Nina in the News!

Yesterday we had a TV station come and tape Nina during music therapy. She was being very shy, but she still did a great job. They taped for about one hour and a half and it all came down to a six minute segment. And I have to say, they really did a great job!

So just CLICK HERE and go watch her TV debut (on the right hand side).

ACC & Moms-To-Be Story #10



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

Each story is as unique as each child who has ACC.

I received an e-mail from Shea, the Mom of Levi,
who expressed a desire to share her ACC Pregnancy
Story here for others to read.

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



Written by Shea:


Levi's Story

We were so excited to be expecting our 3rd baby in the
summer of 2010. Originally due September 6th we were
going to keep it a "surprise" and not find out the sex
of the baby. At my 30 weeks ultrasound we expected it
to be like all the others, easy and routine. My
husband was with me and after just a minute of looking
the tech told us the baby was breech. Having had 2
babies prior I knew that this sonogram shouldn't take
too long but after several minutes I began to get a
little nervous. I knew from the baby being breech that
she was taking a lot of time studying the baby's head,
or at least where I assumed the head was since she had
pointed it out to us on the screen. After 10 minutes
I even looked at my husband and gave him a "look".
I just knew something was wrong. A few more minutes
and I asked, "Is there something wrong?" She said she
wanted to take her time because she had never seen me
before and apologized for taking so long. A few minutes
later I started crying and without saying anything she
patted my hand and told me to try not and worry but that
she did have some concerns and wanted to go and get the
doctor. MY WORLD STOPPED! We still didn't understand
and because she wouldn't tell us anything we were left for
about 20 minutes to wonder what was wrong with our baby.

After 20 minutes of waiting my doctor came in and said
that they were concerned about the size of the baby's
head. At 30 weeks the head was measuring a few weeks
ahead. They mentioned something about maybe too much
fluid in the 1st and 2nd ventricles. She tried to
reassure me and said that she was going to refer me to
a maternal fetal specialist. This was a Thursday; our
original appointment was made for 8 days later on a Friday.
I couldn't imagine waiting that long so my husband called
in some favors and we were worked in 3 days later that
Monday morning. After a high definitition ultrasound the
doctor explained that there was in fact too much fluid in
the 1st and 2nd ventricles and also a significant amount
of fluid in the 3rd ventricle as well. What I am reminded
of even today from our conversation with him was when he
said, "I am very worried about this baby and I think
you should be as well." He then encouraged us to have
an Amniocentesis test that day and scheduled us an
appointment with our local University Hospital for
a Fetal MRI for 2 weeks later.

In the course of the 2 weeks leading up to our Fetal MRI
we received the results from the Amnio and were so
grateful to learn that all chromosomes were normal
and we were overjoyed to learn from the test that
our baby was a BOY!!! They encouraged us to move
forward with Microarray Analysis testing which is
more extensive but again all chromosomes were normal!
With each passing day leading up to our Fetal MRI I grew
more and more anxious. I was consumed with worry
and anxiety.

Fast forward and at 32 weeks, from the Fetal MRI, we
were given the official diagnosis of Hydrocephalus
and Complete Agenesis of the Corpus Callosum. We
were left to wonder, “What is ACC?” The maternal
fetal specialists and staff at the hospital were
lacking in information and basically gave us some
copied pages from a text book with some harrowing
facts about ACC, nothing positive to say the least.
Words that stood out from our conversation that day
were, "facial deformities...baby may never walk,
talk or eat and will likely have rage issues."
I was numb to these words. I couldn't believe that
only a few weeks before we were just a "normal"
family, excited to be expanding our family without
a care in the world.

Somehow we muddled through the next 5 weeks. I
continued to see my regular OB for twice weekly
check-up’s and BPP’s (Biophysical Profiles) to make
sure the baby wasn’t in distress. They never would
tell me if the baby's head was growing but would
occasionally hint that it was in fact larger than it
should be so I was left to assume that his Hydrocephalus
was severe. And because I needed to deliver at another
hospital I was unsure of when or how he would be born,
who would be my doctor. We knew we needed to deliver at
the University Hospital because they have the only
in-state Pediatric Neurosurgeon and we knew it was
likely the baby would need a shunt placed.

At 37 weeks it was decided to do another amniocentesis
at the University to check for lung development and at
37 weeks and 1 day on Tuesday, August 17, 2010 Levi
joined our family. They wisked him away and it wasn’t
until several hours later that they allowed me to see him.
When I was able to see him and touch him….I was in awe
and my heart was filled with joy at the wonder of him.
He looked just like our other 2 children, absolutely
beautiful. For so many weeks we had prayed so diligently
for him. Surrounded by family, friends and our priests
that day I knew that Levi was truly a gift from God and
today he continues to bless our family.



Levi had a VP Shunt placed a week after his birth and
was released from the NICU one week later. Levi was
officially diagnosed with an Interhemispheric Cyst in
March. The cyst was suspected in utero. Today, at
8 months old, he is doing remarkably well! In comparison
to our other 2 children he is meeting milestones and
developing just as he should.

Levi learning to push up on his tummy well at 5 months old


We qualify for physical therapy 1 time a week. He has
been rolling over since 4 months old and has been sitting
mostly unsupported since 7 months of age. He is like a
little inch worm, squirming on the floor. Not ready for
crawling but by all accounts doing remarkably well!

Levi sitting at 7 months old during a trip to the beach with family


If by sharing my story brings comfort and hope to even
one family then it's been worth my time in sharing it.
I worry so much about Levi. There are so many “what if’s”
that fill my head each day. That being said, I worry
about my other 2 children as well. It’s my job as a mom
to worry and want the best for all 3 of them. But, God
is so good and His grace is sufficient. I am an all
together better person today because of all three of my
children. Our family is stronger, we are better and more
faithful than before.

Levi at 8 months old on Easter Sunday


I say about Levi that he is EVERTHING God intended him
to be and I know he will do great things. He is perfect
and I wouldn't change a thing.


Shea (Levi's Mommy)
E-mail Contact: shealuckett@yahoo.com


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

I welcome every story.

Do you:

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

Do you want to share your own ACC story here?

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

Photos and Videos Post-Rhizotomy!

I know it has been a while since I promised this, but here are some photos and videos of Nina post-rhizotomy!

First, our sleeping beauty. Now that she moves better, she is all over the bed at night and she is sleeping so well!

 Grandpa and grandma Henely came to visit. This is when I decided I should take pictures of her visitors...and I have not taken any more! I remember as soon as friends walk out the door.
 Today, Nina's friend A came to visit! We have really missed her this week. She got to go home last Friday and it was exciting to see her for a little bit today. She is an adorable little girl and has the sweetest voice! Going to the play room is not the same, and we can't go looking for her if we are getting a little bored.

And finally, some videos from yesterday at therapy. you will see how well she is really doing with the bike and also her "march" as she walks. But do notice that her knee comes up as she takes a step!


Lastly, Nina's braces were adjusted today, and some of her straps were replaced. We are pretty excited about that!

'In each other's eyes, we are enough'























'In each other's eyes, we are enough'
By Louise Kinross

“Monkey man. Monkey man.”

A two-year-old stood over my son in the sandbox, pointed at his face, and chanted the words like a mantra. It took me a second to make the connection. Then blood rushed to my head, it hurt to breathe and my eyes stung with rage and shame. My son’s ears did stick out like a monkey’s. But I wasn’t in the mood for educating.

“Time to go home Ben,” I said, scooping him up in my arms. I limped back to the safety of our house, where I didn't have to fear the judgment of others.

It was a few months later that I got out the baby album. I wanted to send photos to a family in San Diego whose child had the same rare genetic syndrome as my son. When Ben was diagnosed, there were only 60 reported cases of Langer Giedion Syndrome in the world. Children with the syndrome are born missing two genes on the long arm of chromosome eight, resulting in unusual craniofacial features and a host of bone, growth and learning problems.

I hadn't looked at these photos in two years. And I was in for a surprise. At first, I couldn't believe my eyes. The pictures were not the way I remembered them. How could that be? This was my son Ben’s album, but the baby in the photos didn't look like my flesh and blood son.

Now a toddler, my son had big, bright, piercing eyes that could drill a hole of tenderness in your heart. My son had a dimpled, ear-to-ear grin, pudgy cheeks and an adorably large head that made him look like a little Buddha. My son had fair skin and extravagantly long eyelashes.

The baby in the photos looked odd: ears that stood out and didn't line up, an unusually broad forehead and wide nasal bridge, and thin lips that gave a blank look to his face. His eyes slanted down a smidgen, the tip of his nose was flat and there was a smooth faint line where there should have been a vertical groove above his upper lip. His head was too big and his features seemed out of proportion.

My gut turned.

It was like looking at one of those trick pictures. The first time you see a profile of an elegant young woman looking off in the distance, and that's all you see. But then someone explains how to look differently at the picture: what if the young woman's ear is really an eye? Suddenly, the face of an old woman with a large beak of a nose and a pointy chin pops out. Where did she come from? And then your eyes will not allow you to see the young woman again.

A switch had flipped in my brain, and no matter how many times I squinted or closed and opened my eyes, I could only see the odd features and asymmetry of my boy's face. I couldn't see the baby that I held in my mind's eye. I couldn't see my flesh and blood Ben.

Three years before, I was pregnant with my first child. Like most parents, I could only envision our creation as perfect: conceived of our love and possessing an original mix of our DNA, this child was new, untouched, more part of the unknown, spirit world he came from than ours. Knowing he was a boy, we had already named him Ben Keegan – Keegan meaning 'little fiery one.' Fittingly, he woke me with kicks at about 4 a.m. each morning. I would walk to the window, look up at the blinking stars and wonder who he was and where he came from. The stars represented the mystery and majesty of my son and my longing for him.

"Ben is here," my husband D'Arcy exclaimed the night he arrived. I tried to focus on the little body with a tuft of dark hair at my feet, but he was quickly whooshed away. I lay back, wet with sweat, spent and spilling over with joy. D'Arcy kissed me. "Is he all right?" I called out. "D'Arcy, go see Ben!"

The midwife returned and put her hand on my arm: "He has some unusual features," she said. The words floated by me like distant clouds. My euphoria was complete.

When he was finally passed to me, wrapped up in a blanket with a little white stocking on his head, he did look different. I was concerned, but I wasn't panicked. I didn't know how to interpret his appearance. "Isn't that the way all newborns look?" D'Arcy asked.

The pediatrician arrived, unswaddled Ben, and looked at him disapprovingly. "He has anti-mongoloid eyes, low-set ears and a bit of a hare lip," he said. I hadn't noticed anything unusual about Ben's eyes. I had always loved the metaphor of the eyes being windows to the soul. I knew that mongoloid was an archaic term for Down syndrome. What on earth did 'anti-mongoloid eyes’ mean?

"In Down syndrome, the eyes slant up," he said. "Your son's eyes slant down."

Ben – the sacred being that had grown in my body like a new limb – lay naked under the stark, fluorescent light. The doctor inspected him, piece by piece. "The timing wasn't right," he muttered, shaking his head. My jubilation, a brilliant, burning fire, was now flickering in the wind of a competing grief. How could my son's birth be wrong?

The doctor said Ben's symptoms looked like a chromosome problem.

We took him home in a haze of shock. "Couldn't we still be a happy family?" I asked my husband on day three. On day four we saw a geneticist. Based on his 'abnormal' features, she suspected Ben had Langer Giedion Syndrome.

But outside the clinical setting, a different picture was taking shape: my boy was growing beautiful before my very eyes. I wrote in my diary:

2 weeks and a day


You have very delicate features – beautiful blue eyes, well-defined and delicate eyebrows, a round face with plump cheeks and tiny little lips.


3 months


You are becoming more beautiful every day. Your eyes are drop-dead gorgeous – big, blue, long, long lashes. You have an all-out, ear-to-ear grin with dimples.


6 months


It seems like a miracle that you are here. I like to sit and wonder at you – where you came from, how you came to us, how you are so perfectly formed.

How was it possible that I could view Ben as "perfectly formed" when medical experts described his face as "a complex picture with multiple congenital anomalies?"

When I was immersed in the everyday tasks of loving and caring for Ben, he was so much more than his unusual features: he was a cuddly ball of heart, giggles, interests and charms, whose chest rose and fell at precisely twice the rate of mine.

In my eyes, he was physically beautiful. And it wasn't just a spiritual thing. Perhaps my eyes balanced out what was odd. Perhaps it was a matter of emphasis: in the same way that our brains can organize that trick picture to reveal an old woman or a young woman, I organized Ben's face in a way that made his features beautiful to me. Or perhaps it was simply a choice. I chose to see beauty.

I expected others to delight in my boy like I did. When they didn't, a black hole of grief opened up inside me.

A friend responded to Ben's photo by describing him as impaired. “I don’t think people are repulsed by Ben,” she added. Repulsed? I looked at the photo I had sent. To me he was irresistible.

Specialists who were consulted on other parts of Ben’s body couldn't resist documenting that he had "dysmorphic” facial features. I remember the first time I raced to the dictionary to look the word up, heart thumping at this new and horrible name that had been ascribed to my son. Dysmorphic: adj. "Malformed, misshapen or underdeveloped." One surgeon entered a clinic room and, without introduction, demanded angrily: “What is WRONG with his head?”

In my eyes his differences dissolved because I saw his face and being as a whole. But to other people, the features superseded the boy. In their eyes he was – at the core – different, an oddity, something less than human.

As I paged through Ben's baby pictures that night, I saw him through their eyes. For the first time, I saw the boy with the syndrome, the boy whose every feature had been scrutinized and found lacking. My eyes couldn’t correct the face in the photos – creating symmetry and proportion where it was lacking – like they did in real life.

It's been many years since then. Now, as a teenager, Ben has more disabilities than we ever imagined he would, and the one plastic surgery we chose to put him through, to try to reconstruct his ears, didn't work. Whenever I find myself weighed down by his medical picture – which is just one view and which inevitably focuses on what he isn’t – I know how to find my way back to a more true assessment.

I look into his large, deep-set eyes, which have, since babyhood, turned hazel. I can see my face reflected in the star-like light at the centre: he is part of me, and I am part of him. He has eyes you can fall into, and which are capable of communicating anything. In his eyes, I don't see the things that are wrong. I see Ben – which in its Hebrew form means ‘son.’ Is it possible that his wholeness derives from the simple fact that he is my son? He is mine. When I look into his eyes, I see a beauty and goodness that transcend appearance. His eyes mirror back my joy and acceptance. In each other’s eyes, we are complete. In each other’s eyes, we are enough.

From whence I profess my undying love for Wal-Mart

I am not a fan of Wal-Mart, as rule. Given the choice, I'll pick Target anyday. In general, I think they are cleaner, have nicer clothes and a better selection of food. I love the Archer Farms brand!

Yet today I took all four kids to Wal-Mart right after school to pick up a couple items I needed for dinner. Right there- that is a recipe for disaster. Four kids, right after school, quick trip. I'd either end up on "People of Wal-mart" or, well, dead.

As soon as I walked in, I saw a cart that said "Infant Long Johns- $1." I had to look and found SIX pairs of long johns for the babies for ONE DOLLAR! I had debated buying them each a pair this winter to layer under their clothes and didn't do it- and now I have enough pairs to last for-ever! A couple of them are even "75 per cent organic." FOR A DOLLAR.

I need gluten free pasta. They actually have a resonable selection for fairly cheap. I picked up the one brand everyone recommends and a cheaper brand to try. As we walked past the butter section, I found the Earth Best fake butter. It's a tub, not a stick, but I'm not picky. I saw some brands of Gluten Free bread mixes but no bread; GF bread has been a hard sell to the kid. Yay! I don't have to go to WF- well, as much!

The kids were super well behaved. We had the OT come out today and she gave me some tips. One was to try a massage before we left for some place that could be over stimulating and stressful. I did that before we left to get Joe and Georgie was pretty calm. Camille and Joe listened... well, not WELL but they actually listened so I didn't have to be "that mom" in WM.

I love you, my local WM. You have the special foods I need, for cheap!

(PSSSTTT... but clean up your produce section. Cuz, ya.)

Ten Days Post Rhizotomy

It is late, but I wanted to share a quick update on Nina and her progress since having her rhizotomy.

I will start by saying that there is no doubt that this was the best thing for Nina! It has only been 10 days, but even with the difference we see now, I am so pleased! And what amazes me is that we have so much more improvement to see for the next year all thanks to this procedure!

Today, I held Nina on my hip and I realized that she felt...normal. Before the surgery, when I held Nina on my hip, I had to wrestle her legs around my waist, and there was a constant pressure of her legs tight around me. Today, it was a different story.

Today, Nina got to try to use her walker. She needs help holding her weight, regardless, she is taking steps and there is actually movement! her legs are not glued at her knees with little tiny running steps on her toes. Her legs are actually stepping, one at a time. Right now it looks a lot like she was marching...but she could not march before, that range of motion was simply not there.

Today, Nina kicked  a ball! Awkwardly and badly but she tried, and her leg was swinging back and forth.

And she sleeps!

With just one finger I can push her foot up and down. With her left foot, she can even do it on her own, she can actually flex her foot on her own!

Botox was great for Nina, and we had seen great results, but this...this trumps Botox a hundred times over! And did I mention this is only the very beginning?

Checking off the 'to do' list

My husband always tells me to focus on one thing at a time.

But sometimes the list of things 'to do' for your child can seem alarmingly long. Your mind is in a state of constant vigilance, trying to keep all of the various balls you juggle in the air.

Sometimes we forget to acknowledge that in fact we have made some progress. So I thought I'd do that today.

Here are some things to be grateful for at our house:

The IPRC went better than expected. Ben was given the designation mild intellectual disability and everyone at the table agreed he should be doing more academic work at his level. I have an appointment to discuss his IEP at the school this Thursday.

I found a reading tutor for Ben, and she came for her first visit last week. Check out this site she showed us: http://www.starfall.com/.

We held Ben's first life plan meeting and were encouraged by the support of those who attended.

As a result of the life plan meeting, Ben is going to his Uncle Ian's house for dinner this Friday with Sallyanne.

Another friend offered to take Ben to the movies with her son. Ben got invited to a sleepover.

I followed up on the suggestion of some respite funding (which I was sure we wouldn't be able to access). It sounds like we might be able to receive a small amount towards our workers when Ben goes to overnight camp this summer.

As we've now clearly stated that Ben is interested in being a zookeeper, a BLOOM reader suggested she may have a strong connection we could work at the zoo for the opportunity of volunteer work. In addition, Ben received a computer game where the object is to create zoo exhibits and care for animals.

Matt came for a visit on the weekend, bringing Ben two Transformer movies. Matt, as you know, is a frequent commenter on the BLOOM blog and is also a friend of Ben's. Matt, coincidentally, happens to live right by the zoo!

I've played telephone tag with a contact at the Catholic School Board to find out about possible schools there, but haven't had time to follow through.

Ben is still going to the club with D'Arcy.

I have to follow up with the Toronto board about going out to see some potential schools. As you know, it is hard to fit all of these things in!

Next week I am joining a team from Holland Bloorview for intensive training in patient- and family-centred care in St. Louis. Family-centred care is about recognizing families as equal partners with professionals. Almost 450 participants are attending from across North America and further afield.

It's easy to get focused on obstacles and areas where progress hasn't been made. What items have you checked off the 'to-do' list related to your child. Tell us!

Hoppy Easter!

We had a pretty good day! We got to Mass smoothly and everyone looked cute. Mass behavior was fairly decent. The kids scored in their baskets with art supplies, new towels, a "big" toy and candy. I think all they ate today was candy. I scored a nap on the couch and Cole took a loooong nap in his crib. Georgie was out and about with Adam all day and Higgins had a grand adventure running up the street, off leash.

Pics to come tomorrow... we're beat!

I sense a disturbence in Master George

We got the results from Georgie's OT visit today. He has issues.

When compared to his peers, George shows a definite difference in performance in the area of sensory registration. This is the ability to recognize sensory input. It takes less input for George to notice and respond than other children his age. He shows a difference in the area of sensation seeking, low threshold and sensory avoiding. He seeks information less than children his age and becomes more easily over stimulated. The area affected are: visual, vestibular and auditory.

We now have a sensory diet for Georgie. It's alot like a normal food diet but, um, doesn't involve food. Like food, it feeds the areas of his body that he neglects. He doesn't seek sensory information for those three areas of his body so we have to "Feed" them. The OT typed up a few ideas, like singing songs, reading books and looking for objects, spinning and swinging.

I'm feeling a little overwhelmed. Yes, alot of them can be added into our day but musical instruments? Hear that noise? It's the sound of my musician friend DYING of laughter! I don't HAVE toy instruments in our house and for a very good reason! They make alot of noise and I have alot of noise making kids. Still, you know, he's cute. I guess we'll start with making some noise-makers!

(I actually did this this afternoon. I took some plastic eggs and some beans and put the beans inside the eggs. I used a piece of tape to tape them shut and then gave them to Georgie. He promptly took off the tape and dumped out the beans. Adam pointed out that when plastic eggs make noise, there is candy inside... and he was just looking for the candy!)

The OT's report explains alot of behaviors (like why we still have to drag him into then nursery after going to them for almost a year) . The day we got the information, we went on a long walk to take Joseph to a party. He didn't want to ride int he stroller on the way home, so he walked the trail (paved) in his bare feet, splashing in puddles and listening to nature sounds. I am beginning to tell when he's worked hard on something that the rest of us don't normally have to, like speech and now sensory issues, because he SLEEPS. He slept well that night! Today, when we were off our normal diets and he had loads of dairy, gluten and gummi treats :) he was a crabby pistol!

What caused all this? It could be a variety of things. I do think genetics play a part. I don't think the whole late term preemie thing helped. Causation? Corrilation? Who knows?

We meet with the OT in person this week and I'll hopefully get some more tips and advice but, for now, we have a good start.

How do you love your mother (earth)? (Quick takes Friday)

Here at the Walden house, the Herd and their parents are all about the eco-friendlyness. We reuse, reduce and recycle to the best of our ability. Even with a family of six and a giant dog, we have way, way, way more recycling on the curb that we do trash.

How? Let us count the ways:

  1. reuseable grocery sacks- When Camille was one, I bought a new bag for a dollar every time I went to the store. Soon I had enough for all my shopping and then various places starting giving them away! I have ones from my kids' school, MOPS, Lowes (awesome swim bags) and the Sounds of Pertuss. They hang up outside the door to the garage or stay in the van. I even have cool ones for produce that will come in handy during the summer when we pick from our own garden or go to farmer's markets. Heck, they work now at the store! When I do forget them and get a plastic or paper bag, we . . .
  2. reuse the bags- a pooper-scooper bags, for wet or dirty diapers, to send to preschool or the nursery for accidents, in the bathrooms to line trash cans, to throw away yucky dog barf paper towels, to take to the store again for another round of groceries.Or you can even recycle them at Wal-Mart!
  3. Recycle everything- or as much as possible. I will admit that we have such a dinky recycle bin that the stuff I cannot cram into the garage gets tossed. I'm working on fixing that. We have three bins in the house- one in the kitchen and one each in the upstairs bathrooms. I chuck empty shampoo bottles in them although sometimes I...
  4. reuse the bottles- a fantastic movie about the bottled water industry is "Tapped." It's like "Food Inc" for water and is avialiable on Netflix streaming. It's fairly safe for the kiddos to watch although some of the footage of the sea life and the plastic bottles might be upsetting for very senstive kids. For my older two, it really hit home that plastic bottles can harm other living beings and was a great starting point for a discussion. Although I prefer bottled water over soda and sports drinks, we are now comitted to bringing our reuseable metal bottles with us. Can't afford a 20 dollar (or more) metal bottle? Look for a BPA-free plastic bottle. And when you do get a drink from the soda fountain?...
  5. Think of all the uses that cup can have! - I heart fresh brewed iced tea from places like CFA and McDonald's. When I'm done with the cup, it hits the recycling bin but I try and get one more use out of it- filling it with water to drink, letting the kids use it in the bathtub, sandtable or water table. Especially craft people can probably find a craft use for it too!
  6. Go green with your household- After putzing around for too long, I finally made the switch to greener chemicals in our washer, Charlie's Soap. I like that I can use it on my cloth diapers and our clothes. I use vinegar as a fabric softener and oils as a scent, if I want them. I bought lavendar and orange oils over a year ago. They are pricey but a little lastest a long time! I use water and vinegar for all my cleaning and microfiber cloths for dry dusting. (I haven't founds something to replace Pledge- any ideas?) When I need a kick in my cleaner, I add Dr. Bronners- which I also use as a body wash on the big kids. For the littles, I use Burt's Bees. As I told Adam, it makes sense to use natural- or more natural- products on our skin since it is our biggest organ! Of course, we have cloth napkins, towels, rags for cleaning, diapers... the list goes on!
  7. Buy what you need- that's the reduce part. Yes, we reduce our waste by reusing items but we also try not to buy more than we really need. We don't do anyone any good if we routinely by more food or goods than we need and let the excess spoil or sit stagnet in our house.
Are we perfect? No. Could we do better? Sure. But every little bit helps! Every time we put a cloth diaper on our baby instead of a disposie, every time we recycle a paper, we are helping our earth. And all those little things can grow into one big change!

Note: I have brought items from Reuseit.com before and like their service. The links, however, are not an endorsement but just a sample of where you can buy the products I meantion.

Six Days After Rhizotomy

This morning Nina was singing one of her Bible songs from Bullfrogs and Butterflies, "Be Strong and Courageous." And I paused a little thinking how strong and courageous Nina has been for the last week.

"You know Nina, you are strong and courageous"
"I am?"
"Yes, yes you are. You are teaching all of us what it looks like to be strong and courageous."
"Thanks mom, you teach me a lot too."

I had not seen Nina from Sunday night to Wednesday afternoon, and I was impressed at how well she is doing. She is doing incredibly well emotionally, but also physically. She is moving around, sitting on her own and crawling.

You see, after a rhizotomy, kids are weak. The spasticity is gone, and all of a sudden they need to re-learn how to sit, stand, and move. They say it takes about a year to regain the muscle strength from before the surgery. The difference is, the right muscles will actually be working! So while Nina could "run" with her walker, right now she can barely hold her weight.

I did not expect her to be doing as much as she is doing now. Andy and I were talking, and we are reminded that our little girl is a fighter. She was born at 27 weeks and has Cerebral Palsy. She grew up in an orphanage, but she was a fighter, and she continues to try so hard. I am not surprised at how well she is doing, but rather in awe of this little girl, who has gone through so much in life, yet stands assisted with a big smile on her face. She is indeed teaching me what it looks like to be strong and courageous. She is amazing. I feel so incredibly grateful that I get to be her mother. It is an honor to call her my own.

She is doing so well, that they are thinking she will be realeased next Friday! All along we thought we would be here for her birthday, and now we migt be able to have a party and celebrate at home! We will have to come and stay at the Ronald McDonald house for about a week or two, but that is better than the hospital and all 5 of us can stay together!

As for pain medication, Nina is basically only taking Tylenol 3 or 4 times a day and then a stronger pain medicine in the morning.

Nina is supposed to sleep wearing leg braces (that keep her legs straight) and she hates them! So that has not gone so well. Nina is a belly sleeper, so instead we will incorporate time during her day to wear these.

Today, as we were playing with Nina's friend, Nina pulled herself up to a stand and stood for about 10 minutes. I helped her with balance and positioning. She is phenomenal.






Book review: Out of My Mind


Heather Morgan wrote to me about her daughter Kaitlyn (above) who wears leg braces for problems with bones in her feet. Kaitlyn, 10, had read Out of My Mind, a book about a girl with cerebral palsy, and could relate to many of its themes. I interviewed Kaitlyn to find out more about this book.

BLOOM: Describe the book Out of My Mind.

Kaitlyn Morgan: Out of My Mind is about an 11-year-old girl named Melody who has cerebral palsy and can't talk or control her body. She goes to a special class for disabled kids in her school, but the lessons are really boring for her, because she is really, really smart and has a photographic memory. In Grade 5, she starts inclusion classes with the regular kids in her school, which she really enjoys. When one of the kids in her inclusion class gets a new computer, Melody has the idea to get herself a 'talking' computer, so she can communicate better than with her Bliss symbol board. With her new computer, she joins the quiz team, and is chosen as one of six kids to represent her school in the city competition. She and her school win the tournament, and will move on to the country competition. But when it's the day to leave, her team goes on without her.

BLOOM: What is the character Melody like as a person?

Kaitlyn Morgan: Melody is a really kind person. She would be my friend if I met her.

BLOOM: How did you relate to Melody? In what ways are you similar?

Kaitlyn Morgan: I relate to Melody in many ways. We both are different than regular kids. We would rather be normal. We're both smart and enjoy similar things. We've been teased for our differences. It's hard to be the only kid in my school with braces and reading a book like this was almost like I had a friend like me.

BLOOM: What have you been teased about?

Kaitlyn Morgan: I have been teased before about my braces and that I talk funny.

BLOOM: How do things change for Melody when she gets voice technology?

Kaitlyn Morgan: When Melody gets her talker, she can stand up for herself better. She can show how smart she is and prove she's not stupid. She can tell her parents she loves them.

BLOOM: In the book Melody is initially in separate classes for kids with disabilities. What do you think about that?

Kaitlyn Morgan: I think some of the time, you want to be with people like yourself. But you also need to be with other people. Regular kids need to learn how to cope with people who are different. You can't blame them for not being like you.

BLOOM: In this book Melody primarily has physical disabilities. What if she had also had intellectual disabilities, and it was more challenging for her to learn?

Kaitlyn Morgan: If Melody had intellectual differences, the book would be very different! It's sort of based on the fact that she's so smart and can't share any of it. But, if she couldn't learn the same, I think that she would still be smarter than people expected her to be. She's just a clever person!

For children who do have intellectual disabilities, I think you need to work a little harder to be with them. I think that if you set your expectations to a lower level though, you might be surprised. The kids might be really smart.

You just have to set the right expectations. Not too high, not too low.

BLOOM: Who do you think would enjoy this book?

Kaitlyn Morgan: I think anyone from age 9 to 13 would enjoy the book. I love reading, and I find that the closer your age is to the main character, the more you enjoy the book. I also have leg braces and this book is one of my favourites because Melody is different, sort of like me.

Be still










Last night I sat for an hour in silence on a little red cushion, with my legs crossed in front of me, my hands on my legs, palms facing up.

There were candles lit and the scent of incense burning and the silence began with the gonging of a bell. I sat among 15 or so others, trying to follow my breath as my abdomen filled and emptied. Whenever a thought entered my head I said 'thinking' to myself, then focused again on my stomach and the incoming breath.

I was at a Shambhala meditation centre participating in a free 'sitting' practice.

I was inspired to attend this session after a fascinating interview with Tim and Gina Gort last week. Tim and Gina live in Grand Rapids, Mich. with their three daughters: Gwendolyn, 8, Violet, 2 and Eliza, 1. Gwen and Eliza have cerebral palsy. The girls use g-tubes and Gwen has a tracheotomy for breathing problems. Both children require round-the-clock care. The Gorts are the focus of an interview about respite care in our June print issue.

If you've been following them on their blog, you know that each parent has taken at least a week or more of respite, on their own. Gina went to a convent for 10 days. There she met with a spiritual guide and did meditation, yoga, reading, writing and reflection. Tim spent a week climbing the Smoky Mountains. While one parent is on retreat, the Gorts have nursing help during the day, but at night time the remaining parent supports the children alone.

"As Gwen got older, and then Eliza came along, I realized respite needed to be more than a break -- it needed to be a way of life," Gina says. In addition to annual individual retreats, the Gorts have weekly date nights -- when a nurse and a babysitter watch their children -- and Gina works meditation and writing into her days.

"This is new for us and it's taken us a long time to get to this point," she says. "I have to go away to not only get a break and get rejuvenated, but to come back with tools and ways to be in my situation and be okay with it."

The Gorts have me thinking about 'time away' in a new way -- as a way to sustain yourself over the long-term. But they emphasize that we should start small. So I'm starting with my red cushion. What about you?

So Far So Good

Nina got to meet her little friend who had the same surgery the week before. Little A is there with her daddy, so the little girls get to play together while the daddy's hang out. Turned out pretty good that Andy is the one staying with Nina at the moment.

As you kind (kind of) see, Nina is dressed! The OT comes in every morning to help Nina get dressed, there is a lot if therapy that takes place while this happens. Sitting, standing, pulling, balancing, etc. And Nina has no clue that there is a lot more happening besides getting dressed!

So this morning Nina and A took a stroll together and decided to play the piano.

And for your enjoyment, here is their recital. You may clap at the end if you wish.



"Our Favorite Posts" on NPN

Some of the fellow authors on the Natural Parents Network complied a list of their favorite posts. I didn't submit one, since I don't normally write real essays or helpful advice posts. But there are some goodies in here, whether you are looking for information on parenting, toys or just need to know you are not alone in  your emotions, struggles and joys.

Maybe today I'll try and figure out my fave posts!

Rhizotomy Day 4 (post-op)

Nina had a pretty sleepless night last night. It sounds like she laid in bed quietly but was awake most of the night. She has to wear her leg braces and she seems pretty bothered by them. Andy finally took them off at night. She had a melt-down in the morning, so it is pretty obvious that mornings are hard. From resting to waking up, she is having some pain. Andy arranged so that she can get her extra pain meds first thing in the morning. Other than that she is just taking Tylenol.

Nina was moved to the rehab unit, and Andy says the room is pretty big. We will have our own refrigerator and you can make this room feel a little bit more "homey."

Andy and Nina explored the hospital today, so they were out and about in elevators, halls, and I believe they visited the peds floor play room again.

Unfortunately because of the timing of her move and the fact that she really needed a nap, Nina ended up having no therapy today. Andy tried to stretch her and put her leg braces on, but eventually she was crying insisting that they hurt. They came off with a fair warning, "This is the last time we take them off, you will have to wear them every night."

Andy did say it is fun to see Nina sitting up so well and seeing her feet lay flat on her foot rest on the wheelchair, something that did not happen before (only her toes would touch and with her braces on she did not quite get them down either)

I will update again tomorrow from the hospital when I get a chance as Andy and I are switching home duties.

The Natural Parent Picks a Preschool

Ever thought about picking a preschool for your naturally parented child? My article on the Natural Parents Network can help!

A lazy day

It's weird that a good day is defined as:

  • visiting a friend who has a sick kiddo and leaving my daughter there for a spur of the moment playdate;
  • playing bubbles with the little boys;
  • convincing Adam to FINALLY, after 16 months, hang up the danged quilt in the baby's room;
  • cleaning up only half a box of dumped rice krispies (unlike the time a certain toddler dumped an entire, new, box of Fruit Loops on the floor);
  • watching the toddler (ahem, GEORGE) feed Higgins his dairy and gluten free lunch and not count every single penny of that expensive gluten free food go down the dog's gullet;
  • going to Wal-Mart with only the two little dudes. Yup, shopping with just two kids is EASY!
  • picking up all the clothes Georgie spilled on the floor- the clean, folded clothes;
  • cleaning Joe's room with him;
  • picking paint colors for the kids bathroom.
  • vacuuming only once;
  • pulling Cole off the stairs only three times.

Overheard: Cole's first

Georgie was sitting in the back of the shopping cart, knocking on a box.

Laura: Knock-Knock! Who's there?
Cole: DADA!

Another shopper overheard us and laughed. He was perfectly clear!

True Mom Confessions

Friday, I took Cole upstairs to nurse to sleep while I surfed the internet. Camille was watching TV and I thjought Georgie was with her.

Just as Cole was falling asleep, Georgie came up to me, distressed. He had something all over his fingers and I thought it was peanut  butter, as his lastest trick is to eat PB from the jar with his fingers. I leaned in to lick it off...

... and in a split moment, I realized with WAS NOT PEANUT BUTTER and he was BUTT NAKED.

I dashed off to throw Cole in his crib and wipe up Georgie. He was upset because he was dirty and I was upset because HE STRIPPED NAKED and I had NO IDEA where his POOPY diaper was!

After putting Georgie in the tub, I sent Camille on a mission to find the diaper. The chica can find poop. She located said diaper in the laundry room in front of the washer. I found the clean clothes in the hamper.

Well, at least he knows where they go, right?

After calming down, I told Georgie he needs to keep his diaper on. He shook his head no. I said, "Well, if you don't want to wear a diaper, you need to do pee pees in the potty." He shook his head no.

Later that weekend, he stripped off his PJs. I also found him trying to take off his shirt to put on one of Camille's dresses. Does this mean my tot is a cross dressing stri p perr?

Seven years old!

When did my little five pound baby get so big? Joseph turned SEVEN on the 13th. He's getting so big and tall. I can't really look down at him now because he is almost eye to eye with me. And I think the kid could take me out. Thanks to TKD, he has some muscles!

Sadly, there are few pictures of the big birthday bash with six of his friends. The boys from his adventure guides spent the night and I took Camille and Cole out of the house. We went to the mall and did a little shopping. The weather was "meh" so the boys were mostly inside, giggling and being silly. There were alot of Nerf Darts thrown, from what I hear. :)

The sleepover was a smashing success. All the boys know each other well so we didn't really have any friend problems. They did all go to sleep at midnight, which means Adam and I went to bed at midnight! We spent the rest of the weekend recovering. Apparently, we are indeed old!

The big gift seems to be guns, in all shapes and sizes- nerf and water guns. Heh. Should be an interesting summer. We got him a couple books and tickets to a Royals game.

Yes, books! Remember the people who said that he wouldn't be a good reader if he was not reading by kindy. HA.HA.HA. He's awesome! He reads so well and reads to himself, in bed! He's become very fluent when he reads outloud. So proud!

our pine wood derby champ!

Honey, who has been reading Twilight to the toddler?

Georgie shows his support for Team Edward, much to Higgins' dismay

Disability 'is a part of me, but it's not all of me'

I had the privilege of speaking at an education day for Toronto hospital communicators on Friday.

I was asked to speak about writing about people with disabilities.

I spoke about how too often we fall into using value-laden language that either portrays children with disabilities as victims or as heroes -- as somehow 'below' or 'above' the rest of the population, but not as a regular part of 'us.'

Lucy Nyman is a woman with a disability who spoke eloquently about what is was like to grow up with cerebral palsy. She talked about living in two worlds: the world of her family, where she felt respected and whole, and the world of rehab and her segregated school, where the message was: "You're not good enough. You need to be fixed."

She recounted being forced to walk in her underwear back and forth in front of doctors and "being talked about like I wasn't there. You felt like an object being observed." At age 10, Lucy stopped walking, and doctors insisted it was because she didn't want to go to school. "I remember not being believed or accepted. They thought I was making things up."

Lucy talked about how rehab has to be done in a framework of empowerment -- where children are given privacy and choices and feel validated. "It has to be about empowering the individual," she said. "My disability is a part of me, but it's not all of me."

Lucy now works as a peer support coordinator at the Anne Johnston Health Station, a community health centre in Toronto that serves people with disabilities and seniors. I wanted to share her wise words with you.

Thank you Lucy! Louise

Rhizotomy Day 3 (Post-Op)

This morning the neurologist came in early in the morning to check on Nina (who was still sleeping and was still sleeping by the time he left) He said that they were removing the epidural and catheter today and we would see if she was ready for the rehab unit on Monday. Then he cautioned me that for most kids, this was their hardest day. I was not sure weather to believe him or not since Nina had slept so well and we had finished the day pretty well.

At about 8:30 am the epidural guy was in the room ready to take it out. Nina was still sleeping, and it did not go so well to be woken up only to be moved around and having someone pull a needle from your back. This is when the crying began.

There was a lot of crying today. Everything hurt, but Nina was especially complaining about her tummy hurting. She finally fell back asleep sometime in the morning and took  a little nap until the OT came to see her and work with her for a little. We were back to crying. Nina did really well, she sat for about 15 minutes with little assistance. If you are reading and your kid had a SDR, you know how good this is! Of course, she cried during this time too.

After the OT left, Nina continued to cry. She was crying so hard she was hyperventilating, so I had to leave the room and ask one of the nurses to come. We could not get her to settle down and she kept saying her tummy hurt. I could tell she really was in pain, and they had just given her some pain meds when she threw up.

Andy and Ellie came shortly after that and Nina settled down a little bit. Nina is not eating or drinking, so that makes it tough. By then the PT came to work with Nina and stretch her. We need to get Nina moving, but she cries every time we move her saying her back hurts. However, she wanted to get out of the room so we got her in the wheelchair and we went to the play room. She did great! She actually sat there for about 30 minutes! We did have to prop her up a little bit, but it was sweet to see her playing with Ellie. But then she threw up again :(

She eventually was too tired and needed to lay down, so back to the room we went. PT came back to stretch her some more and put her braces back on. Nina let her do this for hour and a half! In which time the catheter came off and Nina used the potty! We realized the cath must have come off before and Nina had been holding it for a while (she had been telling us she had to go potty). Andy also got to learn hot to do the roll in order to sit Nina up. Pretty challenging when you cannot just pick up your child and move them from place to place.

Ellie and I came back home and Andy stayed with Nina at the hospital. They went back to the play room and were there for a while. All of this is so good for Nina!

It was a very stressful day from an emotional standpoint...for all of us! But we are encouraged seeing Nina's physical progress.

On a side note, Andy and I were surprised how well Nina has slept in the hospital. Then today I remembered what the PT had told me before the surgery, "Nina will be able to sleep better, and maybe even sleep all night long." I guess it was true for Nina, and we have always had problems with her waking up several times at night. For the first time in her life, Nina has been able to sleep all night long! Sleep is so important, and I am just so excited that thanks to this surgery she will be able to get better rest.

Thank you again for all your prayers! We really appreciate it!

Rhizotomy Post-Op Day 2

Let me begin by saying that I am amazed at how well Nina is doing, really incredibly well. The only pain she has complained about is the catheter and her hand (because she hates having the IV and the "red light" on). There have been some rough moments where she is over the top with her emotions and she gets a good cry. These moments come usually when she is very tired, or when there are too many people in the room checking her. These days, although have hard stressful moments, have really been better than we expected. We expected intense pain and muscle spasm, and we have thankfully not had to deal with that. We have been praying, and many of you have been praying with us, thank you. We know God is the one that is carrying us through.

The day did not begin as smoothly. I spent the night at the Ronald McDonald house and got to the hospital at 8:00 am. Nina had had a really great night, slept all night, and had been happy all morning. Then I showed up and she was not happy anymore. I think she wanted me to baby her, and she asked me to rub her legs. Let's just say she was not tolerating anyone touching her legs this morning, and we lost her quickly. I had to leave the room, because I was making her cry even more. I am not sure if she wanted me to hold her or if she was angry with me. When I came back she was settled down. Andy gets the best daddy award, he really does incredible in stressful situations like this.

She was fine for the rest of the day, but her legs were pulled close to her and she was "flopping" to the side quite a bit. At around 12:30 she was allowed to sit up more, and we had some discomfort with the new posture, but it did not last long. She was easily distracted by the arrival of balloons! Thank you friends!

We had been told the Physical Therapist was coming at 1:00 pm and we knew our dear friends were on the way with Ellie, so we did not have her take a nap. Ellie and the Heitz's got here and Nina was already very tired, so she was a little emotional, but still did pretty well. I think Nina was excited to see her big sister and Ellie is such a great big sister!

Nina got some precious cards from her pre-school friends, and we looked at them all. Her friends also took some pictures of them, laying on the floor spelling her Name. Those pictures and cards will be decorating her room!

Nina then had more visitors! And along with those visitors were some of Ellie's favorite friends. Nina was about to loose it at this time.

By the time the Physical Therapist came, it most have been at least 4:00 pm. Nina did really well, she got stretched for about an hours and she finally got her leg braces on, which we were told they were supposed to have been on since last night. We knew they were supposed to be, but we are also sure we were not supposed to be the ones to put them on. Nina tolerated those pretty well.

By dinner time Nina seemed pretty tired. Our friends offered to stay so that and Andy, Ellie and I could go out to eat and get Andy and I switched around for the night (him and Ellie get to sleep at Ronald McDonald's house, I am at the hospital). When we came back Nina was sleeping. We woke her up at around 8:00 and she had a great day until 10:00 when she went back to bed.

She really is a trooper!

Tonight, as we were getting ready for bed, Nina said, "I am wiggling my toes! Mom, the surgery is working, it is really working!" And I wish you could have seen her face.

Tomorrow we hope the epidural and catheter come out, and then we will start getting her up and moving. She is doing so well that there is really a great possibility of her going to the rehab unit on Monday. That is pretty incredible to me. It will be great to get her to have therapy as soon as possible. I am so anxious to see move again.

I am not being able to upload videos, but will as soon as I can!



And as she sleeps, Nina is holding her pillow pet "Fluffy" on her chest. Amazing what a pillow pet can do. You can see in the last picture that Fluffy was by Nina's feet to make her legs feel better even if she had to wear those braces.

Dinner is served!























Friday nights Sallyanne comes and Ben cooks for all of us!

Selective Dorsal Rhizotomy-Day 1

It has been a long day. I will do my best to give you a quick summary of our surgery day.

From a medical standpoint, the surgery was a success. They said we would see improvements immediately, and in a way, we have. With my thumb, I was able to push Nina's foot in order to get it to 90 degrees. Incredible! Absolutely incredible. The down side, is that her muscles and body are having a hard time figuring out what is going on. Connections that were there are now gone, and some other connections are finally being able to kick in. After flexing Nina's foot, it was followed with some light muscle spasms, which we have heard are the worse to deal with after the rhizotomy. The surgeon advised us not to push that too much (knowing of course we want to see and try the difference) he did say this could bring out the spasms. Her legs are really super sensitive.

Nina has an epidural for the pain of the surgery and those nerves, it is not in the same place as an epidural for pregnancies. It helps, but Nina has sensation in her legs. She hates the catheter, this has by far been the hardest thing to deal with.

Emotionally she is a mess. It is hard to come out of surgery and feel so not like yourself. She finally came out of recovery at 3:00 pm and we had some very intense hours where she was crying and crying. They increased her pain meds and we feel the pain is being controlled pretty well, emotionally this is another story.

Tonight some friends came to visit, and Nina did really well with them here. And when I told her it was time to go to bed, she just closed her eyes and fell asleep quickly.

So now it is time for me to go to bed. Andy will spend the night with her and I will go sleep. Tomorrow morning he will go take a long nap while I am with Nina.

They said tomorrow sometime in the afternoon they would get Nina up (she has had to lie flat all day, and she has not tried to get up, which is pretty amazing)

I will update here again as soon as I can.

SDR Surgery Day

 We were up early this morning, as we had to check in at 6:15 am at the hospital. Nina did really well in the car as she held her pillow pet close. It was a gift from a sweet friend of hers from preschool, and since getting the pillow pet she has decided maybe she should marry him. I think she is easy to please!

She is loving her new sparkly blue wheelchair, and wanted to sit in it instead of having us hold her. And, to make it even better, she got a Strawberry shortcake sticker and a Belle sticker.
 Her "hat" is also strawberry shortcake, she loved it!
 She got to be a marshmallow. It is a special blanket to keep her warm, as it was important for her to be warm before the surgery.
 They gave her some medicine that really puts you out of it, so she won't remember a lot of the actual procedure. She chose daddy to go in with her, but we got a picture done before hand.
Andy said she was out in no time. Prep-time took a little over an hour, and her incision was done at 9:18 am. Please pray for the hands of the surgeon and for the people caring for her.

We have a good friend with us as we wait, and we are so thankful for that.

I will update as soon as I can.

Selective Dorzal Rhizotomy Part 2

Tomorrow is the big day. Bright an early we will be going to the hospital and Nina will have a Selective Dorzal Rhizotomy.

Today was a day full of doctor appointments and to go over all the procedures that will be taking place.

First, we met with the Orthopedic surgeon and he went over the gait lab test results with us. We actually got to look at the charts and see what her body is doing. It was really interesting to see where she is at compared to typical children. We saw what we knew, that her left side is  a lot stronger than her right side, that her steps are really short, and that she walks really high on her toes. Actually, her heel cord is so spastic, that it did not even register on the charts...no wonder she has no balance and really there is no way she could have ever walked independently this way. She is not only high on her toes, she kind of even "bends over" them.

From the orthopedic standpoint, this rhizotomy will dramatically reduce the number of surgeries she would have had without it. After the rhizotomy, IF we need to lengthen her muscles or tendons, we might just need to do it once, without the rhizotomy, we could be looking at doing lengthening of the same muscles maybe up to 3 times (because of her severe spasticity). Her bone deformities will have to be addressed, but the rhizotomy will help postpone when this needs to happen.

We then met with the surgeon, and he explained with detail what is going to happen tomorrow. They will remove a small section of her vertebrate so that they can look at her nerves. They isolate the nerves and they test one by one. Every nerve has roots, and if they have to cut some roots in a nerve they do not cut them all, but up to 40-60% of the roots.

Nina's amazing, incredible, wonderful Physical Therapist will be in the OR during surgery. She knows Nina best and she is an incredibly caring person. Knowing that she will be there gives me great reassurance!

Following the surgery, Nina will have to lie on her back for 24 hours. Her head cannot be above the incision site in order to avoid spinal fluid to leak. She will be in so many pain meds and sedated, that we are praying that she will sleep most of the time! Now, I have never had an epidural, but she will have an epidural and catheter until Sunday.

We thought Nina would have to be in ICU for a couple of days, but that is not the case. She will be in the regular pediatric floor until she is ready to be moved to rehab. Best case scenario, she would be ready on Monday...we will be happy if this happens by Thursday. Either way, it is incredible that she will be up and moving by then...

Which brings me to the next part, because "up and moving" will not happen as easy as it sounds. We were told to expect Nina to be very weak. I heard that from other parents and now also from doctors. She will have to re-learn to do everything again. Sitting, standing, moving her legs. She has been able to do this mainly because of her high spasticity, once it is gone, her muscles will get to work properly for the first time. Just like babies take time to learn to do all these things, it will take time for Nina. Hence the intense physical therapy to follow.

And to finish the day, Nina got her very own wheelchair to keep! The one she got to chose a color for (sparkly blue) and the one that she will get to use for the next 5 years or so. Pretty exciting!

The picture bellow from St. Louis gives you an idea of what this surgery "looks like"


We appreciate your prayers as Nina goes into surgery. Please pray for the surgeon, pray for Nina, and pray for us. I have heard time and time again that parents have a harder time than the kids. I believe that!

Thank you for your wonderful words of encouragement and for all the support and prayers that you have given to us. We truly are thankful. It is so incredibly reassuring to know that Nina is going into this surgery covered in prayer.

I will update as soon as I can.

Of interest






















Jennifer Johannesen has a lovely post about sons Angus and Owen (above), siblings and 'equipment' called Brothers, vacations and wheelchairs.

"I am reminded of something in these photos – Owen’s wheelchair was an integral part of him and his identity," Jennifer writes. "Angus used to hang off of it, sit in it, decorate it, push it around… If we were walking down the street together Angus would always seek to maintain contact with it somehow."

Check it out.

What do you think of this? Woman who withheld cancer drugs from son with autism found guilty. I tried to imagine what it would be like to be a single mom supporting a child with autism through gruelling chemotherapy.

Also of interest:

Disabled man sues Wal-Mart over firing

Deaf world: The rise of a new American culture

Right planet, right child

Globe of dreams

My dear friend Anne-Marie wrote about participating in Ben's life plan day on her blog Circle of Friends.

The photo to the right is a globe of dreams Ben and the group came up with. It includes having his own house, working as a zookeeper and travelling.

Anne-Marie was able to participate in the brainstorming from her home in Dartmouth, Nova Scotia, through skype.

You'll want to take a close look at Anne-Marie's blog, where she writes about parenting her son with Asperger's.

Three Days Before Rhizotomy

We are counting down the days before Nina goes in to have her surgery. In 3 days, Andy and I will be handing Nina over to a skilled surgeon who will open up her spine and find the nerves that are not working properly, cut them, and therefore reduce her spasticity. Thinking about it makes me dizzy, it is quite the surgery, and it is quite the recovery time.

Currently Nina is taking a drug called Gabapentin. You can follow the link and read all about it if you want, but basically, she is taking it for "pain management" due to the surgery. We are thankful for this drug, since I know that the hardest part of the rhizotomies are the following 2 days. This medicine is going to help. But it has been really hard too:

"If you are giving gabapentin to your child, you should know that your child's behavior and mental abilities may change while he or she is taking gabapentin. Your child may have sudden changes in mood, become hostile or hyperactive, have difficulty concentrating or paying attention, or be drowsy or clumsy."

Nina has been an emotional mess. She is crying all the time, and recently even multiple times at night, which is pretty frustrating because all 3 of my girls share a room. She seems withdrawn, and to be honest, this is very difficult. Why? Because we are seeing the "orphan" Nina that we had not seen for about a year. Her behaviors and emotional state are pretty tough. I keep reminding myself that it is not her, it is the medicine. After the surgery, she will be done with it and we will get Nina back! So if you think about us, please pray for this particular issue.

We would also appreciate prayer for Nina while we are at the hospital. Emotionally, even without this medicine, institutionalized places are hard for her. She really dislikes hospitals. We are going to be at a hospital for a really long time. Pray that this experience will not bring back her fears associated with the orphanage and her medical interventions done in Ukraine. Pray that she feels encouraged, cared for, and we will have Andy, myself, or my mom with her at all times.

On a positive note. There is another little girl getting a rhizotomy at the same time as Nina. This little girl was adopted from Ukraine the same year, has the same type of CP Nina has, and they are the same age. Pretty sweet! I think it will be great for them to have each other and maybe even do some therapy together!

What a week this will be! Nina's last day of school is tomorrow. Andy's last day at Bethany Alliance is tomorrow, my last day with some amazing teenagers in my small group is tomorrow, and then it is all surgery from there.

We appreciate all your support and covet your prayers!

And as a side note, I will be back on facebook to keep everyone updated on Nina's surgery and progress. Stay tuned, because this blog will also have lots of photos and video.

You Can Help!

See this precious little girl? This is Tasha 31 (Ember) and her forever family is getting ready to go get her and bring her home.

Let me tell you a little bit about her family.

The Senti's were a happy family with 3 boys. Then Lorene got pregnant again, and finally a little girl joined their family.  A little girl with an extra chromosome, a precious baby with Down syndrome. And a baby that changed their lives and hearts forever.

Last year I shared some pictures with you of a Down syndrome get together we had in St. Louis. This is where I met Lorene and her daughter.

Shortly after that, Lorene sent me an e-mail asking about what it was like to adopt a child with mobility issues, because like our family, the Senti's were feeling moved to adopt another child with special needs, and they had fallen in love with Tasha 31 (who they will name Ember). Tasha has arthrogryposis.

This is what is happening, most likely the Senti's will be given a travel date in the next couple of months (or weeks!) and they need our help! In order to raise the funds that they still need for their adoption, they are having an awesome give-away! They are giving an iPad2! For every $25 donation your name will be entered once, give $100 and you will be entered 5 times.

If you can't give $25 right now, give what you can. I remember when we were adopting we would get donations of $1, $2, $5 and I knew that someone out there gave either as much as they could or they thought they could spare a couple of bucks. And that little bit added up made a BIG difference!


CLICK HERE to give and get a chance to win an iPad2.

And prayers for the Senti family are always appreciated too!



She said it better than I did!

I stumbled across this blog from a friend's Facebook page. I was interested in a couple of her enteries from her "bio" page, especially about how Mary brought her to Jesus. 

Get this- it's about the NICU.

How Mary Brought Me Back to Jesus, Part One

Part Two

They were, like the Gospel reading today, very timely for me.