Postponed

Well....

I've had an interesting week/weekend.

We did the Race for the Cure on Saturday (with more than 50,000 people!!!).

My middle child turned 10. (PARTY!!)

We entertained company. (Fun!)

Both of my sons were suspended from school. (Within hours of each other. At different schools. Good grief.)

Two soccer games. (One professional. One with 10-year-olds.)

And in Spina Bifida news, my four-year-old daughter cathed herself on the potty for the first time. (HUGE. WONDERFUL. NEWS.)

So, I haven't quite had time to put together a post about doctors. (Sorry!)

Stay tuned next week (or maybe sooner if Kari has an opening) for a post about doctors...

Walking the 5K.

Tim and Isaiah ran it with the competitive group.

Then they walked it with us.

Crossing the finish line on Daddy's shoulders.

The Best Day Ever!

It's a day of "Celebration" in our house!

I can't believe I forgot the camera when we went to the pool this afternoon. As soon as we arrived back home, I had to take a picture. Why was this day so special? Let me explain...

Madilyn was born with Malrotation of the Intestines and Limpomyelomeningocele, a rare form of Spina Bifida. She had to have a complete GI reconstruction at 5 days old. Her doctors had to wait to take care of her spine and the massive lipoma until she was 7 months old. The lipoma completely filled her spinal canal and was compressing her cord. She suffered significant nerve damage to her right leg and developed nuerogenic bowel. Her medical history is extensive with 8 major surgeries.

In March, it was decided that Madilyn had sections of her bowels that were floppy and the nerve damage has become permanent. Our GI doctor and Urologist decided the best route to go was to have a MACE Procedure done. They took a piece of Madilyn's bowel and created a tube that attached to another portion of her intestines and then connected it to her belly button. The reason being, so we could insert a 'cath' nightly and run saline through the 'cath' and it would enable us to flush her intestines. This would prevent her from having so many accidents on herself and give her more control over her body. It was not the easiest of surgeries but today it was apparent that it was completely worth all the struggles.

Madilyn went to the pool wearing only her swim suit for the first time ever. Before it required us to put a swimmer and then special swim pants over top of those before we could put her in a pool. She would have to be changed many times because she had no bowel control. The smile on her face said it all today.

It is so important to celebrate these kinds of moments. We each have magical moments! They may vary in size and degree but we have them. The trick is being able to see past the hard stuff and embrace the measure of joy within in each moment.

Today I am filled with gratitude for those who care for our Madilyn. Our team of doctors who have become part of our family....Dr. Kirsch, Dr. Busch, Dr. Reisner, Dr. Lewis, Dr. Vicki and Joe who makes interesting things for Madilyn's right leg! I think we will make homemade milkshakes to close out this most wonderful day!

Our First Big Talk

Taken from Colleen's blog Choo Choos and Tutus with permission of course!! :)
Friday, April 9, 2010
Nate and I had our first big talk...

... and I told him he has Spina Bifida. It's not like I've tried to keep it a secret from him--I've brought it up casually many times, such as "We're going to our Spina Bifida playgroup. Did you know you have Spina Bifida just like these other kids?" and he'd say, "Yeah..." But he was too young to understand anything about it. Well, he's still too young to understand what it really means, but he's starting to understand a lot more than I give him credit for.

As I was putting him to bed tonight, I gave him his Keppra (seizure meds). He said, "Mama, am I sick?" I said, "No ... do you think you're sick because you're taking medicine?" He said yes. The conversation went something like this:

Me: Nate, did you know that you have a lot of really special things about you?

Nate: Yeah ... what? What special things?

Me: Well, first, you take this medicine because you sometimes have seizures. That means that sometimes you stare off into space and your brain gets a little foggy. Do you ever feel like that?

Nate: Hmmm. (thinking)

Me: Well, that's why you take this medicine, because it stops the seizures so you don't feel foggy and stare into space.

Nate: What else is special?

Me: You also have something called Spina Bifida. That means there was a boo boo on your back when you were really little, but the doctors fixed the boo boo.

Nate: I have a boo boo on my back? (feeling around to his back)

Me: No, not anymore, but you can see a line where the doctors fixed it. Do you want to see it?

Nate: Yeah!

We went to the bathroom, and I sat him on the sink with his back to the mirror so he could see his scar for the first time. Then we went back to his bed.

Nate: I have a boo boo. (very serious)

Me: No, not anymore. It doesn't hurt anymore. But because of the boo boo on your back, that meant you have had to work really hard to get your legs strong like they are now. That's why you go to the Horsey House (hippotherapy) and play with Miss Nikki. And you have worked so hard so that now you can run and jump and swim. And that's why you wear your car shoes (SMOs). Did you know that Mama doesn't get to wear car shoes, and Daddy doesn't get to wear car shoes, and Georgia doesn't get to wear car shoes? That's another thing that's special about you!

Nate: (smiling) What else is special?

Me: You're a really hard worker. Remember when you decided you wanted to jump? You practiced and practiced and practiced, and you learned how to do it all by yourself! I was really proud of you.

Nate: What else?

Me: Well, you talk A LOT. You know so many words, and you can talk all day long, more than anyone I know.

Nate: What else is special?

Me: You're a good big brother. You can make Georgia laugh, and she thinks you're great.

Nate: What else?

Me: Oh, something really special about you is that when the doctors fixed your boo boo, you were a little bitty baby in my belly. Remember when Georgia was in my belly, and my belly was really big? Well, you were that little and were in my belly once too. And the doctors went in and fixed your boo boo and put you back in my belly, and you grew and you grew and you grew until you were ready to be born!

Nate: Noooo, I'm not a baby. I'm a big boy.

Me: I know you're a big boy now, but you used to be a little baby.

Nate: Noooooo.

Then we read "I'll love you forever," which I actually think is a very creepy book, but it was appropriate tonight. And I started singing his favorite bedtime song, and he sang along with me.

Me: Oh, Nate, I just thought of another really special thing. You sing all the time. You sing like a little bird.

And for once, he didn't cry and complain as I left the room. He smiled and sang songs until he fell asleep.
Posted by Colleen at 9:22 PM

6 months old

Today, Carson is six months old and I as a mom am having a bit of a difficult time accepting the fact that my baby is already six months old. I can hardly believe it.


It happened--- before I even knew it, before I could catch my breath, it has happened. 


It was just over 8 months ago that I found out that Carson had spina bifida. I was 32 weeks along... I was so busy getting the nursery together... sewing... shopping.. planning.. dreaming... and  BOOM! The 100 mph whirlwind I was a part of stopped. I stopped.... And you know at that particular moment Ididnt think that I would ever be going again.

I was wrong, a incredible new whirlwind begun. This time more than 200 mph. His name was Carson and he has kept me busier than I ever could have imagined.

Busier feeding

Busier holding

Busier smiling

 Busier tickling

 Busier laughing

Busy

Busy

So busy and so worn out :)

It's the unexpected moments that definitely affect you the most.

Featured Child: Zach

Zach's Spina Bifida Level is: L3/L4

Scary Moments Happen:
The two scariest moments for me was seeing him the first time after his surgery. Seeing your child in the incubator hooked to tubes and monitors. The incision, was also much larger than I ever expected.

We are stronger than we ever thought we could be:
My strongest moment, was when he had his first shunt revision, October of 2009. We were on a famiy camp trip, with my entire side. Zach had been getting sick, he and I were just not getting any sleep and it is hard to deal with a sick little guy in a camper. I decided that I was going to head home, my husband and daughter stayed. We decided that it wasn't fair for our daughter to miss the family trip. When I got home, I checked in with the peditricians nurse line. He said due to his conditions, their protocal is to have me take him to the ER. So off I went. Managing to break my phone on the why there. I honestly thought it was the flu or he was teething, as he has just been seen by his nueoroligist on the 15th and this was the 24th. They did a few tests and I was told that he would be going into surgery within the hour. It was just Zach and I and I didn't have a way to let my husband know. Luckly i found my husband's dad number written down in a notebook I had it was a local number from the hospital. He called my husband to let him know. The shunt surgeries have been very difficult for me, but each time we have seen amazing positive changes in our son.
People still say stupid things:
What is his life expectancy. This was a person I went to see to try to help me deal with the rollercoaster ride of emotions, prior to his birth. Needless to say I never went back.
There are those who DO encourage:
We had to learn to cath at prior to being discharged. My husband was ready to go, as soon as they told us. Me not so much. One day my husband was at work and I decided I was going to try. I let the nurse know I was ready. We started the process and I began to cry. She told me not to worry about it. We would take it as slow or fast as I need, but that she was there to support me. It as something simple, but it meant a great deal to me. I didn't feel that we were just another patient.
Favorite Food:
Meat and Whip Cream (extra calories)

Favorite Feature:
His smile. He is the biggest little flirt.

A moment of Triumph:
The weekend before christmas 2009, he got into the sitting position by himself

A trial:
bringing your baby home : This was very scare for me. After birth Zach was taken to Children's hospital within three hours. He had his surgery the next day, that night he stayed in NICU. He was doing so well we were moved to the general floor. I like this as it let us be more involved in his care. However, I really struggled with taking care of his incisions. I cried, when ever I tried to look at it. I was afraid that I would not be able to properly care for it at home and he would ended up with an infection. We were also cathing and were completely exhusted. We stayed for 20 days. We just took it one day at a time and here we are now, he is almost two.



Thanks for all you moms who take the time to do this!! If you have sent me one and havent seen your child yet, he/she is coming!! If you havent sent me info about your child and would like to be "Featured" feel free to email me at Kari.leann@hotmail.com

Doctors

Just as every child is different, every child with Spina Bifida is different. Each requires a different set of doctors and specialists. Sure, there are some that are common across the board. But sometimes, there are a couple that it seems only your child has to deal with.

I remember the comfort in talking about Clinic without having to go into an explanation. Because the family we were chatting with already knew. They had walked the same road. They had sat in a room waiting for doctor after doctor to examine their child. What a relief!

And that is what this blog is about. Shared experiences. Encouragement through differences. Holding each other up and standing in the gap for each other when the going gets tough. Or the going just stops.

What a blessing Kari is to have started SpinaBifidaKids. And what an honor it is for me to contribute bits and pieces of our journey each week.

So, what do you want to know? What doctors do you visit on a regular basis? What doctors seem new or unique to your child's situation? What do you want to know about? What do you want to read? What makes you curious? Jealous? Oblivious? What have you learned along the way?

Next week I'll start a series on doctors and medical professionals. I would love some input as to which doctors you typically deal with.

Thanks for being part of the community.

Chasing Miracles

I was having a really bad day when I stumbled upon the Spina Bifida Kids Blog. It was exactly what I needed at the the very moment I needed it. The past 7 weeks have been a really hard with our daughter Madilyn. I was feeling so overwhelmed. I then found this blog by accident. God works in mysterious ways. I was in need of hope and faith and I found it. The funny thing is I am usually the one who always pulls everyone else up but this time I was the one who needed the lift. For that, I thank you all.

On this beautiful Mothers Day Weekend, I am grateful for all the experiences I have had as the mother of three. Our youngest daughter Madilyn was born with Spina Bifida in 2004. I found a blog entry that I wrote in 2008 that I thought I would share on this most special of weekends.

Monday, December 1, 2008
Miracles are expected in our house. They are prayed for on a daily basis. They are expected because of the choices we make and how we live our lives. Sometimes they arrive in packages and other times they arrive in small and simple ways. But, we chase them. Its become a quest in life to find as many as I can....You see, I am the mother of Madilyn. Today, we went on one of our many drives to see one of our favorite doctors, Dr. Busch. He is just one of the doctors on our team that cares for Madilyn. Today was a good visit. They were able to take the pin out of Madilyn's foot. On October 29th, my lady bug had a simple surgery to fix her baby toe which would prevent the recurring pressure ulcers that were coming under her toe. I have come to realize that nothing with Madilyn is ever quite so simple. So, after 2 trips to the ER, a week stay in the hospital, and 7 casts later, we are finally healing. Miracles happen. Madilyn's life is a miracle. Her smile is a gift. Tonight she was tired. She said she doesn't want to go back to see the doctor tomorrow. I reassured her that we didn't have to go back tomorrow. But, we will return in two weeks. Its our routine. Hopefully the yellow cast will come off for good. If not, we will deal with it. We will chase down another miracle for her.

Some people chase butterflies, but at our house we "Chase Miracles"! May your Mothers Day be filled with hope and courage! I look forward to sharing my experiences with each of you. I think I will go hug Berkley, Tyler and Madilyn!

Mommy number 3!!

Happy Mother's Day everyone.

The reason I wanted us bloggers to talk about ourselves is I wanted a face behind the words. I also wanted to encourage MORE faces. (In other words Id love for some of you to start submitting things for us. whether once every other week, once a month or just plain one time.) The reason I started this site was to be an encouragement to all the moms, dads, aunts, uncles, friends, grandparents and anyone else who has contact with a child who has Spina Bifida. There are so many view points and ideas from all across the world. I believe the more we add the more we can accomplish. So thats that... if your interested feel free to email me kari.leann@hotmail.com

So its my turn to talk about me.... How fun! : )

I'm Kari. That's pronounced Carrie not CarE. I always tease my mom that she spelled my name wrong. I like to take on way too many projects. All the time!! Hence this website. raisingtoby and urbanupcycling.

My mother in law is always telling me to say, "NO" but honestly I like the chaos and I like saying yes.

I love being a mommy. I'm venturing into the homeschooled world this fall. aaaaaaaaaah, but attempting to still stay normal and keep my kids pretty normal. I want another baby. I think I'll always want another baby though. I wonder if you get over that. I never EVER thought that I would be a baby wanting, homeschooling mommy but WHO KNEW!! : )

I have three kiddos. Gracie (5) Toby (4 in 13 days) and Milo (15 months)

I love being a wife. I hate the laundry and cleaning and cooking that go along with it. But I love the relationship. : ) We are the absolute best of friends

I love crafting and sewing. I love upcycling, (making something better than it was originally meant to be, like sheets into a purse or lima beans into a wreath) You get the idea.

I love reading. I dont do it often because I get bad mommy syndrome and read for hours. Just finished a series on Amish finishing each book in about a day and a half.

I love taking pictures. I like to pretend I'm a photographer. So far ive just been doing stuff for friends and friends of friends. But who knows..maybe one day Ill venture out a little more.

I love God. I believe in a real, personal and saving relationship with Jesus Christ. I am very involved in our church. my husband is the full time youth pastor there so its basically our second home.

I'm absolutely shocked at how much Ive changed since having children. I like onions now, pickles now and even mexican food. All of which I HATED before. Priorities are different, life is different things are just plain different. And I am soooo thankful.

I'm in a redecorating stage right now in my life. Changing up everything in the house all the time. Painting, moving furniture. So far ive painted my cabinents Green, converted the garage to a family room, painted big white circles on the cement on the back patio. And honestly so much more. All the with Nate's help by the way.

So okay, that's it for me. I hope this helps put a face and maybe even a personality with the person behind this site and behind some of the posts. Thanks so much for following, commenting and just plain reading!!!

Mothers week

Mothers week!!!

   Let me first say... thank you!!! Thank you to all of you mothers. You are a precious gift. I have learned the last few months just how precious. I found this the other day, and thought that it couldn't be any more true.

Before I was a Mom

Before I was a Mom -
I slept as late as I wanted and never worried about how late I got into bed. I brushed my hair and my teeth everyday.
Before I was a Mom -
I cleaned my house each day. I never tripped over toys or forgot words to a lullaby. I didn't worry whether or not my plants were poisonous. I never thought about immunizations.
Before I was a Mom -
I had never been puked on - Pooped on - Spit on - Chewed on, or Peed on. I had complete control of my mind and My thoughts. I slept all night.
Before I was a Mom -
I never held down a screaming child so that doctors could do tests...or give shots. I never looked into teary eyes and cried. I never got gloriously happy over a simple grin. I never sat up late hours at night watching a baby sleep.
Before I was a Mom -
I never held a sleeping baby just because I didn't want to put it down. I never felt my heart break into a million pieces when I couldn't stop the hurt. I never knew that something so small could affect my life
so much. I never knew that I could love someone so much. I never knew I would love being a Mom.
Before I was a Mom -
I didn't know the feeling of having my heart outside my body. I didn't know how special it could feel to feed a hungry baby. I didn't know that bond between a mother and her child. I didn't know that something so small could make me feel so important.
Before I was a Mom -
I had never gotten up in the middle of the night every 10 minutes to make sure all was okay. I had never known The warmth, The joy, The love, The heartache, The wonderment or the satisfaction of being a Mom. I didn't know I was capable of feeling so much before I was a Mom.

I am so so happy to have begun this journey as a mom, and I am so excited. 

Here's a little about myself...My name is Karen Orr. 

I am short, and I am blonde ( who've probably guess that by now) I have an extreme sweet tooth, which is quite a problem. I love to read, sew, and cook even though, I am not very good at the latter two. I hate to do laundry. I always wear sandals, and love being barefoot. I like hockey and baseball. I love sno cones, chick-fil-a, and Mexican food. I hate blow drying my hair and would prefer to always wear a ponytail. Before my current teaching job as a mom; I was the 4th-6th grade teacher at our christian school. 

I have two dogs who consider themselves my children as well.

I have literally been raised in my church, and I share that with you because I am who I am today for it.My home life growing up was anything but normal, and my church family really became my family. My moms, dads, and grandparents. Their influence and testimony is what led me to my own personal relationship with Christ. This relationship has been my most important. God has been so very good to me, and He has blessed my life above and beyond what I could ever have imagined.

I am married to an amazing guy who I really am in love with, Bob. He and I grew up knowing each other in church. In fact, He was my youth director. :)  and regardless of what he says, I liked him first, and I knew I was going to marry him. :) He and I married in January of 2008. 

We both wanted children and were so excited to start our family. I remember the night I told him I was pregnant... He was speechless. When he did finally find his voice all he could say was "that's awesome" and he repeated those words about 100 times.

He is a computer guy, and the youth director at our church. He is also an incredible strength to me.

I have thoroughly enjoyed blogging, it has been my " getaway" in a sense. It is my opportunity to also brag about my little man. I also blog with the intent to be an encouragement a blessing, and a testimony. It is my desire that others may smile, and know that even though this journey is not what we asked for... it really is for good, and God really is right there with us. Happy Mother's day!!! May you all know you are loved.

Mothers' WEEK

(NOTE: Clicking on a link in this post will open a new window and will not take you away from the spinabifidakids.blogspot.com page.)


Last week Kari (raisingtoby.blogspot.com) emailed me with the idea that in preparation for Mothers' Day, we write about ourselves. Her idea included a photo and a description of why we blog, what our hobbies are, what kinds of food we like, what we can't live without, best friends, etc...

I love this idea!

So...

I'm Karin.

I started blogging because my brother started a blog. And as has been true for most of our lives, whatever he does, I do. Better. A couple of days later, my sister started a blog. Then all three of my sisters-in-law. And it became a great way for us to stay in touch as the miles between us grew.

But over the years, my blogging has taken on more direction as I've started posting regularly at 5 Minutes for Special Needs and occasionally at Adopting the Older Child. I've written guest posts for other blogs, and currently maintain three personal blogs (HennHouse, HennHouse-Fitness, HennHouse-food), and my nine-year-old even has a blog where he posts some of his artwork and photography.

I guess my blogging has evolved into community. While I started blogging to keep up with my older brother (and he is only 11 months older than me, so you know how that goes), I KEPT blogging because of the connection I felt with the friends I was making online. I have met the most interesting, most unorthodox, most eclectic, and most genuine people while blogging.

And now I can't stop.

Some other random things about me:

I'm a working mom, which has some unique challenges when you've got three special needs children. I work at a major research university in marketing communications. Primarily, I'm responsible for email marketing. But I do try to compartmentalize. Except when my son is suspended, again, and I've either got to work from home or take him with me. Which can be, um, interesting.

I've got three kids. I consider raising them my job. Sure, I work outside of the house, but that just pays the mortgage. My REAL work takes place inside the walls of our home. And on the front lines where I wear the hat of advocate, teacher, disciplinarian, comforter, voice of reason, voice of "that's just stupid" (I have a teenager), PR representative, photographer, movie producer, cheerleader, manicurist, activities coordinator, coach, therapist, nurse, maid, short-order cook, etc... I consider it the highest honor to be mom to my three.

I love to cook and bake. LOVE it. For my family. Friends. Strangers. Bake sales. If there is a reason to be found to smoke a brisket and have a crowd over, I will find it. I wouldn't say that we like to entertain, but we do like to fellowship. And the work doesn't all fall on me. My Tim is pretty amazing in the kitchen, too. And, he does all of the dishes.

I also love shoes. Clean floors. Cookbooks. Pajamas. Christmas. And going barefoot. I save WAY too many things. I like clean, clutter-free living, but I also have a hard time letting some things go. I like to be organized, but that doesn't always work out for me either.

My husband is my best friend. Really, I think I'm the only one who gets his humor, and that's ok with me. I left my small hometown at age 18 for the "big" city thinking I was leaving the farm girl behind, but I married a tree hugger, so, we snack-scape and my back yard is one big year-round vegetable garden. And I find that I don't mind one bit.

I cannot be defined in one word. But, if I had to choose one thing that I love the most, it is being a mom. I have learned so much about love and life from my kids that I don't ever lament for the time in my life that I didn't have kids.

Being their mom is what I was meant to be.