Friday, December 7, 2012

♥ The Twelve Days of Christmas ♥
 
On the first day of Christmas, the good Lord gave to me: a child with a disability.

On the second day of Christmas, the good Lord gave to me: a heart full of love for my child with a disability.
 
On the third day of Christmas, the good Lord gave to me: an ache in my heart and a heart full of love for my child with a disability.

On the fourth day of Christmas, the good Lord gave to me: a tear in my eyes, an ache in my heart and a heart full of love for my child with a disability.

On the fifth day of Christmas, the good Lord gave to me: an unsuspected strength for the tear in my eyes and the ache in my heart and my heart full of love for my child with a disability.

On the sixth day of Christmas, the good Lord gave to me: a ray of hope, an unsuspected strength for the tear in my eyes and the ache in my heart and my heart full of love for my child with a disability.

On the seventh day of Christmas, the good Lord gave to me: a sense of humor, a ray of hope, an unsuspected strength for the tear in my eyes and the ache in my heart and my heart full of love for my child with a disability.
 
On the eighth day of Christmas, the good Lord gave to me: supportive friends, a sense of humor, a ray of hope, an unsuspected strength for the tear in my eyes and the ache in my heart and my heart full of love for my child with a disability.
 
On the ninth day of Christmas, the good Lord gave to me: remarkable doctors & therapists, supportive friends, a sense of humor, a ray of hope, an unsuspected strength for the tear in my eyes and the ache in heart and my heart full of love for my child with a disability.
On the tenth day of Christmas, the good Lord gave to me: an appreciation of small accomplishments, remarkable doctors & therapists, supportive friends, a sense of humor, a ray of hope, an unsuspected strength for the tear in my eyes and the ache in my heart and my heart full of love for my child with a disability.
 
On the eleventh day of Christmas, the good Lord gave to me: a sense of pride, an appreciation of small accomplishments, remarkable doctors & therapists, supportive friends, a sense of humor, a ray of hope, an unsuspected strength for the tear in my eyes and the ache in my heart and my heart full of love for my child with a disability.

On the twelfth day of Christmas, the good Lord said to me: Reach out and share your sense of pride, your appreciation of small accomplishments, your remarkable doctors & therapists, your supportive friends, your sense of humor, your ray of hope, your unsuspected strength for the tear in your eyes and the ache in your heart and your heart full of love for your child with a disability

Tuesday, October 30, 2012

What Does Spina Bifida Look Like? SBA Day 30

It is OCTOBER!!!!

You know what that means, right???

SPINA BIFIDA AWARENESS MONTH is HERE!!!!

This year words are too much for me.
Plus they say pictures are worth a 1000 words, right?

So THIS is what Spina Bifida looks like:

All the way from the UK!
Destiny Angel
Age 10 months

And today's Double Dose is.....

Kayla
Age 25 Years Old

*Would you like to participate in my Spina Bifida Awareness posts?? Just email me some pictures of yourself (or your child), you name and age and I will do the rest! Send all information to simplysoares@att.net !*

Monday, October 29, 2012

What Does Spina Bifida Look Like? SBA Day 29

It is OCTOBER!!!!

You know what that means, right???

SPINA BIFIDA AWARENESS MONTH is HERE!!!!

This year words are too much for me.
Plus they say pictures are worth a 1000 words, right?

So THIS is what Spina Bifida looks like:


Kaylin
Age 3 (almost 4!)

And for today's Double Dose:

Tucker
Age 4

*Would you like to participate in my Spina Bifida Awareness posts?? Just email me some pictures of yourself (or your child), you name and age and I will do the rest! Send all information to simplysoares@att.net !*

Sunday, October 28, 2012

Need Age What Does Spina Bifida Look Like? Day 28

It is OCTOBER!!!!

You know what that means, right???

SPINA BIFIDA AWARENESS MONTH is HERE!!!!

This year words are too much for me.
Plus they say pictures are worth a 1000 words, right?

So THIS is what Spina Bifida looks like:


Charlie
Age 16

And today we get another DOUBLE DOSE of friendly faces!


Taylor
18 months!

And today is Taylor's super mommy's birthday, so let's all take a second and wish Stephanie a big ole happy birthday!


*Would you like to participate in my Spina Bifida Awareness posts?? Just email me some pictures of yourself (or your child), you name and age and I will do the rest! Send all information to simplysoares@att.net !*

Saturday, October 27, 2012

What Does Spina Bifida Look Like? SBA Day 27

It is OCTOBER!!!!

You know what that means, right???

SPINA BIFIDA AWARENESS MONTH is HERE!!!!

This year words are too much for me.
Plus they say pictures are worth a 1000 words, right?

So THIS is what Spina Bifida looks like:


Jaxson Rose
Age: 3.5 months

And for Today's Double Dose
Amanda
Age 22


*Would you like to participate in my Spina Bifida Awareness posts?? Just email me some pictures of yourself (or your child), you name and age and I will do the rest! Send all information to simplysoares@att.net !*

Friday, October 26, 2012

What Does Spina Bifida Look Like? SBA Day 26

It is OCTOBER!!!!

You know what that means, right???

SPINA BIFIDA AWARENESS MONTH is HERE!!!!

This year words are too much for me.
Plus they say pictures are worth a 1000 words, right?

So THIS is what Spina Bifida looks like:


Chloe

I strive to be REAL here on my blog. And while there are MANY people who have Spina Bifida and have a great lives, sometimes the journey is harder and the road not what we hoped for. Dear Chloe had a HARD road, and she has grown her wings to join in th heavenly chiors, but she touch SO MANY lives with her short life. Her family and their journey will always be near and dear to my heart. Even in the short time Chloe was with us, she taught lessons to people across the globe. Chloe's life, while short, was NOT wasted! And I KNOW that she is dancing in the streets of heaven with her Heavenly Father right now!

*Would you like to participate in my Spina Bifida Awareness posts?? Just email me some pictures of yourself (or your child), you name and age and I will do the rest! Send all information to simplysoares@att.net !*

Thursday, October 25, 2012

What Does Spina Bifida Look Like? SBA Day 25

It is OCTOBER!!!!

You know what that means, right???

SPINA BIFIDA AWARENESS MONTH is HERE!!!!

This year words are too much for me.
Plus they say pictures are worth a 1000 words, right?

So THIS is what Spina Bifida looks like:


Annabeth
Age 10 months

And today we get a DOUBLE DOSE of Spina Bifida Again!
Please Meet:

Kevin
Age 40


*Would you like to participate in my Spina Bifida Awareness posts?? Just email me some pictures of yourself (or your child), you name and age and I will do the rest! Send all information to simplysoares@att.net !*

Wednesday, October 24, 2012

What Does Spina Bifida Look Like?? SBA Day 24

It is OCTOBER!!!!

You know what that means, right???

SPINA BIFIDA AWARENESS MONTH is HERE!!!!

This year words are too much for me.
Plus they say pictures are worth a 1000 words, right?

So THIS is what Spina Bifida looks like:


Michelle
Age 41

And today we get a DOUBLE DOSE of Spina Bifida! Please Meet:
Laura
Age 2


*Would you like to participate in my Spina Bifida Awareness posts?? Just email me some pictures of yourself (or your child), you name and age and I will do the rest! Send all information to simplysoares@att.net !*

Tuesday, October 23, 2012

4th Grader's Invention

My daughter, who is in 4th Grade, was given an assignment to make an invention. And the teacher is really big on it being an ORIGINAL invention. I thought this assignment was pretty tough for a 4th grader, but what do I know!

So Audrey looked around the house for a problem that she could solve with her invention. I had to laugh when she told me what she had decided to invent. She said that the biggest problem in our house is messy catheters.... and she is probably pretty right!

It is NOT always this messy, we sort of let them pile up to make a point for the project.

So, my darling daughter, decided to make The Clean Catheter Station for her invention! I am proud of her for trying to help her brother keep his caths cleaned up instead of just always complaining that he messes up their bathroom!

This is what she came up with:


Instructions For Use:
Preparation For Use:
1)                 Put 5 squirts of soap or sanitizer in The Clean Catheter Station
2)                 Fill with water to the “Fill Line”
3)                 Place lid on tightly on The Clean Catheter Station
4)                 The Clean Catheter Station is now ready for use
Use:
5)                 After using a catheter, open the pop top lid and insert catheter into The Clean Catheter Station
6)                 Snap the pop top lid shut completely
To Clean Catheters:
7)                 Make sure lids are on securely
8)                 Holding your hand over the lid, shake The Clean Catheter Station for 30 second
9)                 Remove larger lid
10)            Pour catheters into drain station or the sink and rinse completely with hot water
11)            Place catheters on a towel to dry
12)            Rinse out The Clean Catheter Station with hot water.
13)            Use over again by returning to step one, as see above.

Catheter Chaos to CLEAN in one easy step with
The Clean Catheter Station!


My silly, cute and inventive 4th Grader strikes again!


What Does Spina Bifida Look Like? SBA Day 23

It is OCTOBER!!!!

You know what that means, right???

SPINA BIFIDA AWARENESS MONTH is HERE!!!!

This year words are too much for me.
Plus they say pictures are worth a 1000 words, right?

So THIS is what Spina Bifida looks like:


Jackson
Age 16 months

And today we get a DOUBLE DOSE of cuteness:


Charlotte
Age 2.5 years
Fellow Fetal Surgery Baby!
*Would you like to participate in my Spina Bifida Awareness posts?? Just email me some pictures of yourself (or your child), you name and age and I will do the rest! Send all information to simplysoares@att.net !*

Monday, October 22, 2012

What Does Spina Bifida Look Like? SBA Day 22

It is OCTOBER!!!!

You know what that means, right???

SPINA BIFIDA AWARENESS MONTH is HERE!!!!

This year words are too much for me.
Plus they say pictures are worth a 1000 words, right?

So THIS is what Spina Bifida looks like:


Amanda
AKA "Ms. Adventure!"
Age 38

And because Amanda gave me so many great quotes to choose from I made her a special treat too:



*Would you like to participate in my Spina Bifida Awareness posts?? Just email me some pictures of yourself (or your child), you name and age and I will do the rest! Send all information to simplysoares@att.net !*

Sunday, October 21, 2012

What Does Spina Bifida Look Like? SBA Day 21

It is OCTOBER!!!!

You know what that means, right???

SPINA BIFIDA AWARENESS MONTH is HERE!!!!

This year words are too much for me.
Plus they say pictures are worth a 1000 words, right?

So THIS is what Spina Bifida looks like:


Elizabeth
Age 33


*Would you like to participate in my Spina Bifida Awareness posts?? Just email me some pictures of yourself (or your child), you name and age and I will do the rest! Send all information to simplysoares@att.net !*

Saturday, October 20, 2012

What Does Spina Bifida Look Like? SBA Day 20

It is OCTOBER!!!!

You know what that means, right???

SPINA BIFIDA AWARENESS MONTH is HERE!!!!

This year words are too much for me.
Plus they say pictures are worth a 1000 words, right?

So THIS is what Spina Bifida looks like:


Another of our LOCAL friends, Evan!
Age 25
*Would you like to participate in my Spina Bifida Awareness posts?? Just email me some pictures of yourself (or your child), you name and age and I will do the rest! Send all information to simplysoares@att.net !*

Friday, October 19, 2012

What Does Spina Bifida Look Like? SBA Day 19

It is OCTOBER!!!!

You know what that means, right???

SPINA BIFIDA AWARENESS MONTH is HERE!!!!

This year words are too much for me.
Plus they say pictures are worth a 1000 words, right?

So THIS is what Spina Bifida looks like:


Easton
Age 21 Months

*Would you like to participate in my Spina Bifida Awareness posts?? Just email me some pictures of yourself (or your child), you name and age and I will do the rest! Send all information to simplysoares@att.net !*

Thursday, October 18, 2012

What Does Spina Bifida Look Like? SBA Day 18

It is OCTOBER!!!!

You know what that means, right???

SPINA BIFIDA AWARENESS MONTH is HERE!!!!

This year words are too much for me.
Plus they say pictures are worth a 1000 words, right?

So THIS is what Spina Bifida looks like:


This is our LOCAL friend, Jessie!
Age 9

Jessie would also like to share with you a link to a new Special Abilities Dance and Music Program here in our County! If you are interested, please check it out HERE!

*Would you like to participate in my Spina Bifida Awareness posts?? Just email me some pictures of yourself (or your child), you name and age and I will do the rest! Send all information to simplysoares@att.net !*

Wednesday, October 17, 2012

What Does Spina Bifida Look Like? SBA Day 17

It is OCTOBER!!!!

You know what that means, right???

SPINA BIFIDA AWARENESS MONTH is HERE!!!!

This year words are too much for me.
Plus they say pictures are worth a 1000 words, right?

So THIS is what Spina Bifida looks like:


Logan
Age 3 TODAY!!!!

Happy Birthday Sweet Logan!!!

*Would you like to participate in my Spina Bifida Awareness posts?? Just email me some pictures of yourself (or your child), you name and age and I will do the rest! Send all information to simplysoares@att.net !*

Tuesday, October 16, 2012

What Does Spina Bifida Look Like? SBA Day 16

It is OCTOBER!!!!

You know what that means, right???

SPINA BIFIDA AWARENESS MONTH is HERE!!!!

This year words are too much for me.
Plus they say pictures are worth a 1000 words, right?

So THIS is what Spina Bifida looks like:


Ciarlo
Age 2 Years Old

*Ciarlo is actually having surgery today to get some ear tubes in, so if you are a praying friend, please say a little prayer for this sweet little boy today!*

*Would you like to participate in my Spina Bifida Awareness posts?? Just email me some pictures of yourself (or your child), you name and age and I will do the rest! Send all information to simplysoares@att.net !*

Monday, October 15, 2012

What Does Spina Bifida Look Like?? SBA Day 15

It is OCTOBER!!!!

You know what that means, right???

SPINA BIFIDA AWARENESS MONTH is HERE!!!!

This year words are too much for me.
Plus they say pictures are worth a 1000 words, right?

So THIS is what Spina Bifida looks like:


Abi
Age 3 Years Old

*Would you like to participate in my Spina Bifida Awareness posts?? Just email me some pictures of yourself (or your child), you name and age and I will do the rest! Send all information to simplysoares@att.net !*

Sunday, October 14, 2012

What Does Spina Bifida Look Like? SBA Day 14

It is OCTOBER!!!!

You know what that means, right???

SPINA BIFIDA AWARENESS MONTH is HERE!!!!

This year words are too much for me.
Plus they say pictures are worth a 1000 words, right?

So THIS is what Spina Bifida looks like:


Tanner
Age 3 years old


*Would you like to participate in my Spina Bifida Awareness posts?? Just email me some pictures of yourself (or your child), you name and age and I will do the rest! Send all information to simplysoares@att.net !*

Saturday, October 13, 2012

What Does Spina Bifida Look Like? SBA Day 13

It is OCTOBER!!!!

You know what that means, right???

SPINA BIFIDA AWARENESS MONTH is HERE!!!!

This year words are too much for me.
Plus they say pictures are worth a 1000 words, right?

So THIS is what Spina Bifida looks like:


Magan
Age 39

*Would you like to participate in my Spina Bifida Awareness posts?? Just email me some pictures of yourself (or your child), you name and age and I will do the rest! Send all information to simplysoares@att.net !*

Friday, October 12, 2012

What Does Spina Bifida Look Like? SBA Day 12

It is OCTOBER!!!!

You know what that means, right???

SPINA BIFIDA AWARENESS MONTH is HERE!!!!

This year words are too much for me.
Plus they say pictures are worth a 1000 words, right?

So THIS is what Spina Bifida looks like:

Levi
Age: 9 Months

*Would you like to participate in my Spina Bifida Awareness posts?? Just email me some pictures of yourself (or your child), you name and age and I will do the rest! Send all information to simplysoares@att.net !*

Thursday, October 11, 2012

What Does Spina Bifida Look Like? SBA Day 11

It is OCTOBER!!!!

You know what that means, right???

SPINA BIFIDA AWARENESS MONTH is HERE!!!!

This year words are too much for me.
Plus they say pictures are worth a 1000 words, right?

So THIS is what Spina Bifida looks like:


Madi
Age: 3 years old


*Would you like to participate in my Spina Bifida Awareness posts?? Just email me some pictures of yourself (or your child), you name and age and I will do the rest! Send all information to simplysoares@att.net !*

Wednesday, October 10, 2012

What Does Spina Bifida Look Like? SBA Day 10

It is OCTOBER!!!!

You know what that means, right???

SPINA BIFIDA AWARENESS MONTH is HERE!!!!

This year words are too much for me.
Plus they say pictures are worth a 1000 words, right?

So THIS is what Spina Bifida looks like:


Liv
Age: 8 Months


*Would you like to participate in my Spina Bifida Awareness posts?? Just email me some pictures of yourself (or your child), you name and age and I will do the rest! Send all information to simplysoares@att.net !*

Tuesday, October 9, 2012

What Does Spina Bifida Look Like? SBA Day 9

It is OCTOBER!!!!

You know what that means, right???

SPINA BIFIDA AWARENESS MONTH is HERE!!!!

This year words are too much for me.
Plus they say pictures are worth a 1000 words, right?

So THIS is what Spina Bifida looks like:


Kate
Age: 9 years old


*Would you like to participate in my Spina Bifida Awareness posts?? Just email me some pictures of yourself (or your child), you name and age and I will do the rest! Send all information to simplysoares@att.net !*

Monday, October 8, 2012

What Does Spina Bifida Look Like? SBA Day 8

It is OCTOBER!!!!

You know what that means, right???

SPINA BIFIDA AWARENESS MONTH is HERE!!!!

This year words are too much for me.
Plus they say pictures are worth a 1000 words, right?

So THIS is what Spina Bifida looks like:


Laurita Tellado Calderón
Age: 25


*Would you like to participate in my Spina Bifida Awareness posts?? Just email me some pictures of yourself (or your child), you name and age and I will do the rest! Send all information to simplysoares@att.net !*

Sunday, October 7, 2012

What Does Spina Bifida Look Like? SBA Day 7

It is OCTOBER!!!!

You know what that means, right???

SPINA BIFIDA AWARENESS MONTH is HERE!!!!

This year words are too much for me.
Plus they say pictures are worth a 1000 words, right?

So THIS is what Spina Bifida looks like:


Francis Roberson & Friends


*Would you like to participate in my Spina Bifida Awareness posts?? Just email me some pictures of yourself (or your child), you name and age and I will do the rest! Send all information to simplysoares@att.net !*

Saturday, October 6, 2012

What Does Spina Bifida Look Like? SBA Day 6

It is OCTOBER!!!!

You know what that means, right???

SPINA BIFIDA AWARENESS MONTH is HERE!!!!

This year words are too much for me.
Plus they say pictures are worth a 1000 words, right?

So THIS is what Spina Bifida looks like:


Brian
Age 4 years old


*Would you like to participate in my Spina Bifida Awareness posts?? Just email me some pictures of yourself (or your child), you name and age and I will do the rest! Send all information to simplysoares@att.net !*

Friday, October 5, 2012

What Does Spina Bifida Look Like? SBA Day 5

It is OCTOBER!!!!

You know what that means, right???

SPINA BIFIDA AWARENESS MONTH is HERE!!!!

This year words are too much for me.
Plus they say pictures are worth a 1000 words, right?

So THIS is what Spina Bifida looks like:
Chase
11 ½ months

*Would you like to participate in my Spina Bifida Awareness posts?? Just email me some pictures of yourself (or your child), you name and age and I will do the rest! Send all information to simplysoares@att.net !*


Thursday, October 4, 2012

What Does Spina Bifida Look Like? SBA Day 4

It is OCTOBER!!!!

You know what that means, right???

SPINA BIFIDA AWARENESS MONTH is HERE!!!!

This year words are too much for me.
Plus they say pictures are worth a 1000 words, right?

So THIS is what Spina Bifida looks like:


Kumaka
Age 5

To find out more about Kumaka and his amazing family visit them HERE

*Would you like to participate in my Spina Bifida Awareness posts?? Just email me some pictures of yourself (or your child), you name and age and I will do the rest! Send all information to simplysoares@att.net !*

Tuesday, October 2, 2012

What Does Spina Bifida Look Like? SBA Day 2

It is OCTOBER!!!!

You know what that means, right???

SPINA BIFIDA AWARENESS MONTH is HERE!!!!

This year words are too much for me.
Plus they say pictures are worth a 1000 words, right?

So THIS is what Spina Bifida looks like:


Nathaniel
12 years old

Monday, October 1, 2012

Spina Bifida: What Is It?


Are you aware of the fact that October is Spina Bifida Awareness month???

 I know that there are a GREAT MANY of questions out there as to what Spina Bifida IS, and how it manifests. The one thing that frustrates me to NO END is that there is no constant in Spina Bifida, it is different in EVERY person with it, but there are some basics. Tiffany did an AWESOME job of gathering those basics and writing the following article, which I would like to share with you today, in hopes that it will help you, my dear friends and family, better understand what exactly Spina Bifida is! It is a fairly long read, but I hope you will take the time (5 minutes or so) to read it and gain some knowledge, because I FIRMLY believe that knowledge is power!

Spina Bifida is a birth defect that affects the lower back and, sometimes, the spinal cord. It is one of the most common birth defects in the United States, affecting about 1,500 babies each year (1).

Spina bifida is the most common of a group of birth defects called neural tube defects (NTDs). The neural tube is the embryonic structure that develops into the brain and spinal cord. The neural tube normally folds inward and closes by the 28th day after conception. When it fails to close completely, defects of the spinal cord and vertebrae (small bones of the spine) can result.

How does spina bifida affect a child?

There are three forms of spina bifida:

1.Occulta: In this mildest form, there are usually no symptoms. Affected individuals have a small defect or gap in one or more of the vertebrae of the spine. A few have a dimple, hairy patch, dark spot or swelling over the affected area. The spinal cord and nerves usually are normal, and most affected individuals need no treatment.

2.Meningocele: In this rarest form, a cyst or fluid-filled sac pokes through the open part of the spine. The sac contains the membranes that protect the spinal cord, but not the spinal nerves. The cyst is removed by surgery, usually allowing for normal development.

3.Myelomeningocele: In this most severe form, the cyst holds both the membranes and nerve roots of the spinal cord and, often, the cord itself. Or there may be a fully exposed section of the spinal cord and nerves without a cyst. Affected babies are at high risk of infection until the back is closed surgically, although antibiotic treatment may offer temporary protection. In spite of surgery, affected babies have some degree of leg paralysis and bladder- and bowel-control problems. In general, the higher the cyst on the back, the more severe the paralysis.

What causes Spina Bifida?

The causes of spina bifida are not completely understood. Scientists believe that both genetic and environmental factors act together to cause this and other NTDs. However, 95 percent of babies with spina bifida and other NTDs are born to parents with no family history of these disorders.

Who is at risk of having a baby with Spina Bifida?

Anyone can have a baby with spina bifida. However, couples who have already had a baby with spina bifida or another NTD have an increased risk of having another affected baby. A couple with one child with spina bifida usually has about a 4 percent chance of having another affected baby, and a couple with two affected children has about a 10 percent chance of having another affected baby. Similarly, when one parent has spina bifida, there is about a 4 percent chance of passing the disorder on to the baby. Couples who have had an affected baby or have a family history of NTDs should consult a genetic counselor to discuss risks to their future children.

In most cases, spina bifida occurs by itself. However, sometimes spina bifida occurs as part of a syndrome with other birth defects. In these cases, recurrence risks in another pregnancy may vary widely.

Women with certain health conditions are at increased risk of having a baby with spina bifida. These conditions include:

•Obesity
•Poorly controlled diabetes
•Treatment with certain anti-seizure medications

Women with these conditions should consult their health care provider before pregnancy about steps they can take to reduce their risk of having a baby with spina bifida. For example, they can achieve a healthy weight before pregnancy, control their diabetes, change anti-seizure medications and take folic acid (see below).

Spina Bifida and other NTDs occur more commonly in some ethnic groups than others. For example, NTDs are more common in Hispanics and Caucasians, and less common among Ashkenazi Jews, most Asian ethnic groups and African-Americans.

How is Spina Bifida treated?

Occulta: This condition usually requires no treatment. Most individuals don’t know they are affected, unless the defect is diagnosed during an X-ray for some other reason. Occasionally newborns are diagnosed with this form of spina bifida if they have a dimple or other marking on their back. In some cases, these babies may need to be evaluated for spinal cord abnormalities that could eventually result in complications, such as weakness or numbness in the legs and bladder problems. Occasionally surgery is recommended to prevent these problems.

Meningocele: This defect is repaired surgically, and affected babies usually have no paralysis.

Myelomeningocele: This form of spina bifida usually requires surgery within 24 to 48 hours after birth. Now there are also options to have this repaired before birth, but those surgeries are still very rare. Doctors surgically tuck the exposed nerves and spinal cord back inside the spinal canal and cover them with muscle and skin. Prompt surgery helps prevent additional nerve damage and infection. However, nerve damage that already has occurred cannot be reversed. Soon after surgery, a physical therapist teaches parents how to exercise their baby’s legs and feet to prepare for walking with leg braces and crutches. Many children with a defect in the lower spine can walk with or without these devices, although most children with a defect high in the spine require a wheelchair.

What medical problems occur with Spina Bifida?

Common medical problems include:

Hydrocephalus: About 70 to 90 percent of children with myelomeningocele develop hydrocephalus, a build-up of fluid in and around the brain. Cerebrospinal fluid cushions and protects the brain and spinal cord. When the fluid is unable to circulate normally, it collects in and around the brain, causing the head to be enlarged. Without treatment, hydrocephalus can cause brain damage and mental retardation.

Doctors usually treat hydrocephalus by surgically inserting a tube called a shunt that drains the excess fluid. The shunt runs under the skin into the chest or abdomen, and the fluid passes harmlessly into the child’s body. A newer surgical procedure called endoscopic third ventriculostomy creates a new pathway for draining cerebrospinal fluid. This procedure may be recommended for some children older than 6 months, including some who experience shunt malfunctions.

Chiari II Malformation: Nearly all children with myelomeningocele have an abnormal change in the position of the brain. The lower part of the brain is located farther down than normal and is partly displaced into the upper part of the spinal canal. This can block the flow of cerebrospinal fluid and contribute to hydrocephalus. In most cases, affected children have no other symptoms. But a small number develop serious problems, such as breathing and swallowing difficulties and upper body weakness. In these cases, doctors may recommend surgery to relieve pressure on the brain.

Tethered Spinal Cord: Most children with myelomeningocele, and a small number with meningocele or spina bifida occulta, have a tethered spinal cord. This means that the spinal cord does not slide up and down with movement as it should, because it is held in place by surrounding tissue. Some children have no symptoms, but others develop leg weakness, worsening leg function, scoliosis (curvature of the spine), pain in the back or legs, and changes in bladder function. Doctors usually recommend surgery to release the spinal cord from surrounding tissue. After surgery, a child should return to his usual level of functioning.

Urinary Tract Disorders: Because of nerve damage, individuals with myelomeningocele often have problems emptying the bladder completely. This can lead to urinary tract infections and kidney damage. A technique called intermittent catheterization, in which the parent or child inserts a plastic tube into the bladder several times a day, is often helpful. Children with spina bifida should have regular care by a urologist (a doctor who specializes in urinary tract problems) to help prevent urinary tract problems.

Latex Allergy: According to the Spina Bifida Association (SBA), many children with myelomeningocele are allergic to latex (natural rubber), possibly due to repeated exposures during surgeries and medical procedures (4). Symptoms include watery eyes, wheezing, hives, rash and even life-threatening breathing problems. Doctors should consider using non latex gloves and equipment during procedures on individuals with spina bifida. Affected individuals and their families should avoid latex items often found in the home and community, such as most baby bottle nipples, pacifiers and balloons. A list of safe and unsafe items is available from the Spina Bifida Association.

Learning Disabilities: At least 80 percent of children with myelomeningocele have normal intelligence. However, some have learning problems.

Other conditions: Some individuals with myelomeningocele have additional physical and psychological problems, such as obesity, digestive tract disorders, depression and sexual issues.

With treatment, children with spina bifida usually can become active individuals. Most live normal or near-normal life spans.

Can Spina Bifida be prevented? 

Some research shows a B-vitamin called folic acid can help prevent spina bifida and other NTDs. Studies show that if all women in the United States took the recommended amount of folic acid before and during early pregnancy. It is important for a woman to have enough folic acid in her system before pregnancy and during the early weeks of pregnancy, before the neural tube closes.

The March of Dimes recommends that all women of childbearing age take a multivitamin with 400 micrograms of folic acid every day before pregnancy and during early pregnancy, as part of a healthy diet. However, a woman should not take more than 1,000 micrograms (or 1 milligram) without her provider’s advice.

Women who already have had a baby with spina bifida or another NTD, as well as women who have Spina Bifida, diabetes or seizure disorders, should consult their health care provider before another pregnancy about the amount of folic acid to take. Studies have shown that taking a ten-fold larger dose of folic acid daily (4 milligrams), beginning at least 1 month before pregnancy and in the first trimester of pregnancy, reduces the risk of having another affected pregnancy by about 70 percent.

Can Spina Bifida be detected prenatally?

Health care providers routinely offer pregnant women screening tests to help identify fetuses at increased risk of Spina Bifida. These screening tests include a blood test called the quad screen and an ultrasound. The blood test measures the levels of four substances in the mother’s blood to identify pregnancies at higher-than-average risk of Spina Bifida and other NTDs, as well as Down syndrome and certain related birth defects.

If the screening test suggests an increased risk of spina bifida, the health care provider may recommend additional tests that are accurate in detecting severe Spina Bifida. The tests are a detailed ultrasound of the fetal spine and amniocentesis. A detailed ultrasound can help determine the seriousness of Spina Bifida and whether certain complications are present. In amniocentesis, the doctor inserts a needle into the woman’s uterus to take a small sample of amniotic fluid. The fluid is sent to a lab to measure levels of alpha-fetoprotein (AFP) in the fluid. An abnormal amount of the protein in the fluid is associated with Spina Bifida.

What are the benefits of detecting Spina Bifida before birth?

When Spina Bifida is diagnosed early in pregnancy, women can consult with their health care provider to learn more about the disorder and to consider their options. For example, they can plan for delivery in a specially equipped medical center so that the baby can have any necessary surgery or treatment soon after birth. Now the option of prenatal surgery is also available if the condition is detected early enough.

Parents and doctors also can discuss whether a vaginal or cesarean delivery would be best for their baby. Fetuses with myelomeningocele are more likely than other babies to be in a breech (feet-first) position. A cesarean delivery is generally recommended for these babies. Some doctors may recommend a cesarean delivery for babies with myelomeningocle who are in a normal head-first position, especially if they have a large cyst. One study found that a planned cesarean delivery can reduce the severity of paralysis in babies with myelomeningocele; however, several studies found no reduction in paralysis in babies delivered by cesarean.

More than 400 babies have undergone experimental prenatal surgery to repair myelomeningocele before birth. This approach is based on the idea that early repair (between the 19th and 25th weeks of pregnancy) may help prevent damage to exposed spinal nerve tissue in the womb and reduce paralysis and other complications. Preliminary results suggest that children who have prenatal surgery have improvements in the Chiari Malformation and may need a Hydrocephalus shunt less frequently, but their bladder and bowel function do not appear to be improved. One study found better-than-expected walking ability in toddlers, but other studies did not. This procedure poses surgery-related risks to mother and baby and puts the baby at high risk of premature delivery (before 37 completed weeks of pregnancy). Prematurity increases the risk of health problems during the newborn period and lasting disabilities. Doctors do not yet know whether the benefits of prenatal surgery outweigh these risks.

To find out whether prenatal or postnatal surgery is more effective, the National Institute of Child Health and Human Development (NICHD), a part of the National Institutes of Health (NIH), is conducting a study to compare the results of both types of surgery in 200 babies with myelomeningocele. Half of the babies undergo surgery before birth, while the other half have surgery shortly after birth. The surgery is being carried out at three major medical centers: Children’s Hospital of Philadelphia, the University of California at San Francisco and Vanderbilt University Medical Center in Nashville. More about this research is available at the study Web site or (866)-ASK-MOMS (866-275-6667).

Is the March of Dimes conducting research on Spina Bifida?

Several March of Dimes grantees are searching for genes that may contribute to Spina Bifida and other NTDs to develop new ways to prevent these disorders. Others are seeking a better understanding of how folic acid prevents NTDs, to make this treatment even more effective.

The March of Dimes is a member of the National Council on Folic Acid, an alliance of organizations working to promote the benefits and consumption of folic acid.

Where can families find additional information on Spina Bifida?

More information is available from:

Centers for Disease Control and Prevention (CDC)
American Academy of Pediatrics (AAP)
Spina Bifida Association (SBA)

Thank you for taking the time to read this, I hope itgave you a better understanding of what Spina Bifida is!

Sunday, September 30, 2012

Thoughts from a Hurting Heart

Wow.....

I can't believe I have gone so long without blogging! This is just crazy! But sometimes life rolls that way. To me blogging is a way to express myself, share my heart and heal. On one hand, I have sorely missed sharing while on the other hand, I have not been in the best mental place in a while. But tonight my heart just HURTS and I need to share that with many people, so here I am. I wish I was in a happier place coming back here, but it does not seem to be in the cards.

Life is a journey. We don't always get to pick the direction of our journey. Life has a way of taking us down roads we NEVER thought we would travel, and yet the journey is ever continuing. I can even find the good in most of it, it just takes time and perspective.

As most of you know, the journey of this family's life includes this little thing called Spina Bifida. Spina Bifida.... such little words that I NEVER knew would make such a HUGE impact in my life. Until 12 and a half years ago I didn't even know those words. Today I could give a dissertation on them without thinking. And the crazy thing about Spina Bifida is that no two journeys are EVER the same, it works differently in every individual!

Another one of the journeys life has given this family is that of brokenness and abandonment. This is one of those things I don't talk about much, it is so personal and still hurts so bad, but it is part of what forms my little family. Fifteen years ago I married Mark, the father of my children. In my mind and my world marriage is a sacred vow and for life. In my world marriage is also a partnership where honesty, openness and teamwork are of utmost importance. Although Mark's words matched my thoughts and ideals, the reality he walked didn't. For years I prayed through a life of lies, deceit, selfishness, addiction, abuse and abandonment. For too many years I thought I could fix him through prayer and love, but when a person does not care to be Godly, whole or well there is nothing that anyone else can do to help that person. Mark walked a path of selfish destruction, that I was foolish enough to allow to touch me and my precious children. My marriage is now very much over and dead, but we still deal daily with the after effects of the learned behaviors that the children saw their father model (disrespect, violence, selfishness, entitlement, lying, stealing... the list goes on and on) and worst of all, the abandonment. Both of my children have HUGE issues over the abandonment.

One of the things about journeys is that sometimes you get blindsided when the roads that you thought were parallel suddenly cross, or worse yet merge! This happened to me this week and I am still reeling from it.

Spina Bifida manifests in SO MANY different ways. One of the ways that touches our life deeply is the cognitive end of it. Nathaniel deals with a lot of the Non Verbal Learning Disorder stuff: executive functioning, processing, sensory overload, lack of cause and effect thinking, fun stuff like that. The other Spina Bifida thing we deal with constantly is the chronic end of it: the constant pain, the roller coaster of medical needs, the endless surgeries and procedures. Now we meet this road up with the road of brokenness from our family stuff: the financial stress of a broken family, the juggling of all of Nathaniel's medical stuff with being a single mom, the trying to do a job created for two people and meet the varying needs of two children, the loneliness and emptiness of a broken marriage and the lack of a built in support system (you know, the end of a hard day when you just want to be held and instead you face more emptiness) and the never ending attempt to balance it all with good, fun and nourishing actives for the kids. I often feel like a pin ball stuck in an endless game, being hit from here to there, bouncing off of this into that, always on the move, never getting a second to rest and completely out of control of my journey.

Nathaniel has a lot of behavior issues, and what I call a HUGE sense of entitlement. We deal with rages, we deal with tantrums, we deal with a refusal so do the smallest task to assist the family, we deal with control struggles over the strangest things (like getting dressed everyday!) and we deal with trying to figure out how much he really does hurt vs. how much he is trying to get out of doing stuff (you say your back hurts too much to empty the bathroom trash can full of your catheters, but you are fine to be playing tennis against my garage door while telling me this???).  We have tried various types of behavior therapy for YEARS in regards to this stuff, and all of it has had limited effectiveness. I feel like his Regional Center service coordinator and I are CONSTANTLY trying to figure out how to best support Nathaniel while encouraging him to be the most that he can be. I feels like it is a minute by minute battle in my life to encourage him, and even at times force him, to be all that he has the ability to be, while he pushes back at me to just sit back and be served (not that I do that, but that is his demand). This week we had yet another "pow wow" style meeting over this.

Recently our service coordinator set up to have the Regional Center psychiatrist come out to our home and observe Nathaniel in his natural environment to try and shed some light on the situation and what we are missing. Now I want to be clear that this doctor is a man who we have been working with for some time now to try and coordinate services that actually benefit our family. He has read Nathaniel's file thoroughly, he has sat in on many meetings, he has a good background in this type of work, he has been insightful and helpful and I actually really respect him. The visit was nothing spectacular. Nathaniel was his normal self (obsessing on his broken foot, refusing to assist in simple household tasks, OCD and there was a mild tantrum when we pushed him to comply). We showed the doctor our home, our daily token economy, our picture charts to assist in sequencing, our feelings wall, you know, the normal stuff.  The visit was about 45 minutes and at the end he simply left saying goodbye and that he looked forward to discussing this. All in all not a huge deal to me. Yes, this doctor already knew Nathaniel pretty well, so there really wasn't any point in drawing this out too long.

As the weeks between the observation and the meeting passed, I really didn't think much of it all. We have had neuropsychology reports done before, he has had countless psych reports at school done. I thought I was sort of used to this, if anyone really can get used to this journey. I very honestly walked into the meeting a little off my game (fighting a cold) and totally thinking I would be getting  a dismissal. You know, the "Well we have done all we can, we just don't think there is any more to do." I have been getting those a lot recently and thought this was a set up for another one.

I could not have been MORE WRONG.

When we all sat down and the psychiatrist started talking I knew I didn't have this meeting pegged right at all. Some of the stuff he was saying I have said for years (lack of drive or self start, wanting things done for him instead of helping himself, withdrawal, controlling tendencies, etc.). Some of the stuff surprised me (that he thought Nathaniel was chronically depressed, that he felt the learned helplessness was debilitating, that he felt Nathaniel self sabotages himself, that he was SO dooms dayish). The tone and severity of the meeting really shocked me. I agreed with how he was describing Nathaniel, but I have never had anyone a) agree with me or b) think there is cause for concern. I KNOW that I struggle every minute with my son, but I am so used to being ignored about it that I was shocked. Totally shocked.

We came out of this meeting with some new labels:

Dysthymia: (also known as neurotic depression) is a mood disorder consisting of chronic depression. It is a serious state of chronic depression, which persists for at least 2 years; it is less acute and severe than major depressive disorder. As dysthymia is a chronic disorder, sufferers may experience symptoms for many years before it is diagnosed, if diagnosis occurs at all. As a result, they may believe that depression is a part of their character. Dysthymia has a number of typical characteristics: low drive, low self-esteem, and a low capacity for pleasure in everyday life. Mild degrees of dysthymia may result in people withdrawing from stress and avoiding opportunities for failure. In more severe cases of dysthymia people may even withdraw from daily activities. They will usually find little pleasure in usual activities and pastimes. Diagnosis of dysthymia can be difficult because of the subtle nature of the symptoms and patients often can hide them in social situations making it challenging for others to detect symptoms. Additionally, dysthymia often occurs at the same time as other psychological disorders, which adds a level of complexity in determining the presence of dysthymia, particularly because there is often an overlap in the symptoms of disorders. (Completely fits Nathaniel in my opinion).

Learned helplessness is a technical term that refers to the condition of a human or animal that has learned to behave helplessly, failing to respond even though there are opportunities for it to help itself by avoiding unpleasant circumstances or by gaining positive rewards. Learned helplessness theory is the view that clinical depression and related mental illnesses may result from a perceived absence of control over the outcome of a situation. (This is SO Nathaniel! And totally helps us see why regular behavior modification has had limited results with him!)

Reactive attachment disorder (RAD) is described in clinical literature as a severe and relatively uncommon disorder that can affect children. RAD is characterized by markedly disturbed and developmentally inappropriate ways of relating socially in most contexts. It can take the form of a persistent failure to initiate or respond to most social interactions in a developmentally appropriate way—known as the "inhibited" form—or can present itself as indiscriminate sociability, such as excessive familiarity with relative strangers—known as the "disinhibited form".  (From what was being said, this is primarily thought to be a result of the domestic violence that Nathaniel witnesses, and the abandonment of his father, boo hiss!!!)

While I can see why treating any and all of this could only help Nathaniel, I am disturbed by the lack of a path for treatment. There is just no flipping open the yellow pages and finding a doctor to treat all of this! It has been recommended that he will need a Medical Psychologist (someone who is used to working with cases of PTSD, chronic illness or amputees), and there really isn't a place for them to practice in this county! Then there is the fun factor that no one like to treat for the crap pay that state insurance pays. It is so hard to find good doctors that take Cen Cal or CCS here. We are so blessed to have Dr. Bravo and Dr. McGuire who are both GREAT, but they really are the needles in the hay stack when it comes to doctors and our insurance. But this momma will never give up hope! I will trust that the Lord has a path for us! I FIRMLY believe that we will find the help we need.

It has been recommended to us that we cast a net far and wide to find the perfect help for Nathaniel. And I have never been known as a box thinker, so that should be easy for me! I know that we live in an area with LOTS of retired folks. I also know that we live in an area where many people do not work in the fields that they specialize in (thank you wonky economy, and retirement packages that tempt people into other areas of work) so I am going to throw it out there. We are looking for someone with a background in medical psychology, someone who has experience treating any of the issues mentioned above OR PTSD, someone who can work with a child who's cognitive functioning is a bit low, and who is up for a very challenging case! The person or persons who are willing to take this on may not get huge money out of the deal, but they can get the satisfaction of knowing that they are helping to make life changing differences in a young man's life and in our family's life. I KNOW that the Lord has a perfect plan, I am just anxious for Him to show it to us!

All of this has been so overwhelming to me. Life in general is heavy around here, this sort of threw me over the edge. I have come to a place where being  single mom is wearing on me, school has been a tough adjustment for both kids this year, I miss Bri and things with Mark just keep getting worse. I am thankful for the friends that I have who allow me to fall apart and they still love on me. I am thankful for people like Bea who just is there and is ok with me saying I can't talk yet, but she stays there. I am thankful for people like Terry who know that sometimes a great hug speaks louder than any words. Or for all of my SB mommy friends who I can say "please pray" to and they just do it. I know there are more, but I am so tired from writing I can't think of them! I don't know how I could be on this journey without all of the people in my life. In my darkest hours there is always someone there to encourage me to take the next breath, or step.

I am not without hope. I KNOW that God has a special plan for my dear Nathaniel. But I am reeling with all of this new information, and the unknown road ahead of us with it. Please forgive me if I seem off of my game, for I really am! If you are a praying person, please keep us in your prayers. If you are a hugging person, please wrap me up in one. If you are a friend, thank you!

Thank you for reading the novel of my heart today!