie Mae.


Friday, January 25, 2013

Duck Tape Boy

Introducing ... Duck Tape Boy!!!


No, really.

I'm serious.

This is the new face of Duck Tape.

... at least at the Shriner's Hospital in Greenville, South Carolina ...

I just wanted to share with my blog family how excited I am about Jackson's little 15 minutes of fame.  A couple of weeks ago, I decided to write a letter to Duck Tape Brand sharing with them a little about Jackson's condition and how their product impacts both cast waterproofing and decorating fun.  I explained to them how wonderful I thought it would be if they donated a Duck Tape display to the Shriner's "cast room" so that each child in a Mehta cast could choose a patterned Duck Tape for his/her new casts.  Low and behold, last week I received a phone call from the corporate offices of Duck Tape Brand, letting me know that they were DELIGHTED to extend such a donation in Jackson's honor.  A few more phone calls to Shriner's Hospital ... and, it should be well underway at this point!  I am going to be choosing a photograph of Jackson wearing his Duck Tape-covered Mehta cast to send to the "cast room" to hang beside the display for other children to see.  We are so excited about this generosity for such a wonderful cause!  Go Jackson!

***

If you are interested ... here is a copy of my letter:

Dear Duck Tape brand,

Moving boxes … wallets … prom dresses – all interesting uses for Duck Tape, but I bet mine is better!  Duck Tape has been one of many unlikely products to be a true “life saver” for my 2-year-old son, Jackson, who was born with a rare and potentially fatal (without treatment) medical condition called Progressive Infantile Scoliosis.  Since he was an infant, Jackson has worn a series of plaster body casts applied by Shriner’s Hospital for Children to straighten his severely deformed spine.  Without Shriner’s, Jackson’s aggressive spinal curvature would have continued to worsen as he grew and would have eventually crushed his internal organs.  The phenomenal news is although Jackson is still undergoing treatment at Shriner’s, his scoliosis curve has decreased from 50 degrees to only 4 degrees!  Obviously, God, incredible orthopedic surgeons, complex tools, and a plethora of medical technology have worked together to make that possible; however, Duck Tape has been there all along the journey as well.

Around Shriner’s Hospital for Children, Jackson is fondly known as “Duck Tape Boy.”  He loves his name.  As you can imagine, keeping a busy toddler completely dry for 6-8 weeks between plaster casts is no easy task.  So, using a little imagination, my husband and I decided to waterproof Jackson’s plaster casts using Duck Tape.  It has worked incredibly well, and the doctors and nurses have been telling other families about our experience with your product.  Before each serial casting, we take Jackson to the store to choose a fun new design for his next cast.  So far, Sponge Bob has definitely been his favorite!

The reason I am sharing our unique story with your company is to ask for your help.  It would be fantastic for other young children undergoing this complex procedure to have both the fun experience and the practical advantage of waterproofing their casts using Duck Tape.  Therefore, I am writing to ask you to consider donating rolls of your patterned Duck Tape to Shriner’s Hospital for Children.  If you are only able to donate to one hospital, I request that it be to the Shriner’s Hospital for Children in Greenville, South Carolina where Jackson receives his treatment.  You would bring so many smiles to the faces of these brave little ones!

Please contact me if you have any questions or to organize the donation:

[insert info here] 

I have included several photographs of Jackson in his casts wearing your amazing Duck Tape product.  Thank you for your consideration.

Sincerely,

Jennifer A. Heath 

Thursday, January 17, 2013

Potty Dance

We've been doing a lot of the potty dance around here this evening!

Because ... Jackson peed in the potty for the first time ever!

(hey ... you're on my personal blog ... what did you expect?)
*grin*

He was pretty excited to check out his progress ...


And he yelled "touchdown" when he realized his success!

And ... naturally ... we celebrated with birthday cake ice cream!


Another day for the [baby] books!

Saturday, January 12, 2013

Mehta Casting #8; Overjoyed!

I am flooded with so many emotions all in this very instant.

I am overwhelmed with the realization that Jackson's Progressive Infantile Scoliosis is being CURED by serial plaster torso casting ... and that 10 years ago, his condition would have killed him.

I am speechless that had I not been a "type-A," tech-savvy, medically inclined (thank you nursing degree), albeit pushy mother ... Jackson would have already undergone countless painful, invasive, complicated, and dangerous rib rod-lengthening surgeries that would have left him to spend his toddler years in the PICU.

I am a little apprehensive and confused about Jackson's doctor's current treatment plan (explained below).

And ...

I am overjoyed with the news that Jackson's current, out-of-cast, standing x-ray reveals a COBB (curve) of 4 degrees ... and that is NO LONGER CONSIDERED SCOLIOSIS!!!

*   *   *

As you can tell, we just returned from another trip to Shriner's Hospital for Children in Greenville, South Carolina for Jackson's 8th Mehta casting procedure.  As usual, in full-incredible-Jackson fashion, my son was an absolute trooper.  He NEVER throws fits or protests the huge amount of rigmarole that goes along with a "casting day."  I think a lot of people, even those who know us well, think that when I say "Jackson is going for another cast" I mean a simple application of plaster on an exam table.  I figure they picture getting a cast applied for a simple broken arm.

Well, that is not the case ... Jackson is anesthetized and intubated in the operating room, pulled into total-body traction on the casting table, manipulated by the surgeon into a straight-spine position (this time, overcorrected and pushed to the opposite side of his curve), and wrapped 360 degrees in 4 pounds of plaster.  Then, he must recover, sit with the cast dryer, have his cast covered in moleskin and duck tape before he can be discharged.  It is a 5-6 hour process IF we are the FIRST case of the day!  All of this happens every 6-8 weeks ... and his favorite phrase through it all is: "thank you."

Because I haven't shown this before, just to help my readers visualize the casting table (and perhaps have insight into the complexity of the procedure), I want to include these stock photographs of the Mehta casting table and procedure.




Mommy:  "Jackson ... do you love you cast?"
Jax:  "Oh yes!!!"

Speechless.

*   *   *

Okay, enough of the heavy ... here are a few pictures from our last trip to Shriner's this week.

On Wednesday, Jackson had his pre-op examination in the clinic.  Dr. Stasikelis, taking childhood radiation exposure seriously, rarely x-rays his patients.  Even when I requested an x-ray, we has highly apprehensive.  However, after watching Jackson walk shirtless down the hallways, Dr. Stasikelis exclaimed "His back does look awfully good ... let's go ahead and get an x-ray today."

And ... you think the beaches of Thailand are beautiful?  Well, nothing compares to this beauty:


A curve of 4 degrees!!!

Medical texts will tell you that considering standing variances and reader-error, a spinal curvature of 4 degrees (less than 10) is NOT CONSIDERED SCOLIOSIS but a NORMAL VARIATION!!!

Seeing that little number literally brought tears to our eyes and immense warmth to our hearts.  We were on cloud nine!

For comparison, here is Jackson's final x-ray before beginning Mehta casting in September 2011 in Philadelphia (this x-ray was taken in July 2011 ... so, it was probably even worse).

(around 50 degrees)

And here is a comparison of Jackson's x-rays just since switching his care to Shriner's Greenville, SC.  He began there at 18 degrees and is now at 4 degrees (in only 2 casts)!


I'm telling you ... I could shout from the rooftops!!!

*   *   *

Early Thursday morning, we arrived at the hospital for Jackson's scheduled casting.  We are so thankful for our family and friends who were praying with us for an EARLY casting OR time slot.  Jackson was scheduled FIRST!

Soon, we were in the PACU and Jackson was getting ready for his surgery.  You know, no big deal to this guy!



Jackson was looking forward to choosing a toy off the toy-wagon ... and you can see in the photograph below that he scored a pretty awesome monster truck.  The strange shirt he has on provides a nice protective barrier for his skin so that he doesn't get covered in excess plaster.  Once his cast is applied in the OR, his doctor rips this shirt off from beneath the cast and Jackson is usually 100% clean (another nice touch compared to Philly).


While we waited for Jackson in the operating room, we had a little fun with Oliver and a fez.
What can I say?


Soon, Jackson returned to his hospital room for a bit of time with the cast dryer.  We told him he looked like E.T. when he was in Elliot's bike basket ... not that he understood the reference.  Ha!


He did not shed a SINGLE tear this time during recovery.  All he requested was television and juice.  What a hero.



After about 30 minutes, it was time to visit our FAVORITE nurse "Stephanie" in the "cast room" so that Jackson could get moleskin applied to the raw edges of his cast.


And Mommy and Daddy applied his duck tape!


We then returned to his hospital room for his I.V. removal (not fun) and discharge instructions.



Always time to pose for a family photo.


Just look at the extreme correction of Mehta cast #8!  What you are seeing below is Dr. Stasikelis attempt to "overcorrect" Jackson's spine.  Since his spine is currently considered "straight" ... the next few casts are used to both maintain this correction and to "overcorrect" the spine.  Essentially, Dr. Stasikelis is trying to create a small curve in the opposite direction of Jackson's actual scoliosis in the cast in order to further promote maintenance of the straightening and to create a little "wiggle room."  


*   *   *

This is where I'm a little concerned.  I can dictate to you the current treatment plan for Jackson.  However, I cannot explain it ... and I'm doing a lot of soul searching.  Everything I have ever read about Mehta casting for Progressive Infantile Scoliosis states that any curve under 10 degrees is considered CURED and no longer needs casting.  So, I was always under the impression that NOW would be the time Jackson would be molded for a removable plastic brace.  However, Jackson's doctor is aiming for a ZERO degree measurement.  He applied this cast on 1/10/13 ... and plans another cast in 6-8 weeks WITHOUT x-rays ... then in an additional 6-8 weeks after that cast ... he plans to get x-rays before Jackson's 10th Mehta casting procedure.  If his spine measures ZERO, he will be molded for a brace AFTER wearing his 10th cast.  However, if his doctor cannot get an ABSOLUTE ZERO he will continue with more casts.

I feel a little disheartened about this.  Foremost, I absolutely trust Dr. Stasikelis ... so it is very difficult for me to question his judgement.  At the same time, I seriously thought we would be DONE with casting if Jackson's spine measured below 10 degrees ... and, I also know how incredibly difficult it is going to be to obtain an ABSOLUTE ZERO x-ray from a 2-year-old.

Soon, I fear we will be at a crossroads of whether to continue casting beyond #10 ... or to say "we would like a trial period in a brace" against Dr. Stasikelis' advice.  Jackson does incredibly well in his cast; however, at that time, he will have spent more of his little life IN a cast that OUT of a cast.  Sometimes, that saddens me a bit.

For now, all I can do is research and pray.  I foremost trust the Lord, and I pray that He will reveal to me the BEST decision for my son.

Please join with me in both PRAISE and PRAYER.

The End.

Friday, January 4, 2013

Oliver's First Word

Little Oliver has something he'd like to say.

That's right ... SAY!

video

Time to break out that baby book again!

Cast-Off Day #7

Well, this time it's the real deal ... another "Cast-Off" Day for Jackson Scott.

I'm telling you, I'm beginning to lose count ... but this was the removal of  Mehta cast #7, and next week we will travel to South Carolina for the application of Mehta cast #8.

As you can see from the photograph, Jackson had his first major meltdown during this cast removal.  We have been warned by many of the Shriner's nurses about this ... that often, as Progressive Infantile Scoliosis children grow older, they actually become more fearful of the process because they begin to understand what is going on and what it means for them.  That is so sad, and we are hoping that this was just a fluke during the removal and that Jackson will be his happy self again when we arrive at Shriner's Hospital for Children in South Carolina next week.

It should be mentioned that as we were walking into the Winchester Medical Center this morning, Jackson, realizing where we were, candidly asked:  "Brother do it?"  Already trying to pass the buck!


In minutes, cast #7 was off ... and the tears quickly stopped.

Jackson's skin looks really great this time.  The sore that was previously there had healed completely and there are no new areas of concern ... just A LOT of itchy, dry skin (look at those flakes) ... and one skinny boy!


Jackson's pre-op appointment for his next serial casting will be Wednesday, January 9th and his next casting procedure will be Thursday, January 10th.  Now, calling all my "prayer warriors" to pray specifically for:

1.  health for the entire family as we approach casting
2.  safe travels to SC
3.  an early casting procedure time slot
4.  safe anesthesia
5.  safe and effective application of cast #8
6.  that we are continuing to get excellent correction of Jackson's spinal curvature so that he can move into a plastic brace
7.  a good "fit" and great tolerance of cast #8 for Jackson

Thank you!

And, as always ... our progress:

Jackson at diagnosis (September 2010)

Prior to Mehta Cast #1  (September 2011)

Prior to Mehta Cast #2 (November 2011)

Prior to Mehta Cast #3 (January 2012)

Prior to Mehta Cast #4 (March 2012)

Prior to Mehta Cast #5 (June 2012)

Prior to Mehta Cast #6 (August 2012)

Prior to Mehta Cast #7 (October 2012)

Prior to Mehta Cast #8 (January 2013 ... today)

I am also including the photograph below from today.  Although Jackson is holding his shoulders crooked, you can see that beautiful straight(ening) spine!


Stay tuned for our casting adventures next week.

Wednesday, January 2, 2013

Oliver Is Eight Months Old!

Oliver is EIGHT MONTHS OLD!

20 pounds, 10 ounces (65%)
29.75 inches long (95%)
17.5 inch head circumference (30%)


At eight months, Oliver:

eats 6 oz of formula, 5 times a day "on demand"
enjoys "eating" baby food at each of our mealtimes ... as well as cereal with prunes before bed
still naps in his swing (30 mins in the early morning and 2 hours in the afternoon)
is beginning to sleep through the night completely again
has learned to arch his back and cry when being buckled into his carseat (like someone else I know)
hates getting dressed
has an odd obsession with hanging upside down
wears size 12-18 months clothes and size 3 Huggies diapers
takes his socks off and chews them until they are soaked whenever he has the chance
adores his "chewy banana" from Santa Claus
just celebrated his first Christmas and New Years
hugs your neck when you pick him up
loves to cuddle
drools so much that he MUST always wear a bib
had his first cold, ear infection, and antibiotics this month ... like a trooper
insists on rolling around the room (no lie ... this baby will roll 8-10 times consecutively to move completely across a room)
hasn't started crawling yet (see above ... haha)
mumbles, shreaks, and squeals
is growing out his Justin Bieber hair
puts EVERYTHING in his mouth and has to be CONSTANTLY supervised
has an affinity for electrical cords (yikes!)
is into EVERYTHING ... and is going to be Mommy's "trouble maker"
is a total "mover and shaker"
gets easily frightened by loud noises ... and cries
only cries over loud noises ... and is otherwise the most content, laid-back fella in the world
is generally referred to simply as "brother"

... and fits perfectly into our family!

Happy Eight Months, baby boy!


Look how LONG he is ...


***

When Mommy was getting ready for this blog post, Oliver was busy:

blowing bubbles

eating his fist

rolling around (naturally)

and around

and around

hiding his face

eating his rug

and grabbing my camera

... basically doing everything except looking at me ...
(why is it that my own children are the most difficult to photograph?)

ahh ... there it is!

I love you my silly monkey!