Monday, October 31, 2011

Trick or Treat

 Tonight was our first time taking Carson out trick-or- treating. It was so much fun and he was just too adorable. He was even saying trick or treat as he realized that doing so meant candy! So starting tomorrow I will hide behind the door with a bucket of candy and teach him to say Mama- then shower him with candy... :) worth a try, right? He was the best dressed costume out there tonight. I'm so proud of him!  Happy Trick or treat everyone!!!
Let's go Let's go

Ya, I could do this all night....
enjoying the goods

Sunday, October 30, 2011

Spina Bifida awareness- What I know now.

I was asked a series of questions - Well honestly I was grilled--- by a friend of mine who wanted to put together a Spina Bifida post for her blog. Here is our interview..... 

How far into your pregnancy were you when the doctor informed you there was a problem with Carson?    
 ----  32 weeks

Did he actually say there was a problem, or just indicate a need for further testing on your baby and what was your initial reaction to this?
 ---My Ob detected what he thought to be a cyst on myself- possibly a ovarian or uterine cyst. He said those are fairly routine but I can’t rule out for certain that the cyst is not on the baby so I am going to send you for further testing. 
What was your immediate reaction to being told Carson has Spina Bifida?
---- shocked, scared, sad, mad, hurt, confused, couldn’t breathe.

Do you recall if you noticed, at the time, what your husbands’ reaction was?
----Pretty much the same as mine.

I know you did internet research into Spina Bifida after learning Carson has it.  What was your emotional state as you learned what it was and what it could entail for him?
----Some info, helped me relax while other info scared me for. It was a Russian roulette game with info.

I know you’re both Christians, do you feel your relationship with God was affected by these circumstances that were occurring at the time? 
-----I would say that I’ve realized more how much He is in control and not me.

What about your marriage relationship, how was it affected at the time?
---- we have a very strong relationship and this really didn’t seem to help/hinder. We just stuck together, leaned on each other, cried together, prayed together, but also laughed together and focused on what really mattered.

I know when Carson was born, they insisted on a C-Section birth in order to reduce as much trauma to his little body and spine as possible, were you able to see him immediately after his birth? 
---- It was about an hour after his birth before I was able to see him. He went straight to the NICU and I was transported to recovery. I did’nt think I would get to see him till the next day since he was to be transported immediately to Childrens… I had to stay at Hollywood Pres. for 24 hours and recover. However, while I was in the recovery room I overheard the nurses talking. One nurse kept asking about moving me out into my room … she said I was ready and they needed the spot in the recovery for another patient. This other nurse adamantly told her that I was not moving anywhere till I got to see my baby. He was on his way to see me and if we were waiting. I quickly called out to her and ask if I had heard her correctly. She said, oh honey yes, you are gonna see your baby. I squealed!!!! Sure enough about 30 mins later they wheeled him into the room. He was in a transport incubator. I cried with joy. He was so perfect. They let me reach my hand into the hole and touch him. I just stroked his face over and over and prayed for him. They stayed for probably five minutes then he had to transfer. It was amazing!!!!

Do you recall your emotional state at that particular time?
-----overwhelmed…. so many emotions I can’t even explain it. Joy, wonder, anticipation, fear, love, exhaustion,….

 Did you, at any time immediately after his birth, consider all the things you and your new family would be facing in dealing with Carson’s Spina Bifida?  Can you tell us some of what was going through your mind at the time?
-----Not really. His birth and seeing him made me just want to see him more, hold him, and take him home. I was worried about him in some ways but also just felt a perfect peace that God was taking care of him.

I know that there have been some physical difficulties for Carson, he had a broken leg immediately at birth and it’s broken a couple of times since then.  How fragile are his bones at this time?  Is he able to bear weight on them, yet?
---- His bones are fragile, how fragile is unknown exactly but we have to be very careful. Weight- bearing actually strengthens the bones so we currently do about 30 mins 3 times a week in a mobile stander. The more the better!!!! This is why we need to get his braces so badly. He needs more standing time, but currently he requires a supine stander in order to do that. We cant afford to purchase one so I have to take him to therapy and do that, and that’s limited for time.

How much time do you have to spend on a daily basis to work on Carson’s physical therapy; getting him to get up on his knees, working on his crawling, whatever other exercises the therapists have given you for him.  And, how much more difficult is this when you have another son who’s 6 months old and probably beginning to think about mobility, himself?
---- this is hard to answer. Each day is different… Part of that is having a 6 month old, and part of that is just daily schedule. Also some days Carson seems willing to work and other days he just doesn’t. I’ve learned when to push him and when not to push him. pick my battles- I guess. I’d say on average we spend 1-2 hours a day on physical  therapy activities.

Give me your best piece of advice for women facing the birth of a “disabled” child and name three web-sites you think would be good places for them to go for support and/or information.
----It’s gonna be fine. Your baby is a precious, amazing, and special gift. There’s nothing that is going to change that. Love is not based upon physical expectation. Do not grieve or fear, just trust in the Lord and His plan. Don’t lose sight of the great blessings you  do have. Cherish them, and search for everyday wonders, and miracles.
---- As far as websites go it would depend upon your unique situation. There are online support groups for everything now of days. I recommend finding friends who understand your situation… it’s been one of my biggest blessings and comforts.
Try, facebook, or

Thursday, October 27, 2011

Spina Bifida awareness- faces

                                                                 Greyson - 2-1/2 years old

mischievous...(notice the SITTING on the walker...not cool Grey) :)  

This little boy has touched my heart in so many ways. He is amazing!!!! He is also adorable! I've seen him in person on two occasions. Both times I wanted to just squeeze him, pinch him, tickle him... I was so overwhelmed with awe. I felt like I was in the presence of a celebrity. This is Greyson- the grey. I was nervous around him. :) Poor guy just thought I was crazy. I am crazy.... Crazy over how wonderful he is. One of the very first spina bifida kids I ever met was Greyson. He was just a few months old at the time. I fell in love with him. He brought me so much peace and so much comfort. I thought wow- he's adorable. Spina Bifida is not so bad.... this baby is perfect. Bob and I spent hours and hours reading the blog and looking at their sweet pictures. Greyson also has brought me so so much hope. He and Carson are fairly similar in their Spina Bifida diagnosis. I have seen this little man accomplish things that I know are supposed to impossible. Look at him in this picture!!!!!! I watch him- slightly stalk him- and smile with pride. He's Carson's role model... Carson just doesn't understand that yet. :) 

Tonight I also want to feature another cutie... This is a pretty new cutie.

                   Meet Gage- he is happy, very social, and a total flirt :)  
    He is almost 5 months old, and is currently in excellent health! Gage had his closure and shunt surgeries after birth and has since had 2 revisions. 3rd shunt is a charm!! He has ACII which is showing mild symptoms, but they are currently under control. He is cathed twice a day, and VCUG results showed we can likely stop after next uro check up. 
He is a very social baby with lots of smiles and the most contagious laugh. He is a favorite among nurses at the children's hospital and can light up any room. He likes to flirt and make his presence known. He rolled over for the first time yesterday, which marked his first real milestone (almost right on time!) He works really hard and we can't wait to watch him grow and achieve future milestones. We love him to pieces :)
This little guy just melts my heart.... what a chunk of cuteness right? He's only a little guy but he has already had some "Take That Spina Bifida moments" I look forward to seeing what he's gonna do this year! In my opinion he's unstoppable! 
These are the last two kiddos that I have for my faces of spina bifida.... If I missed your child please email me. I'd love to feature more.

Wednesday, October 26, 2011

Spina Bifida awareness

He's so silly and loves to make you laugh
We are coming to the close of our spina bifida awareness project. Just a few days left ( but these next few days will hold some pretty cool suprises- so keep looking here. ) It is my hope that you now realize a little more about what spina bifida is to us, what it means, and how it affects us. I hope that I have answered some questions and helped to better inform you. I feel that the best way to redefine spina bifida is to let people know what it really is.... The truth about it. It is a condition that has affected Carson's body. It does mean that we see more doctors, have therapy, and need to do some adaptations.  BUT to me, to us as a family,  Spina Bifida is merely just part of our life. It's not the biggest part in any way... just a sidenote. It is my greatest hope that we might have a part in helping others who also journey down our road. I want to be a blessing and an encouragement. I want them to know that they are not alone and that joy really is a part of our journey.Our day to day is completely average and we are regular joes. This last week we went to see Disney on Ice, made a trip to the pumpkin patch, made cupcakes, watched Thomas and Mickey Mouse way too much, played ball, did laundry, changed diapers, brushed our teeth, .... you know normal things. lol. Our life did change completely when we had a child join us.... COMPLETELY. And when we were told that Carson had spina bifida I grieved as if I had lost him. It affected me in a way that is really hard to explain, but I thought I was losing my dream to have a child, and do all those things that you do with children.... I was so wrong.

Always grinning

And eating
Very much a boy

Loves boy things- Cars, trains, balls, remote controls.

He's very Mischievous too.

Pretty stinkin cute though. :)

A ladies man......  The boy has girlfriends lined up...... ps. also notice the food in his mouth and reference earlier picture (always eating)  

And a adventure :)

If I could go back to diagnosis day and be able to know what I know now- see this little boy smile, hear his laugh, watch him grow, and hold him close..... I never would have worried or doubted. I never would have grieved losing him. Him being diagnosed with spina bifida is not a loss of anything. He is everything and so much more that I dreamed of... He's amazing! He teaches me what life really is, and what really matters. He makes me thankful, so thankful for things that I never even thought of. Things I would have otherwise taken for granted. I love him.... He's my miracle.

Sunday, October 23, 2011

Spina Bifida awareness- The most important one.

I have not posted in a few days.... Our household has been sick.  I did not want to miss this one though. If there is any thing that I would like to encourage you to do for those of us on the journey with spina bifida it is to pray for us. There are so many miracles that we see through the power of prayer. Our God is so good, and so faithful. Please join us!!! Wherever you are please join us. I believe that as a collective group our prayer time will be 12:00 Pacific time but It might be Eastern time. :) either way please pray!!! When you get a chance take some time and specifically pray.

We proclaim October 24 as the 2011 Spina Bifida Day of Prayer. October is Spina Bifida Awareness Month, and there is much to pray for in the Spina Bifida community. Please pass this on to your Facebook friends, church groups, prayer circles, coworkers, families, and anyone who believes in the power of prayer

Let us pray together. Here are a few suggestions for your prayers:

1. Awareness. Spina Bifida is the most common permanently disabling birth defect in the United States, yet no one knows what it is. (What is Spina Bifida? We pray for the Spina Bifida Association and its chapters to create a unified and effective message of hope and help. And we pray that society would see people with Spina Bifida and other disabilities as valued citizens.

2. The medical community. We pray that the medical community would understand the birth defect and its related issues. We pray that obstetricians would be educated about Spina Bifida and will give expectant parents the diagnosis accurately and compassionately. We pray for continued research and medical advancements to improve the lives of children and adults with Spina Bifida, to find ways of preventing Spina Bifida, and to find a cure.

3. The parents. We pray for the parents who find out their unborn child has Spina Bifida, that you would give them hope and peace beyond all understanding to make the decision to give life. (64% of pregnancies affected by Spina Bifida are terminated.) We pray for the parents who watch their children (young and old) struggle with the challenges of Spina Bifida, that they would be given the strength they need to get through each day and the wisdom to raise their children as you want them to be raised.

4. Children and adults with Spina Bifida. We pray that you would make them lights in a dark world, to be instruments of your divine purpose and will. We pray for their physical wellness, but also for them to use the challenges you gave them to bring you glory.


I'd like to add a few more specific prayer requests for our family.

1. Pray for Carson's body. Each day I ask the Lord that He would protect his body and heal his body. I ask that the Lord would strengthen his legs and heal his legs.... Increase his function and use. 

2. Pray for Carson's spirit. I also pray that Carson would have a sweet, and Godly spirit. I pray that the Lord would work in and through Him for His glory. I pray that Carson would grow into a Godly young man who seeks to serve and please the Lord in his life. 

3. Pray for Carson's care... There are so many decisions that we make on a daily basis in regards to Carson's therapy, or medical care. Please pray that we would have wisdom to make the right and best decisions.

"Again I say unto you, That if two of you shall agree on earth as touching any thing that they shall ask, it shall be done for them of my Father which is in heaven For where two or three are gathered together in my name, there am I in the midst of them. " - Matthew 18:19-20

Tuesday, October 18, 2011

To someone special

I interrupt my series on spina bifida to make a very very important announcement.

It's Bob's 36th birthday!!!!!!
I'll let the boys take it from here.

Monday, October 17, 2011

Spina Bifida Awareness day 13

How is spina bifida treated?

There is no cure for spina bifida, and there is no set standard for care. each individual  is exactly that... and individual. Here is just a surface glimpse of what care and treatment might be given.

The nerve tissue that is damaged or lost cannot be repaired or replaced, nor can function be restored to the damaged nerves.  Treatment depends on the type and severity of the disorder.  Generally, children with the mild form need no treatment, although some may require surgery as they grow.
The key early priorities for treating myelomeningocele are to prevent infection from developing through the exposed nerves and tissue through the spine defect, and to protect the exposed nerves and structures from additional trauma.  Typically, a child born with spina bifida will have surgery to close the defect and minimize the risk of infection or further trauma within the first few days of life.

Selected medical centers continue to perform fetal surgery for treatment of myelomengocele through a National Institute protocol (Management of Myelomeningocele Study, or MOMS).  Fetal surgery is performed in utero (within the uterus) and involves opening the mother's abdomen and uterus and sewing shut the abnormal opening over the developing baby's spinal cord.  Some doctors believe the earlier the defect is corrected, the better the baby's outcome.  Although the procedure cannot restore lost neurological function, it may prevent additional losses from occurring. There are risks to the fetus as well as to the mother.  The major risks to the fetus are those that might occur if the surgery stimulates premature delivery.  Still, the benefits of fetal surgery are promising, and include less exposure of the vulnerable spinal nerve tissue and bones to the intrauterine environment, in particular the amniotic fluid, which is considered toxic.   As an added benefit, doctors have discovered that the procedure affects the way the fetal hindbrain develops in the uterus, allowing certain complications—such as Chiari II and hydrocephalus—to correct themselves, thus, reducing or, in some cases, eliminating the need for surgery to implant a shunt.

Twenty to to 50 percent of children with myelomeningocele develop a condition called progressive tethering, or tethered cord syndrome,  in which their distal spinal cords become fastened to an immovable structure—such as overlying membranes and vertebrae—causing the spinal cord to become abnormally stretched and the vertebrae elongated with growth and movement.  This condition can cause change in the muscle function of  the legs, as well as changes in bowel and bladder function.  Early surgery on the spinal cord may allow the child to regain a normal level of functioning and prevent further neurological deterioration.
Some children will need subsequent surgeries to manage problems with the feet, hips, or spine. 

Individuals with hydrocephalus generally will require additional surgeries to replace the shunt, which can be outgrown or become clogged.

Some individuals with spina bifida require assistive mobility devices such as braces, crutches, or wheelchairs.  The location of the malformation on the spine often indicates the type of assistive devices needed.  Children with a defect high on the spine and more extensive paralysis will often require a wheelchair, while those with a defect lower on the spine may be able to use crutches, bladder catherizations, leg braces, or walkers.  Beginning special exercises for the legs and feet at an early age may help prepare the child for walking those those braces or crutches when he or she is older.

Treatment of bladder and bowel problems typically begins soon after birth, and may include bladder catheterizations and bowel management regimens. 


Now let's take it a little further and make it personal. I want to  help you understand our particular situation a little better.

Carson had post natal closure of the spine at 1 day old. I was 32 weeks when we discovered his spina bifida and that was too late for the womb surgery to be performed. I have friends who participated in both sides of the MOMS trial, and the results vary favorably and unfavorably.  Carson's hydrocephalus was very mild at birth and a shunt was not needed. However, it slowly increased and at the judgment call of his neurosurgeon a shunt was placed just after his first birthday. We currently have physical therapy 3 days of week... Our primary goal right now is weight-bearing. In order for Carson to weight bear he is placed in a supine stander. 

This is the particular one that we use. Carson is laid on his back in the stander... We strap him in and then raise him to a standing position (full weight bear) His body is fully supported. We also currently have one day of developmental therapy with a teacher. She works on speech, and fine motor skills. We will be beginning aquatic therapy and/or hippo therapy shortly after Carson's 2nd birthday. As far as bracing goes we are currently in the process of getting setup with shriners hospital. Carson will be using a HKAFO for bracing. The initials literally spell out what it is- Hip Knee Ankle Foot Orthotic.
This picture isn't great but gives you the general idea.

This means that he will be braced from foot to hip. This is an area that we covet your prayers in. First that we could quickly get him braced, and second that the bracing would suit him well. Our third prayer request would be that we could graduate to less bracing- this would happen if Carson gained strength. Of course I get asked frequently if Carson will be able to walk.  That's another area to pray with us about. If you had asked me a year ago I would tell you "YES" and that we were going to do everything possible to make that happen. Now I would tell you that "He might" I learned this last year (both through research and speaking with individuals who have spina bifida) that sometimes it is worse on their bodies to force walking and you do more permanent damage for a temporary time of walking. It's a tough question to answer. We just  have to wait and see. It is our prayer that Carson reach his full potential and that we do everything we can to give him the best opportunities. It may be hard for you to understand this but we are totally fine if Carson only uses his wheelchair. . We have come to realize that individuals are not handicapped by their wheelchair. It's all about their attitude and spirit. Our prayer is that Carson have a joyful, independent, and godly spirit. We know that if he develops those three things then he will have happiness and true success regardless of his mobility status.

I hope that I helped you understand a little better. :) It's pretty crazy when you write it all out. My summary to all this info overload would be.... God is good, and regardless of what spina bifida literally may mean on paper it's not practical, and it's not really something we ever think much about. It's not our focus... The practical truth is I'm concluding this post to go tuck Carson into bed. We will read a book, pray together, sing a song, give upteen kisses and hugs, and then snuggle. What could be better than that?

Goodnight everyone. :)