Overheard: Wisconsin

Adam: Catholic Parenting: It's not for wimps!

***
Me: It's a wetland. Which means it is, um, wet...
Joseph: Yes, it's wet and deep with alot of animals and plants. You could lose your shoe in the water.
Me: Where did you learn that?
Joseph: At school, on our field trip.

Exhaustion

I haven't been blogging much or coherntly lately. I have spent the past two weeks getting ready to travel, traveling and unpacking from the trip.I have no idea why one six day trip takes a total of two weeks to do and undo, but it does. Thankfully, this trip was our seventh to WI so we have it streamlined. We know what to bring and how much. The older two are old enough that, wish some guidence, they can pack their own backpacks and take care of basic needs, like eating, drinking and looking at books, on their own.

But I am exhausted.

Today I had a total meltdown. I.am.just.done. I felt like all I do is cook, clean, change diapers, nag at little people to clean and feed some. Oh, and vaccum up dog hair. Our dog is a 100 pound black lab who is 90 pounds of hair... and it's 90+degrees outside.He sheds. Alot.

I have no idea why I am so tired. Adam is loving and supportive and even cooks meals on the weekends. He does all the shopping. He takes care of Georgie when he is home and drags another kid or two with him on errands. I have loving spousal help- what the HELL is wrong with me?!

Then I think... I have been pregnant or nursing since Aug 2003. In seven years, I have grown FOUR entirely new human beings, supported them and their little support system for 35-40 weeks before expelling them from MY body. The second they were out, they were dependent on me for everything AND I used my body to feed them. For  9-21 months, depending on who the kid was, I was their sole or main source of nutrition, 24 hours a day, 7 days a week. Twice, I was both pregnant and nursing. Twice, I have had trouble breastfeeding taking alot of time and physical and mental energy to overcome those problems.

Every time, I have had to be pretty active post birth, either battling my own complecations (PIH after Joseph was born), caring for young children without help (Adam went back to work on overtime when Camille was born) or problems with the baby (Cole and Georgie). I WISH I could have spent time in bed at home; I'm happy I had help with the others after Cole was born!

Housework, meals and child care doesn't ever end and diaper don't wash themselves. (Although I wish they would; I have diapers that need to go in right now!) General life insanity goes on.

When I was pregnant with Camille, several people told me that the close age spacing is great for the children but hard on the parents. I agree. We had orginally planned to have our kids, just two but maybe three (I was open to four and Adam  thought I was nuts), about 2.5 years apart. Camille and Joseph are 21 months apart; then three  years and now Cole and Georgie are 16 months apart. I love it. I honestly do. I like having them close in age. I would have never planned it that way at first but now I think it is great. I would do it again in a heartbeat.

BUT...

I am on 24 hours a day, seven days a week. I have had one four month break from nursing/pregnancy since 2003. I am the primary care taker of the house and kids, one of whom is completely dependent on me. Joseph and Camille can and do help out but they are children. They can't drive, clean a whole bathroom perfectly or be expected to do tons of chores. Sometimes (all the time?) I go into other's houses and seen neat, clean, dust free rooms and feel... like a slacker.

I've begun reading a blog called "Rasing Olives." We are so not Quiverfull or Proventailist (I think I could be, if my uterus- and husband- were different but I like them (well, the husband!) they way they are so I go with it) but she has some awesome tips on her blog. We are so using the magnetic paint and chalkboard paint in our new kitchen.

Anyway, her guest post, "Does it Get Easier?" really struck a cord with me today. The kid clutter, DOG HAIR and general dirt and grime were getting to me. I like a clean house- well, one without toothpaste on the mirror! I'd like the cobwebs to go away. And I just don't have the time to do it, even with helpers (or, especially with helpers!) I feel, and this is stupid, like the house is too dirty to go anywhere because when I get back from wherever, I will be tired and there will be twice the mess (dirt plus trip dirt) to deal with.

I need to shut up, get over myself, relax and enjoy the kids where they are. I love this time- I truley do. Even with a massive blow up (my friend confessed to me tonight she did the same last week), wishing my kids would CLEAN THEIR ROOMS ALREADY (again, my friend said the same), I honestly love having small children underfoot.

I need to get out of the house more, go to the mall or pool or something. Part of me really dreads doing that because of all the comments I get. When we were in WI, some elderly gentleman actually counted my kids as they were leaving the hotel and snickered! Seriously! Who DOES those things?! I think I need to re-perfect my Mommy Glare. Heh.

I need to remember that my body has been through alot and it's okay to sit down, relax, play with the kids a nd just chill.

Joseph is going to be in full time school in a few weeks. This is the longest he will have been away from me on a consistant basis. It's scary and liberating all at the same time. I will be an older mother, one with a school aged kid. Wow. Just wow.

I'm at the beginning of parenting Cole and in the thick of it with Joe. It's a tiring balancing act, one I am happy to do even if I am tired all.the.frickin.time. It's passing all too quickly- with kids fairly close in age, I know it won't be long before Cole will be in first grade. I need to sit back, hang on and enjoy the ride.

Milestones Can Be Miracles

From the day Nichole was born with Down syndrome, we knew that milestones would take a little bit longer. She rolled over a little later, sat unassisted at 8 months, sat on her own from laying down after she was one year old, crawled at fifteen months and took her fist independent steps when she was 23 months old.

Although at times I had to keep myself from being discouraged, mostly we got to enjoy our baby a little bit longer. What is even more, the excitement we experienced over Nichole's accomplishment of each milestone was blissful! The celebration was so heartfelt that there were many times I found myself with tears of joy.

Walking was one of those milestones that was particularly meaningful. She was close to walking and we were getting closer to leaving for Ukraine to adopt Nina. The thought of missing Nichole's first steps was saddening to me. Not only had we worked hard, it was one of those things that as the mother of a child with Down syndrome you do not want to miss, it is a defining moment. Emma Bombeck's poem whispered in my heart, "You witness a miracle and you know it."

Thankfully I did get to see Nichole's first wobbly steps and short distance accomplishments. By the time I got back from Ukraine, she was really walking. I was thankful I had gotten to witness the miracle.

But now I have a child with Cerebral Palsy too. The miracle of walking is one I hope to experience yet one more time.

With Nichole we celebrated, we cheered, we cried. With Nina walking...I might cry like a baby! We will be so proud of her the day that we see her accomplish such a milestone. This will be Nina's little miracle, and we will be honored if we are her witnesses.

And we will celebrate, oh how we will celebrate! And in our celebration, I suppose that we will dance, and we will dance as if nobody was watching. Nichole and Nina have taught us to live life and not keep anything inside. You will all agree, that you give it your all when a milestone, for a particular child, becomes their miracle.

ACC and Moms-To-Be #4 Story



I received this ACC and Moms-To-Be story from
Carrie and it is truly a privilege to be able to
share it here with you to read.

Thank you very much Carrie for reaching out to
other Moms and Daddies too as you openly share your
very personal ACC story.



ACC in Pregnancy Story

Our older daughter, Azelynn, was born on
April 18, 2003. Her name is derived from a
Hebrew name that means “spared by Jehovah.”
This is an account of our experience.

Prenatal Issues

As a 22-year-old, I became pregnant in late
summer of 2002. My husband and I had been married
for just over a year and we were both employed
full-time and were college graduates. We both
manage chronic health conditions—I have asthma.
He has a chronic health condition, and we consider
ourselves to be intelligent, empowered patients
who do their research and demand to have a say in
our care. My OB/GYN was a doctor who had delivered
me as well! I had no risk factors for complications
and was exceedingly careful both before and during
my pregnancy, taking the recommended prenatal
vitamins, eating well, and avoiding hazardous
environments, lunch meat, microwaves, overly-hot
baths, etc.

Our sonogram at 13 weeks looked great. My OB sent
us for a second sonogram at 24 weeks. Although we
did not want to know the gender, he found it to be
a good time to let Mom and Dad get another peek at
the baby and to let him have another set of measurements.
We thought the ultrasound went great and the tech said
nothing amiss that we noticed. We headed upstairs for
my regular appointment.

My OB was greatly concerned by the measurements of
the ventricles in our baby’s brain, which was a
surprise to us. Apparently the tech was not allowed
to disclose any issues. He referred us to a geneticist,
and we had to wait 2 weeks for the appointment because
he was out of the country. My OB’s best guess, having
not been present at the scan, was hydrocephaly.

The geneticist and his residents spent about three
hours doing sonograms. I also had an amnio done to
rule out genetic complications and so that we could
line up a special-needs pediatrician if needed. We
told them that we did not want to know the gender.

He told us that he believed the baby had Agenesis
of the Corpus Callosum (ACC), but that it would not
be anything debilitating, just something about as
difficult to manage as ADHD. The amnio came back
normal, but they did disclose the gender when they
mailed us the results.

We had a repeat sonogram with the geneticist at 30
weeks and he still felt that ACC was the issue.

Preparations for Birth

Given our baby’s brain complications, we met with
several pediatricians and asked each about three
pages of questions. Some blew off the concern. Others
asked me if I had been taking illegal drugs during
the pregnancy. We finally settled on a pediatrician,
who seemed to have a middle-of-the-road approach
while being personable and cautious. We copied her
on all notes from the geneticist and remained in
contact.

We also met with one of the neonatologists at the
hospital. We were impressed with him, and although
we were not able to go in the NICU, we at least felt
fairly comfortable with the situation if it were an
emergency.

We also took the hospital’s childbirth class. A huge
emphasis was placed on natural, induction- and
epidural-free childbirth. Because I was already
planning on this, it was in line with my wishes and
I learned a lot from the class, as did my husband.

I also attended a breastfeeding class. The lactation
consultant is a terrific cheerleader for moms who feel
insecure trying such a huge new thing. I can say that
she is a huge part of why I eventually succeeded in
breastfeeding my daughter—the accomplishment of which
I am most proud. I did ask her about issues concerning
nursing a newborn with ACC. She thought there might be
some loss of muscle tone and promised to follow up with
me when she was born and do everything she could.

My husband and I both attended her first aid class as
well. We learned a lot and had a good time doing so.
Learning how to help a choking toddler came in handy
for me more than once with my daughter’s oversensitive
gag reflex later on.

Birth Complications

At 34w4d, I left work for my 34-week appointment.
My blood pressure was sky-high, I was spilling
4+ protein, I had 4+-degree swelling, my reflexes
were very clonic, and I was gaining 10-12 pounds
a week in water weight. It seemed that I had
developed preeclampsia. My OB sent me to BSA for
a non-stress test and ordered immediate bedrest
“if they even let you leave the hospital.” They
didn’t.

The nurses freaked out a bit. Upon seeing my
blood pressure of 200/100, they put me in a bed
in a dark room with padded bedrails and forbade
me to get up to go to the bathroom or to watch TV
or to eat. After reiterating that I had driven
myself there and walked in myself, I convinced
them to let me up to go to the restroom and to
have a Subway sandwich for supper. That was my
last meal for about 4 days. They brought nursing
students in regularly to learn what clonic reflexes
were like. I was being pumped full of magnesium
sulfate.

My OB came by and asked if I still preferred to
have a natural delivery, or if I wanted to do a
c-section. He was honest in saying that the
c-section is easier for him, but that the natural
birth would do the best for the baby’s lungs.
Because I was already 34 weeks along, it was too
late to do the steroid shots. I still wanted a
natural unmedicated birth. He was going to contact
the pediatrician to ensure that she was okay with
that.

The OB came in in the morning and began the induction
at 8 or 9AM. My baby had no intention of being evicted
and after reaching the maximum level of Pitocin, they
had to start turning it off and then jacking it back
up again to make contractions happen. He broke my water
upon returning from a funeral. I had one or two mild
contractions that I could actually feel and then they
insisted on internal monitoring and an epidural because
they were afraid that pain would drive my blood pressure
higher. The first epidural did not work. The second did,
somewhat.

At about 8PM, I hit transition and had a wave of nausea
(despite having no food/drink for 24 hours). When I
rolled over out of reflex, the baby’s heart rate crashed
and pandemonium broke loose. I was immediately prepped
for a c-section. The nurses wheeled me down the hall
to the operating room. I was wheeled in yelling “I’M
NOT NUMB! I’M NOT NUMB!” In an effort to get her out,
I was shot full of local anesthetic in addition to a
bolus from the epidural. I could still feel a lot of
pressure and tugging and it was not a good experience.
It took three people to get her out because she was
tiny and was so low. (In hindsight, it’s also her
personality.) I never saw her or heard her. The
tugging stopped. The room was silent. I finally said,
“Is she out?” My husband said, “Yes.” I said, “Is she
breathing?” He said, “I don’t know.” Then she was
gone—whisked out of the room to the NICU.

At that point, I was hurting. The spotty anesthesia
as I was being put back together, the emotional shock
of not knowing if my baby was dead or alive, the lack
of sleep, the lack of food/drink, and the accumulation
of magnesium sulfate made me want to do nothing but
sleep and try to block it all out.

At some point later, I was back in a hospital room,
but I thought it was a different one. My eyes would
not focus. I had a serious sense of vertigo and had
difficulty staying awake. I woke up long enough to
ask if she was alive and my husband told me yes.

My Recovery

The pain button on the epidural pump was my best
friend for the next few days. Once it was removed,
the Pain Management team gave me a pill that I’m
pretty sure was hydrocodone. Again, despite my
asking about being able to be alert and ambulatory,
my eyes would cross, I would fall asleep in
mid-sentence, and I could not focus—much less
attempt to walk.

The NICU

My husband went to see Azelynn in the NICU after
my surgery was over. She was in a frog’s-nest on
an open bed on CPAP and was stabilized. He was
able to record video of her briefly that he played
for me when I briefly awoke. That is how I first
saw my child—on a 3-inch camcorder screen.

The grandparents were allowed to go in to see her
that night as well. My mom went again first thing
the next morning and stayed there for about an hour.
She was encouraged to touch her firmly and sing to
her.

My wonderful nurse, took me to see her the next day.
I rode in a wheelchair and still could not make my
eyes focus. I recall noticing that she had my toes
and fingers and a lot of hair. I could not scrub in
and therefore did not touch her.

The next day, my husband, wheeled me down to see her
again. I was still so messed up from the medicines
that I was reasonably sure that they took me to a
different baby, but decided not to say anything.
I still could not make my eyes focus and had a hard
time paying attention.

The next day, I got away from pain medication and
switched to Advil. I wheeled myself to the NICU and
I held her for the first time.



A lactation nurse, came to see me in my room and
helped me get started pumping. I did that every
3 hours for the next 6 weeks.

I gave her her first 5cc via bottle, which killed
me because I was so committed to nursing.

The first time she nursed was an experience. The
lactation nurse on duty came to the NICU and helped
me get her latched on and things went amazingly well.
When Azelynn got tired, we stopped.

Due to her prenatal diagnosis of ACC, they did an
ultrasound of her head and found that to their
surprise, she did have a corpus callosum after all.
This left them puzzled about the reason for the
large ventricles.

They took Azelynn for an MRI one morning. I would
have liked for one of us to go with her, but we were
not given notice and found out after it was already
over. Along with our family, we were all awaiting
news of the MRI results. Family called daily looking
for an update.

The neonatologist came into our hospital room with
her nurse practitioner. The neonatologist waltzed
up to my hospital bed, where I was sitting and my
husband was in the chair. She immediately said,
“The news is not good.” I will never forget that
phrasing. She proceeded to tell us that our baby
had lissencephaly and would never walk, talk,
sit up, or even roll over. She said that Azelynn
would suffer debilitating seizures and that an
EEG was already scheduled and would be read by
doctors in Dallas to see how severe the seizures
were already. We questioned the fact that she was
making periodic eye contact and even somewhat
smiling at times (we have photos). We were told
that that was due to overactive muscles. We
questioned the fact that we had not seen any
seizure activity and we were told that it was a
matter of time. She told us that her nurse
practitioner would print some information off
the Internet for us. My husband and I cried and
prayed together and decided to move forward
regardless and do the best we could. I had to
keep up on pumping and we tried to spend as
much time as we were allowed to with her. The
nurse practitioner returned later and gave my
husband a packet of information so that we
could read up on the condition.

Later, he looked at the packet of information.
It was printed off of the Internet. The first
thing on the page said, “If your child has just
been diagnosed with lissencephaly, this is NOT
for you.” It is for parents who have had time
to cope and understand the diagnosis who now
want more information. He read the information
and told me he did not want me looking at it in
my current state. He took it home.

With the news of lissencephaly, the pediatrician
who we had YET to see dropped us like a hot potato,
but did not tell us. We tried to make contact and
couldn’t get a call back. We eventually discovered
that a special-needs doctor was now our pediatrician
and was in fact taking over the neonatology side for
the most part as well. We were puzzled, as we had
never met him, or had any idea why he was now our
doctor. He and his nurse practitioner came to my
room to talk to us. They told us that they didn’t
care what the testing says—the important thing is
to focus on the baby and what she can do and what
issues she’s having. He also told us that the
original pediatrician had transferred us over to
him because he was a special-needs pediatrician.
We decided that we were comfortable with his
approach and that we liked his NP as well. One of
them continued to check in with us once or twice
a day.

Again, we were not told when the EEG was taking
place. We found out after the fact. The results
were normal—no seizure activity.

We had been told that Azelynn would be in the NICU
until about her due date (May 25, 2003). However,
on the sixth day, she began regaining weight and
was “nippling” okay (though her oxygen sats did
drop a bit while eating).

Our new pediatrician wanted us out of the hospital,
where Azelynn would no longer have to be a baby in
a box and where she could be cared for by her
parents. We agreed.

On the seventh day, Azelynn roomed in with me in my
“hotel” room. I had serious trouble getting her to
latch on to nurse and we ended up using bottles
quite a bit.

I am immensely thankful for the lactation staff,
who not only helped me while in the hospital, but
also fielded tons of phone calls from me and allowed
me to come in for weight checks to see how much she
was eating. However, I do wish that nipple shields
had been discussed more thoroughly with me. I did
not realize the issues that they would cause with
supply, and I had no idea how to get her to quit
needing a shield to be able to nurse.

I exclusively pumped for the first 6 weeks because
latching was just not working and I could not handle
an additional sense of failure; I had to take Reglan
because my supply totally disappeared the day after
we came home from the hospital. At 6 weeks, she latched
on and refused to take another bottle after that. Ever.
She was 4 ½ months old before I was able to get her
latching and nursing without the shield, which cut
our nursing sessions down from a solid hour each time
to about 20 minutes. She was 8 months old before she
was really latching correctly, which meant that I
endured multiple rounds of blisters, cracks, thrush,
and mastitis. At 8 months, everything finally started
coming together, both of us knew what we were doing,
and it finally worked like things should have to begin
with.

At 5 months, we repeated Azelynn’s MRI. There was
“no sign of lissencephaly.” We will never know if
the first MRI was misread or what exactly happened;
we choose to view it as a miracle and give the credit
to God. The report also described “diffuse thinning”
of her corpus callosum and still-enlarged ventricles.
She has never had a seizure.



Azelynn began rolling over consistently at 5 ½ and
7 months. She sat up at 7 ½ months. She began crawling
backwards at 10 ½ months and forward right after her
birthday. She got her first tooth at 16 months. She
walked at 18 months. She knew about 40 signs by age 2
and began stringing spoken words together at about
age 3. She potty-trained at 4 ½. She has hit every
milestone late, but she has hit them.

Azelynn is now 6 ½ years old. We began occupational
therapy in May 2009 for ADHD-like sensory-seeking
issues, fine motor delays, and visual processing
delays. We recently repeated her MRI. She has
hypoplasia of the corpus callosum (“extremely thin”)
and her ventricles are still enlarged. In hindsight,
many of the issues that we had during her infancy
and preschool years are related to her very thin
corpus callosum.

I am immensely grateful for all that I have learned
from this child. You will not find anyone who loves
her more deeply or fiercely than I do.

We are homeschooling for the second year now. She
reads pretty well. Math has been a challenge, but
she’s doing better after a recent breakthrough.
She loves books, Bible stories, music, toy cars,
VeggieTales, cheese, butterflies, ice cream, and
Boston Cream Pie yogurt. Most of all, she likes
to MOVE. She is never still, whether it’s spinning
in the tire swing, jumping on the trampoline, or
cruising the house on roller skates. She talks
non-stop and sings well. She is learning to play
the piano and has a love for American history.
She is deeply sensitive and loves enthusiastically.

We are blessed to have her. When I think back to
that time on the table when I did not know if she
was dead or alive, it takes my breath away. When
I think of the vegetative child that the neonatologist
predicted, it makes me smile to realize what we were
“supposed” to have versus what we actually have.
We do not know what the future holds for her, but
we do know that it will be enthusiastic, it will
be spirited, it will be creative, and it will be
something that someone with a normal energy level
could never accomplish. God has BIG plans for her.



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 story?

If you do, please leave a comment below or you can E-mail me:
hope@aracnet.com

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
callosum.

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

Nichole and her Chickenpox

I hope you took a good look at the first picture of Nichole. Not only because she is beautiful, but to remind you that she usually does look like that.

However, for the last couple of days, she has been looking like this.

My sweet baby girl has chickenpox and it is so sad. Andy and I look at her and we feel like crying for her. They say that children with Down syndrome have lower immune systems. in this case, I hope this is not true. Ellie is already on the mend and Nichole started getting spots two days after Ellie got hers. We are hoping that Nichole's worst day was today, and that tomorrow there are no more new spots!

(I am only posting pictures of Nichole because Ellie said she is too embarrassed to have me post her pictures here. Nichole, poor girl, has no say in this yet. Someday though, she might make me take these pictures down)

And one last look to remind you of the beautiful face waiting behind the poxes!

The Oprah Show

October is National Down Syndrome Awareness Month. you might think October is still a ways away, but if you were a TV producer, you are probably looking at what will happen in October.

It is Oprah's last season, and for this reason, the Down syndrome community has come together to flood her inbox asking that she will do a show about Down syndrome.

We are sending submissions and hoping that she will get the message.

Here is my entry,

Almost three years ago, my world was shaken by the birth of my second daughter, Nichole. I knew from the moment I laid eyes on her that she had Down syndrome.

Fear. Tears. Questioning. I wondered if I would ever be able to breathe again, to live life. I felt like I had birthed a broken baby.

At a bookstore I found a book called “Gift: Mother’s Reflect on How Children With Down Syndrome Enrich Their Lives.” The beautiful picture of a baby with Down syndrome was inviting, so I dared open it. I quickly glanced at the foreword and read the first sentence, “Your life will have flashes of color you never knew possible.” I knelt down in the middle of the isle, tears streamed down my face as I held the book tight and close to my heart. All of a sudden, I was flooded with hope. I knew that in those pages I would find truth; the truth about having a baby with Down syndrome. The truth that I wish everyone would know, weather their child has this condition or not.

Because of Nichole, we have embarked in the most life altering journey of our lives. A journey that I would not have willingly chosen, but now that I live it, I would not trade it for anything in the world.

She has taught us more in her lifetime that we have learned from anyone else. She has showed us what love, joy, peace, kindness, and gentleness looks like. To find beauty in places that the world might label as less than perfect. And she opened our eyes to the world of special needs.

Because or Nichole, we adopted a little girl with Cerebral Palsy. When I see them playing together, I am reminded that it was because of Nichole that a once-orphan girl was saved. It was because of Nichole, that our adopted daughter now has a hope and a future.

October is National Down Syndrome Awareness month. Please consider honoring the wonderful individuals with Down syndrome that continue to teach us the mysteries of life that really matter.


And if you want to send your own submission to contribute to this cause, just click here.

Love and Helplessness

We are discovering that in Nina's mind, she has to be helpless in order to be loved. It is a crazy concept, but we suspect that by being "helpless" she got attention, and therefore, felt loved.

From the time I took Nina out of the orphanage I have heard her say the words "I can't." First in Ukrainian, and now in English. We always thought that this was because she was told that all her life. However, these last couple of days we have began to wonder if the "I can't" and "You Can't" mentality was a vicious cycle encouraged by the workers, as well as Nina. Actually, we are wondering if Nina acted helpless in order to be held, in order to feel some human contact and affection.

Ellie and Nichole have chickenpox. Andy and I spend a lot of time holding them and giving them extra attention. Nina has quickly caught up on that, and she is distressed at the fact that she is not sick. She has a few mosquito bites and she insists on pointing them out, while occasionally lifting her shirt to see if her shingles have miraculously come back.

Since Nina got home, most "medical" attention and needs have centered around her. It has not been all fun, but I suppose it has been all about her. Having that attention shifted is rocking her world.

Here are a few examples of behaviors over the last couple of days.

-She is no longer climbing up and down the couch on her own. "I can't!" She says. She will even try to come up with all sorts of excuses to have us lift her from the couch and put her down. For example, "I have to go potty! Real bad!" "Okay Nina, come down the couch and I will take you." She pauses for a while, answers with some resignation, "No, I don't have to!"

-Her mosquito bites. If she sees them, she might all of a sudden cry...if we are in sight. If we quickly walk out the room, she stops, in a snap. She might crawl to where we are and try again.

-Last night, she was up 3 times in the middle of the night, crying. No reason, but somehow she was on the floor and of course I lifted her back in the bed and gave her a kiss. I think after the success the first time around, she did it again.

We keep telling Nina if she wants to be held that she can ask us. We even try to hold her and love on her. Somehow, it is seeing her sisters "weaker" that makes her feel she needs to be weaker as well in order to be loved.

It is sad to know that her concept of love has always been so conditional, and so tilted. It reminds me that she does not know love quite yet, she is learning. She is learning how to love and how to receive love. I am afraid that this is what would keep her from conquering some of her mobility issues. It makes me wonder if this is why deep down maybe she has no interest in walking.

Today, we have made a big deal out of all she can do. She is doing a little better, but still will not climb on the couch on her own.

These are just thoughts. I am reminded that we are getting to know each other, learning to live together. Mostly, we are learning to love.

Guest Blogger for Signing Time!

Last December, while I was in Ukraine adopting Nina I met the Wetmores at a Ukrainian cafeteria. We were sharing our stories of adoption and I mentioned how Rachel Coleman (the creator of Signing Time!) had written a post that had inspired me to adopt Nina. Thom and Tami know Rachel personally, (they are real life friends with the number one celebrity at our house!) so they handed me Rachel's e-mail and told me I had to share my story with her. So I did!

I have posted about Rachel here, but this time, I got to do a guest blog post for her. So hop on over and enjoy, "Strong Enough for Nina."

ACC - Meeting Milestones


Reach for Hope...then hold on to it always.

When your child has Agenesis of the Corpus
Callosum one of the most difficult things to
deal with is coming to terms with the unknowns of
ACC and learning how to deal with the uncertainty of
when your baby/child will meet his/her milestones.

When my child, Matthew, was a baby I had to stop
reading all of my 'what to expect' baby books for a
typically developing baby and put them away --
out of my sight.

I found it too difficult to read those baby books
for typically developing babies because my child,
who has Agenesis of the Corpus Callosum, was not
measuring up to those 'typical baby timelines'
for milestones.

Reading those books just caused me more grief.

In fact, back in 1998 this is what I wrote:


"Good-bye to baby books and their developmental
milestones timetables...
Hello sweet, precious child who will teach me more
than any book ever could!"


The other day I read a note on one of the ACC support
groups that I belong to. It was from a Mom who
I know that has a 6 year old child with ACC (plus other
medical conditions) in reply to another mom who has
an 11 month old baby with ACC.

The mom of the 11 month old baby with Agenesis of the
Corpus Callosum expressed a familiar feeling that I am
quite sure many other moms--myself included--will be
able to relate to:


"I'm getting a little down lately as it really seems
like its coming along so slowly and I'd just like to
see a BIG milestone!...It's so hard not to know what
his prognosis is."

I asked Sabra, the Mom of the 6 year old child, if
she would be willing to allow me to post her reply here
for others to read. She wrote back to me:


"Of course you can use my post, if I can help at least
one other parent then it is worth it. You can also feel
free to post my email address, if they want to contact
me for other questions or concerns."

This is her reply to the mom of the 11 month old baby
who has ACC:


"I have a beautiful, precious, and unique 6 yr old
daughter with partial ACC, hydrocephalus, etc. We
found out about Emily’s ACC at 5 months via MRI for
her hydro. I was told absolutely nothing in regards
to her ACC just that she needed to see a neurosurgeon
in the next 2 weeks.

Emily’s first 2 years were the hardest, just as one
doctor told me they would, with all the doctor’s appts
and therapy but it would get better once she turned 3.
At the time I didn’t believe him because we were seeing
doctors and therapist 4-5 days a week and I didn’t see
any end to it. But he was right, once she turned 3, she
started seeing her doctors every 3-6 months and now she
sees most of them once a year except her eye doctor she
sees every 6 months.

Emily taught us to appreciate the baby steps she took in
her development. Emily also started EI (Early Intervention)
at 9 months until she aged out at age 3.

Here is a little timeline of when Emily reached
milestones:

Sitting up= 1 yr

Crawling= 15 months

Walking= right before she turned 18 months

Talking=she said 3 words at 2 ½ years and then all
of a sudden at age 3, she started talking in 3-4
word sentences

Undressing self= 3 ½

Dressing self except shoes and socks=4

Putting shoes on byself(Mary Jane and slip on)=4 ¾

Able to put socks on by self= 5 ½

Self feeding= 18 months

Using utensils= 3 ½

Imagination play= 4 ½

Interactive play versus side by side play= 4

Writing her name= 5

Beginning reading=5 ½ but is slowly progressing,
math is her strength.

I have learned that any milestone she reaches or
does is a huge deal for us even if it is considered
normal development with other families. We have
learned by experience and talking with other parents,
our kids have to work much harder to do anything or
learn anything. I also discovered when Emily was in
EI if she was working on one skill, the others were
ignored or on the sideline, her brain is able to only
work on one skill at a time. So while we were working
on her feeding, her speech was nonexistent-but she was
still taking everything in and filed away to be used
when the time was right. Emily was blessed with having
her older siblings who loved to help her learn new
skills. Emily has taught them empathy, compassion,
understanding everyone is unique, big support for each
other, appreciation of achieving something that was
hard, and unconditional love.

You will be amazed at what your child is going to do.
You are going to look back in a few years and realize
how much he did accomplish. Have you taken him to get
his eyes checked? A good pediatric ophthalmologist or
neuro-ophthalmologist would be good. Emily’s vision in
itself is fine but she has no stereopsis vision-she
cannot see in 3D, and binocular vision disorder. She
also has Strabismus which she had 3 surgeries to correct.

It was recommended by parents on another group to get
her vision checked since it is midline and anything
midline can be affected.

When Emily finished Kindergarten (KG) this year, she
was given the Most improved student award, I was so
proud of her and how far she came this year in KG.
She also received a Math award, being able to count
to 100, and a Reading Award for recognizing the letters
in the alphabet and the sounds, and had the gold star
on it for being able to read all of her Word Wall words.
So if I have to pinpoint the first Big milestone, it
would have to be her KG year. Even her special ed
teacher, her OT, and regular ed teachers all said she
was not the same child at the beginning of the year.
They were even amazed at how far she came. To be honest,
when we had our first IEP meeting before KG, I asked
them if I would be able to hold her back if she was not
ready to move on to 1st grade. I was prepared to have
her repeat because at the beginning of the year, she
was really way behind. She seems to prove me wrong
every time. She was promoted to 1st grade with minimal
assistance, she will have resource for language arts
block only and may only need it the first 9 weeks and
the rest of the time she is in a general ed classroom.
She is still socially and developmentally behind about
a year to a year and a half but when I look at where she
was and how hard she had to work to get there, I think
she is perfect. It was recommended when I first joined
the ACC group, was to throw out the developmental
timeline, Emily had her own and would do them on her
own time. We just use it to get services she needs.

The hardest part for me was to not compare Emily to
other children her age or younger who were doing things
she couldn’t or with her own siblings.

If you have any more questions or want to email me,
please feel free to do so at weimerse@cox.net

Before you know it, in a few years this will be you
posting to a new mom your experience with raising a
precious and wonderful child with ACC. You will sound
confident and will be able to give the new parent help.

I hope I have helped you with sharing my journey with
raising a child with ACC. I have to say it is never a
dull moment and when you least expect it, it will happen.
It is also recommended to play music all the time-good
for brain development."

Sabra, mom of Emily 6 who has partial agenesis of the
corpus callosum, colpocephaly, arnold-chiari 1 malformation,
sensory integration disorder, strabismus and hydrocephalus
w/VP shunt, and mom to four other children.

Thank you so much, Sabra, for your willingness to
reach out to others and offer help, hope and support.




Look for signs of hope...they are there and
do exist...be sure not to overlook the small
signs of hope while you wait for the big
milestones.

hope@aracnet.com

First Shingles, Then Chickenpox

Last summer there was an outbreak of chicken pox at Nina's orphanage. Nina was one of the many kids that got it. When we asked about the history of her vaccinations, the doctor joked about how no kids had the chickenpox vaccine, instead they all had it the summer before.

Three weeks ago, Nina had shingles.

If you don't want to click on the link, here is a little expert from that site, "Shingles occurs when the virus that causes chickenpox starts up again in your body. After you get better from chickenpox, the virus "sleeps" (is dormant) in your nerve roots. In some people, it stays dormant forever. In others, the virus "wakes up" when disease, stress, or aging weakens the immune system. It is not clear why this happens. But after the virus becomes active again, it can only cause shingles, not chickenpox."

You cannot get shingles from shingles. However, you can get chickenpox from shingles (If you have never had it before.)

Ellie has chickenpox. She is covered head to toe. I would post a picture except she is really embarrassed about it and does not want anyone to see her. Her first spots appeared on Saturday, we were not sure it actually was chickenpox. By Sunday we were sure it was shingles, and yesterday we watched her body just get covered. It really felt like we were watching a fast forward tape as we saw the spots appear.

And let me just say, it is no fun to have chickenpox when you are camping!

Today Nichole has a fever...guess she will join her sister with the spots.


More Trip Highlights, the Final Day

*I am trying to eat more vegitarian options to cut down on my animal fat. However, I don't think the butternut squash ravoli soaked in a butter sauce with walnuts counts as "healthy."

*I wish people would learn the art of complementing someone without it coming out backhanded.

*When someone orders a salad, that does not mean they are constipated! SERIOUSLY.

*We wandered the Madison Arbortuem. They had a "natural, preserved" prairie. Although we are proud we all walked two miles without being utterly exhausted, and we enjoyed the pretty flowers... it.was.a.prairie. Like we don't get enough of those in KANSAS.
I think next year we are going to plan our trip better. Renting bikes for the day is cheap and if they rent trailers for the bikes, it could be fun to ride along the waterfront. The two big kids will be old enough for that next year.

*I still don't have my Spotted Cow Beer.

*I lost a contact in the car. I wasn't driving,thankfully. One day, I will learn to not take out my contacts in the car.

*The kids are exhausted and tried of traveling. The 11 hour drive home tomorrow makes me want to cry. I wish we could take it slow and stop overnight. Adam wants toget up super early and leave, just like we did from KC but I think it might  be better to leave int he morning, before b'fast. We are all just so tired and we need our sleep. Adam doesn't have off Wends, so it will be me, the kids, the dog, house cleaning and laundry. I'm exhuasted thinking about it.

I need a vacation from this...

Trip Highlights

*No one REALLY believed me that Cole hates road trips. Half way through our 11 hour car ride to Madison, my husband became a believer. We are dreading the road trip home.

*Upon arrival in Madison, WI, Cole smiled at me, coo'd and filled  his diaper... and onesie. As I was giving him a bath, I said, "ColeBear, is that what you think of liberal Madison? Are you a conservative Republican?" He smiled and coo'd back at me confirming that, yes, the Republican Dynasty is underway. Bring on the compound!

*Within 40 minutes of arriving, we heard the tornado sirens go off. The older kids and I just starrrrred at each other, not quite sure what we were hearing.Tornados? in WISCONSIN! I turned on the news and they are tornado and flash flood warning and watches in... well, I'm not sure where. We knew we are/were in Madison but not the name of the county or surrounding areas. Unless they said, "The tornado is headed right to YOUR HOTEL NOW" I wouldn't have know whether to head skipping down the Yellow Brick Road or duck and cover. It turns out that "duck and cover" would have been the best option. The storm ended up being right overheard. When we were at Uncle B's house, we saw lighting and heard thunder at the same time. We all jumped;I was surprised no one started crying. My SIL and her boyfriend waited out the worst of the storm before heading out and we all got soaked going to the car.

*Grandpa asked Boyfriend what he thought of the family. Boyfriend covered nicely. I snickered. This is why I am Boyfriend's Number One Family Fan. (Well, that, and he's the only one who can boss my MIL around in the kitchen and live to tell the tale.)

*To this moment, I am not sure how my BIL and his girlfriend got to the wedding. I know it involved a canceled flight, a flooded city, a cousin getting a rental care and driving. Lots of driving. They got there just a few hours later than they wanted and his girlfriend is a gem. A real gem. If it comes between BIL and his girlfriend, I'm keeping the girlfriend. She's a sweetie.

*Eggs are the debil. They make Cole cry. And destroy my brunch options.

*We are the old married couple amoung the cousins. And we're cool with that. As much fun as it was to be at the wedding and think about the day we got married, the stage of life we are at right now is more fun. Perfect. And I don't want to go back to the beginning but, rather, keep moving forward.

Summer Reading





There are so many fun and wonderful things to do

during the summer time with your kids.



This summer one of the things that I decided to do

with my child, Matthew, who has Agenesis of the

Corpus Callosum, is the summer reading program at

our local library.



Matthew is very fond of books and has always loved

looking at books and listening to me read to him

since he was a toddler.



I am a big fan of borrowing books from the library.

It affords the opportunity to read and enjoy so many

new books with your child without spending the

money to buy each and every book that you read.



Of course, there are always a few favorite books we

discover that Matthew loves to read over and over

and those are the books that I will gladly

purchase for him (new or used) and add them to our

own book collection.



Several months ago when I was researching information

for the ACC Reading and Comprehension document,

I stumbled upon a particular author who writes

children's books by the name of Karma Wilson.



So we borrowed some library books by Karma Wilson.

They are a big hit.



A few of Matthew's favorites are:





Bear Snores On by Karma Wilson



We love this book! Mama and Matthew both. The

rhythm of rhyme carries the story along and

gives an appealing catchy quality that keeps

Matthew's attention. The "bear snores on" is a

phrase that appears often on the pages. Matthew

will anticipate it and is always ready to add his

own snoring sound effects. He laughs often

through this book when "wee slurps" (deee-licious),

"big burps" and one enormous "achooooooo" abounds.

This is a very fun, interactive book to read with

your child.



Check out the cute video clip of the book...



Bear Snores On







Matthew also likes:





Sleepyhead by Karma Wilson



A very sweet bedtime story with a mantra that makes

Matthew laugh. Three words that even my child (who is

non-verbal) can convey when it comes to bedtime...



"Just one more"



I also pay close attention, while reading blogs, to

the books that other kids like. I have found two

very special books that are Matthew's favorites

this way.



The first book came from reading one of my favorite

blogs about "Bugg" who has ACC. His Mama showed a

book called Happy Mother's Day by author Steven Kroll

on her blog and that's how I discovered what turned out

to be one of Matthew's most requested bedtime stories:





Pigs in the House by Steven Kroll



This rhyming story about three pigs who make

a "great big pig mess" is amusing and very cute.




Thank you bunches and bunches, Bugg's Mama.



And one more story we adore came by seeing a

picture of the book on another favorite site of mine...





Sea, Sand, Me! by Patricia Hubbell



An adorable book about spending the day at the beach.

We actually took this book on our recent family beach

trip. It's a favorite book of Matthew's and one that

he chooses to read every night.



Take a sneak peek inside the book.




Thank you lots of bunches, Violet and Mahaela's Mommy.

Violet is nearly 4 months old and she has agenesis of the

corpus callosum.



We are still exploring books this summer from our

local library and I have a few new stories on hold

that I can't wait to get and read with my child,

Matthew.



Have fun this summer and enjoy reading.



Does your child have a favorite book?



From pre-school to high school...I'd love to know

what your kid's favorite books are.

Escape Artist

If you have small children you might read the title of this post and think "I know what you are talking about." However, if you have a child with Down syndrome...you might be right along with me trying to figure out what to do with your little Houdini.

Nichole is a runner. If there is open space before her, she will take off. I don't think she has any place in mind to go to, she just likes to go. We have even tried those cute little backpacks with a leash but she gets so mad about wearing them that it is better to just hold her.

The problem with holding Nichole (holding her in our arms or holding her hand) is that she has a superpower. Her super ability is what I call "noodling." It is best described by saying that all of her limbs can and will be transformed into a wet noodle and she escapes anyone's grasp!

Once Nichole noodles herself, she is gone, she takes off! Lately, she will try to the best of her ability to find "outside" and take off, and she will use "noodling" if she has to.

We are currently in Montana visiting Andy's family. Just a few days ago my mother and I were in the basement and she was helping me spray the girl's bed (night time accident.) We were in the room...I don't know, maybe 3 minutes? Nichole was dancing and singing to barbie princess and he Pauper but I realized I could not hear her anymore. I went to the family room and she was not there. I ran up the stairs hoping to find her in the living room or doing play-doh with her sisters...not there.

"Have you seen Nichole?" I asked Ellie while looking outside the window.

Right OUTSIDE Nichole was climbing down the curb and taking off running down the street! I am not a runner, but oh boy did I run fast! Yelling, "NOOOOOO!!! NICHOLE STOP!!!!!"

She saw me, but it did not face her. Oh did she get in trouble! She cried when she realized how scared I was, and I was scared, what if I had not checked on her? what if she had not been in view as I looked outside the window?

My little escape artist, one more nickname to add to the many she has had...

Where to begin?

Let's start with a Shameless Husband Brag:

Since September of last year, Adam has been swimming with a Master's program at our local Jewish Community Center. He's not athletic by any stretch of the imagination and I got him into swimming for exercise. He started doing it in college as, I think, a way to impress me. Normally he would swim a few thousand meters on his own and call it good.

At the JCC, the pool is closed over lunch 3 times a week for the Master's program. The coach suckered Adam into swimming with them and he's totally hooked. He went from wearing basic swim trunks to a Speedo. He went from the slowest lane to leading his lane in 300's. He can see ab muscle (I've told him this for a long time but he didn't believe me) and I am so envious of his arm muscle!

We're going to a wedding soon and he needed to have his suits taken in. The suits are nice, classic suits from his grandfather. He took them to Men's Wearhouse and they told him they couldn't take them in anymore! He had to buy 2 new suits because he's lost so much weight! He looks hot, has alot of confidence and energy and a fab-u-lous tan!

We went to a happy hour with the other swimmers last night and the coach was going on and on about how much he likes Adam and how much he's improved. It made me so proud to hear that. At the beginning of our relationship, I was the one into health and fitness and we've both improved our health so much since then (for us and our kids) that I can't help but smile. I want to be able to nag him for much longer! ;0

Of course, me being me, I need to pick it up a bit at practice and get faster. I can't let him beat me :) and we refuse to have the "sexy husband, fat house frau" picture so I need to move it. (I got my wedding ring back on last night so I might not have anything to worry about but ya know...)

Shamless Kid Brag:
School starts a month from today. We need to get Joseph's school supplies as soon as we get back from our trip. Not sure where summer has gone...

I took the kids to the JCC to swim at their little splash cove area. It is  like the one near our children's musem, only smaller. I can see accross the pool and keep an eye on all three kids at the same time. Oh, yeah, and since we are members, it is FREE!

Joseph mastered walking across the "lilly pads" after only two or three tries. I swear the balance from TKD has helped alot! The water was shallow but he still had to swim to get to the edge. Camille was practicing swimming around and did well.. I think she can swim 10 to 15 yards alone. If someone would help her learn to pull her arms out and breathe, she might be able to do that too!

Cole is reaching for things, grabbing at them and putting them in his mouth. He laughed for the first time the other day- for Joseph! Georgie is totally a daddy's boy and has been eating us out of house and home. He looooves our baby sitters and cries when they leave! He loves hugging on Cole, sometimes too much, but is still a silly guy.

Summer is, overall, going blissfully well.

ACC and Moms-To-Be #3 story



This is the third story about ACC and Moms-To-Be.

The third story was written as a letter last month
and given to me to pass along to a Mommy-To-Be
that I was e-mailing with who had just received the
news that her baby has ACC. The Mom-to-Be wanted
some input from other parents.

When I decided to create this new ACC and Moms-To-Be
section I asked the author of the letter if she would
be willing to share her letter, that was originally
intended for the "New Mom", here on the blog in the
hopes that it would have the chance to reach out and
touch even more new Moms.

Thank you, Trecia, for sharing your letter with
a lot more Moms-(and Dads)-To-Be.



"Dear New Mom,

First congratulations on your pregnancy I know you
are filled with hope and worry but I also hope that
you will be able to relax and enjoy this time until
your little one is born.

My name is Trecia I'm 48 and the Grandmother to Joel
David who is 21 mos old and has complete agenesis of
the corpus callosum c-acc. I'll try to keep our story
as short and succinct at possible.

My daughter Cassie was 21 weeks pregnant or thereabouts
when they noticed an increase in size of Joels lateral
ventricle on ultrasound, they monitored this for a few
weeks and noted a continued increase in the ventricle
size. I can't remember at what exact moment in the
pregnancy they determined that Joel probably had
hydrocephalus based on the ventricle size but at that
time they did an amniocentisis to see if there was any
genetic problem with the baby that would cause it.
The amnio results were clear of any other "problems."
Of course at this point in time we were filled with
worry and concern and the thoughts of all the things
possibly associated with a baby who has hydrocephalus,
seizures, shunting etc. Cassie had been referred to a
hi risk OB/GYN dr at this point and was seeing him every
couple of weeks. The Drs there told us many different
things, the hdro was mild the hydro was moderate, it
might not even be hydro boys often have big heads yada
yada yada. With each ultra sound we saw our baby boy
moving and sucking his thumb and we knew we loved him
no matter what.

At some point late in the pregnancy Cassie underwent
a fetal MRI and that was when we learned he had c-acc.
The Dr who conveyed this news acted as if it were a
death sentence and said to my daughter "Mom this is not
your fault". We sat in agony for 30 minutes waiting
for a neonate Dr to come and talk to us about this brain
abnormality. That Dr basically explained to us what the
corpus callosum was and said that Joel didn't have his.
He told us there was no way to determine to what extent
this would effect Joels life he said some people went
there whole lives never knowing they were missing their
cc and would do just fine. He also told us that there
were possiblilities for developmental delays and other
physical problems as well especially anything associated
with mid line as the cc is in the "middle" of the brain
often other organs that are in the "middle" of the body
are affected. We got the big "wait and see" talk
basically and that is what was the hardest, not knowing.

Joel was born vaginally without incident and spent only
a few hours in the special care nursery before going to
the regular newborn nursery and then home with Mommy,
Grandma and Grandpa two days later. They did an
ultrasound of Joels head while he was still in the
nursery and ruled out hydrocephalus, he never had it,
his ventricles were just enlarged as part of his acc.
Just a note Joel failed his newborn hearing screening
bilaterally, a lot of acc babies do. He later passed
his hearing tests.

Joel was a healthy infant for the most part he ate well
and slept well, sleeping through the night at five weeks.
He had a couple of ear infections and minor respiratory
infections though nothing serious. He always had a
snoring or gasping sound when he breathed though so when
he was a little older he had a sleep apnea test and a
swallow study which led to the removal of his adnoids at
about 15 mos old, when they did that they found Joel had
a mild sub mucous cleft palette (that's midline) like I
mentioned before, it was not serious enough to be of great
concern and they did no surgery to repair it.

Your baby will qualify for early intervention services
based soley on the diagnosis of hcc. Those types of
services include therapies such as physical, occupational/
developmental and speech. Some acc kids have low muscle
tone in different parts of their bodies and need therapy
to help strengthen those areas. You'll also meet a whole
array of Drs once your little one is born, he'll probably
be referred to a neurologist and should also be seen by a
pediatric opthomologist as often eye problems are present.
Also they may refer you to a genetecist. Joel started
physical therapy at around 6 months and he also gets
occupational therapy once a week and has just started
speech. Joel has been slightly developmentally delayed
since birth he hit his milestones a couple months later
than the "norm" but HE HIT HIS MILESTONES. That's
important to remember our acc kids get there sometimes it
just takes longer and more work on their part. There's a
book for children called ACC and Me and it describes the
lack of the super highway knows as the corpus collosum to
having to take back roads and side roads instead of that
super highway that is the CC. It just takes a little
longer to get there but the journey is much more
interesting and the final destination is the same.

I know you must be totally overwhelmed with all the
information being thrown at you but please don't
despair. We thank God every single day for the joy
that is Joel David. He is 21 mos old today and is the
love of our lives. He's a happy outgoing little boy
who is walking, dancing, climbing, (running his Grandma
ragged) etc etc. He recently graduated out of physical
therapy because he is doing so well and now we are
concentrating on speech, he knows some sign language
and is attempting to speak but isn't quite there yet,
we KNOW that he will though, when he's darn good and
ready.

I hope that hearing other peoples stories will help
you as you begin your journey with your little one.
I feel so blessed to be able to pass on to someone
else what the acc list did for me which was provide a
"family" of people who had been there done that and
who could offer advice and reassurance where often the
Drs cannot since acc is not a widely understood brain
abnormality. You will be your babies biggest and best
advocate.

I've included a picture of Joel in this e-mail because
as shallow as it might sound when Cassie was pregnant
I was worried about what "acc babies" looked like and
someone on the list was kind enough to send me a picture
of their perfectly adorable little boy and it comforted
me.

So I've about run out of steam here, I could tell you
cute Joel stories all day long but that would be way to
"Grandma like" and we wouldn't want that to happen."


Take Care,
Trecia Grandma to Joel David c-acc 21 mos old and the
love of our lives"



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 story?

If you do, please leave a comment below or you can E-mail me:
hope@aracnet.com

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
callosum.

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

Overheard: Abs vs Feet

Adam: I've lost five more pounds and I can see my ab muscles!
Laura: Bully for you. For the first time in two years, I can see my feet!

Never, ever brag about how easy it was to lose weight and how you can now see various parts of your body to a post-partum woman. Ab muscles? What are those?

ACC and Moms-To-Be #2 story



I received an e-mail on Monday from a Mommy who
expressed an interest in sharing her ACC story.
I was thrilled to hear from her and I am so excited
to be able to share her story here for you to read.

Thank you, Shawn, for taking the time to write your
own story from your heart and for your willingness to
reach out to other new Mommies and Daddies.




"My name is Shawn Ploe, and this is my experience in
finding out my son had ACC, Agenesis of the Corpus
Callosum.

Hell and Heaven - That's what I will say we went through.

Most times people start that statement with Heaven first.
but for this story it wasn't like that.

So to begin, I have type 2 diabetes, and have been since
2003. With my sugars being under control the doctors didnt
have a problem with me being pregnant. They just wanted
me to watch them carefully, which we did. I had the blood
sugar numbers of a non-diabetic person for my entire
pregnancy. The doctors and nurses made such a huge deal
about how proud of me they were. I trudged to that
specialty Endocrinologist appointment every 2 weeks
with numbers in hand. And they were happy with
everything that I was bringing them.

Then about midway through my pregnancy the ultrasounds
started. Its so funny, some women (even some of my friends
included) only got 1 or maybe 2 ultrasounds their entire
pregnancy if they were lucky. They all gawked at me because
I had one practically once every 2 weeks from mid pregnancy
on. I would bring in my little VHS tape and they would
record every little thing we saw. So in a way, I was spoiled.
Little did I know that they were doing everything they could
to find something wrong. But at this point I was blissfully
unaware of that fact.

So my pregnancy went along perfectly, until about the 28th
week. I was so happy to be pregnant, considering all the
problems we had had trying to get pregnant it was my dream
come true. Little did I know I was about to take a roller
coaster ride I would never forget!

Around my 25th week they had told me that one of my sons
Ventricles in his brain looked bigger than the other one,
but that they would watch it, didn't think they needed to
be worried at this point, and they blew it off.

Round about my 28th week I had an ultrasound and the Dr
told me he believed there was something wrong with my
baby boys heart. He sent me to a specialist. I was
absolutely petrified. I had yet another ultrasound at
the heart specialists office. He looked and looked and
looked. and then finally he looked at me and just said,
"Breathe". I exhaled, and he said, "His heart is fine.
There is a slight murmur. But there is nothing wrong."
I was relieved to tears. I sat up and cried my eyes out
while my husband finished up with the doctor. We felt
as if we had averted some great disaster.

Life returned to normal, and back to my appointments I
went. Well 2 short weeks later they again told me that
one of his ventricles looked bigger than the other.
My brain was screaming here we go again!!!! They had
me come back a week later to take a look at it again
and this time they wouldn't let it go. For 30 minutes
the ultrasound tech continued to scan over the same
spot while I laid there and watched my son do back
flips in my belly. I was alone for this ultrasound as
my husband was working. The ultrasound technician told
me she would be back in a minute, she wanted the doctor
to have a look. So I laid there for about 10 minutes
thinking that I had had about enough of them trying to
pick my little bundle of joy apart. Finally, the Dr
(I will call him Dr Gottabe, because in his eyes theres
just gotta be a problem!) came in and the Technician
started telling him where to scan. And then they started
arguing over my belly. And by arguing I mean they were in
a very heated discussion over top of me, as if I wasn't
even there. And they were spitting out all of these very
scary scientific terms that I had no comprehension of. I
was trying so hard to make a mental note of all of their
terms so I could look them up later, but they all ended
up a garbled mess in my head. Finally after they were done,
Dr Gottabe looked at me and said "Hydrocephalus" and I was
like, OK. Can you explain that to me? And he did. I think
I took it rather well. But after the heart scare I think
I was half ready to scream bull**** at Dr Gottabe! He told
me he was sending me for an MRI the next week to confirm
the diagnosis. I was thinking, A WEEK!? I have to wait a
week?!

So for a week I read up on Hydrocephalus, and cried, this
was all my fault, after all. I couldn't even make a kid
right (yes I know how silly it sounds now).

But the day finally came for the MRI and I was well armed
with my husband, who always knows how to make me feel
better about everything. So I had the MRI which might I
add is very difficult at 31 weeks. I almost passed out
several times for having to lay flat (don't they know
pregnant women should not lay flat!?) When the MRI tech
was done he helped me up and sent me on my way to put my
clothes back on etc etc. As I was going to the dressing
area I could see the scans on their screen and I was
craning my neck to see what they were looking at, as if
I could understand what all the different "slices" meant....
When I came back through, I asked them what to expect
now. And they told me, "Your doctor will have this
report in about 10 minutes. Call him." I was so thankful
for that little piece of information because I did not
want to wait forever for Dr Gottabe to call me, to find
out the result!

My husband and I stopped at a Wendy's near the hospital
to have a quick lunch. I was immediately on the phone to
the Dr Office. and all I was getting was a recording.
Over and over again, I started to panic. I finally left
a message that was something to the effect of, "I would
really really really appreciate a call back today as I
do not believe that it will be conducive to my mental
health if I have to wait through a whole weekend to get
these test results!!!" And there I was crying in the
Wendy's. Hell I didn't care what those people thought.
I just wanted some sort of resolution.

So my husband and I parted ways, back to work for both
of us. I will never forget sitting in my office at my
desk when I got the call from Dr. Gottabe. He called me
himself, not a nurse, but him.
"Mrs. Ploe? This is Dr Gottabe and I have your test results."

"OK thank you for calling me back I really do appreciate
it", I said.

"Well there is good news and bad news. The good news is
that it is not Hydrocephalus. The bad news is that it is
Agenesis of the Corpus Callosum."

"What does this mean? What is it? and how do you spell
that!?", I asked.

"Well it means that the bundle of nerves that connect the
right and left sides of the brain is not there. it did not
form. Sometimes it can be partial, but in your child's case
it is absent all together."

I started to cry, "What does this mean? what are we looking
at? Mental Retardation? what?"

"Well, that's just the thing, we don't know. We cant tell
until he gets here. He could come out perfectly fine, or if
he has other syndromes or problems it could be worse. There
is no way of knowing", he said to me.

At that point I had gotten my husband on a conference call
so he could hear everything as well, and I let him ask the
questions because I couldn't hear anything anymore. I was
gone. I was twisted inside myself, that's the best way to
describe it. I went between searching the Internet for
everything I could find, to crying so hard that I felt numb.
The Dr. had told me not to worry everything would be fine,
and all I could think of was that he was crazy and it must
somehow be his fault. He had searched and searched and
searched to find something wrong with my kid and he
couldn't stop until he did.

I scheduled an appointment with my regular OB hoping to
find some sort of solace or maybe even more information.
When she walked into the room I just burst into tears,
she hugged me and told me she was really sorry that things
had gone down the way they had. but that it would be okay.
I clearly remember asking her, "Now what?!" She basically
said we wait. That I was going to have this baby and then
we would see what we needed to do on the other side of
that. Somehow she helped me to see that it was what it
was. I couldn't do anything about it, so march forward.

For a week I cried I went to work every day, and all I
could think about was ACC and my baby. The last month
of my pregnancy was sheer torture. I went through the
motions but I just wanted it to be over. I wanted things
to progress so we could access our situation.

Then, after about a week, I ran across a guy on the
Internet named Kyle. Kyle was in his 30's with ACC, and
incredibly he had only known about it for 2 or 3 years.
I was intrigued. I emailed him and told him my situation.
I wasn't sure what i would get back from him, or if he
would respond. Imagine my surprise when he did. He told
me that he had basically gone into the doctor for stress
related headaches thinking their might be something wrong.
The Dr. helped him with the stress related headaches and
then told him something so profound that it changed his
whole life. He had gone his entire life thus far without
knowing that he had ACC. And that he should be proud of
that. By talking to Kyle he helped me to see that no matter
what, not only was my son still going to be my whole world,
he was going to be this special unique kid. And that there
was lots of support out there and everything would turn out.

So from this point on, I started to relax a bit. The ball
in the pit of my stomach started to calm itself and I let
go a bit. I think this is about the time I finally looked
up to God and said, "This problem is yours, do with it
what you will". I also know that we were on many prayer
lists. Literally thousands of people had our names in
their prayers. This helped a bit more.

Around this point I had gotten uncomfortable, and I was
joking with people telling them that I was serving an
eviction notice. This baby was getting OUT! Everyone
thought that was funny.

So, on February 14th I went in for an amniocentesis.
Dr Gottabe said that if the fluid was clear he was ready
to be born, if it was cloudy we would have to wait another
week. Yipee the fluid was clear! We celebrated at the
Cheesecake factory that night with my Brother and his
girlfriend (one of my friends). We had a nice Valentine’s
Day dinner, and then went home to try to get some sleep.
If I had a penny for every time I had to get up in the
middle of the night Id be a rich woman!

February 15th I went to the hospital and they prepped me.
Ohh boy, what a mess I was for this! And to top it off,
my c-section gets bumped for an emergency, so I wait
while they do the procedure to someone else, and then
re sterilize my procedure room. I will never forget my
son’s birth, I believe it was the most eye opening
experience I will ever have. That whole TV scene you see
where they just pop the baby out.... NAH that's not how
it happens!

They took me into the room where the procedure was going
to happen and I'm pretty sure my heart started to skip
some beats from nerves. They had me sit on the table while
they continued to lay everything out. My mind was going
about a million miles a minute. My husband was not allowed
to be there for the epidural, umm hello?! Not good for my
nerves. So they had me sitting on the table and they told
me they were going to do the epidural, and I start to cry.
And they were trying to calm me down. and I will never
forget the guy that was in front of me because he hugged
me. and he patted me on my back and told me "Miss
everything is going to be alright." and I thought to
myself, ohh dude, if you ONLY knew! He was the kindest
most gentlest man, and if I could ever thank him for his
compassion it would be a high point in my life.

Back on track - Epidural was in (I think they did a spinal
too). All I remember is them telling me it had to go
straight down my spine so if I felt it hitting the left or
right side of my spinal column i should just say left or
right. So the whole time, I yelled, "LEFT LEFT LEFT LEFT
LEFT!!!" and the lady kept saying, "I can’t get anymore
right!!" I was thinking, I'm doing what you told me to!!

A few minutes later....

Yippee they were pinching my legs and I couldn't feel a
thing. But I was still crying, they laid me down and my
blood pressure started to quickly drop. And the whole
room spun around a bit. Right about that time my husband
walked into the room and was wondering what the heck was
going on. They finally got my blood pressure straight and,
there he was, sitting at my head. This man is my whole
life and I am so blessed to have him. But I was still
bawling my eyes out with fear. My OB came in and she took
one look at me and said, "why are you crying?! do you want
the first thing your kid sees to be his mother bawling her
eyes out?!" Nice try Doc but that isn't working on me! So
they started the procedure. Now I will be the first to tell
you that I am not one of these women who thinks that they
have to have a baby naturally. Nope! I had to have a
fibroid removed when I was younger, and this ensured that
I should have a c-section and I was perfectly happy with
that! So the c-section suited me just fine, but I was still
scared of being awake while they were cutting me open and
rooting around inside my body!

So happy joy I didn't feel the incision! and then they
started squeezing me like a tube of toothpaste. I mean they
were pushing so hard the table was moving. I was like,
"Umm this is NOT what I have seen on TV" And everyone in
the room just thought that was hysterical. I'm here to tell
you that Television has it all wrong! So they started pushing
just below my sternum and they squeezed this kid right out
of me like you put your toothpaste on your brush. Weirdest
experience I ever had.

And then I heard it, my Son’s first cry. And I watched as
they took him over to check him out, AP GAR blah blah blah.
And the words out of my mouth were, "Is he okay?!" and my
husband said, "he is fine hun, why do you ask?" And then
came the drugs. As soon as that baby was out of me they
were pumping me full of some sort of high octane cocktail.
If they had asked I could have told them that I'm a cheap
drunk, I'm pretty sure they could have cut whatever it was
in half and saved us some money! But dang I was a mess. I
started watching the time on the little table they were
using to check him out. it had started counting up the
minutes since he was born. and somewhere in my drug
induced state I realized that I still hadn't held my baby.

The nurses invited my husband over, "Dad, would you like
to hold your baby?" My husband looked at me as if to ask
if it was okay?! I sort of flipped my hand in some way
that must have indicated to go ahead. And then I saw the
most beautiful thing ever, the two most handsome guys in
my life together for the first time. I could really see
my son now. He was this beautiful baby boy. He had this
head of dark hair and I fell in love.

Sometime later I remember them rolling me into recovery,
and finally after 45 minutes on that little clock on the
table, I was able to hold my son for the first time. Yes
it was 45 WHOLE minutes before I could hold him!!

Here is where Heaven finally kicked in, for a minute.

It came back later the next day, but only after I was
so sick for an entire day from the cocktail that they
had pumped into me.

About 4 hours after he was born they took him for the MRI
to confirm the ACC Diagnosis. All of that is a blur to me.
I remember a geneticist coming in too, and telling us that
the only thing that he could find wrong with our son was
that his nipples were a couple of millimeters farther apart
than most kids. Of course as new parents we were freaking
out and asking what this meant. Dr Geneticist smiled at us
in that knowing way and said, absolutely nothing! He looks
great. RELIEF!

We met the Dr who is our baby's Neurologist for the first
time while we were in the hospital. He confirmed the ACC
Diagnosis, but also said that he couldn't find any other
problems. And that our son looked normal and healthy. To
just go with it. Treat him like you'd treat a new born.
and then the words that he spoke to me that were so
powerful I still get chills when I hear them today is
that, "The brain is a very powerful organ." It has the
ability to do so many wonderful and amazing things.
And that is so true.

Our son is 3 years old now! and he is absolutely perfect
in every way. He loves soccer and basketball (really all
sports). He has had some slowed speech issues (mostly
articulation) but this has allowed us to make some
wonderful friends in speech therapists. And they have
really helped him come a long way (along with a Frenectomy -
he was tongue tied). He is the most outgoing kid, and he
has met and exceeded every one of our expectations so far.
His Neurologist is in awe of how wonderful he is doing.

I think back to that scary diagnosis and everything we
went through, and I know I would do it all over again
if it meant I would have my son to hold.

To parents who are going through this right now, please
know that there are others who are going through and
have been through what you are. Doctors don't always
have the right answers, and they certainly don't handle
every situation with wonderful tact. But there is
information about ACC out there, and it is growing.
Find it, arm yourself with everything you can. Join
the forums and learn from other folks who are walking
this journey with you.

I don't post a bunch on the forums, but I read a lot.
I try to reach out if I think I can help. And I am so
thankful to have all of these wonderful folks, like Kyle,
and Araminta (another Adult with ACC from the forums)
who give me hope and inspiration that my kid can live
a great full life, despite ACC."



3 year old Connor

You can see more pictures of Connor and his family
at Connor's Mommy's Blog

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 story?

If you do, please leave a comment below or you can E-mail me:
hope@aracnet.com

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
callosum.

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