Monday, February 14, 2011

A little girl, learning to read & Bob Books Giveaway

March 1, 2011 announcement

The WINNER of the Giveaway is:

Family H and their little girl, Violet.

Sabra let me know that her daughter put 8 pieces
of paper, numbered 1 through 8 (for the 8 entries)
into a bowl. She drew out the piece of paper with
number 6 and that represents Family H.

Sabra told me that after her daughter chose the
number....6 she said:

"This is cool to pick another child who has ACC like
me to get Bob books the same as me. I hope they help
reading with the other child."

Her mom said:

She then asked me who is number 6. I told her
I don’t know but we can check tomorrow to
see who the winner is. She was very excited about
seeing who won.


Thank you to everyone who entered.

You are going to LOVE this story!
AND the prize revealed at the end of the rainbow

I was contacted by the mom of a little girl who has
partial agenesis of the corpus callosum. I have known
the mom, Sabra, for a few years. Her daughter struggled
with learning to read and I remember when she told the
jump for joy story in the ACC support group about how
her child learned to read her first book.

Sabra enthusiastically wrote a heartfelt letter to the
Bob Books company:

"I would like to say thank you to whomever wrote these wonderful
books. I have a 6 ½ year old daughter born with congenital
hydrocephalus with a VP shunt and partial agenesis corpus
callosum. I tried hooked on phonics since this is what I had
used with my other children but she still struggled with trying
to read. She started first grade the day after Labor Day in
regular classroom with resource for language arts. She brought
home books from the library, AR books that were 0.6 and 1.0
reading level and cried because they were too hard and said
she couldn’t read. This about broke my heart when she said
this and how discouraged she was in regards to reading. When
I was in Barnes and Noble a week and a half ago to buy books
for my other children and myself, I asked the sales clerk on
what they recommended to help my daughter with reading. They
recommended your books and said they have teachers coming in
all the time purchasing them. I had never heard of these before
but I decided to give them a try and bought the first set,
beginning readers.

You have to understand this has been hard on me since we are
so big on reading. I have been working with her and trying to
find what worked for her to help her learn to read. It was
amazing and beautiful to see her little face light up and the
biggest grin after she read the first book. She currently
finished book 9 tonight and is doing amazing, we read a book
a night. She may not remember she just read that word on the
previous page but sounds it out and reads it without getting
discouraged. What helps for her is the small size of the book
and only a few words on each page. She may also struggle with
comprehension and understanding that reading a book is a story
but I know we will get there eventually. Your books have helped
us give her the confidence to read and the foundation on which
reading begins.

I will be going back to Barnes and Noble this weekend to purchase
set 2 for my daughter. Again, thank you so much for having this
program available and the insight to whomever wrote and developed
these books to give my precious daughter a chance to learn to read.
I don’t normally write comments and feedback but I am so impressed
with the books and the positive rewards, I felt compelled to send
one in regards to the Bob Books.

I now tell everyone I know including parents on hydrocephalus and
ACC online groups I belong to about how wonderful Bob books are.
I will make sure I have the money available when she is ready for
the next set."

A very happy parent in Virginia,

Bob Books Reply Letter to Sabra:

"What an amazing and wonderful letter. Thank you so much for writing.
I am forwarding your letter to the author, Bobby Maslen. She will be
thrilled to hear about your daughter's success. After all this time,
she still loves to hear about each and every child that learns to
read with Bob Books. (She wrote Bob Books over 35 years ago.) We
are so proud when we can make a difference, especially for
children that struggle.

You might like to see a video (just posted today) about how Bob
Books came to be. I hope you can tell from her face, how much
Bobby cares.

Thank you again for your very touching and heart-warming letter.
I am so glad we were able to make a difference for your daughter.”

Best, Lynn
Lynn Maslen Kertell
Author and Managing Partner, Bob Books Publications, LLC

This was a story with a very happy ending. But
that’s NOT the end...

Sabra, the little girl’s mom, also let me know that
Bob Books would like to give away a Bob Books
Set 1 Beginning Readers and a Bob Books Set 2
Advancing Beginners to a family who has a child
with Agenesis of the Corpus Callosum.

Sabra asked if I would host the Bob Books Giveaway
on the ACC blog on behalf of her and her daughter.
I said…absolutely YES, with pleasure.


1 Bob Books Set 1 * Beginning Readers


1 Bob Books Set 2 * Advancing Beginners


1. Please enter only if you have a child who has agenesis of the corpus callosum or a corpus callosum disorder.

2. Only US residents age 13+ are eligible to enter (due to
licensing issues we do not ship to Canada or overseas).

3. One entry per username & e-mail.

4. Answer the following questions:

Why do you want to win Bob Books for your child who has ACC and How do you think it would help your child with reading?

5. Please include your e-mail and username in your entry so
you can be reached if you are the winner.

6. Contest winner will be randomly chosen on February 28,
2011 by Sabra’s daughter, who inspired the Bob Books
Giveaway. : )

7. Contest Begins: February 14, 2011

8. Deadline Entry: February 27, 2011 11:59 pm, pacific standard time


If you are the Winner you will be asked to give out your mailing address which will be forwarded to Bob Books who will ship your free set of Bob Books 1 & 2 directly to you.

Be sure to explore the
"Entire Family of Bob Books"...

Thank you to Bob Books for sponsoring the Giveaway
from your heart in an effort to help another child,
who has ACC, learn to read. ♥

Thank you also to Sabra for allowing me to host the
Bob Books Giveaway for you.

A great BIG congratulations to Sabra’s little girl
for learning to read. You did it!!


Thank you to everyone who entered.

*note: I did not receive any merchandise or monetary gift
for hosting this Giveaway. This Giveaway comes from the
heart of Bob Books and is the result of a mother’s joy in
hearing her child who has partial ACC learn to read for the
first time and seeing her child’s confidence level soar.

Monday, February 7, 2011

ACC and Moms-To-Be #9 Story

I am so thankful to all of the Moms who want
to tell their story about being pregnant
and having a baby with Agenesis of the
Corpus Callosum. Each story is as unique as
each child who has ACC.

Several weeks ago I received an e-mail from
Amanda who expressed a desire to share
her ACC Pregnancy Story here on the blog
for others to read.

Thank you very much, Amanda. It is a
privilege to post your story and I thank
you from my heart for your willingness to
help other people through your own
personal experience.

Written by Amanda:

My name is Amanda and I am the lucky mother of three

On August 28th of 2009 I found out I was pregnant
which also was a week after my brother-in-law was
killed in a car accident.

My pregnancy was normal for the most part but it
took a month or so before I was able to see an
Obstetrician because Medicaid was dragging their
feet and no doctor would set me an appointment
without insurance. I was very angry.

When I was finally able to see a doctor because of
insurance (and where I live) I only had two choices
for doctors. So I picked the closest doctor.

When I finally got a doctor, I let my doctor know
I was hurting and having pain on and off with this
pregnancy. He checked me out and said I was fine.
With my second pregnancy I hurt and couldn't walk
far and had to take meds to control contractions.
At the end of my second pregnancy my son was born
five weeks early but was healthy. So I made sure
my doctor knew about my problems with my second
pregnancy when I saw him at my first appointment
for this pregnancy. But he didn't seem concerned
or seem to care about the pain I was having.

I remember hating to go to doctors because it would
take three hours to get seen and then ten minutes
to be seen. Because of my insurance you are only
allowed 2 ultrasounds.

About a month or two before Landon was born is when I
had an ultrasound done (my first and only ultrasound).
After the ultrasound, they said everything looked
good. They said due to his head size I was further
along than they thought and they changed my due date
from May 1st to April 26. My doctor said take it
easy but don't worry everything was good.

But in reality I now know he just had complete
agenesis of the corpus callosum (c-acc) and
plagiocephaly and many other things that were
not yet discovered.

Then soon after my ultrasound I went to a routine
appointment on March 15 (six weeks before my original
due date). I told my doctor everything again about
the pain and problems with my second pregnancy and
the pain I was having with this pregnancy and I also
told him that while doing kick counts the baby hadn't
moved much. So he said go to the hospital, let them
hook you up and check everything.

As soon as they put me on the monitors to watch me
I started having bad contractions.

I was in labor for 24 hours. On March 16, 2010 our
beautiful son, Landon, was born weighing 5 lbs.
4.9 oz and 18 1/2 inches long.

The cord was wrapped around his neck twice and he was
not breathing right so they took him to the Special
Care Nursery which is the same thing as a Neonatal
Intensive Care Unit (NICU). Landon was considered
to be preemie when he was born.

I didn't get to hold my son for a week and a half.
He was on machines helping him breathe and we couldn't
even touch him. They were afraid too much stimulation
could make his lungs collapse.

He was on the breathing machines for almost two weeks
and on feeding IV's for about a week.

He didn't seem to see or notice anything when he was
messed with or touched so they weren't sure about his
eyes. They always said oh all preemies have to learn to
eat, breathe right and keep his own body temp up in his
own time.

Once he could breathe right and keep his body
temperature up on his own he was moved out of the
warming bed (closed incubator) into an open bed for
almost another week. Then we were finally able to
bring him home.

He was in the Special Care Nursery a month before we
could take him home. No one could tell us why he
wasn't gaining weight and not eating right or

Once we brought him home he still couldn't eat without
it all coming back up right after. He started losing
too much weight so his Pediatrician and stomach doctor
put him in the hospital. He was put on Zantac when he
was born then changed to Prilozec then to Reglan but
changed back to Zantac because he had a reaction to
Reglan. Also he was on Neocate and Polycose--both are
supposed to make him gain weight but still didn't.

When he was four months old he was admitted to the
hospital because of inability to eat without vomiting.

While in the hospital they did ultrasounds of stomach
and head, a lot of blood work an MRI and CT scan. Finally
they had a diagnosis. They informed us that Landon had
complete Agenesis of the Corpus Callosum (c-acc),
Deformational Plagiocephaly, Septo Optic Dysplasia,
Optic Nerve Hypoplasia, Gerd and Gastroparesis and now
they say he has a growth hormone deficiency.

The doctors said they had never really dealt with
anything like this and all they really knew was seizures
were a big possibility as was delays, he may need a
feeding tube, may never walk or talk so I was horrified.
I could do nothing but cry and blame myself and
everything else.

He doesn't see very well, he doesn't move much, he
is over 10 months and he just now learned to hold his
head up. He still has problems with eating baby food.
At 10 months he is only 15 lbs.

Nobody around here seems to be able to tell me
anything but wait and see. They say he may never walk
or talk and are not sure where he will be mentally.

But no matter what happens Landon is a God send. He
changed everything. He has made me a better stronger
person and I wouldn't trade it.

I just wish I could take his place so he wouldn't
have to go through it.


There are many different stories and outcomes of
ACC and Moms-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 leave a comment below or you can E-mail me:

Want to talk to other moms 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-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-To-Be section will always remain open
and available to anyone who would like to tell their story.

Thursday, February 3, 2011

there is always...

hope is the sparkle
from the depths of the hole

hope is the candle
you light in your soul

hope is the glimmer
you sense in your being

hope is the jewel
so brilliant and freeing

© Sandie L. Davis