Saturday, September 29, 2012

KNOWING ALEX: Life with Agenesis of the Corpus Callosum

This morning, as I was checking my e-mail, I discovered a note to all members of the ACC Listserv--(an Agenesis of the Corpus Callosum e-mail support group that I belong to). This particular e-mail, with a subject line: "Growing up with ACC", put a big smile on my face as I read it, and I couldn't get this blog post up fast enough to share with you here--not to mention get my own hands on a copy of the exciting, new e-book (electronic book).

With his permission, here is the e-mail--directly from him, with the surprising news that I just received, so you can read it for yourself:

My name is Alex Reisenauer I’m 24 yrs old with c-acc. My family joined this list a long time ago and this is my first time posting. After years of thinking about writing a book about what it’s been like to live with ACC and wanting to bring greater awareness about the condition to increase understanding, this month my book, KNOWING ALEX Life with Agenesis of the Corpus Callosum, has come out. I guess you can say it’s taken a life time to write. It’s co-authored by my mother, Cindy and tells how ACC has affected our lives. I have included the description of the book.

Publication Date: September 1, 2012

‘On the day their son was born Rich and Cindy Reisenauer were advised to institutionalize him. Alex had been diagnosed with frightening and unpredictable condition with the indecipherable name of Agenesis of the Corpus Callosum. Simply put, Alex was missing an integral portion of his brain—the band of nerve fibers that connects the two hemispheres.

The Reisenauers chose to take their newborn home to join his two brothers, and face the daily hardships and minor miracles of life with AgCC as a family. Every aspect of Alex’s condition presented developmental, medical, social, educational and vocational challenges. Hard fought for successes highlight his life of achievement.’

Right now its an ebook available at the following retailers: Amazon Kindle,
Apple iBookstore (for iPad), *
requires free iBooks app to view.
Barnes & Noble Nook,
Kobo, Copia and Gardners. It will soon be available at Baker & Taylor and Reader (Sony Reader). A print version should be available soon.

Mine is just one story. I hope as awareness for the condition grows more and more stories will be told until ACC is as familiar and understood by the outside world as other conditions like Autism.
Thank you for reading."
24 c-acc
 [c-acc=complete agenesis of the corpus callosum]

Would you like to know more about the new e-book titled: KNOWING ALEX: Life with Agenesis of the Corpus Callosum, co-authored by Alex Reisenauer, who has ACC, and his mother, Cindy Mauro Reisenauer?

Well, go ahead and have a look inside the book, where you can view the table of contents as well as read an excerpt.

If you don't have a Kindle, or other type of e-reader device, but still want to get the e-book and read it--You Can. The e-book is available to read on your computer.

Just download the free Kindle for PC or free Kindle for Mac to your computer. That free download will then allow you to purchase the e-book, KNOWING ALEX: Life with Agenesis of the Corpus Callosum, and have it delivered directly to your computer, for your reading pleasure.

Plus, you can also download other Free Kindle Reading Apps for Kindle Cloud Reader, Smartphones, and Tablets (i.e. iPad & Android Tablet). You don't need to own a Kindle device to read Kindle books.

Wow! I am excited to know that there is a book of this quality, and in-depth information, available that speaks directly about the diagnosis of ACC, and makes it incredibly personal, coming from the perspectives and viewpoints of a mother (and son-who has ACC) team!

Huge congratulations to both of you, Alex and Cindy, on your new book. I can already tell that this book will speak to so many people who read it....from parents who have a child with ACC, to teachers/school staff, tutors, to adults who have ACC, to new parents-to-be who are expecting a baby with ACC, as well as doctors and other professionals and more.

As a parent myself of an 18-year-old son, who is completely missing his corpus callosum, (and as someone who is currently reading KNOWING ALEX: Life with Agenesis of the Corpus Callosum, while nodding my head and relating to much of the story), I am certain that this book will be monumental and instrumental in creating a much-needed greater awareness of Agenesis of the Corpus Callosum, a condition that deserves to be better understood and recognized for the sake of the many people who's lives are affected (in a variety of differing ways) on a daily basis.

Wednesday, September 19, 2012

Back to School - ACC documents

Kids and school and Agenesis of the Corpus Callosum.

This is a repost because Fall is right around
the corner and that means:

Below you will find a list of ACC Educational
documents that are available.

I will continue to add any new ACC documents
that pertain to education to this page so
they are all located in one place and easy to

If you are aware of a helpful document about
ACC and Education please let me know by
leaving a comment or sending me an E-mail
so that I can add it here.


Educational Suggestions For Children With ACC

great information written by Kathy Schilmoeller, Ph.D., who is also the parent of a grown son with ACC.

“Considerations For Educators Of Students With ACC”:

Mr. McCallum wrote this document. He is a teacher
who taught a child with ACC in his classroom. He
offers detailed and valuable information.

If you would like to receive a copy of
“Considerations For Educators Of Students With ACC”
(sent to you via e-mail), please send me an E-Mail request.

*Note: In your e-mail it is helpful to know if you are
a parent or a teacher requesting the information.

Please feel free to also include any specific challenges and areas of concern that your child/student is experiencing.

The ABC's of ACC - printable version

ACC Reading and Comprehension

Handwriting Help

ACC: Social Skills & Challenges

Neuropsychological Evaluation

ACC & Me Children’s Book

You can get a free copy of the ACC & Me book by
registering as a first-time member of the NODCC
(National Organization for Disorders of the Corpus Callosum). The book comes as part of the welcome packet. There is no fee, however, they do accept donations of any amount.

ACC: Learning Colors - printable version

Marvelous Music:
A Musical Pathway To Learning For Kids Who Have ACC

Teaching Resources

National Organization for Disorders of the Corpus Callosum

"Facts about Agenesis of the Corpus Callosum and other Diagnoses"
(NODCC) Printable PDF Brochures:
(give one to your child's teacher)

Disorders of the Corpus Callosum Brochure: English

Spanish brochure
Chinese brochure
French brochure
German brochure
Japanese brochure
Korean brochure

Monday, September 10, 2012

ACC & Dads-To-Be Pregnancy Story #16

I am incredibly thankful to all of the Moms and Dads who
want to tell their story about being pregnant and having
a baby with Agenesis of the Corpus Callosum.

I received an e-mail last month with the subject line: "ACC Pregnancy Story", that said:

"I would like to share Caleb’s story, although I am a dad, not a mom."

I don't know if you noticed that the title of this story is
"ACC & Dads-To-Be", which is a first.

This is the first ACC Pregnancy Story written by a Father and I hope that it will pave the way for other Dads out there who would like to tell their own story about having a baby with ACC.

I am very grateful to be able to include Rodney's ACC Pregnancy Story here.

Each story is as unique as each child who has ACC. And this story is uniquely told from a Father's perspective.

I believe in my heart that every story told will ultimately reach out and touch the life of someone else in very special ways.

Thank you very much, Rodney. It is wonderful to hear from a Father, and it's an absolute privilege to be able to post your story here on the ACC blog for others to read. Thank you for reaching out to other people and for offering hope. I want to extend my heartfelt thanks to you, Rodney, for your willingness to express your ACC Pregnancy Story in words (and beautiful pictures) and for coming forward as the other half of the pregnancy team, who is just as deeply affected and involved.

Written by Rodney

Caleb’s Story

For the past year, anytime I have thought of my son’s birth, I begin to tear up. It was by far the most wonderful and terrifying experience of my life. The initial shock has finally begun to fade, but the experience has changed my wife and I’s lives forever. We did not discover Caleb’s complete agenesis of the corpus callosum until a few days after he was born and after reading many of your stories about discovering it prenatally, I am very thankful we did not know until after he was born (although I can’t say I felt the same way at that time).

My wife Katie and I originally did not want to have kids. However, we both began to feel the need for something more out of life and decided in our early 30’s to have a child. It took only two weeks of trying and she was pregnant. We couldn’t keep the news from either of our families very long as we were both extremely excited. We took a birthing class and my wife made out a detailed birth plan. Absolutely nothing went according to her plan. Her labor was long and painful, likely in part due to Caleb being turned face up. My wife’s doctor never showed. Fortunately, we did have a very good nurse with us. A hospital physician showed up at the very end of her labor to deliver Caleb. Caleb was born at 3 in the morning with a head full of hair and a grimacing cry. We immediately noticed his midline cleft lip, but I did not realize it was abnormal at the time. He also had a very broad nose. I cut his umbilical cord and his mom got to hold him for a few moments before a nurse commented that she didn’t like the way he was breathing. She took him to a table on the other side of the room to do his APGAR testing. The doctor assured us not to worry that if the nurses were concerned there would be an entire team of specialists in the room. Moments later, there was an entire team of specialists in the room. I watched our son gasping and fighting for each breath. His color turned from a bluish pink to a purple. When they rushed him to the Neonatal ICU, I got Katie’s mother from the waiting room to stay with her while my mother and I went to ICU.

When we got to ICU there were several nurses and specialists hovering over Caleb, monitoring his breathing, giving him oxygen and waiting for the doctor to arrive. I remembered one thing from our weeks of birthing classes that came in handy. The teacher had once said to the dads that if there was something wrong with your baby, that the dads needed to talk to their babies, that if they couldn’t touch or hold their babies that they needed to talk to them and sing to them while the doctors worked on them. So I talked to him and sang to him. I’m not exactly the type to sing in public, but I sang to him. I sang some Johnny Cash and Jimmy Buffett, not really because I liked the songs, but because I knew the words and it’s what came to mind at the time. I’m not sure what it did for Caleb, but it helped me.

           Caleb in hospital after he was born

The neonatal physician arrived who ironically is our neighbor. He had originally told me that he hoped he didn’t see us at the hospital because that meant something was wrong, so I rightly told him I was not glad to see him. After an x-ray, the doctor told me that Caleb had a pneumothorax, which is basically a collapsed lung. He performed a pneumothoracentisis (stuck a needle in his lung) to allow for the air on the outside of the lung to escape. He then put Caleb on a CPAP and Caleb began to breathe much easier. Katie finally made it to ICU at this point. She started to cry seeing him with the CPAP and various monitoring instruments attached to him but I assured her that he was doing much better than he was. We had a hard time leaving him there, but we were told it was shift change and we had to leave. We were all exhausted, but I couldn’t go to sleep not knowing someone I trusted was with him and my mother volunteered to stay with him, which I am eternally grateful for as I know she was exhausted as I was. We returned to our room at mother/baby, where just kind of fell apart. We held each other, cried and fell asleep for a couple of hours.

The next day a geneticist came by to see us and Caleb, which we all thought to be odd, but he explained that it was routine due to Caleb’s cleft lip and that he wasn’t looking for anything in particular. He ordered a series of tests including an echocardiogram of his heart and an ultrasound of his brain and kidneys. Also, an ear, nose and throat specialist came to see us and told us that Caleb had unilateral choanal atresia (a blocked nasal passage) and laryngomalacia. He thought that Caleb would grow out of the laryngomalacia, but that the choanal atresia would likely require surgery at a later date (maybe 6 months). Caleb was off the CPAP by the next day.

At the end of the 2nd day we were evicted from our room on the mother/baby unit, so we started sleeping in an ICU sleep room, which is a closet with a cot. On the fifth day, Caleb graduated to a sleeper room in ICU, where the parent’s have a bed and a couch and get to sleep in the same room with him. We thought we were getting close to being able to leave the hospital at this point. The nurses started talking about taking him in for an MRI. We asked “Why is he getting an MRI?” He already had an ultrasound of the brain, so we thought it was a genuine mistake. A nurse practitioner then told us that Caleb had complete agenesis of the corpus callosum (c-ACC). She explained that she wasn’t really the person to explain it to us, but that he would likely be developmentally delayed and have significant mental deficits. We were crushed again. I think the next 24 hours were the darkest we had ever known. Our child was missing a major part of his brain, what else were we left to think. The next day the geneticist came back and gave us a lot of comforting news. He indicated that Caleb’s cleft lip, broad nose, slightly wide spaced eyes, choanal atresia and ACC were a collective set of symptoms that fit the genetic disorder frontalnasal dysplacia. He indicated that Caleb would more than likely only have some slight developmental delays and/or learning disabilities and that time would tell more. After 7 days in the hospital, we gratefully came home.

Caleb right before we left the hospital

Caleb had surgery to repair his cleft lip at 6 months of age at Scottish Rite in Atlanta, GA. He (and us) had a few miserable days after the surgery, but he recovered very quickly. From a follow up visit with the ENT, he thankfully will not require surgery to fix his nasal passages.

              Caleb at 6 months old in hospital for cleft lip repair

He turned one year old in June and to this point has developed as a normal little boy. He started walking just a few weeks ago and has recently started saying the word “car”. He’s just a happy little boy and the light of our lives.

              Our Family (Dad-Rodney, Caleb, Mom-Katie)

I would like to add that I am so very thankful that we had good insurance and were able to give him the care he needed when he needed it. There are many in this world that are not as fortunate. I would like to recommend giving to the charity “Operation Smile” at Operation Smile sends doctors around the world to perform cleft lip/palate repair surgeries and is a charity that is close to our heart for what they do, they change people’s lives.

                                     1 year old Caleb

Father of Caleb
August 17, 2012

There are many different stories and outcomes of ACC and Moms/Dads-To-Be.

I welcome every story.

Do you:

Have questions?
Need support?
Want information?
Have encouragement to give?

Do you want to share your own ACC story here?

If you do, please E-mail me, (Sandie):

Want to talk to other moms (and dads) who have been there and understand? Join the ACC Listserv e-mail support group.

I hope to continue sharing more of these ACC and Moms/Dads-To-Be
stories out in the open in an effort to inform, encourage,
support and help other moms (and dads) out there who are being
told that their baby in utero has agenesis of the corpus

This ACC and Moms/Dads/Parents-To-Be section will always remain open and available to anyone who would like to tell their story.