Sunday, January 31, 2010

"Clinic Day"

I remember when we were discharged home from the hospital and they schedule our first "clinic day" and I was slightly confused on what this meant. The nurse said "In a nutshell you will see lots of doctors and other people in one day." Okay sounds great right? So our first "clinic day" arrives and my daughter and I check in at the front desk of the Special Needs clinic and we are called back right away and taken to a room. We see neurosurgery right away and when he is done I start packing up our things and heading back out to the waiting room when a lady stops me in the hallway and says "Oh hunny you can't leave yet, you have so many more people to see." Okay...embarassing, I had NO IDEA how "clinic day" worked.

So a quick run down of "clinic day" from a new mom who still remains slightly clueless! You will see multiple people (ie doctors/therapists/nurses/social workers) and have multiple tests done. For example in a week my daugther will be going to her 3rd "clinic day." We will arrive at 8:15 AM and they said plan to be in clinic for 5 hours. She will see her urologist, neurosurgeon, orthopedic doctor, and physical medical and rehabilitation doctor. She will also have Xrays done and a Renal ultrasound. Other times they may have head ultrasounds, CT scans, MRI's, Urodynamics, just to name a few.

"Clinic day" can be VERY nice for someone like myself who drives 50 minutes to see these specialists; it makes your time seem more worthwhile. However, it can be a very stressful day. Some words of wisdom, pack accordingly...
-Diapers -Toys -Snack and drink for yourself
-Wipes -Snacks
-Catheters -Books to read
Hospital food as we all know can be very expensive so pack a lunch if you are going to be in clinic during lunch. Some clinics will provide lunch, so ask if this is offered at your clinic. Also when you are in clinic take advantage of any infomation that is made available. At our clinic they have information booths set up and the Spina Bifida Association there to answer questions you may have. Also, making a list of questions that you have for each specialists is particularly helpful. And my last words of wisdom....GET REST its going to be a long day!!!
Until next week...

Friday, January 29, 2010

Featured Child: Roman

Roman's Story

I believe that everyone has memorable NICU experiences when it comes down to it. The ones that make you smile at the thought and the ones that make you teary.

A NICU Easter Miracle

"My most memorable and great nicu experience happened on Easter Sunday. Roman had his second back closure surgery the night before. They removed the cath that morning and we were waiting for him to pee on his own. We waited, and waited and...waited.

My family arrived and while Roman was catching up on his sleep we decided to have Easter dinner at a restaurant across the street. I had such a horrible feeling that when we walked back in the nurses were going to tell me he still hadn't peed and that I would need to learn how to cath him. In fact, I was scared to even open the doors. But, when we went back in the nurse said, "he peed and he peed a LOT!" After 8 hours, he peed. My son peed. We're at 9 months, two weeks and 5 days with no cath. Who would have thought a little urine would be my Easter Miracle?"

I believe in being honest. Honest consists of sharing joys and sorrows.

Sometimes It's just plain Scary

"Our scariest time in the NICU was the very first time I met my son. I gave birth via c-section, so all I could do was listen to him cry. From across the room they showed me his face, they showed me his back and they left. I didn't get a kiss, I didn't get to touch him. All I had was that cry. Four hours later I got to meet him. When I was rolled into the nicu he was wrapped in plastic, and sleeping on his belly. He was all alone under a heating lamp and I was too afraid to touch him.
Babies should be born, and then hugged and held and rocked. Not whisked away to a table, alone. I guess the nurse saw how scared I was. She asked me if I would like to hold him. I guess she also saw my face ask "how?" because she immediately gave me strict instructions. That was the scariest day, but when he looked at me, and I could feel him breathing on me, it quickly became the best day of my life. "

These Kids are Kids

I wanted to ask just normal kid questions. The ones that dont have ANYTHING to do with SB.

"Roman's favorite food is, weirdly, prunes. I can't help but to laugh when he flashes me that big purple grin."

"I can't honestly think of many things that melt my heart more than....prunes, and urine, and crying."

Thursday, January 28, 2010

Transitions from Cribs to Bed

I know a lot of people end up purchasing a toddler bed for their children once they outgrow the crib because of how low they are. Therefore easy to get in and out of. Well, I saw on the baby center support group what one mom wrote about how she transition her little guy to a twin bed. I thought it was great information for those who dont want to shell out extra money for a toddler bed.

We transitioned to a twin size bed when Brock was about 2 but we needed the crib for a new baby then. We bought the twin bed because we wouldn't have been able to use the crib mattress anyway for a toddler bed.

We found a bed frame that could adjusted to sit really close to the floor and the guy at the mattress store suggested we get half size box spring. We also got a bed rail. I think the bed sits about 1 foot off this floor. It is really easy of him to get in out of. He has even fallen out of it a few times at night and didn't even wake up.

Kellie aka Brock's mommy

Also, I recently read that someone purchased a daybed and just turned it around the opposite way. That way the child had a bed to themselves but couldnt fall out. I thought that was a good idea. There are really so many choices now with all the low beds that have been produced as of recent.

Good luck and happy big boy/girl bed shopping

Wednesday, January 27, 2010

Explaining Spina Bifida: Finding out.

Hi all! Erin again. Here is my latest post on Explaining Spina Bifida, from my blog Tear & Mend. All the mothers reading this have their own experiences and each of us can learn from one another. Feel free to post your story as a comment!

There are a few different ways you can find out your baby has Spina Bifida. The earliest test is the Quad Screen, done around the 16th week of pregnancy. The quad screen measures high and low levels of AFP, among other things. High levels of AFP are what tips the the doctor off to possible NTDs. Many times, this test returns false-positive readings, creating unnecessary anxiety. My husband and I waived the test. We would not terminate a pregnancy. I would not have an amniocentisis (the only way to confirm an NTD that early on). Knowing would have essentially done nothing for us. There was no history of birth defects in either of our families, and I was only 25 years old.

Another way to find out is at your 20 week ultrasound, or a subsequent ultrasound. They examine the babies body, take measurements, etc. Nothing odd showed up on our 2o week. He looked perfect. No reason to worry. However, we found out at 34 weeks, during a routine growth ultrasound.

The third way to find out is at birth. This, to me, must be the most traumatic way to find out. You have no time to prepare. No time to figure out what the heck Spina Bifida is. No time to rejoice in the birth of your child because you are shocked by the immediate realization that something is wrong. Because trust me, it is obvious.

So, your baby has Spina Bifida. That sucks a little. But honest to GOD, the worst part is the waiting. My Goodness, the waiting. It’s AWFUL. It’s also one of the reasons that I am happy I didn’t find out until I was 34 weeks pregnant. Donovan was measuring four weeks ahead and I insisted on a growth ultrasound because hi, I’d like to know if I’m going to go into labor any minute now. So, I wobbled into the u/s room and found out my baby was breach. And I FREAKED. I’m going to have a c-section. Kill me now.

Then I wobbled into the OBs office SOBBING because of the breach news. But, little did I know, there was more. I’ll never forget the next few minutes. She said she was happy I had insisted on the u/s because there was something wrong with my baby. But, she couldn’t tell me what. WHAT? No, I’d have to go to a perinatologist for that. All I knew was that his ventricles were enlarged. I called my family in a panic. My sister is in school for PT and knows all about the brain and stuff, so I called her to tell her to Google and read and read and tell me what is wrong with my baby. She found out about hydrocephalus, and told me not to Google it, that it was unlikely and a worse case scenario. HA. If only that’s all it was.

Two excruciating days later, we go to the Peri. They ask me if I know why I am there. Um, yes. Something is wrong with my baby. They ask if I know what, and I say, “um, no…that’s what you’re supposed to tell me.” Well, they knew already. You could just tell. They proceeded to the Level II ultrasound and the Peri came in and told us our son would be born with Spina Bifida. I, again, freaked out because I had no clue what that was. But, man…it sounded BAD.

Anyway, all of this is an example of why the waiting is the worst. It’s the unknown. Like, oh, my baby kicks me. Does that mean his legs work? Oh, no…they say it could just be the amniotic fluid moving him around. And so on. It’s also very difficult because chances are, you don’t know anyone who has a baby with SB. I didn’t. I would have been so comforted just to talk to someone who was walking through what I was going through.

So, that is finding out. I wont lie, it’s not fun. I still remember it as one of the worst days of my life. But it happens, and then it’s over. And you move on. And you have your baby. And he is perfect. No matter what’s “wrong” with him.

Tuesday, January 26, 2010

All hail Caesar!

Hi everyone!
My name is Karen. I am a first time mom of the cutest 2 (I'm in denial he's almost 3) month old named Carson. As you've probably suspected Carson has spina bifida. My post today is mainly for those of you still pregnant. I remember pregnancy all too well -- I was sick the entire 9 months -- I don't think i can forget being pregnant with Carson based upon that alone, but his diagnosis at my 32 week u/s makes its even more memorable. I remember the fear, and the hurt, and the absolute pain that you feel, the heartbreak, knowing and unfortunately having to wait for your precious little one to arrive. I was so thankful that I found out at 32 weeks- I only had 8 weeks, as opposed to many who have 20. Now Carson is here and I want to post about the things that just terrified ( I am a huge worry wart) me when I was pregnant. I've learned I really had NOTHING to worry about.
First up- let's talk about the c-section. Oh my gracious--- I have (well had) never had surgery in my life. Never even been in a hospital other than visiting, kind of like monopoly there is the jail (hospital) well I always just had to visit; never did I hit the go directly there part. At the beginning of my pregnancy I wanted a c-section, I thought, hey, no labor. Then, thanks to reality television I watched a few c-sections and oh boy, did I change my mind. Then I had to choose to have a c-section. Funny, how that works isn't it? So I did what all good moms do... I studied c-sections--- bad idea. I went in the day of, literally shaking and crying. Well that didn't stop the nursing team-- they got right to business, I guess now that's why they call it scheduled.
--- Here's your belongings bag and gown-- you know what to do
--- Cath and Iv.
--- Meet the 10 or more people that will be working on you, including students... scary thought, great people though.
--- Wheel away.. down the hall to a room full of people. I am shy so i was quite embarrassed by all the people present :) They didn't seem to care.
--- Sit on the edge of your bed.. get the epidural. Not bad at all.
--- feeling test... very very weird, I could see them moving my legs in a mirror overhead but could not feel a thing.
--- Bob (my wonderful husband) came in and sat next to my head I remember him asking me, "How's it going? and if they had started" I answered, "Good, they are prepping me." Then the anesthesiologist chimed in, "They've started" Honestly I had no idea. Within a minute of that I heard them talking about him (Carson). He was here.
It was over--- quicker than I ever imagined, and so so much easier than I thought.
--- next was the recovery room.
Carson had to be transferred to the children's hosp. immediately. His cyst, which was extremely large, and much larger than usual, ruptured during the section. They did bring him to me before he was transferred. Wonderful, wonderful moment.
--- They put me in a private suite at the hospital for my 3 day recovery stay.
All in all the c-section really was nothing to worry about.. I've had worse in dentist visits. :)
Next week we'll talk about the NICU.
Love you guys!!!

Monday, January 25, 2010

Jack Eherenman

A man by the name of Jack Eherenman contacted me the other day on facebook. What he wrote was such an encouragement to me that I asked his permission to put it up on the blog. He was full of such insight and inspiration. He is doing his part in the wonderful world of special needs children. I hope that this encourages your heart today. Take the time to watch the video at the bottom of the screen if you can.

We have four boys, three of which have a different disability, and
also different strengths and weaknesses. One who has Spina Bifida about
the same level as Toby's. The best thing to do is enjoy all the
progress each child makes and when they make it. The blessing for you
is you are involved, now more than you m...ay have ever been, in the
importance of each milestone and the effort they put into making it
happen. You and they will have many trials along the way but the joy in
watching them overcome many obstacles is the silver lining many people
do not have in their lives. Toby has a disability, but don't let that
define him as a person. He already has many strengths he is showing you
in his abilities to overcome some of the obstacles. Also don't let his
disability define you as a family. Try to think what would the other
kids be doing if they didn't have a brother with a disability that does
take up some extra time and attention because of the need for it.Then just do the best you can to give what you can to them also. It is time consuming but with the both of you splitting some time for it, it does help. Try to encourage Toby to do as many things, with adapting as needed. And don't forget that you will need to make arrangements for somone to come watch the kids so you and your husband ... See morecan still have a night out for the two of you. It is hard, but not impossible. Just look for opportunities to make your lives as "normal"as possible. Be thankful for the gift of all your children, which I can tell you are. They are showing you all the blessings God has given each one.I've had many mothers and fathers who didn't want to let their child come to my sports camp, and when they let them, the kids blossomed, went home better prepared for their daily living skills, improved in almost everything they were doing, had a new outlook on what they wanted to do, and ready to come back next year. There is a time for ... See morecrying, which we all do, but there are so many more joys you will have along the way as Toby and all you kids grow together. You already have the best foundation on which to help you along the way, and that is your faith in God. Why were you chosen to raise Toby. Why not, He has faith in you. I hope this helps.

check out a video about him on facebook

Background Information

April 10th 2009 was a day that forever changed me.

ON this day my husband, myself, and our two children went to my doctors appointment to have an ultrasound done to see if we were having a boy or a girl. Much to our surprise we found out we were, in fact, having a girl (as my husband had guessed) however, she had spina bifida, with a "lemon sign", "acII malformation, " and "hydrocephalus." After that I think my whole body shut down. IT was a huge sock to us and I kept thinking "Why us," "What did we do?" You see we had no concept of spina bifida and the small concept we did have was negative.

I share this story with you because many of you just found out your having a baby with spina bifida or know someone who is. I have good news for you- its not all negative. Its an absolute joy and priveledge to be a mother/father/brother/sister to someone who lives with spina bifida. As I sit here today and look at my beautiful and absolutely perfect 5 1/2 month old daugther

I now have a face for spina bifida and the face is beautiful!


Thursday, January 21, 2010

Understanding Spina Bifida: The basics.

Hi y'all. My name is Erin, and I have a son with Spina Bifida.

First, apologies. I was supposed to post this yesterday and forgot to, so here it is, a day late. In the future, I'll be posting on Wednesdays.

Over on my blog, Tear & Mend, I'm writing a series on understanding the basics of Spina Bifida. I have a lot of friends and family members that read the blog that are not familiar with a lot of what I talk about. It's my way to advocate for our little ones and to help spread awareness that yes this is a BIG DEAL, but no it's NOT THE END OF THE WORLD.

So, here we go. I know a lot of you probably already know a lot of this, but I'll be getting into more specific areas in the future. For anyone reading that has just found out their child or loved one will be born with Spina Bifida, I think this is probably a good place to start.

Understanding Spina Bifida: The basics.

Spina Bifida is a Neural Tube Defect (NTD). The Neural Tube normally develops, folds inward and closes around the 28th day after conception. In babies with Spina Bifida, the tube fails to close correctly. This results in one of three versions of Spina Bifida (and a picture animation!):

1. Occulta: The most mild form of Spina Bifida. Although the NT does not close completely, the only evidence is usually a gap in the vertebrae that usually remains undetected unless the person has an x-ray or other exam of their back that reveals the defect. Some people have a small dimple or hairy patch on the skin where the defect is located. The cord and nerves are usually fine and no treatment is needed.
2. Meningocele: This is the rarest form of Spina Bifida. The NT does not close completely, and the membranes that protect the spinal cord protrude out of the back, forming the cyst that does need to be removed surgically very soon after birth (24-48 hours). Once the cyst is removed, prognosis is excellent for normal development because no nerves were exposed, and thus remain undamaged.
3. Myelomeningocele: This is the most severe, and I believe most common, form of Spina Bifida. In this case, the membranes and nerves protrude out of the back, and into the cyst. Babies have to have surgery very soon after birth because there is a high chance of infection (including meningitis). Because the nerves have been exposed to fluid and other matter in the cyst, and because they have to be touched when surgically placed back in the back, there is usually some degree of leg paralysis, bowel and bladder problems. (More on that later.)

Pictures are better than words.

So there you have it. Some SB basics. Donovan was actually prenatally diagnosed as having Meningocele. When looking at the cyst on an ultrasound there is white matter and black matter. Black matter represents empty space or fluid, where the white matter is something solid such as skin, bones, nerves, etc. So, Donovan had a sack that was full of black matter. That was good news! We were happy that if he was going to have SB, at least it was this kind.

After the initial diagnosis (made by my perinatologist), we met with Donovan’s Neurosurgeon who said he was optimistic, but did warn us that we don’t know 100% until he is born and they are in surgery. The nerves can actually grow against the wall of the cyst, making them invisible on the ultrasound. So, we were aware that the prognosis could change. And sure enough, it did.

Donovan’s closure was performed the day after he was born, February 6th. After the surgery, we met with the Neuro who said that there were some nerves plastered along the wall of the cyst. Not many, but some. So yes, it was Myelomeningocele.

His prognosis was still good for several reasons, but those will be discussed as I cover other topics. But that is all for today. I hope the information helps you in understanding more about this birth defect, which is one of the most common, affecting more than 1,500 (live birth) babies in the United States, every year.

Sunday, January 17, 2010

Id like to focus on books

I'd like to focus on books for just a minute or two...

Not children's books. But books for us mommies and daddies.

So the first one I'd like to mention is

Chronic Kids Constant Hope.

When I first got this book I thought. GOOD GRIEF THIS DOES NOT APPLY TO ME. The more I read the more I understood and the more this book changed my thinking. The more I thought the more I realized how closely intertwined I am with so many other parents in this world. It was incredible. Well written and honestly just plain enouraging. I would say, Read it!! Run out and Buy it!! And then tell other mommies and daddies about it. Great book!! This book is truly filled with Hope.

Saturday, January 16, 2010

Arnold Chiari Malformation

What exactly is Arnold Chiari Malformation??

I am going to make an effort to try and explain ACM, it is somewhat complicated but I'm going to try and just give an overview.

There are actually several types of ACM. Type II is specific to Spina Bifida so that is what will be discussed here. ACM II is a complex brain malformation that almost all (85-90%) children with Spina Bifida have. ACM II involves the lower brainstem, upper spinal cord, and the cerebellum. The brainstem connects the brain and the spinal cord. It controls basic functions like breathing, blood pressure, body temperature, the heart, hunger, thirst, swallowing and even sleep patterns. The cerebellum controls balance and the coordination of muscle movements. In ACM II there is a downward displacement of the cerebellum, as well as the medulla and fourth ventricle. The fourth ventricle is elongated and is pulled down into the cervical area of the spinal cord. This is what blocks the flow of cerebrospinal fluid, leading to hydrocephalus.

I know it sounds complicated and it can be very overwhelming, and perhaps a little scary. It's important to know about ACM II because it is something that affects are kiddos. Your child may or may not have any symptoms of ACM II but it is good to know what to look for just in case. ACM II is the reason some of our kiddos have feeding and/or swallowing issues, and even reflux. ACM II can also cause apnea. Some will show signs of stridor, a high-pitched sound when breathing. ACM II can even cause weakness in the arms and hands.

Even though almost all of our kiddos have ACM II, they may only show very mild symptoms or even no symptoms at all. I just think it is important to know about ACM II so that if your child does have any of these above issues, you will know what could be causing it. My son Caleb has some balance issues and is fearful of falling and I believe it is likely due to ACM II. His body temperature also fluctuates and I believe ACM II could be the cause. We tend to focus on the physical limitations of Spina Bifida and forget about the huge affect it has on the brain. Our kiddos brains are different and it's important to know what that means for their development. I am always surprised to learn that many parents of kiddos with SB have never even heard of ACM II, their doctors have never mentioned it. Hopefully this has given you a little information about it. Knowledge is power...right?

I found this really cool website that gives a great overview of the brain.


Friday, January 15, 2010

For you Pregnant ones

I wanted to post this for all you moms of small babies with Spina Bifida. Even you moms who have yet to hold their little one.
This is for you.

click here to read about one mom's reflection on her journey one year later.

when I read this I thought to myself: If only I had read that when I was pregnant or when Toby was 3 months old or so. Wow, I think it really would have changed some of my thinking around.


Thanks to everyone who entered the Giveaway. It really boosted our hits and our followers.

I am excited to say I have about 5 ladies who are going to be working on this Blog with me from now on!! So be looking for their posts in the coming weeks.

If you type in AFO shoes in google we are ALREADY number 4!!!

Okay, so now to the winner.....

and the winner is.....



Congratulations Rosemary, I will be sending you an email soon for the details of your necklace. I love that you picked UNSTOPABLED!!! What a great word!!

Sunday, January 10, 2010

First Giveaway

Alright, We are going to see how this goes.

If you haven't already you should check out the spina bifida awareness necklaces here.
50% of all profits go to the Spina Bifida Association

So, I'm giving away one personalized Spina Bifida Necklace this week. So here's how you enter.

Leave a comment on this post with what you would like your necklace personlized with.

Then link the give away to your blog and/or website or facebook.

On Friday, January 15th I will announce the very RANDOM winner!! I never ever enter giveaways because I never win, so i feel a little hypocritical doing this, but OH WELL!! : )

Saturday, January 9, 2010

A Mother of A Handicapped Child

I hope everyone will take the time to read this entry. Even if you have already read it, Read it yet again!!

It brought tears to my eyes. Thank you Erin for taking the time to share that. Its always good to be reminded how truly blessed we are!!

Thursday, January 7, 2010

Before and After Eye Surgery

These picture just make me smile now.
I wanted to post some before and after shots of Toby's eyes. He had the surgery that corrects crossed eyes. For some reason im going blank on the name of it and I dont feel like looking it up. I know you all know what I am talking about. Anyway, these are Toby's eyes before.

So stinkin cute if you ask me!!

And of course now. My beautiful blued eyed boy

Monday, January 4, 2010

Sitting Up

I have heard from quite a few moms that a GREAT way to help your child strengthen his/her core is by using an excercise ball. Holding their legs you help support them while letting them play. (lets not let them realize they are actually working!! : ) )

You can buy excercise balls at pretty much any discount store of your choice.

Now that Toby is older, I realize how important core strength is and has been. So keep up the work!

Sunday, January 3, 2010

The Spina Bifida Assocation needs Us

Did you know the number of people with Spina Bifida jumped from 77,000 earlier this year to 166,000?

The Spina Bifida Association need our help!!!

I've started making Spina Bifida Awareness Necklaces.

You can check them out here


Saturday, January 2, 2010



Aaron has Spina Bifida. Click here to watch this incredible video.

Just think of all the incredible things our kids will be doing in the future.

Besides that..think of all the incredible things our kids have ALREADY done!!

Sitting Up

I remember a time when I was convinced we would never see the day when Toby would sit up AND balance.

Problem - Your child is learning to sit up. ALMOST THERE. But doesn't quite have the balance down and certainly can not concentrate on playing and balancing at the same time.

Solution - We bought a "The First Years" booster seat from Target. It folds easily and comes with a swin around tray. We would just load that thing up and sit it on the ground. It was great for Toby to be able to sit and help teach him balance but still give him a chance to play with all of his toys. It also helped with fine motor skills because he didnt have to work so hard at the other.
In the beginning we would shove blankets all around him to help stablize his hips till he got a little stronger.

Do you have any tried and true tips that worked great for you and your child? Please share so I can add them in!!