Showing posts with label growth. Show all posts
Showing posts with label growth. Show all posts

Tuesday, December 23, 2014

Wrapping Oddly Shaped Presents And Expanding Your Mind

Which present is mine?
photo credit: Randy Auschrat via photopin cc

You are on your own if you try to wrap a guinea pig!

What better way to exercise your brain and increase your own human potential than to learn some new origami this holiday season! I know how to make an origami frog, which comes in handy when trying to entertain your little kiddos, but this is really useful! Want to wrap that really odd shaped present?

Like, maybe you are that super cool parent that got their kid a model Millennium Falcon for Christmas! (yeah, we know you really bought it so you could play with it too!)

 Look what I found on! The Meredith Vieira Show  This is an awesome way to solve this problem!

Wednesday, December 3, 2014

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!

Pectus Excavatum
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.

Thursday, November 6, 2014

Expanding Your Brain With An Instrument

Guitar Sonata III
 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!