Be a Part of Something Bigger!


There are around 143 million orphans in the world today.

Every 2.2 seconds an orphan ages out of the system and are left in the streets. With no family to call their own, with no place to go.

Children with Down syndrome and other special needs are sent to institutions at age 4. Even pets in America have a better life!

Kirill, the little boy you see in the picture, is one of the 143 million orphan children. And the woman holding him? That is his mother, Tesney Davis. Tesney and her husband have been denied their request to adopt Kirill. And why? Because he has Down syndrome. The Hook family and the Moreno family are also in the same region, facing the same judge, and most likely the same answer. No.

In the Down syndrome community, adoption community, and Reece's Rainbow community, we have gathered around them in prayer, as we ask that God will change the judge's heart and say yes. It is heartbreaking to think that 3 different families might loose their children. Weather someone officially makes them a Davis, a Hook, or a Moreno, these 3 families will forever see these children as theirs. God gave them these children to love, and in their hearts, they are no different. So they are doing what all parents will do in order to save their child. They will appeal to the courts, they will try to get government and media involved. They will do whatever they can in order to get their children home...because that is what parents do. We do not give hope, we keep on going, and we try again and again if we have to.

And then I think about how lucky these 3 little children with Down syndrome are. They have someone fighting for them! They have someone that will stand up and challenge the brokenness of this world in order to bring their children home!

But... there are still 143 million orphans left.

Nobody is fighting for them

Nobody aches with love for them.

Nobody that is willing to challenge this broken world because they believe they are worth it.


Nobody to wipe their tears.

Nobody that will make them their own.

This is not just sad, this is not only heartbreaking...this is unacceptable!

Why are we standing on the sidelines! Why are we allowing these children to rot away in institutions and orphanages!



 Why are we not moved to action!

You don't have the money? Really? Is that what will keep you from saving a life? Is a child not worth more than a car? Is a child not worth a bank loan? Is your child, not worth any price you have to pay? Is the cost of adoption worth a life wasting away in a crib. Is it?

Are you afraid you will not love them as your own? Can you at least love them more than the sterile environment they will die in? Can you at least give some love. You don't think it will be fair to love them less compared to your biological children? Look at that picture, is that fair? Can you not give more than that? Sure, there will be bonding issues, sure there will be behaviors to deal with, but is it not worth it? What child is not worth fighting for?

They are worth the tears.

They are worth the frustration.

The love that grows from the trials of adoption, is a hard eearned love, and it is a love that will change you! It will expand your heart.

143 million orphans

What is your role to play?

Pray.

Give.

Go.

Be a part of something bigger than yourself. Be a part of God's movement to save his children.

Pray for the Davis, Hook, and Moreno family.

Pray for the 143 million orphans.

Give to the families that are adopting, because money is not and should not be what keep anyone from adopting.

Go. If God leads, He provides. If you feel called to adopt, it is time to take action, it is time for you to go get your son, your daughter. Do not allow one more day to go by where your precious child has to spend a day lying in a crib, their days wasting away.

Our sweet Nina was one of those orphans, but she is home now, she is safe.

These are God's children, and He is looking to us, asking us, "Will you take one of my children?"

We are God's hands, we are God's legs, we are God in this world. So if we are not doing something about this, nobody will. Will you?

You call follow the Davis and Moreno blog, just click on their names.

You can visit Reece's Rainbow and learn more about adopting a child with Down syndrome and other special needs.

And you can follow Reece's Rainbow on twitter, because Patricia Heaton (Everybody Loves Raymond) is donating a dollar for very person that follows Reece's Rainbow on twitter. She gets it, she is making a difference with her public voice.

And please take the time to watch this video. Be moved.

Marching for PuddinPie

Georgie has challenged everything we have known about parenting.

From before he was born, there was  MORE. More pain, more problems, more weight gain. When my water broke at 35 weeks, we were thrust into the unknown: PPROM, induction, antibiotics, a NICU transfer team, the NICU.

Georgie was a "late term" preemie. Late term babies are born between 34 and 36 weeks of pregnancy. Although their situation is generally not as critical as traditional preemies or micro preemies, they still are:

•6 times more likely than full-term infants to die in the first week of life (2.8 per 1,000 vs. 0.5 per 1,000)


•3 times more likely to die in the first year of life (7.9 per 1,000 vs. 2.4 per 1,000)

A child's brain at 35 is not completely developed. Because of this, they face an increased risk of learning and behavior problems. As with all preemies, they also have a greater likely hood of showing autistic symptoms and needing speech, behavior, OT and PT therapies.

(Information here)

Late term preemies ARE a problem. In fact, they as a cohort account for the increase in preterm births. In fact, they account for 70 per cent of premature births. We can no longer say that the delays some LTP have are temporary or benigin. In fact, the scientist in the previous link suggests that LTP would also benefit from follow up care- something I've been saying since Georgie was a baby!

In a month, we will meet up with our friends from the NICU and march for our babies. The March of Dimes is working to prevent preterm birth and help all preemies, even late term preemies like Georgie. And won't help them help babies like my sweet PuddinPie?

The Greatest Gift?

Last summer Adam and I were at a get-together for his swim team. I took Cole with me and we were chatting with a man who has nine brothers and sisters. Yes, his parents had TEN kids! And, yes, they are Catholic.

"You know, though, you've given them the best gift, right?" he said referring to our children.

"Each other?" I guessed and he nodded.

It's stuck with me since then. See, I don't think the best thing you can give a child is a sibling. Why? Well, what if you CAN'T. What if you want to have another child and can't? Have you jipped your kid on something?

No.

But what if you do? What if you have lots and lots of babies? What if your kids of tons of siblings? Are you setting them up to be happy, well adjusted and good with babies?

No.

See, I don't think there's anything wrong with having one child. I understand that the parents might feel pain and suffering from wanting something they can't have. I get that. I understand that there are sibling interactions that only children, even those with oddles of friends and playmates, cannot have.

As I tell anyone, there are pluses and minses to having one child and to having multiple children. I can't tell anyone what is right for their family since I am not in their family.

But the greatest gift? I don't know. It's no secert that my siblings and I aren't buddy-buddy or besty friends. We get along "eh".

I look at my children and of course I think about my childhood and my brother and sister. I think about how they shaped me. The family I created with Adam is much different from the family I grew up in (4 kids in 5 years, each set less than 2 years apart vs 3 kids in 8 years, all four years apart) so I can't even wager a guess as to how my kids will interact with each other.

I've been looking at Georgie and studying him lately, thinking about what the future holds. What will my kids think of all the "special" foods he has and "special" attention from therapists? What will HE think about it? How will they view him when they realize he needed more, so much more, than they do?

I'd like to think that Joseph will take out anyone who dares mess with George. He loves his little brother and is so kind and gentle with him. I'd like to think that Camille will never let Georgie get away with anything and will push him to talk. And that Cole will be there, along for the ride, adoring his big brother because every big brother needs a fan club.

The truth is, I don't know. I do know that Georgie is a wonderful gift to our family and that God knew EXACTLY what he needed when He sent us Cole, just 16 months after Georgie. I know that growing up as the oldest of the youngest set is perfect for OUR special boy and that is just what OUR special boy needs.

Are his siblings the greatest gift we have given him? I don't know.

I hope so.

'I'm happy'






















The two-hour session to craft a bit of a vision for Ben's future is coming up.

We're using a tool called Passport, developed by Community Living. I like its concepts. Sections include My Story; The Suitcase (the positive qualities the person brings); The Scroll (current supports), The Globe (the person's dream of what a good life will look like); The Yield Sign (barriers); An Action Plan; and The Road (the people who will offer support).

I want Ben to contribute to the discussion so thought I'd set up these sections on his communication software on the iPad.

Recently, Ben has made it clear that he's not interested in using the Proloquo. He's deleted the software a number of times and when encouraged to use it, says "it's boring." After all my efforts to get this functional, I think I need to rethink his options for expression.

But yesterday, I realized the Proloquo may be a neat way to have him contribute to the planning day. I created a "My story" category and asked him: "What would it be important for people to know about you?"

"I'm happy," he signed. So I typed in 'I'm' and he typed in 'happy' and I asked him to choose a photo that would go with this description.

He immediately clicked on the pic above of him fishing at camp.

I know he's not always happy, and his disabilities cause him great frustration and anxiety. But my heart lightened thinking that he still views himself -- overall -- as a happy person.

Maybe this process will yield other surprising results.

What Did He Say?

Today Nina and I had a full day at Mayo Clinic in preparation for her Selective Dorsal Rhizotomy. Her surgery is less than 3 weeks away. April 15th will be here before we know it!
To start the day, we met with the Physical and Occupational Therapists that will be working with her after her surgery and while we do intensive rehab work. They measured her range of motion and taped her walking with her braces and without them. Since they will be the ones to work with her after the surgery, it is important than they "feel" the before and after.

Next, we toured the rehab facility where Nina will be living for 3-5 weeks. She will have 3-4 hours of rehab work per day depending on how she is doing and how well she cooperates. This will be quite the time for our family, as we also have to pack up and get ready to move (more on a later post!)

We quickly met up with some friends at Mayo. Another little boy with power wheels!

After lunch, Nina got to take a pre-surgery class where she got to play with a doll and listen to the story of what will happen when she has her surgery. I think this was fantastic for Nina. I wish we had been informed of this option before she had her tonsils and adenoids out, and even before we did the last MRI.

During this class, Nina got to play with a stethoscope. She put it in her ears, and listened to her own heart. She was very quiet, and listened very intently. She listened, and she listened, and I could see in her face that a lot was taking place in her little mind. Eventually we had to ask her to stop so that we could continue with the role play and story.

"Did you listen to your heart Nina?" The teacher asked
"Yes, I did" Nina responded, "I could hear my heart... and I heard Jesus, I heard Jesus in my heart."

Both the teacher and I paused. Talk about a sweet sweet moment!

"Did he say something to you?" I asked
"Yes he did" Nina said
"And what did he say?"
"I love you Nina" She responded with a small whisper of her voice.

And I tried really hard to keep all the emotion in, because she is loved by Jesus, loved so deeply!"

"Well..." the teacher responded, "I think we just witnessed a religious moment right now"

I agreed it was a special moment, and I do wonder if Jesus does reveals some things to children, who have an open heart and ears to hear Him whisper "I love you."

After the class, we needed to pick up a script for Nina's prescription (medicine she needs to take for her rhizotomy). And wouldn't you know it, I saw a little boy with beautiful almond shaped eyes sitting on the floor. Of course I was immediately drawn to him, and his mom and I quickly began talking, because you know, the extra 21st chromosome brings us together. It is an extra family, and we have an instant, powerful bond that brings us together. Although Nichole was not there, I showed her off by pulling out her picture form my purse.

But that is not all! Little J was there along with one more friend! So I got to meet 2 beautiful little boys with Down syndrome and their mamas! And I liked them all right away! It doesn't take long to exchange e-mails and phone numbers when that extra chromosome shows up.

It also turns out, Nichole is not the only rascal out there. Now I am wondering if rascal activities are common in Down syndrome, for it cannot be coincidence that the nickname is the same!

Finally, after waiting for an hour for the prescription, we came back home.

Two pet rats -- and one syndrome

A delightful children's book landed on my desk today. It's called Melanie & Tommy have two pet rats and one syndrome.

It's narrated by Tommy, 6, and follows his adventures with sister Melanie, 9, as they push their pedal car around their Ontario farm and rely on two pet rats to get them out of trouble.

Tommy came up with the book idea when friends made fun of his sister, Melanie, who has Cornelia de Lange syndrome, a genetic condition.

Listen to this CBC radio interview or visit the family at http://www.2petrats.com/.

And that sums up my week

Tonight I took Cole, Georgie and Cami to Whole Foods to buy some dairy free items for Georgie. We made it through the stores- and samples- in one piece and slipped easily into the check out lane. I loaded everything up onto the belt.

It was then that I realized my wallet was in my car.

Yup, that about sums up my week!

***

We got off to a rough start Monday. After a week and half of waking up every morning and playing the Wii, Joseph was NOT happy about not playing it before school. We had much whinning, crabby and gnashing of teeth on our walk to school and it wasn't just the kids. I guess I looked pretty rough because I had several moms ask me if my day had gotten better. Ah. Ops.

On Tuesday. Georgie's SLP came out. Afte hinting around about it for several weeks, she came out and said that Georgie  needs to get off diary. She recommend casein and gluten too but my house is a giant gluten-free person's nightmare. There are cheerios and pretzel crumbs on the floor everywhere and ground into our carpet, not to meantion under the booster seats, in the car... yeah, and then people begin talking about mixing flours and additivies to baked goods... and the fact that three gluten free bagels are 12 dollars... I am not doing gluten now. Nope.

So the kid, for all intensive purposes, is dairy free.

I won't do soy for him, so I bought almond milk. I found some in plastic jugs which he calls his "ba." All well and good- he knows it belongs to him. When I put the cow's milk jug on the counter, he flipped and was highly annoyed at me when I gave him his almond milk. After pitching a fit, he drank it.

We're dealing with more whinning, temper tantrums and things lately. Part of it is him being TWO and a large part is the whole non-verbal deal. I'm tired and fustrated too because not only am I trying to deal with him, the older two kids have Mouth and Attitude going on. Cole is trying to climb steps. He can get up one and then can't get down or he climbs the step to the bathtub and then falls! Of course, he gets back up and does it again and again... thankfully, our bathroom has carpet!

Yesterday I got a general mass e-mail from the school district. It had a message in it about a new open house for children with special needs and opportunities for them in the community. It specifically meantioned ASD, speech and other disorders. I know I need to go and network and get more information.... but I don't want too. I had a really rough week emotionally, going between anger, fustration and sadness. Part of it was brought on by Adam meantioning that the drs at the NICU said, "I know he looks big but he is very sick" when Georgie was admitted. That's totally different than what I was told- Oh, he's not sick.

And then, you know, there were no follow ups. Everything he's needed I have had to pursue on my own. It SUCKS. I know there are so many more kids, preemie or not, that have so many more issues that we face. But, again, those kids aren't MY kids and I am not their mother. I felt like I was told time and time again that there would be nothing wrong with Georgie, even though my research showed an increased risk for certain problems. I swear, though, if I get blown off over anything to do with his speech or sensory junk, I am going to be HIGHLY annoyed.

So, now we start with this whole dairy free nonesense and I have to remember to grab the almond milk for him or not give him a cheese bagel at Panera (after Lent). I have to chose if I just let him have mac and cheese at his grandparents or remember his own food. I think I spent about 4 dollars apiece on two bags of rice cheese that is supposed to melt like normal cheese. The coconut milk yogurt was 3 dollars for a small container and I'm not sure he'll like it! I think I'll use it for Cole if he doesn't eat it. Honestly, this dairy free, mucus free shingdig had better work and his first words need to be "thanks for the expensive food mom and dad!"

Needless to say, I think everything is dumping down on us at once and I'm just hanging in there. I hope this weekend is easy and relaxing because I don't have much energy for anything. I have a massive headache and just want to rest. But after this week, I feel like  my wallet is permantly out in the car only I can't run out to get it.

Gifts, Again

41. Three new baby boys born this week to people I have known since high school- or longer!

42. Shoes in the mail. Yes, my new shoes finally arrived!

43. Diapers in the mail. Nothing beats not having to run to Wal-Mart AND a 20 per cent off coupon for Amazon!

44. A cleaner house.

45. A message from God being dropped directly in my in-box- more on that later.

46. A sleeping baby boy on my chest.

47. Cole's new gift of mobility. He's a determined little bugger.How many kids are willing to try and crack their heads open again and again?

48. Snuggling with my Princess.

49. Warm spring days

50. Moms Night Out!

17 years tomorrow

Wholehearted
















I've written recently about parents who take planned breaks from caregiving as a means of respite and regeneration.

Today, a mom at Spirited Blessings posted about her own retreat, which included watching this video The Power of vulnerability. In it, University of Houston social worker Brene Brown talks about how her research into shame led to a surprising discovery: people who embrace their vulnerabilities believe they are worthy of love and belonging.

Among people who have a sense of worthiness -- as opposed to those who never feel 'good enough' -- she found these common attributes: they had the courage to be imperfect; they were kind to themselves, and then others; they were willing to let go of who they 'thought' they should be in order to be who they were; and they believed that what made them vulnerable made them beautiful. Vulnerability was seen as a necessary way of life.

These findings, Brown says, were in stark contrast to her belief in the ability of science to 'control and predict.'

When talking about courage, Brown uses the original definition (when the word first came into the English language from the Latin word coeur): To tell the story of who you are with your whole heart.

People who believe they are worthy of connection she calls wholehearted.

I think this has interesting implications for how we view disability, which is a visible form of vulnerability.

Pediatrics article: How to get a copy

The editor of the Pediatrics article has told Barb that anyone can e-mail her to ask for a copy, and she can send them a PDF. So ... if you would like to read this journal article about the ethics of heart surgery in infants with Trisomy 18, please e-mail Barb at:

anniefarlow@gmail.com

Thanks! Louise

Mothering and Down Syndrome

Nichole at 7 months old...my little angel!

I came across this quote recently thanks to my friend Cary. I loved it, and in light of my last post about how Nichole has changed me, I thought it was timely. And I agree, Nichole is My Teacher of Life.

“Motherhood is about raising and celebrating the child you have, not the child you thought you would have. It’s about understanding that she is exactly the person she is supposed to be. And that, if you’re lucky, she just might be the teacher who turns you into the person you are supposed to be.” ~The Water Giver

Should babies with Trisomy 18 be treated?















Many of you remember our interview with Barb Farlow, who lost her baby daughter Annie (above), who had Trisomy 13, after she was rushed to hospital in respiratory distress. Barb later read Annie's medical records and learned a "not for intubation" order had been written without consent.

This month Barb co-authors a fascinating article in Pediatrics -- the official journal of the American Academy of Pediatrics -- that address the ethics of offering heart surgery to the parents of a baby with Trisomy 18. Most children born with the condition die in the first year of life.

In An Infant with Trisomy 18 and a Ventricular Septal Defect, Barb and two North American neonatologists respond to questions about whether heart surgery should be offered and, after a surgery results in complications and the child can't be extubated, whether life support should be withdrawn over the objections of his parents.

The article concludes with these comments from Editor Dr. John Lantos:

Cases of trisomy 13 or 18 highlight an area of deep disagreement. Most parents would not want an infant with these conditions. Many of them are grateful for the prenatal diagnosis that allows them to terminate an affected pregnancy. Others choose a different course and either forego prenatal diagnosis, or, as in this case, use the information to make decisions about obstectric and neonatal care. Doctors are similarly deeply divided; some feels that aggressive treatment is futile and should not be offered, and others defer to parents. Drs. Okah and Janvier reflect this professional disagreement. Ms. Farlow speaks for the parents who come down on the side of treatment. These cases raise the most fundamental questions about the value of life, the meaning of personhood, and the limits of parental and professional authority. Deference to parents is generally the right course unless the infant is clearly suffering from ongoing treatment that is unlikely to be of benefit. The doctors in this case did the right thing: they worked to find common ground. As often happens, the infant surprised everybody.

Read the article and tell us what you think. Louise

Transition update and links

Ben went to see a pediatric dentist at our children's hospital because he needs work done under general anesthetic (teeth extracted, cavities filled and teeth cleaned).

He's turning 17 this weekend, and after setting the surgery date in April, the dentist was quick to point out to my husband that "we won't be seeing him again after that."

It seemed a little premature, since he won't turn 18 for a whole year. That's when he's no longer eligible for pediatric services. The generally comprehensive, one-stop services we've come to rely upon will evaporate. Parents and youth with disabilities have likened it to falling off a shelf.

Over a decade ago, a major Holland Bloorview study showed a disturbing transition into adulthood that puts youth with physical disabilities at greater risk of developing secondary health conditions. After high school, the study found teens with disabilities were unable to get a job or continue their education, became isolated and sedentary, and couldn't find a doctor who understood their disability.

The LIFEspan clinic at Toronto Rehab was created to smooth the medical side of this transition. It gives young adults with disabilities a single point of access to comprehensive services from a nurse practitioner, a physiatrist, occupational, physical and speech therapists and a social worker. Unlike the "in and out" model of acute-care, the LIFEspan clinic recognizes that youth with childhood disabilities will need specialized, ongoing care throughout life.

But right now services at the clinic, developed by Toronto Rehab and Holland Bloorview, are limited to youth with cerebral palsy and aquired brain injury.

What was your experience like moving from children's rehab to adult services?

Here are some interesting links.

NJ to propose $10,000 annual stipend for families taking care of adults with developmental disabilities.

Paper cuts.

And you may remember the Gort family, who have two children with disabilities. Mother Gina went on a 10-day retreat on her own, as a form of respite. Now her husband, Tim, is taking his own respite, hiking to the top of a mountain at Great Smokies National Park. This family is setting the standard, I think, for what all parents of children with disabilities need, but struggle to get.

I can't wait to hear Tim post about his experiences! Louise

Down Syndrome Has Changed Me


Dear Nichole,

When you came into my life, your diagnosis of Down syndrome threatened to crush my heart. That tiny extra 21st chromosome seemed too powerful for me to stand up against. I cried constantly, and I feared our lives would be covered with limitations. I wanted to wake up and find that you were a "normal" baby, that Down syndrome was only a part of a bad dream. But it wasn't a dream. You almond shaped eyes looked straight at me. Then one day, I thought you were looking not just at me, but straight into me.

I don't know how to describe this to you, so I will do the best I can. It was as if I had been dreaming for most of my life, and then you came in and you woke me up. Love, joy, and peace became almost tangible. I felt as if my eyes had been opened to the real things that matter in this world. Maybe I simply had a "weak heart" and then you showed up ready to fix it.

Not only did you awaken something inside of me; you changed me. God, using you, a little baby girl with Down syndrome, to touch the places of my life that needed to allow Him in.

I look at you now, and  Down syndrome, although it does not define you, is something in you that I cherish. It is something that I celebrate. I would not change a thing about you. Every single chromosome you have is absolutely perfect! You are exactly how God intended you to be, He created your inmost being.

Today is World Down syndrome day. Thanks to you, I realize the significance of this day because I know that Down syndrome is something to be celebrated, something that we could all use a little bit more of. I wish I loved more like you, and that I gave my hugs as freely as you do. I wish I celebrated others with the same excitement you show. I am blessed to have you my sweet girl.

Happy day to you my little rascal, and thank you for making ours happy because you are you!


Author of 'Welcome to Holland' speaks

Ellen at Love That Max has posted an interview today with Emily Perl Kingsley (left), who wrote Welcome to Holland in 1987 about the experience of giving birth to a child with a disability.

Emily's son Jason (right), who has Down syndrome is now 36.

"Savor whatever experience you are fortunate enough to have," she says. "Make the most of the hand you are dealt. Try to find beauty in each day if you can."

Ellen's interview with Emily is worth a read. Louise

World Down Syndrome Day

The IDSC (International Down Syndrome Coalition for Life) has put out a beautiful montage to celebrate World Down Syndrome Day, which is always March 21. Why March 21? Because it is 3/21 and people with Down syndrome have 3 copies of their 21st chromosome :)

Take a close look, because you will see Nichole's sweet face in the montage, along with many of her sweet friends.

Lenten Failure or St. Joseph's Success?

Enter to win free soup!

(If had brain cells, I would engage everyone in a discussion on whether or not one could actually fail at Lent and if Sundays "count" for Lenten fasts.  I don't, so I'm writing this instead!)

For Lent, I gave up sweets and general junk food. Some people say that Sundays don't count for Lenten sacrifices since every Sunday is a mini-Easter. What others do is their busy-ness, but, for me, I can't go back to having creamer in my coffee or tons of cookies for one day and then go back to nothing the other six days. It's easier for me to go cold turkey and just keep it up. Plus, I want and NEED to loose weight, so I'm keeping at it.

Well, yesterday was St. Joseph's Day. We luuurve St. Joseph. Not only am I Italian and Italian's luuurve St. Joseph, we have a Joe in this house and multiple people we love named Joseph or Josephine. Plus, I mean, he's one cool dude. Out of all the people in the world, he was hand-picked to be the earthy father of Jesus! Now that's a heady responsibilty.

Our parish always has a St. Joseph's table and I love looking at it and seeing the cookies. Although I did not grow up near my large Italian Catholic family (nor did I grow up Catholic but that's another post) but something about it reminds me of my nana. I think it's the cookies.

Nana always bring us cookies from a local bakery when she visits- cookies with pine nuts, jelly, and seven layer rainbow cookies. Think "Cake Boss." We love these cookies and the familiar white box with striped twine that holds it all together. The St. Joseph Table has all of these for sale.

Due to a massive failure on my part, Adam felt like he had to buy 2 trays. (I was going to make the cookies. I had the recipes. I forgot.) The tray held the traditional cookies, along with some familiar faves like peanut butter. (Yes, I groused.) I had just one.

And then I had another.

And another.

One tray, between me and my husband, didn't make it home!

Now, our priest said that he was sure they had no calories. He said that if we gave up sweets for Lent, the St. Joseph's table doesn't count. Since all the money goes charity, I have to buy them, right? My mom said that it was my Christain duty to eat the cookies because there are starving people...uh... somewhere and we have to keep the weight of the world in balance. Right? Right.

I'm not feeling too bad since we've been doing so well and I've been walking in addition to our DVDs but MAN. We ate an ENTIRE small tray of cookies! (It was a sozen or so in total.) I guess we were feeling a little deprived?

Soup for You?

Is there someone you would love to send a fresh, home cooked meal too but they live too far away? Have a student at college who is sick and needs a little TLC? Then "A Spoonful of Comfort" is for you!



soup and cookies, cookies and soup...
 I was recently asked to do a review of "A Spoonful of Comfort"'s products. They send homemade chicken noodle soup right to your door! Yes, fresh, real, in a glass jar tied with a pretty ribbon soup! And it's GOOD!

Want to hear all about it? Then hop over to the Natural Parents Network! Follow the instructions at the end of my review and you can win some of your very own. The winner will be announced on NPN and on this blog.

Disclaimer: I was asked by "A Spoonful of Comfort" and the Natural Parents Network to review the soup, rolls and cookies. As a result, I was given the product to try. However, the opinions belong to me and my family.

Lent, My Way

This Lent Adam and I agreed that, as a family, we would give up going out to eat. Joseph agreed and Cami went along with it, although she has tried to convince me that the McDonald's drive through it not going out because we would stay in the car! Joseph also gave up buying lunch at school and I stopped eating junk food.

"Junk food" means not only cookies, candies and chips but sugar in my tea and coffee, creamer and most processed foods. I have a new love- Greek yogurt- which I eat alot of now. I don't consider the yogurt I eat junk because it has only the items needed to make yogurt in it and fruit. I don't eat the "treat" yogurts like key lime pie. I stopped having a soda on occasion and am drinking more water. It's been good so far since I've stopped drinking cup after cup of coffee and think before I reach for food. Oh, yeah, I hope to lose some weight too!

(The exceptions to this rule are the THREE birthdays in Lent! I said I will have a piece of cake at those.)

Then Adam issued a CHALLENGE. He wanted to do P90X but alot of my friends said it would probably kill me. I'm not sure they were kidding so we went with the "Easy" version of Beach Body. It is the same man who did the P90X program but for whimps like me. Adam is really going out of his way to work out with me, do the "diet" and make me b'fast in the morning. Of course, he said that I won't be able to do the whole 90 day program. That just makes me want to do it more!

So far, I've been doing well. Sore and not really motivated but I do it. I suppose that is the point of a sacrifice. Ha. I have no set time of day. Most days, I want to get up early and do it. Alot of times, we end up working out at night. Today I did it at noon and didn't get a shower in until 2- ugh.

The junk food thing, though... I did a review for someone that included cookies so I ate them. I joked it was for a good cause but you can't really review food without eating it, right? I had a little of the cake I made Adam but the cake didn't come out well, so no problem there. I suspect as Lent goes on, it will get more challenging.

And with that... I need to go to bed. It's late. Really late.

Cleanliness is next to...

I don't consider my self a "clean" person or a neat freak by any stretch of the imagination. I'm not a germaphobe. Sure, I'll want to squeal and want to run screaming like the proverbial little girl when my kids show me a worm and I gag when they step in dog poo. Don't look too closely in my corners and please, for the love of all things blessed and holy, stay out of the bathrooms!

(Unless you are spending the night. Then I will have cleaned them!)

To my "mainstream" friends, I probably look like even a worse housekeeper. I use very few commercial chemicals in the house. I make my own all- purpose cleaner (currently vinegar, water, Dr. Bronner's, tea tree oil and orange oil) and scrub sinks, counters and bathtubs with that and baking soda. I don't wash the floor as often as I should and need too. I clean the sink, yes, but only once a week and without bleach. I have anti-bacterial dish soap only because Adam bought it and I wash all our clothes in an all-natural laundry soap. My handsoap? Yeah, I just finished up the bottle of non-anti-bacterial soap and switched us to Dr. Bronner's.

 Yet when I was talking on-line to some mom friends, I realized that, dude, among them, I'm an OCD neat freak! I was shocked (and slightly horrified, I'll be honest) at the amount of mothers who didn't expect their kids to wash their hands after using the bathroom or before eating. I understand about not wanting to use anti-bacterial soap at their house but to not use the soaps in public restrooms because of this?

I make (yes, make) the Herd wash their hands after things like messy art projects or getting dirty while eating. That seemed to be a general given for most people because no one wants peanut butter on their walls. But I also expect them to wash their hands anytime they use the restroom, no matter what they do (or don't) do in there. When they play at the playground or even the indoor playareas, I give them a baby wipe or hand sanitizer. I don't always catch them when they blow or, er, pick their nose but I usually make them wash then too. No, it's not a full rendition of the ABC song or Happy Birthday but it's something, right?

Why is this? I have no clue. I mean, yeah, I grew up with two medical professionals for parents which I am sure has something to do with it. While I want my kids immune systems to be healthy, I also don't want to introduce nasty, hard core germs to them. Plus, I think eating with dirty playground hands is just nasty. And then there's the leftover FREAK OUT about germs I had when Georgie was born and I made the kids change clothes when the got home from public places. For a preemie, though, that's not hard core, just common sense!

Am I perfect about it? No. I forget to have the kids wipe off after playing at McDonald's. They wipe their noses and reach for food. Joseph and Georgie have dirt under their nails from playing outside. Cole crawls on the floor, which needs to be washed more. And Higgins... Higgins could use a good lesson in NOT rolling in the grass and dragging it inside the house!

But not washing after the potty? Now that is my bottom line! :) (Ha.ha.ha!)

The Gifst of the first week in Lent

31. A husband who challenged me to work out during Lent and has been doing the DVDs with me. We're doing the Beach Body system, from the same man who "invented" P90X. Has it been fun? Well, they don't call it a Lenten sacrifice for nothing!

32. I have also given up on sugar and junk food for Lent. I stopped putting sugar in my coffee and tea and use just plain milk. Do I miss m sugar and creamer? Well, yes, of course, but I find I am drinking less of both and saving upwards of 3 tablespoons of sugar a day!

33. This has caused people to ask if I have given up coffee for Lent. No.

34. A dairy free meat free meal with friends

35. A day spent planting herbs in repurposed water bottles.

36. My mother who sent me the magazine with the ideas in it!

37. Another preemie mom reaching her mildstone- she has now past her preemie's gestational age!

38. My snuggly bear

39. My big boy asking for books for his birthday. I am so glad he loves reading now!

40. My toddler playing more and more like a toddler every day and jargoning on and on everyday.

Look at These Wheels!

Nina and I were up bright and early this morning and headed to Mayo once more. She had a sedated MRI in preparation for her rhizotomy. After that, we were able to meet with some of the Child-Life staff and they showed Nina the ICU where she will be staying for a couple of days before being moved to the regular pediatric floor. She got to bring home a doctor bag, a video, and her own doll with a hospital gown, Her doll has a Strawberry Shortcake one, and I am afraid she will be asking for a Strawberry one when she has to be there!

Early in the afternoon, she got fitted for her very own wheelchair! And she got to pick the color. Hers will be sparkly blue (it looks just like fairy dust!) The team of brother and sister were phenomenal! She has adopted 2 ids and also has adopted children with special needs! The Physical Therapist that works with them was so nice and I got to as her some more questions about the rhizotomy. Have I said before I love Mayo?

So here is what Nina's wheelchair will look like.

What is really incredible, is that they will have it ready before Nina's rhizotomy, which is only a month away!

The wonderful PT went to get a wheelchair for Nina, so that she could sit on one and see what it was like. Nina was excited to get on, and once she was sitting there, she started moving those wheels and making it go. She turned herself around, wheeled herself out of the room, and began going up and down the halls with the PT helping her figure out how to use it. The joy on her face made me fight tears. Here I had been fighting the idea of a wheelchair, thinking that a wheelchair would keep her from walking, yet what I saw was complete freedom as a little girl moved around on her own! I saw independence and a desire to be able to do even more!

So the PT said to us, "You know, there is no reason why you cannot borrow this chair until you get your own. Why don't you do that, so that by the time Nina gets her own, she will be very comfortable moving around with it."

Nina is enjoying the wheelchair, still learning how to use it, but loving the time she gets to spend figuring out.

Postcard from Japan: Disability and disaster















Elizabeth Aquino posted a link to this fascinating piece by Suzanne Kamata: Postcard from Japan: Disability and disaster.

Suzanne is the editor of Love You to Pieces: Creative Writers on Raising A Child with Special Needs. Her daughter Lilia has cerebral palsy and is deaf and her family lives in Tokushima Prefecture, Japan.

You can follow Suzanne on her blog at Gaijin Mama.

Triumphant return
















Ben returned ecstatic from another training session tonight. He spent more time on the treadmill and used new equipment. D'Arcy said Ben really enjoyed it and felt a sense of accomplishment.

This is quite a contrast from the 50 per cent Ben received in physed on his last report card. I couldn't understand why he scored "good" in most of the related items (e.g. work habits) but did so poorly if the program is adapted to his disabilities (unless he refuses to participate).

I heard an interesting interview on CBC radio today about researchers who have developed exercise guidelines for people with spinal-cord injuries. This is a related CBC The National broadcast.

Queen's University researcher Amy Latimer followed 700 Ontarians with spinal-cord injuries for 18 months and found that over half reported no recreational physical activity at all.

"This is often more to do with the nature of the barriers people with spinal-cord injuries face in trying to exercise, rather than because of the nature of the injury," Latimer says, noting that many gyms don't provide accessible fitness equipment.

Next steps for Latimer's team are to look at exercise best practices for people with multiple sclerosis.

These guidelines are exciting, but we need accessible gyms and attitudes to go with them!

A couple of months ago I spoke to Holland Bloorview researchers about partnering with a fitness club to develop exercise programs for children with disabilities. We plan to brainstorm this idea.

I thought GoodLife, where Ben is a member, was a perfect fit because CEO David Patchell-Evans has a daughter with autism and has donated $4 million to autism research. But I heard from GoodLife that they thought the investment in equipment would be too high.

With new exercise guidelines for adults with disabilities, and with parents of children with disabilities eager to get their kids active, I believe an untapped market waits.

'Our hopes and dreams'

Holly Roos is an American mom to Parker and Allison, who have Fragile X.

A group of bloggers in the Fragile X community are nominating her for a CNN hero award, and I have to say I was moved by this video of her: We have hopes and dreams for our children.

You can read more about her here, and see how she is giving voice to the hopes and needs of families of children with Fragile X and developmental disabilities. Louise

Questions and Answers

From Nina's Gait Analysis Post.

Is she putting much weight on her legs?
Yes, as much as she can. She has such high muscle tone that "contracting" is basically all her muscles are doing right now. When she walks holding on to our hand, she tires quickly, so she cannot do that long distance. But the fact that she is walking with a walker and moving her legs means that her legs and muscles are doing something right! Her walker allows her to last on her feet a little bit longer, mainly because she does carry her weight on her arms and legs, so it is not her legs doing all the work.
In the video without the braces in particular, it looks like she's putting almost all her weight onto the walker via her arms.
Yes she does, and she can get her feet moving pretty fast and then "cruises" with her feet help up. She loves it! It really seems to be a lot of fun!

If that's the case, it would suggest that she has good strength in her arms. I wonder if she could benefit from forearm or platform crutches?
I thought so too! But turns out crutches are not necessarily about arm strength! Nina does not have the strenght in her legs, the balance in her body, or the coordination to use crutches. There is a lot that goes into using them. A walker provides an entire "frame" of stability, which Nina needs, as opposed to only 2 points. Does that make sense?

Can she stand un-aided?
No, not at all.

I can imagine it's incredibly difficult for her to balance on those tippy toes, and bent knees! It's hard enough to learn how to walk as it is; adding the tippy toes and bent knees must make it incredibly difficult to balance.
Not only is it hard, she is terrified of falling down because her body "contracts" under pressure, and she cannot break the fall with her arms. So every time she tries to balance, if we don't catch her, she is sure to hit her head :(

And one last question: ultimately, is she going to go from the walker to independent walking or is there some intermediate step (like crutches or something that I'm not thinking of?)
Hmmm, good question. I am assuming that she will still use the walker at the beginning, and form there she will be like a baby, taking a couple of steps first. Once she is walking short distances, maybe she will get crutches (depending on her gait after surgery)
The reality for Nina is that she will most likely always have a wheelchair for long distances, but, on the other hand, she might surprise us and turn out to be a runner! Now wouldn't that be exciting!

From the Rifton Gait Trainer Post

Does it actually hold the child up in a standing position so that they can't sit down? We have a walker for our little girl, but she stops and crawls off all the time... She needs to stand at least an hour a day to work on strengthening her muscles and something that she had to stand up in would help.
The harness helped keep her upright, but it "carried" her too. Even if she did not put any weight on her legs, she could relax comfortably. Has your PT talked to you about a stander?

How about a little girl with Arthrogryposis from the same country as Nina?
Yes, for a little girl with arthrogryposis!  Nina's walker is for Sophie!

From Nina's Spastic Diplegia Post.

Is her extreme spasticity and lack of flexibility due, in part to her CP being ignored (more or less) for the first few years of life? In other words, say someone had been working with her intensively from day one. Is it likely that that would have resulted in an improved condition today? Or is it one of those issues that can only be significantly improved through surgeries and stretching over the course of years and decades?
Well, I asked our PT so that I could answer your question better informed! Yes, her overall condition would be a lot better. Meaning, she would be a lot more independent and mobile. Her muscles would be used to stretching. Who knows, she could even be walking on her toes. Maybe her gait would be a lot better, even following  surgery. However, the outcome would have been the same. Her muscle tone would still be very high, and we would still be looking at a rhizotomy as the best option for Nina.

'Just be kind'



Here's a pic of Ben (with brother Kenold) just after his first personal-training session at the club last night. As you remember, I wanted to sign Ben up at our club because his physiotherapy has ended and he really needs exercise. But, I was filled with angst about whether the club would be welcoming to a person with disabilities and whether Ben could even use the equipment because of his tiny stature.

Things in general went great last night. Ben's trainer is called Michael, and he's a very upbeat, positive, accepting person. The evening began with the monstrous stair climb from the lobby to the exercise floor. Michael felt this would be part of Ben's workout. And as Ben climbed one set of stairs, only to turn the corner to another, and another, a young man stopped and squatted down to cheer him on. "I hate these stairs too!" he said.

As Ben limped onto the exercise floor (we still don't have a lift for his shoe) and took in the flurry of bodies twice the size of his in a whir of movement on treadmills, bikes and elliptical machines, I felt a surge of pride. This kid has guts to keep going and keep trying despite the obstacles against him.

Michael took Ben for a walk around the whole gym -- as we're trying to build his walking endurance but he also wanted to show Ben everything. Then Ben did three minutes on the treadmill (Michael wants to start him slow). He got him doing repetitions on a cable machine (pulling his outstretched arms which were holding the handles back to his sides). Then he adjusted a weight machine for the arms and took some of the weight himself so Ben could do it. Finally, he had him do steps and stretching.

Everyone wants him to do well, I thought, as I sat on a bike, looking around. While there are elite athletes here, there are also people of all shapes and sizes, some of whom are just starting out. Everyone remembers what it's like at the beginning, I thought, when the shortest cardio session or lightest weights leave you breathless. Everyone is rooting for him, and he'll feel it.

As we climbed down all those stairs, people stopped to say hello or offer an encouraging word. Michael presented Ben with his new fitness bag.

Then Ben and D'Arcy showered and sat in the whirpool.

"I thought people were very welcoming," I said later.

"I don't think they really knew what to make of us," D'Arcy said, referring to Ben's appearance as a much younger child.

But it doesn't matter, I thought.

I'm sure there will be bumps, but Ben got to feel successful at working out. He broke a sweat, took a swig of a water bottle, and heard Michael praise and encourage him. He was ecstatic after his workout, no doubt because it got his endorphins going.

Later I was reading Buddhist nun Pema Chodron and she talked about this slogan from a Tibetan text: 'Be grateful to everyone.'

It's "about making peace with the aspects of ourselves that we have rejected," she said. "The people who repel us unwittingly show us the aspects of ourselves that we find unacceptable, which otherwise we can't see."

She talked about a meditation student she worked with who was making great strides recovering from a drug addiction, then went on a binge. When she expressed disappointment to her spiritual teacher, he got angry. "You should never have expectations for other people," he told her. "... Setting goals for others can be aggressive -- really wanting a success story for ourselves. When we do this to others, we are asking them to live up to our ideals. Instead, we should just be kind."

That really hit home in terms of parenting a child with disabilities. 'Just be kind' sounds like a great starting point -- for the way we interact with and support our children, and the way we treat ourselves as parents, without judgment. Maybe it's my own struggle with success, I thought, that makes it hard for me to accept the unconventional path Ben is on. Maybe that's something I need to look at more closely.

I got goosebumps watching this video tribute to Zack Hamilton: Paul's video tribute to Zack. Louise

Nina's Gait Analysis

Today, Nina had a Gait Analysis done at Mayo Clinic. Now, have I said before that I love Mayo? Well, in case you did not know this, I really do love Mayo! But on to the gait analysis...

If you have never seen one of these, it is a very sweet deal to watch! You know "Gallum"? Well Gallum was made by using the exact same technology that is used for the gait analysis. Now how is that for cool! 

What is a gait analysis? It is a test done to gather as mush data as possible pertaining the "gait" of an individual (or the way one walks). How does the individual look when they walk? What are their muscles doing when the person walks? What is the range of movement? These are basic questions that a gait analysis will answer by simple observation, and some really, really, and I mean really sweet technology!

We walked into a large gym. In the middle, there was a wide "path" marked by purple tape. At the end of the path there was a pretty regular looking video camera. However, all around the gym, up high, nestled in some black poles, were these red lighted cameras. No matter where you stand in the purple path, those cameras can see your body from every single angle that you have (yes, even those that you might not like! There is no hiding problem areas in this gym!)

Next, Nina got her tone and range of motion measured. It took a while to do this, but it was very important to have the measurements done.

Then came the fun part, Nina got 8 special type of microphones on her legs. Okay, I am not sure what they are really called, but that is what they told Nina they were, and they told her her muscles were going to talk to her using those microphones. You know those fancy medical machines you have to be strapped on to when you are in labor? the ones that show a straight line until a contraction comes and then they spike up all over the place? Well, every microphone in Nina's legs had a corresponding line. Every time she moved her leg, the line spiked and made noise. Her muscles were talking! And, the exciting part, is that they were all talking! But some of them, were very quiet.

Third came the fun part. Nina got her "space stickers" on.




See the "backpack" she is wearing? This is where she carried the "information box" that came from her microphones.

Unfortunately Nina was too curious about the silver balls, so they ended up taping them down to make sure they would stay.

Now Nina, do you think you can walk with all those fancy balls attached to you? I think the tech told me that she had over 50 of those on her!

First Nina got to walk without her braces on. This was the part where the space gear was necessary for. You can see how high up she is on her toes, her knees are constantly hitting each other, and her feet are turned in. Also, her left side is much stronger than her right side.


We also put the braces on, and kept on the microphones. You will notice that with her braces on she bends her knees a little more to compensate for the stretch, and even then her heels are up high. Knees? About the same!

This is a still picture, but, at the end of the test, we got to watch the video of her gait test. It is quite interesting to see your kid as a stick figure, especially a stick figure that moves just like them! If you click on the image it will enlarge it and you will notice her heels are way up high, and her knees bent, and her posture really will need to be worked on.

And why is this for? This is all in preparation for Nina's rhizotomy. Doctors need to have all this information on her body so that they can go in having a pretty good idea of where the problem areas are!

Dr. Sherr talks about ACC





Dr. Elliott Sherr is a Pediatric Neurologist at

University of California, San Francisco (UCSF).

Dr. Sherr is highly knowledgeable and an expert

on Agenesis of the Corpus Callosum. He sees many

patients, children, who have ACC and Dr. Sherr

is highly respected and well-liked by parents.

Dr. Sherr is on the Board of the National

Organization for Disorders of the Corpus Callosum

(NODCC) and he speaks at the annual Conferences.



Dr. Elliott Sherr is also involved in a very large

Brain Development Research Study on ACC
.



I want to bring to your attention some excellent

resources that provide Dr. Sherr's knowledge

about agenesis of the corpus callosum. More

specifically:



At the 2004 NODCC Conference, Dr. Sherr gave

two presentations about Agenesis of the Corpus

Callosum. They are available as Conference

handouts [in outline form] to read below.



2004 Conference handout titled:

"ACC and Associated Features".



2004 Conference handout titled:

"How to Get the Most From Your Neurologist Visit".



In addition, both of the 2004 Conference Presentations

by Dr. Sherr, in their entirety, have been combined into

one DVD for viewing titled:



"Neurologic Issues in Disorders of the Corpus Callosum".

You can purchase the DVD from the NODCC store.



I own a copy of the DVD
(recently purchased) and find

it to be very informative. My son, Matthew, who has

complete Agenesis of the Corpus Callosum was diagnosed

at four months and he is 17 years old.



The 2004 Conference DVD is divided into two separate

Presentations:



"How to Get the Most Out of the Visit/Relationship

with Your Neurologist"



and



"Agenesis of the Corpus Callosum and

Associated Features"



A
few of the topics and information covered in

the "How to Get the Most Out of the Visit/

Relationship with Your Neurologist"
1st episode

of the DVD include:



Dr. Sherr says:




"I just want to say one thing: that there

are a lot of syndromes that are sometimes

associated with ACC where ACC is not

necessarily the principal issue. And that

doesn't mean that your child's not going to

have ACC related issues but it's important

to recognize that there's probably a lot

going on and ACC is a piece of that as

opposed to the primary driver of the issue."



Dr. Elliott Sherr was involved in an ACC Review

titled: "Agenesis of the corpus callosum: genetic,

developmental and functional aspects of

connectivity".



Genetic Syndromes occasionally and frequently

seen with ACC
can be found on Page 8.



CHILD NEUROLOGISTS:



Dr. Sherr states that they should be board

certified in child neurology.



ADVICE REGARDING MRI FILMS:



He says:




"You should have the copy of the films with

you and in today's day and age you can have

a copy on CD. You can also, if you want,

have a film copy as well." (for yourself).



Dr. Sherr talks about asking for a film

copy of the MRI for you to have. Then you

are able to take the MRI film copy with

you to doctors and specialists that your

child sees.



Also discussed on the DVD:



What Type of ACC is this?



complete ACC

partial ACC-hypogenesis/dysgenesis

thin corpus callosum-hypoplasia



What are the associated CNS changes?

CNS = Central Nervous System

(in other words) - Dr. Sherr says:




"When you look at the MRI what other things

are there that can be seen?"



Is the MRI interpretation accurate?



Dr. Sherr says:




"I will tell you...so you know we're doing

research in my group on ACC and so we've had

families from around the country send us their

films and I can tell you that the accuracy...

the families always send us the films and

frequently the radiology report is included

in there."...



"for somebody who is not used to looking at

brains of children on MRI they're more likely to

make that mistake because they just don't have

the experience of looking at them. So the

people that I work with have probably looked

at in excess of 10,000 brain MRI's on children

and so they have a fairly strong wealth of

knowledge about what is what, what is normal,

what is abnormal and if it's abnormal, what is it,

and that is actually very important. And so when

we got the films--we've gotten over 100 set of

films--and I'll tell you that about 5 to 10% of

them were completely wrong"...



"Even the best radiologists are going to make

mistakes."



"So how do you address that?"



Neuroradiologist and

Pediatric Neuroradiologist



"Who's reading the film? Is it a Neuroradiologist?



So there are Radiologists, people who are board

certified in radiology, but then there are people

who do an extra two years of additional training

and all they look at are images of the brain and

the spine and the nerve roots throughout the body

so they're more likely to be experts in reading

brains."



"And then there's another level. It's not

a level that you can get a little certificate for

but there is another level of specialization where

they're Pediatric Neuroradiologists, where all they

do all day long is look at MRI's and other imaging

modalities of kids' brains and kids' spines and the

reason that's important is that the developing brain

looks a lot different on MRI than the mature brain.

There's a lot that's going on obviously inside of

your child's head when they're developing and that

is actually seen to some degree when you take

pictures. when you take this MRI and somebody who

is an expert in that knows about what a brain is

supposed to look like at 3 months and how it's

supposed to look at 3 years, cuz those are very,

very different. And how you interpret the results

is based on your knowledge of knowing how the brain

looks as it progresses during development. So this

would definitely be one of those cases where if

only a local radiologist has looked at it, you

should request that the MRI be reviewed by a Pediatric

Neuroradiologist. And there are ways to have your

local doctor send the films to another radiologist

[Pediatric Neuroradiologist] for a second opinion

and I would pursue those."



Dr. Sherr says:




"Have your Neurologist show you the films and go

over the films with your Neurologist."



He says to question the Neurologist about the

indecipherable terms on the MRI report and have

them explain each finding to you.



MRI's in Children



Dr. Sherr says:




"There are certain things that we can see at

3 years we can't see at 3 months and so if your

child's first scan was at 3 months of age I

would recommend getting a second scan when

they're 3 or 4 years of age."



He provides more detail about this topic on

the DVD.



Preliminary Findings of ACC:

White Matter



Dr. Sherr states:




"Is there a correlation between what we see on

their MRI and how they're doing clinically?"

We did find something preliminarily. We found

that the clinical score correlates with the

amount of white matter and white matter is

insulation in the brain."



"So the more insulation [white matter] that

you're missing the more severe your clinical

condition was. And if the brainstem was

involved that was also correlating with

severity."



Dr. Sherr further states:




"Knowing more about the MRI is going to

provide you additional information about how

your child is likely to do. And I say likely

because this is just a rough correlation. It's

not a guideline. It's not an absolute-ism."



MRIs and ACC



Dr. Sherr says:




"Everybody should have one MRI at diagnosis

and, unless the diagnosis was made later in

life, should have a second MRI."



The DVD includes many other topics and

information about ACC.



At the end of the DVD Dr. Sherr took

questions from the audience. One

question was:




"Why do some people who have ACC function

fairly normally and live a relatively

normal adult life?"



Dr. Sherr replies:




"Some of that might have to do with other

places that fibers cross...so there's

something called the anterior commissure

and it's a place that fibers cross and it's

in front of and a little down from where the

corpus callosum is."







"And actually when we reviewed some people with ACC

we noticed that they had big anterior commissures,

suggesting that maybe fibers that should have gone

through the corpus callosum crossed through there.

So that's one possible explanation."



note:
Anterior commissure. Small band of approximately

50,000 axons that connects the cerebral hemispheres. The

anterior commissure connects the temporal lobes and is

located at the base of the fornix.





A
few of the topics and information covered in the

"Agenesis of the Corpus Callosum and Associated

Features"
2nd episode of the DVD include:



MRI features that can be associated with ACC:



*COLPOCEPHALY:



"This is a posterior enlargement

of the lateral ventricles that results from the

absence of the corpus callosum."



"Similar phenomenom is the 'steer-horn' shaped

lateral ventricles seen more anteriorly."



*UPWARD DISPLACEMENT OF LATERAL VENTRICLES



Dr. Sherr says:




"The first two [colpocephaly and upward

displacement of lateral ventricles] are

almost always seen with ACC...not always

but almost always...and it's just what

happens to the brain in the absence of

the corpus callosum."



"So it's not a separate diagnosis

all by itself. It [colpocephaly]

is intrinsic to the diagnosis of

ACC."



He also states:




"So it's like if you're building a building

and you take out scaffolding in one of the

main areas of the building then the

building's going to look different. It's

going to have support structures in

different places and so that's what's happening

to the brain."



"But it's not a separate diagnosis. It's

just what happens when the scaffolding,

which is the corpus callosum in a way, is

missing. The ventricle's going to bulge out."



"So colpocephaly and what radiologists

call steer-horn shape ventricles are a

consequence of the absence of the corpus

callosum."



*PROBST BUNDLES



The corpus callosum is made up of 200 million

axons (also referred to as fibers).



Dr. Sherr says:



"Axons are like the telephone wires that are

connecting all the phones together and they are

these wires and they go from one side of the brain

and they cross over to the other side of the brain.

And if they cross over to the other side of the brain

then the corpus callosum is formed and if they don't,

then where are they going to go...



So in certain individuals those fibers go to the middle,

they can't cross, presumably because the structure that

needs to be made in development, (what's called a callosal

sling) is not there and so instead they turn to the left

or they turn to the right and they go alongside the edge

of the callosum (or where the callosum would have been)

and form the Probst bundles. And it's unclear what this

means.



Some people think that if you have Probst bundles that

it correlates with a better diagnosis [outcome]. We

don't know that yet but that's hopefully one of the

things we'll be able to answer more definitively."



Dr. Sherr (in the DVD) goes on to point out visually

on an MRI image where the Probst bundles are.



He then says:



"Not everybody with ACC has Probst bundles but a lot

of people do have Probst bundles but we don't know the

significance of that yet."



*INTERHEMISPHERIC CYSTS:

*a. type 1 - communicate with ventricles

*b. type 2 - not communicate with ventricles

*c. continuum with lipoma



Dr. Sherr says:




"These cysts are fluid filled structures outside

of the brain matter proper."



"So actually when the brain is formed there

actually is a space between the two hemispheres

so it's not within the brain proper...it's sort

of like in between the two sides."



"And the current thinking is that cysts develop

in lieu of the corpus callosum."



*LIPOMA:



Dr. Sherr says:




"One thing that happens instead of a cyst

forming is that a little structure, that's

basically a fat collection, which is called

a lipoma, will form instead.



ACC Brain Images



In the DVD, Dr. Sherr also speaks in detail

about other brain anomalies seen with ACC.



Dr. Sherr said:




"If you just look at the number of people who

have just ACC and nothing else that's a smaller

percentage than the total, so most kids with

ACC are going to have ACC and something else."



Dr. Sherr explains the different views of

the brain on MRI films and shows examples.



Dr. Elliott Sherr advises:



"When you get an MRI scan you need people to do

Axial, Coronal and Sagittal views to get a true

picture of the structure of the brain."




Also discussed:



Can My Child Have ACC and:



Autism

Attention Deficit Hyperactivity Disorder

Obsessive Compulsive Disorder

Cerebral Palsy

Mental Retardation



Dr. Sherr says:




"The short answer is yes."



However, in the DVD he goes on to answer

in more detail.



ACC Syndromes with Molecular Genetic

Testing:



Dr. Sherr says:




"So these are examples where the gene is known

and it causes ACC."



Andermann Syndrome

Mowat-Wilson

ARX related syndromes

L1CAM



He also says that in his experience they are

very uncommon causes of ACC.



The DVD covers a lot more topics and

information about ACC.



At the end of the Presentation Dr. Sherr

took questions from the audience.



(a few of the questions are):



Question:




"Is it acceptable to request a typed up

copy, in layman's terms, of what the MRI

interpretation is?"



Dr. Sherr replies:




"The answer is absolutely yes."



Question:



"Symptoms that might trigger you to get

another MRI?"



Dr. Sherr replies:




"I think that the symptoms that would trigger

somebody to get another MRI down the road

would be a significant worsening. So if a child

is developing at his or her own rate and then

all of a sudden they stop developing or they

decline in development, that would be a reason

to get an MRI. If there's new symptoms that

are significant and not sort of part of things

that they're already doing, you need to

potentially get another MRI, and the last one

would be something that might need to be

discussed with your doctor, depending on what

they are."



Also available from the NODCC is Dr. Sherr's

presentation at the 2008 Conference on podcast, at

no cost, which includes
some of the same information

on the DVD from the 2004 Conference plus even

more information. In my opinion, the DVD and the

2008 Conference podcast are BOTH excellent

resources about ACC.




note: The DVD from the 2004 Presentation

gives the advantage of being able to see the exact

area of the brain Dr. Sherr is talking about (because


he uses a
red
light pointer to visually point to the specific

brain structure in the picture that he is discussing).

The 2008 Conference podcast displays still frame pictures

of the brain and you only hear Dr. Sherr talking about

specific areas of the brain, but do not get to visually

see them being pointed out.




note:
you will need to download the TechSmith

Screen Capture Codec (TSCC) to view the podcast:

download here.



2008 Conference podcast with Dr. Sherr



(a few interesting highlights are):



3 family generation of complete ACC and

partial ACC in one family. Dr. Sherr discusses

one family where ACC and partial ACC is seen

in a grandfather, children and grandchildren.



seen at time frame 12:44-15:26



Dr. Sherr states:




"All of these individuals with a corpus

callosum disorder did well or average in

school and the adults have jobs. So these

are folks who are functioning at a very

high level."



ACC and Heart Defects:


seen at time frame 32:53-33:49



Dr. Sherr says:




"Almost 1/4 of the kids had heart problems.

Now these are not innocent murmurs that then

go away. These are actually kids who have real

heart disease. So my recommendation on any child

with ACC is that they get a comprehensive heart evaluation."



Colpocephaly is discussed:

seen at time frame 38:52-40:29



Dr. Sherr says:




"And so if doctors say your child has hydrocephalus

you want to be very careful to ask them, well does

the child have hydrocephalus or does he or she just

have colpocephaly?"



Interhemispheric Cysts discussion

and other ACC features


seen at time frame 43:20



Question regarding Interhemispheric Cysts:



"Do they enlarge or do they stay the same?"



seen at time frame 49:09-50:44



Dr. Sherr's answer:




"I don't think I have good enough numbers yet

but I would say that the short answer is most

don't change in size and a few will change

in size.



"If a cyst enlarges it will result in the

symptoms of hydrocephalus and so usually what

that will mean is that the child will present

with some sort of symptoms...usually it could

mean things like vomiting, particularly vomiting

when you first wake up in the morning, if a child's

eyes seem to be pointing down too much instead of

being right in the middle of the eyelids, if the

child seems to be too sleepy (lethargic) that

could also be a sign of hydrocephalus."



"So for my patients in my clinic who have an

interhemispheric cyst, when they're little I'll

get an MRI every year for the first three years

of life and if there's no growth after three years,

then I'll do one more when they're 5 years of age and

then after that I won't do anything unless they have

symptoms. But that way...I think most of the kids that

have cyst enlargements, it happens early on."



It's definitely worth exploring these valuable

ACC resources mentioned in more depth for yourself.



You can also find additional resources about ACC

(including Conference handouts, podcasts, and other

items) available at the NODCC website.



Do you want to enroll in the ACC Research Study at

UCSF where Dr. Sherr and his colleagues are involved?

Please contact: Mari Wakahiro at 415-502-8039.