Monday, May 31, 2010

Doctors: Urologist

She wheeled up to the adapted potty chair in the family bathroom at the preschool. She unbuckled the seatbelt on her wheelchair and carefully pulled herself out of her wheelchair. I was kneeling on the floor by the toilet and she clung to my shoulders as I helped her out of her clothes.

Once she was situated on the potty, she prepped the catheter—just like we'd been practicing for weeks—and for the first time, she cathed herself. Not that she didn't require help. Not that she took care of every step of the process. Not that she could even reach the faucet to wash the catheter when she was done. But she’s only four-years-old. And the prediction was that she would start to learn to cath herself when she was seven or eight years old.

But she is FOUR.

Which means she did it four years early.

I should not be surprised. She is Esther-Faith. Esther-Faith does EVERYTHING on her own timeline. Predictions, diagnoses, and opinions mean nothing to her. In fact, I think every time she hears "can't" or "won’t" or "doesn't" she also hears "I dare you" or "prove me wrong." And she pretty consistently does.

It has been a long process. We've been working up to this. But her willingness. Her desire to be as independent as we'll allow. Her unbelievable tenacity. Those things combined with a physical therapist who made sure the environment was appropriate and welcoming created an early opportunity for Esther-Faith to learn to cath herself.

And now we can't wait to tell her Urologist. Or at least the nurse. Because even though she did it early, Esther-Faith is typical when it comes to needing these specialists. According to "Living with Spina Bifida" by Adrian Sandler, "About 95 percent of children with myelomeningocele have a neurogenic bladder."

And as is the case for most children, Esther-Faith has also had the litany of tests that come with having a neurogenic bladder. Some of those tests include:

Renal Ultrasound: during which pictures are taken of the ureters, kidneys, and bladder to determine the structure of the urinary tract. This test is important to determine if hydronephrosis or hydroureter exist.

Voiding Cystourethrogram (VCUG): an x-ray of the urinary tract that is taken after a special fluid is placed in the bladder.

Urodynamics Exam: a test to meausure the stiffness of the bladder wall using pressure monitors inserted into the bladder.

One of the primary things the Urologist does is help you keep your child's urinary tract clean and healthy. One way this is accomplished is for the Urologist to work with you to determine whether or not a child needs Clean Intermittent Catheterization (CIC) and if so, how often.

Each time we go to clinic, we provide the Urologist and the Urology Nurse with a cathing report that summarizes Esther-Faith's routine (how often she is cathed), her diet, her habits, her output, any changes, if she has had a urinary tract infection, and whether or not we've had to administer a bladder wash. This information helps the Urologist know what tests to order (if needed) and what advice to give us with regards to cathing, diet, etc...

The Urologist also helps monitor for UTIs, kidney issues, and other problems. S/He will also prescribe diagnostic tests and provide feedback and follow-up. The Urologist has specific knowledge in the function of the kidneys, ureters, and bladder. And s/he will be able to help you help their children achieve urinary continence.


Info for this post came from:

"Answering Your Questions About Spina Bifida" published by the Children's National Medical Center in Washington, D.C., 2003

Sandler, Adrian. "Living with Spina Bifida: A Guide for Families and Professionals." Chapel Hill: University of North Carolina Press, 2004.

Lutkenhoff, Marlene, ed. "Children with Spina Bifida: A Parents' Guide." Bethesda, MD: Woodbine House, 1999.

Saturday, May 29, 2010


26 March 04 7:55 am 7 lbs 110zs
Baby Girl Fields

The day before.... Thursday.... Life was normal. House clean. Held a staff meeting and took my team out to lunch. Made a pit stop at Wal-Mart to buy a new stroller.

Berkley and Tyler came home from school. Cooked dinner as usual. Vince brought home unexpected guests for dinner. Life was good. We went to Berkley's basketball game at 6:30pm. Everyone asked when our little girl would arrive. I laughed and said, "in the morning!". After the game, my husband loaded the van. Off to Grandma and Grandpa's house.

Friday....March 26.....perfect delivery by C-Section....7:55 am heard those beautiful sounds of her first cry and then I cried... it happens every time.... I can't help it....

11:55 am....Life changed.... I changed.... the world changed.... TRUST.... decisions.... strength...

Diagnosis....Mal-Rotation of the Intestines and Lipomyelomeningocele.

So much happened after Madilyn's birth. I don't have time to share each and every detail. The one thing I want to share is the advice I was given by a very special doctor who saved Madilyn's life on April Fools Day. After explaining the mess he found with her intestines, he looked at me and said to "trust my instincts when it came to her care". I have never forgotten those words.

Those words told me to leave a Neurosurgeon's office because it was not the right place for us. They led us to UVA Children's Medical Center to a team of doctors that saved Madilyn's life a second time. Those words gave me courage to head to the ER because something was not saved Madilyn's foot when she had a pressure ulcer in her gave me courage to call her Neurosurgeon and ask him to see her before her scheduled appointment....something was wrong and after a 6 hour surgery, it confirmed I was right.

I am always amazed at people who tell me they could never allow someone to put their child to sleep. I have to trust those who take care of Madilyn. We have had 14 MRI's and 8 major surgeries thus far. Each one has improved the quality of Madilyn's life and preserved vital functions. I would have never survived if I had not learned to trust my instincts and change doctors when it was necessary.

Today.... I look back at her birth with joy and not sorrow. I see that I was stronger than I ever believed I was and that the choices we have made in her care have been the best we could have made.... Madilyn just finished Kindergarten yesterday and was promoted to the first grade!

TRUST..... yourself.... God is watching over all....

Thursday, May 27, 2010

Featured Child: Aiden

Aiden's Story

I had a pretty uneventful pregnancy, at 20 weeks we found out we were having a boy and were so excited. On November 25th 2007 Aidan was born and we were ecstatic. After cleaning him up the nurse practitioner brought him to me and said I have to show you something. She turned my son over and pointed out a raised bump on his back and said I think he has spina bifida. Since his back was closed they waited until morning to take him to the Children's hospital. I was numb, I didn't understand what happened or exactly what it was. After Aidan was sent to the nicu he had multiple tests over the next few days, after the mri the neurosurgeon confirmed he had spina bifida. He was diagnosed with lipomyelomeningocele at the L5 level. His spinal cord grew into a fatty mass covered with skin. We were able to take him home for a week before surgery. His first surgery went well but it took another surgery and 2 months for his back to finally heal. Aidan is now 2 and the most curious and outgoing boy. He has such a determination to do things for himself, it's amazing to watch him learn. He started walking at about 18 months and now never stops. He loves books and cars and helping with whatever we are doing. Finding other moms on the babycenter message board has been the most amazing resource. It's wonderful that I get to celebrate my sons accomplishments with other parents that understand how much our kids can do.

Tuesday, May 25, 2010

Lessons from my journey

When I volunteered to post on this blog, I was asked to share my learning experience as the new mom... just starting this journey. I hope to be helpful to those going alongside me and those coming behind, so today I wanted to give you an update on some things that I have learned within the last six months. Well, I could go back eight months to when I found out.

I'm learning----
   Medical terms,and procedures I never imagined I would know.
   Therapy techniques
    How to use a camera
   To appreciate every moment
   To pray always
   New methods of doing what I once considered remedial.
   I am stronger than I ever realized
   Babies are resilient
   Babies are strong
   God is good
   Naps are amazing
   Shaving your legs everyday is a luxury
   I can do my hair in a matter of minutes
   Diapers stink
   Babies are precious
   Each moment spent together is a gift.
   I don't have any control over my schedule anymore.
   God is in control.
   A smile changes everything.
   laughter is required
   Peek- a- boo is so much fun
   Spit- up happens
   To blog
   Always carry a paci in your pocket
   Take notes
   To ask questions
   To love like I've never loved before

And since this is the Spina Bifida kids blog I have saved one very important thing that I have learned as the close to my post this evening.

Six months into this journey and I have learned... Together, we can do anything, and everything.


Sunday, May 23, 2010

I'm sure most of you have seen this somewhere, but I hadnt. So I'm going to post it in the hopes that someone who hasnt seen it WILL see it.

Its a little printable book about a little boy with Spina Bifida. Toby's been questioning a little and knows things are different. I am thinking about printing this up and then even making him a little doggie with the scars like in the book.

Click HERE to see the PDF version and print it out.

Saturday, May 22, 2010

Out of Place......but finally Home!

Yesterday I had one of those "out of place" moments. I am sure at some point each of you have had one or will have one. It was Kindergarten Awards Day at Madilyn's school. All the parents and grandparents filled the gym in eager anticipation of seeing their super star walk in. My husband was unable to attend so I sat by myself surrounded by people I didn't know. The awards presented were for "Attendance". I could see Madilyn turn and look at me with excitement. She wanted an award so bad. I could see it in her eyes. That is when the tears started. I had no tissues and tried to wipe them as fast as I could. There would not be a perfect attendance award for Madilyn or a gold award either. If there was an award for the most days missed from school, she would have earned it. I lost count at 67.Memories of this past school year flooded my mind. The beginning of the year was disastrous. Each day was filled with tears and begging us not to make her go. She was struggling with the loss of control of her bowels and bladder. She also lost her ability to write. We knew something was wrong. Something was shutting down her right side again. Two weeks after the start of school she had to endure a 6 hour spinal surgery. Her doctors had high hopes that she could return to school in two weeks. Two turned into four and six weeks in a wheelchair. She also had a broken foot that just wouldn't heal. Returning to school was still hard and tears still flowed.

Soon she began to have more confidence. I remember the day that we decided it was time for her to walk into the school by herself.

Our school calendar was full of appointment dates and tests. She had to miss a lot of major events at school because of all those appointments.

Spring brought her bowel surgery and all of the complications we would have never expected. She spent three weeks in the hospital total and missed another month of school. But, she was so happy to go back. Madilyn had found her place. Somehow in the the mist of all her appointments and two major surgeries this school year, she found her place.

I was snapped out of my thoughts as they stood and sang to the audience. Joy radiated from the faces of those students. We were invited to attend the class parties that were being held directly following the assembly. Madilyn did recieve and award in her class.She received the "Determination Award". She was so happy. After the party was over, we were given the option to check our children out early. She wanted to stay at school. She found her place and was at home in her surroundings. She gave me a kiss and down the hall I went.

Those tears came again.....tears of joy for Madilyn. I was not afraid of those tears now and I didn't care if anyone else understood them or not. I may have looked out of place in a crowd of happy parents but I finally felt like I was finally home. I wondered if I would ever get to this point. I have felt more at home at Children's Hospital then anywhere else. Madilyn and Mrs. Blackman

Last night as I was tucking Madilyn in the bed, she asked me why she got that award today. We talked about all the things she had been through since August. I told her..."Madilyn, you never gave up and kept on going!". "What about next year Mom", she said....The only thing I could say is we will see what next year brings us. She then gave me a hug and a kiss and drifted off to sleep.

We are out of the eye of the storm once again. The waters are calming. We have our daily obstacles and new routines that we are still adjusting to with her MACE. We will use this time to prepare because the one thing I have learned over the past 6 years is....crazy is always around the corner and there is no place Home!

Thursday, May 20, 2010

In it Together!

Goodmorning everyone.

I just wanted to drop a quick post and remind everyone of some things.

Lots of us have blogs. LOTS!! and its so wonderful to see your families, read your stories and to watch your child/children grow.

For those of you who dont have a blog you might not realize the following...

1. You jump up and down when you see a new "Follower" pop up on your sidebar

2. You get giddy with excitement when you get a "Comment" on a post.

I mention those two things because I want to remind everyone to "FOLLOW" not only this blog but each other's blogs. It's just plain encouraging!! It takes time and effort to sit down and blog and it makes it sure feel worth it when you realize someone else is reading.

Dont forget to comment on each other's blogs. It's a nice reminder that there are people out there (mainly people we have never met and most likely never will meet) that care about our lives and our kids.

We are in this together!!

On the same type train of thought. Wed love some feedback here at Spina Bifida Kids. Stories you would like to hear. Posts youve enjoyed. Maybe things you would like to see changed or added. Feel free to just leave a comment or email me at We want to make this site work for everyone. We want to continue doing the things you like and maybe scale back on the things that arent so great. So please let us know!! We like comments too!!

Tuesday, May 18, 2010

There is a place like no other....

Maybe you've seen

Maybe you've heard

Maybe...just maybe you've even visited.

This is a place to play. A place to have fun. A place of triumph after triumph after triumph. A place that everyone with SB should visit at least once in their lifetime!!

Morgan's Wonderland
The world's first ultra accessible family fun park!!

Seriously, this place is incredible and Gordan Hartman, the founder and main sponser of this park might just be my new hero.

This place has everything and the awesome part is it has stuff for EVERYONE.

The person with special needs goes for FREE!! Yes, you heard me FREE!! And everyone else is only 5.00!! This place is in San Antonio, TX and there is no other place like it in the world. Everything is accessible, from the carousel to the sand box, to every single activity offered. Music, Train..You can pretty much name it.

There have been numerous national news stories done on this place and I am so thankful to be privledge enough to live in the same city!! We have yet to take Toby, but is for sure on our things to do! If you ever end up in Texas this is a stop you must make. Maybe all of us Texas moms can get together and meet up there one day.

I wanted to share this with you because I think its incredible that things like this even exist. Please take the time to check out this incredible park!!

There is a facebook fan page out there so make sure you join. But get ready to have a tear in your eye if you check out some of the pictures!!

Sunday, May 16, 2010



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.

Saturday, May 15, 2010

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!

Thursday, May 13, 2010

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

Tuesday, May 11, 2010

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

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

Sunday, May 9, 2010


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.

Saturday, May 8, 2010

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!

Thursday, May 6, 2010

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

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!!!

Tuesday, May 4, 2010

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.

Sunday, May 2, 2010

Mothers' WEEK

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

Last week Kari ( 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!


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.