Speculating on Pectus Excavatum

"Its not just cosmetic..."

Well, the good news and the bad news- I'm sure you've noticed less and less of my posts lately, I've been a little distracted; researching and trying to help my 10yr old.

Apparently the motrin and now the steroids have not helped to bring my son's pain down. He's on his last day of his weeks worth of steroids and today he woke up at a pain scale of 7-8 this morning. I'm going to give him some motrin and hope it works enough for school. *sigh*

They are saying the pain is due to something called Costochondritis more due to the fact that they don't know what is causing his pain than anything else. It came on suddenly and without explanation.

What is Costochondritis?

Costochondritis is an inflammation of the cartilage joints in your chest. It is typically caused by a sudden increase in strenuous exercising, or 'over doing it'. You can also get it from bending, twisting, or lifting something sharply or in the wrong direction. Athletes have been known to get it from time to time.

However, with my son it is more than just the areas with cartilage that are hurting, and it started before any major PE stuff had started at school. His actual ribs hurt him all the way out to the sides.  Add in the constant pulling in of the rib cage due to what I can only assume is a growth spurt and you now have Pectus Excavatum that has turned from being just a cosmetic defect to something that now hurts worse than any pain he has ever had in his life.

To see this picture you can tell why!

Those aren't muscles or moobies- thats all rib cage!
Hint: its supposed to be flat.

This is the first time he has hurt this much this early in the morning- and yes the pain has been getting worse, even through all the restricted activity, motrin, icepacks, heating pads, and now a full week on steroids which were supposed to bring the inflammation down. We've been dealing with this pain since August of this year. He also doesn't have the stamina to participate in gym or sports like he did even just last year, instead he gets dizzy and feels like he has to gasp for breath. Frankly, the sudden and progressive severity of these symptoms, especially the pain, is what has me the most concerned. Thankfully we are scheduled for testing soon to get the pre op stuff set up.

What is Pectus Excavatum?

Pectus Excavatum is a disorder where the cartilage grows faster than it should and causes the rib cage to bow inward. Some of the more typical symptoms are shortness of breath and dizzyness upon exertion and chest pain. Others have difficulty swallowing, irregular heart beats, and even passing out in some cases. In most cases the heart is even pushed off into the left lung space or compressed by the sternum.

In order to figure out if you are a candidate to have Pectus Excavatum repaired you will need of a CT scan. From there they can determine the amount of space in your chest which they label the Haller index.  Anything over a 3.2 is considered severe enough to warrant surgery.

What kind of surgery?

The most common repair if you are symmetrical and anywhere from 8-14 yrs old (they prefer to get you before you stop growing) is the Nuss procedure. With this they make a small incision and slip a metal bar under your rib cage to push it out and brace it for 3-4 years. You will be in the hospital for almost a week (which seems to be the norm for any chest surgery).There is a lot of pain and a month long (or more in some cases) recovery time but the pain does go away. Some people continue to be a little tender in the area of the stabilizers on the side until the bar is removed.

 At the end of that 3-4 yr period they open that same small incision and slide the bar out, you get to go home the next day. You can find out more about the Nuss Procedure here where it was developed. 

If you are asymmetrical, or if you are older, than sometimes the Ravitch procedure is used. More on the Ravitch Procedure here.

 The surgery doesn't remove the root cause of the problem, which is the overgrowth of cartilage- it just sets the rib cage back out to encourage it to grow correctly again. Few doctors specialize in handling the effects of Pectus Excavatum and don't really know how to treat the symptoms or the root cause of the problem. Due to this, there have been rare cases where Pectus Excavatum has come back... even after surgery.

My child has Pectus Excavatum... now what?

First things first, ask for a CT scan if only to get a base number to keep an eye on as they get older.

Second, ask for a referral to a pediatric surgeon who specializes in chest wall repairs, specifically the Nuss and Ravitch procedures.

Take pictures for records

Preferably once a year in a dimly lit room- the shadows help show the depth of the issue. I've found the best pictures can be taken from the side angle when the child is laying flat on the floor. Angle the camera so that you can see the full side view of any flaring of the bottom of the rib cage, bring the camera up just enough so that you can see into the bottom of the indent. Allow shadow play to highlight the indent as you take your picture.

Bear in mind that while a picture may speak a thousand words the defect is often much worse under the surface. In my son's case, his skin stretches over and hides the deepest part of the defect.

Don't let them feel down about themselves

(Decide which approach will work best for your kid.)

*For us, we just didn't mention it very often and our son never really grew to think twice about it. In our case though he isn't around many other male children with his shirt off. We have him wear T-shirts to the beach because my kids burn easily, and any time he was in a pool it was only ever around family. In school they don't change in the locker rooms, and he is not in school sports yet that would require him to change at school. We have done recreational department baseball during the fall but all the kids wore their uniforms from home and never had to see each other shirtless.

*Your case could be completely different if your son has brothers or friends without Pectus Excavatum that may see him without his shirt on. To help alleviate the concerns over appearance I have noticed that some parents will help their child find a silver lining of sorts. Namely, using their indention as a snack holder or resting a cup in it for fun. The kids seem to enjoy this.



Now I know this is more of a personal post than the typical sci-fi related material that I normally post but it has come to my attention that Pectus Excavatum is not a very well known condition and I'd like to do my part to help.  I have yet to find an all inclusive website that compiles all the research and medical journals into one place but Google has been really helpful. There are also many groups on facebook that you can join where people are more than willing to share their stories and let you know what worked for them.

I'll be sure to keep you guys posted...
If you have any suggestions or questions I am all ears.

V.L. Jennings At Space Camp

Me- at spacecamp

I've been referencing my time at Kennedy Space Center Space Camp for the past two days on facebook that I figured it must be fate. Time to share a picture that rarely sees the light of day. Yours truly, V.L. Jennings at space camp- at the top of the shuttle simulator ladder.

I will always be so thankful to the people who run that place. I was 16 then and about two years outside of the camp age requirement. We were able to call the staff and get them to allow me to attend though. That was such an awesome vacation! I enjoyed it so much that there are numerous nods to KSC in Visionary From The Stars.

Besides the shuttle mission simulator we also had a chance to try various other simulators. We got to try moon walking, simulated climbing in "nearly zero gravity" (Its amazing what some counter weights can simulate!), and I also rode the G force simulator three times. The last time I almost got sick- I kid you not!

Another of my favorite moments was riding the bus beside the launch pad crawler and watching it crush the rocks beneath its HUGE plates as it rolled up the road.

I learned so much, took TONS of notes and I believe I took 5 rolls of film worth of pictures (yes, back before digital cameras were standard). Then that fannie pack you see in the picture... Well I had my last two days of film in there and my notes and left them all behind at a gas station on the way home. EPIC FACEPALM!

We went back to get it but someone had already wandered off with it. No money inside that I remembered... just undeveloped film and a mini notepad. (Really? Who steals film?)

I do still have a copy of the Camp KSC chant that one of the program leaders was said to have written. I love that song so much that I asked them for a copy of it before the camp ended- it STILL hangs in my kitchen (yeah, I am well aware that I am a nerd).

If I can get at least 10 comments on this blog post I will take a picture of it and post it here on my blog for you all to see- 20 comments and I will even sing it for you!

Have you ever been to Kennedy Space Center? What was your favorite part of your visit?

Traveling With An Alien

photo credit: EricMagnuson via photopin cc

“From this point on, Dan, it is imperative that you think of nothing but Mars,” Rivi said. Dan nodded in acknowledgment.

Rivi folded the ship into hyperspace and then, thinking about Mars, she brought the ship back out again.

~ The Alien Mind- Order yours today on Amazon! www.Amazon.com/author/vljennings

So... Yeah- I thought by now we would have more interesting forms of travel besides planes, cars, and trains...
Rivi (yes my main character) would either hyper space travel or walk everywhere if I let her -.-
But anyhow. Out of the three how do you prefer to travel?

The Mirror- Five Sentence Fiction

photo credit: Send me adrift. via photopin cc

Originally started by Lillie McFerrin, this week I have picked my own picture and word to challenge myself with.

The challenge word for this one is Mirror. Use the word and the picture as inspiration and write your own 5 sentence fiction. If you write it on your own blog I would LOVE to see it- or you could share it in the comments if you don't blog. I’d LOVE to see yours! Leave me the link to your 5 Sentence Fiction blog post in the comments!

She was tired of running, tired of trying to make him remember; she wanted to give up. Everyone else suggested that he was lost for good, but giving up would mean that their connection wasn't real, so instead she fought on. She stood in the darkness of her room and feeling his emotions pouring into hers from the abyss, the fear, the pain, the loneliness; even from this far away. Somehow she had to tear him away from the ones that tormented him, if only she could get close enough to him when they attacked tomorrow!

Earth's very future rested on her plan succeeding- she might not get another chance.


This picture and 5 sentence piece isn't exactly out of the second book to The Alien Mind, but these projects do help me explore the feelings I am trying to portray. The second book isn't anywhere near done yet- but you can check out The Alien Mind on amazon! It has recently been newly released by PDMI Publishing LLC. and is doing really well on the amazon charts!

Does this picture inspire you? Feel free to write your own 5 sentence story about it and either leave it in the comments here or leave me a link to where you posted yours on your blog! I'd love to check it out!

Find The Alien Mind on Amazon!

Did you like this post? If so you might enjoy my book!

For adults and teens alike, it is truly a science fiction adventure for the whole family!

If you'd prefer an autographed copy straight from the author you can buy one here as well!
Autographed Copy:$13.00 + Shipping

 

Heights- 5 Sentence Fiction.

photo credit: kevin dooley via photopin cc

 Originally started by Lillie McFerrin, this week I have picked my own picture and word to challenge myself with.

The challenge word for this one is Heights. Use the word and the picture as inspiration and write your own 5 sentence fiction. If you write it on your own blog I would LOVE to see it- or you could share it in the comments if you don't blog. I’d LOVE to see yours! Leave me the link to your 5 Sentence Fiction blog post in the comments!







The wind rushed past her, vibrating the strap from her toolbag across her chest, giving her the shivers and causing her to cling to the metal support beams that much tighter. I wouldn't be so cold if I hadn't been forced to leave my space suit at the midway point.
But that couldn't be helped, the suit would be too heavy for her to climb in this far down the transfer ladder.
Foolproof, they called it, would never break down they said!
Yet here she was clinging to the support beams of a transfer ladder, water droplets dripping down her arms and back, halfway between the space station and the ground; all because this seemingly foolproof transfer system had broken down.


***So what do you think? Are you afraid of heights? Could you stomach a climb down from a space station?***

Expanding Your Brain With An Instrument

 photo credit: tamahaji via photopin cc

My post the other day was about the Mind vs. your Genes. Today I ran across a video that has shocked me and really made me reevaluate how I look at music!

 

I've always loved music. I taught myself how to read music and play the piano as a teen. I need to practice playing with two hands more, but I can play with my right-hand alright. My eldest, as you learned in my previous post, has a chromosomal deletion disorder called Di George syndrome. Due to this disorder the areas of visual, audio, and motor functions; short term and working memory;  Visual and auditory attention, are all functioning below where they should be. This is the way it is for MANY children affected with Di George syndrome!

However, if you exercise and stretch a weak muscle it gets stronger right? Low and behold, according to this video- the exact same areas that she is weakest in is the EXACT same areas -playing- a musical instrument works with! Take a look at the 'file system' in the video. She has that issue too! Many times she has learned something but just can't seem to find it in her head again. This is due to processing and recall issues.

Ok- so she's not going to be able to keep up with the faster music. She does ok with slower pieces but the time needed for her to read the note, process the information, and get it back down to her fingers (she plays the flute) is way to long for her to play faster pieces like marches.

Some tips we've been working with:

*Write the letter of all the notes above the actual notes- highlight key areas if you have to- this helps cut down on some of the processing time.

*Her math teacher suggested highlighting only certain notes within a song for her to concentrate on. The rest of the band will play the whole song but she only plays with them when her notes come up. This way she can still play but it lengthens the time between notes to give her a moment to process. (I am SO thankful for the teacher's suggestion on that one!)

*I've found it easier to cut out the "one and two and one and two" stuff- she doesn't get that. Instead, I clap out the beat and point to her on key notes when we are practicing.

This whole realization has been really encouraging to me- and I hope it is to you as well!

So- check the video out. If you have any instrument playing tips put them in the comments for us! And remember- Never stop exploring human potential, always reach for the stars!

Help Mouse Trap Crash The Super Bowl!

Video posted in an Iframe below ;)

Copyright Doritos

My hubby loves working with film shots. He found this contest online to create a Doritos commercial and the most voted will be aired during the superbowl. When he decided to film something to enter, who should he draft for his actors? Why me and our three yr old of course lolol. 

Come check it out - we are hoping it makes you laugh ;)

If you could... please vote and share everywhere you can! We appreciate all the help we can get!

Tonight's Meteor Shower Party!

RELEASE DAY! 

Click the picture to head to Amazon!

Well- actually it was released yesterday but I found out about it too late. Anyhow, you can now get your copy on Amazon at your earliest convenience!  This book also features illustrations by PDMI Publishing LLC's illustrator Matt Ostrum!

The release date was chosen for this week because November 5- 6 is the annual peak of the Taurids Meteor Shower. It is said to average about 5-10 meteors per hour. While you can catch a glimpse of this shower anytime from September to December the peak is the best time to see the most meteors.

Unfortunately, the moon will be full this week so you may have trouble seeing many of the smaller ones. The best viewing time will be just after midnight.


If you check out Myrtle Beach's WBTW's news website you can see that many people have reported seeing some pretty big meteors shooting across the sky from this shower!


*Who wants to sit outside with me tonight? I know you might not be able to make the trip to my own back yard but let me know in the comments if you will be watching, and then come back later and tell me how long you stayed out, and many you saw tonight! I'll do the same!*

Mind Vs. Genes

Otherwise known as Di George syndrome

I am a believer that we were all amazingly designed by God and have the potential to do big things. Sometimes the body's design ends up different than it should and that's ok. These people are still special and full of untapped potential if they put their minds to it AND if they have people around them willing to go the distance and help them figure out ways to work around their disorder.

Please consider sharing this ribbon to support DiGeorge Syndrome.

I have a child with this disorder and it affects many aspects of her personality and health. She has a bleeding disorder, a heart defect, and immune system issues. She was diagnosed with it early in regards to her health issues, but we didn't realize how vastly it affects her day to day life until school issues became overwhelming and we took her to a psychologist.  Many aspects of her personality had been 'brushed under the rug' until now. We were told by the school that she just wasn't paying attention, that she wasn't trying hard enough, that she didn't care, that she JUST needed to study/practice more. Many people were under the impression that she was just being difficult. Things use to be very confusing and frustrating until we realized that it all boils down to her DiGeorge syndrome. Thanks to the psychologist who actually took the time to research this disorder, we now know whats really going on.

She's not being difficult- its the way her mind and skills have developed due to the affects of the Di George syndrome. Now people are starting to realize that she can't just learn her way out of this. She has to be taught how to cope with and work around the underlying problem before she can... diagram a sentence or solve a math problem, for example. All the practice sheets, and all the 'reteaching' in the world can't help you if you are having problems processing what you are being asked to do in the first place. Tie in short term memory issues, sensory issues, attention issues, (among other things) and it is no wonder she's had so many problems in school.

I would like to point this out something else out though. Even though she has these issues she STILL has the potential to do big things; IF we can help her figure out how to work around the root of the problem first. She loves music. She may not be able to handle the faster pieces because of her processing deficiencies, but she can still play the flute and even keep up during the slower pieces. She's really responsible about keeping things tidy and she is really well behaved.

She even wants to be a teacher when she gets older!

 Her bleeding disorder has taken her to dangerously low levels, and still she kept trucking on till we dragged her in to be treated. Without a blood test, you would have never known because she learned to cope with it and work around it so well. She even has a high pain tolerance. When she was 11 she had her second open heart surgery, two days afterward she was up and walking, trying to ignore the fact that she had just had major surgery! The child who was once labeled as 'failure to thrive' and given a shortened life expectancy has now reached her teens!

Never give up! Always keep exploring and never stop reaching for the stars!

Parents of children with this disorder have to be constant advocates. Their children may look as though there is very little different about them, but the disorder can affect everything. For a breakdown of this disorder, visit 22q112-deletion-syndrome page on the Genetics Home Reference website.


If you or a loved one has this disorder I would love to connect with you.

Do you have an 'overcoming the odds' story about you or someone you know that you'd like to share? Tell us about it here or message me if you'd like to feature your story on my blog!

When Squirrels Go Nuts

Caption This - A Game!

photo credit: Jim Bauer via photopin cc

Today on my blog- JUST for the fun of it, I am going to try a caption this game! You are all welcome to join in the fun!

Rules: Keep it clean please.

1. Post your caption in the comments on this post.

2. Remember to click the Squirrels Go Nuts entry in the rafflecopter 

While you are pondering your caption entry, I have an excerpt from Visionary From The Stars to share with you! In this one, the main characters find themselves in a very serious, and yet slightly funny situation. Enjoy! (and DON'T forget to post your caption in the comments!)

Later, in the afternoon, the team passed over one of the many grassy hills and could see, further ahead, the edge of what appeared to be marshlands. It was quiet--too quiet-- almost as if something were waiting for them there; expecting them as they approached. As the group slowly began to follow the edge of the marshlands, Laurie started to feel quite uneasy. Young Chris Hagan looked over his shoulder and into the marshland trees repeatedly, soon finding himself becoming increasingly worried about…well he didn’t quite know.

 As if out of nowhere, a downpour of stones and arrows came launching out of the trees and rained down upon the unprotected EOE team. The group barely had time to cover their heads with their arms when a large band of squirrels jumped out of the trees yelling war cries, and surrounded the team. Realizing that the group had no weapons ready, the squirrels took the team hostage. 

As the squirrels herded the EOE Team into the marshlands, a rather burly squirrel handcuffed and chained the team together. Mr. Kingston looked around for his daughter and Chris— they were nowhere to be seen. 

“Captain Mitchell, the children aren't here!” He whispered urgently. “Do you think they escaped?” 

“They could get lost out oomf!” Mr. Kingston managed before being butted in the ribs with a stick by a fierce looking squirrel.

Available for pre-order on Amazon! - RELEASES WEDNESDAY!  

About The Book: 

For millenia, humans thought they were the only life in the galaxy-- until the day an alien species claiming to have humanity's best interests in mind forces its way onto an unsuspecting exploration craft. In another part of space, the Star Traveler's crew sets out on a camping trip to the surface of the moon. There, they stumble upon an object covered in alien writing revealing the first piece of a galactic map that will lead them into an intergalactic controversy--all while the Platonian race strives to sabotage their every move.

What Critics are calling:

“An excellent job & impressive cast...”~ Pamela Valerio

“Agreat story for young readers...”~ Author Bruce Goldwell

“Cleverly entertaining!” ~ Author Geri Ahearn

Whats Its Like To Be A PDMI Author, (With Pictures)

I just realized that some of the pictures got broken somehow... until I fix them, you can find them here: https://www.flickr.com/photos/virginialorijennings/sets/72157649031383555/

This past weekend was awesome! I am proud to be an author with the epic PDMI Publishing LLC!

Cyndi, Tc, Nessa, Jack

I met the owners, Tc and Nessa Mckinney, in person (finally!) this past weekend. (center two in photo) They had traveled from Alabama to attend the Second Annual "Novel" Wine Tasting Arts and Literary Festival. Our Marketing Director and fellow author Greta King had also traveled up here for the festival.

Cyndi Jack, Me, Tc, Greta (Nessa's behind camera)

They try their hardest to make all of their authors feel like family! Friday evening Greta treated us to bowling and pizza. (BEST Pizza ever!!) Later we sat out on the porch in our PJ's and laughed and joked till the wee hours of the morning.

Me Bowling

 Saturday we got down to business and sold some books at the festival! We tag teamed taking  pictures when someone would come up to one of our tables. We even helped sell eachother's books.

 

Me-before changing into my costume, setting up my tables

Me with Miss South Carolina- MAN she is tall!

PS- Check it out! Rivi's Costume is DONE!!! I'll be taking my kids trick or treat in it as well as wearing it to sci fi conventions! ;)

Jack and Cyndi

Besides my books, I had brought some brain teaser games for my table that many people really enjoyed. A few stopped by for almost an hour- one girl ALMOST beat the hardest puzzle! Later her mom came over to try the puzzle and even bought a copy of Wiggle Worm's Shape Adventures ;)

This is me, visiting C.D. Bonner's booth
before he packed his stuff for the day

As the sun went down we helped eachother pack up our stuff and take down the tents. 


Then we went over to join all the other authors at the after party. I won't give you a blow by blow because "What happens at the after party STAYS at the after party." But, no one said anything about not sharing the evidence!

I havn't the foggiest what I was laughing at here

Had to catch a picture with my good friend C.D. Bonner
Before today I had only ever talked with him online
 and in Where Writers And Authors Meet lol

Jack- doing one of his impressions lol

This event is scheduled to be part of the book tour for the release of Visionary From The Stars and The Alien Mind