Spina Bifida awareness day 12

Tonight I'm giving you one of my favorites. :) In truth every single one of these miracles are my favorite. This is Caleb!

Softhearted, Independent, Awesome!

Caleb is truly amazing! This little guy has been such an encouragement and an inspiration to me. He loves trains, playing baseball, and the Wii. Just the other day his mommy posted a picture of him sitting in his wheelchair next to a handicap space. It was the sweetest and the most genuine picture. All I could think about as I saw that picture was a little boy saying "Take that Spina Bifida." You can't get me down... and you certainly can't define who I am. He has worked so hard and has truly seen miracles take place on his journey with spina bifida. Caleb is also one of my favorites because his sweet mommy has touched my heart in so many ways with her friendship. She always has a kind and encouraging word to say. She has a faith and a trust in God that is such a blessing. She serves Him and she seeks to honor him with her life and her family's. I can't say enough about these sweet people. :) This month she has dedicated her blog Beyond Measure to showing off the faces of spina bifida. It's so wonderful. Take some time to see all the work she has done in spreading spina bifida awareness.


I need more kiddos or adults to feature- Please email me at scasmflip@hotmail.com.

Spina Bifida awareness day 11

So sorry... We have had some computer (well internet) issues... Our power went out on Wed. and I think that had a effect on our wireless router. Hopefully tonight we are back in business. :) 

In continuance of my last post I wanted to talk a little more the diagnosis of spina bifida.

(I stole this definition off a website... it was much better than my explanation)
The human nervous system develops from a small, specialized plate of cells along the back of an embryo. Early in development, the edges of this plate begin to curl up toward each other, creating the neural tube—a narrow sheath that closes to form the brain and spinal cord of the embryo. As development progresses, the top of the tube becomes the brain and the remainder becomes the spinal cord. This process is usually complete by the 28th day of pregnancy. But if problems occur during this process, the result can be brain disorders called neural tube defects, including spina bifida.

There are multiple tests that are offered to diagnose spina bifida during a pregnancy. The first is a AFP test-  This is a blood test which looks for a specific protein present. If the levels of the protein are high it can be a indicator that a neural tube is present. It is very very important to note that these tests are very inaccurate. A miscalculated due date, multiple babies, and many other factors can interfere with the accuracy of the test.
If the AFP levels are high  then a ultrasound is generally done to check the baby. A look at the baby's head and spine can often determine if spina bifida is present. The best and most accurate testing performed for spina bifida is a amniocentesis. This is a testing of the amniotic fluid that surrounds the baby. In most cases spina bifida is diagnosed between the 14th and 20th week of pregnancy.

Now here is the reason that spina bifida awareness is so important to me and why my heart is so burdened!!!! You see, often times when doctors give the diagnosis of spina bifida to parents they give it in a very grim and very depressing  manner. I dare say, more times than not the information is inaccurate. I know dozens of parents who were told horrible and false information. Their child will be brain damaged, will not talk, never walk, be miserable, and have no quality of life. Parents are then counseled that the best option they have is to abort the baby and just forget about it...... My heart breaks at this.  These babies are precious and so full of life. THERE IS NO EXCUSE AND NO REASON THAT THEY SHOULD BE KILLED. NO BABY SHOULD.

Just after I found out about Carson's diagnosis I joined a online support group of other mothers of children with spina bifida. It's been one of the best things for us, and I am so blessed with friends and kindred hearts. The moms kept telling me that pregnancy is the hardest part because it's not knowing what you are facing.... They were so right! The second I saw Carson I knew that everything was fine.... in my heart everything was amazing! He was so perfect to me. All the worry and fear and hurt I faced after his diagnosis and through the remainder of my pregnancy was so useless. He was fine, and he was mine. :) Just after carson's diagnosis (I was 32 weeks pregnant which was a blessing in disguise) I met a gal who was 18 week's pregnant with her first son. She had been told that her son had spina bifida as well. She and I chatted on multiple occasions about the information we were receiving about our babies - the suspected diagnosis..... We were learning together....Well the weeks passed... I had Carson and had not been on the support group for a week or so and had not heard anything from her. I was so excited to chat with her and share with her about Carson. All about how she need not worry and that everything was going to be fine. I had learned that her son's diagnosis of Sacral level was really good, better than Carson's which is L1- L2. I could not wait to show her his pictures and encourage her. Carson was perfect and I was certain that she would be so excited to know her son would be the same.... I sent her a message so full of happiness and joy, a few pictures, and a big cheery "DON'T WORRY" She sent me a simple response of... "Don't want to talk about it... the baby's gone." I sent a few more messages to inquire further... got a few short responses. I finally put two and two together and realized she aborted the baby at the counsel of her doctor and husband. My heart is so broken for her... and for that precious little boy. This I'm afraid is a common thing. With some research I am concluding  that approximately 30% of babies in the U.S. and 90% of babies in other countries diagnosed with spina bifida are terminated. Heartbreaking.

I am burdened.... I am sure that if people were given accurate information and hear about or meet someone with spina bifida these numbers would drop significantly and we could save these babies lives.

SO SPREAD THE WORD!!!! SPREAD AWARENESS!!!!

You know someone with spina bifida- you love someone with spina bifida. And they are awesome. 

Spina Bifida sweet hearts

Spina Bifida Awareness Day 10

A friend of mine posted this article to our spina bifida group site. The article was written in 1981- I found it absolutely unbelievable that just 30 years ago children with spina bifida were left to die... Really???? They considered it to be a controversial issue to perform the life-saving surgery of closing the spinal cord. My thoughts immediately raced to how this relates to me personally. Bob was born 30 years ago (well a little more than 30 years ago...lol) What if he had been born with Spina bifida???? What if this were still the common practice??? Please read....

Our sweet baby just after his spinal closure surgery- Day 2

Day 4- What if he had not made it to the day that we saw his first sweet smiles??

Are 'Spina Bifida' Babies Best Left to Die?
Surgeon David McLone Challenges a Too-Common Practice

Michael Hummel was barely five hours old when he was rushed into an ambulance last December for a 55-mile trip from Woodstock, Ill. to Children's Memorial Hospital on Chicago's North Side. He was born with an incomplete spinal column, a condition known as spina bifida that is the most common crippler of children. It afflicts two of every 1,000 babies born in the U.S., and its complications—from mental retardation to paraplegia to urinary tract disorders—can be so devastating some doctors believe nature should be allowed to take its course. Often that means the infant dies within days. An operation, though it may save the child, can doom him to a life marred by handicaps.
Michael's parents did not hesitate in their decision. Their physician sought out Dr. David McLone, 43, the Children's Hospital neurosurgeon who is a leading proponent of spina bifida operations. "Don't give up on kids," he advises. "Don't write them off." For one thing, 30 percent of those left to die somehow survive and suffer especially cruel disabilities. McLone performs the surgery as soon as possible, preventing infection and further damage to the nervous system. Because of him, the Children's Hospital clinic has become a national center for spina bifida surgery and care, with 800 youngsters currently under treatment.
When Michael arrived at the clinic and was examined, McLone told the boy's father, Gerald, a telephone company maintenance man: "We think the problem is going to be minimal." Then, as one father (he has five children) to another, McLone added: "You've got a good-looking baby there."
The operation began at 4:01 a.m. with the surgeon first repairing the hole in the spinal cord. ("It is kind of like closing a book," he explains.) Then McLone sewed together layers of tissue and skin to cover the spine, whispering, "Michael, me boy, you'd better come together now." By 6:30 the operation was over.
Though Children's accepts even the most severe cases, the hospital's spina bifida mortality rate has dropped from 30 percent in 1974 to nine percent. "So many things can go wrong," McLone marvels, "and yet these little people escape and survive." When he moved to Children's six years ago to set up the clinic, he remembers, "I fought battles with my own staff. Some thought only 30 percent of these kids should be treated." Now, he says, the team "gets upset if a parent even vacillates."
Doctors who believe the operation is ill-advised criticize McLone for making parents optimistic. The children can learn to walk, but the majority need leg braces, and some 30 percent of the victims will be retarded. McLone contends that most of the condition's effects can be diminished. He says mental retardation is most often caused by treatment for another complication, water on the brain. He has found a better solution, installing a shunt in the head to drain the fluid to the abdomen. The retardation rate among McLone's patients is 10 percent.
As a Catholic, he opposes abortion "for any reason." But recently he urged the Food and Drug Administration to clear a pregnancy test that can reveal spina bifida in a fetus. These tests would allow parents to consciously choose to raise a spina bifida child and prepare for medical treatment before birth. "In 10 years or so," McLone says, "we should be able to operate on a child's back in utero, so that the child can be born with the defect already repaired."
McLone is a native of Flint, Mich. and, he notes, "the first male McLone who does not work for GM." His Irish immigrant father, his mother and six uncles all worked on the assembly line. A halfback in high school, McLone went to Ferris State College with an itch to play football, but after one season he decided tackling chemistry was more rewarding. He attended med school at the University of Michigan and earned a Ph.D. in neuroanatomy at Northwestern. He became interested in spina bifida as a resident, when a visiting lecturer advised denying these children treatment. "It sounded like Nazi Germany," he recalls.
McLone met his wife, Norene, now 42, back in the second grade, and they married in 1962. The family owns a townhouse four blocks from the hospital. Proximity is essential.
Phyllis Agness, of Fort Wayne, Ind., whose daughter Laura, 8, has been hospitalized 41 times and has had 20 operations, marvels: "You don't find many doctors who have such a personal involvement. We called last Christmas Eve because Laura had a shunt problem. When we got here that night, Dave was waiting to operate."

This baby was born with spina bifida and he was given a chance

He was not left to die.

He has never been a burden

We have never questioned our decision to have kept him

Rather we have watched him grow in wonder and gratefulness

He's our superhero

And a constant source of joy

Were so blessed!!!

Spina Bifida awareness day 9

I took yesterday off   :) But tonight I am back with two little boys.

This is Kingsley

HAPPY, SNEAKY, and ADORED

This is Carson's peep Kingsley (He- he - loved your blog with Kingsley at the computer)  When I started reading about this cutie he was going through a very difficult time and facing some intense surgeries. I was so hooked on this little boy and his smile and his family's strength and courage.They are also just super sweet. Since they are from Canada, this week is Thanksgiving for them. I know that as they count their blessings, they count Kingsley. He's such a treasure.

Evan- Happy, Spirited, Loving

Yesterday was Evan's 2nd birthday!!!!!! I cannot believe that he is 2. This guy is a sweet-heart and a flirt. When I got to see him back in June all he wanted to do was just give me this "Hey there" smile. Oh he's super snuggly too!!!! :) Happy Birthday buddy. Tell mommy to give you extra kisses from me. :) Oh and give her a hug from me.

Spina Bifida awareness day 8

Its a Saturday! I love Saturdays!!! Its a day that means family time and family time always means fun.

A face of Spina Bifida

That is what I wish to make you aware of today- Fun!

I have seen some posts running around this month to help make you aware of spina bifida and they are rather frightening..... and false!!! Spina Bifida does mean that there are some extra routines, and extra concerns. Extra appointments, and extra expenses- AT TIMES!!! Those extras though are by far in the minority. Most of the time we don't even think about Spina Bifida... We just live our lives and try to make the most of them in every way that we can. 

And in that sense- --- We have a lot of fun, regardless of whether Carson has spina bifida or not. It doesn't matter, and it doesnt change our Saturday's of play one bit. If you ever hear that Spina Bifida affects an individual's quality of life then you tell them they have no idea what life is. This is the life we always dreamed of living.... With our boys!

Look at this big boy!!!!

Isn't this my baby???

Oh Gracious!!!

No Silas' were hurt in the next few pictures and these attempts of riding together

This was Carson's idea- They both loved it.

Playing Croquet

He then decided why don't I just grab the ball and throw it....

And he rode off into the sunset....

Life is sweet and so good!  We are blessed beyond measure.... even with spina bifida.  You know I'd be so bold as to say that we are blessed because of spina bifida. We appreciate things that we would have otherwise missed.

Spina Bifida awareness- day 7

So last night I took a night off- Tonight I intend to make it up to you by showing off some cuties. Here's three awesome kiddos....

Meet Aleria Nevaeh.... FUNNY, sweet, and independent.  Oh this little girl just melts my heart, she is such a cutie! In this photo she is riding a amtryke which is an adaptive bicycle - Love it!!!!

Roman Potter

Smart. Hilarious. Miracle 

Roman is two and a half years old.  He's had 10 surgeries, 3 pairs of braces, 2 walkers, and has given me one million hugs, 3.2 million kisses, a lifetime of happiness and he's changed my life forever.

Currently his biggest problem is staying out of time-out when he refuses to pick up his toys. ;) 

I'd like to add that just recently Roman got a new pair of leg braces... and it was a challenge and a difficult thing for him to adjust to. Braces are bulky and odd looking. Carson currently uses a supine stander (I'll post a picture tomorrow) in his therapy.... this thing is a contraption with its straps and harnesses. Kinda scary. Carson doesn't like it when I first have to put him in it, and it can be hard as a mommy to do. However, I know this is what's best for him even though he doesn't understand it. Always though--- within a minute of standing tall he thinks he's the coolest kid on the block, and just beams.  Roman's mommy is amazing and has so much strength and courage. She faced this situation and shined through it with her ingenious ideas and her determination to help her son. I'm so proud of them potters!!!

This last photo is Lane

 3 words to describe him....strong amazing miracle

update- Lane is doing amazing! He is currently crawling EVERYWHERE, starting to pull up and cruise, and orienting to his walker. He is also learning to talk with a trach and thats with no speaking valve! I couldn't be prouder. Such a sweetie. This is a little boy that is saying "Take that spina bifida" so loudly the drs. are rewriting their medical books.

Lane will be 18 months on the 13th! 

 Thank you mommies for sharing your kiddos! They are so special! If you'd like your child or yourself featured please email me at scasmflip@hotmail.com

Day 6- Spina Bifida awareness

Taking a night off....One of the things I've learned on this journey with Spina Bifida is that sometimes you need to go to bed early. goodnight everyone!

Ps. Still need more kiddos/ adults!!!! Email me at scasmflip@hotmail.com