Tuesday, May 20, 2014

Raising a Hero

I created this blog to show the journey of Spina Bifida, and I can't do that without being honest.  I don't want to give the wrong idea that things are always easy and wonderful.  But I don't want to give you the idea that things are always so hard and terrible either.  There are real and raw emotions that sometimes get overwhelming.  There are days I just close myself in my bathroom and cry... maybe not for any one reason, but for EVERY reason.  

I haven't written in so long.  It isn't because I don't have anything to write about - believe me I have tons.  I just never know where to start anymore.  I type and delete so much these days... never wanting to offend anyone, and not wanting people to feel sorry for us. 

There are many emotions wrapped up in having a child with Spina Bifida (or any illness/disease/birth defect for that matter).  We get called Super Parents all the time, and as much as we dumb down what we do, there really is so much you don't see.  You may only see the accomplishments and hear the great stories of how our kids overcome obstacles, but that doesn't mean it's all sunshine and daisies all the time.  I can't say we have it hard, because it isn't really that... but it is draining.  Physically and emotionally, absolutely draining.   

You have to understand, for every accomplishment, there are hundreds of failed attempts.  For every milestone reached there are 10 out there that aren't being reached.  For every smile, there are a thousand tears.  When we are out, people are like, well... he's almost 2 and he's just learning to crawl... what's the big deal?  They don't see that we spent the last year watching their babies crawl, walk and run while ours struggled to sit up alone.  Sure he's learning to stand and has a walker, but you don't see how much it absolutely terrifies him to stand up.  And God help the next person that calls him lazy.  He is FAR FROM LAZY.  You don't see the HOURS of work we put in every single week.  When he's on the lawn and you pass by judging me because I'm letting him scream while he sits in the grass, know that it's because of a sensory problem we are trying to push through.  I am not a mean Mommy.  And yes, I may still sit down and feed him because he can't quite get the hang of holding the spoon right.  I know his diaper is wet... it's always wet.   And if I'm jumping for joy at the smell of a poopy diaper, know that it's because his bowel muscles don't work and we haven't had poop for days.  

We get people staring all the time.  I get that he's a cute kid... and in a wheelchair... but don't look at him like he's broken or dying.  He's having more fun in that wheelchair than you could ever imagine.  And no - your kids can't "ride it"... it's his legs, sorry.   If you have questions, just ask.  Be polite and talk, don't stand there and stare.  Don't whisper behind our backs.  Don't yank your child away like he's got some crazy contagious wheelchair disease.  I promise he doesn't bite, and neither do we.  But you standing there being rude does make us consider it.  Despite the comments, the stares, the pointing fingers and the pity glances, we push through.  

We have become masters of scheduling.  This doctor has to see him before that doctor can do this, but he needs his braces adjusted so he can see this doctor ... it's really never ending!  Throw 4 different therapies in there every week and you've got yourself a full time job!  And did you know we were ninjas?  Don't believe us?  Wait till we are at a birthday party and you'll see.  Kids love balloons... and for that reason, people always have balloons at parties.  Balloon animals, balloons on the tables, on the ground, everywhere!!!!  Did you know balloons are latex? Did you know our kids have or are at high risk for a latex allergy?  If you see us karate chopping all the ballons in our path and high tailing it out of there without so much as a goodbye, now you know why!    

At the end of the day, I look at Dryden, and I seriously could not see him any other way.  Sure, it makes my heart ache that he isn't running around the house, but watching him pop wheelies and speed down every ramp he can find makes me so happy.  He truly loves life.  He loves making people laugh because he loves to laugh. 

He's so smart too.  All that talk about how he would have learning difficulties and may be behind in school  - he is the polar opposite.  He will be 2 in July and he can already count to five.  He says his ABC's up to the letter F, and knows MANY more letters.  He is starting to talk up a storm too!!  He LOVES his Elmo and Cookie Monster.  He's just a normal kid, doing normal things.  And at the end of the day - the only people that have any concern about his Spina Bifida is us.  He doesn't know any better.  And all of the running and doctors and therapy ... it all kinda becomes normal after a while.

So what is it like to be the parent of a kid with Spina Bifida, well... you will just have to wait and find out.  For us, it's exhausting, but absolutely amazing.

Tuesday, October 8, 2013

Spina Bifida Awareness

Did you know that?  Most people don't as it is often overshadowed by Breast Cancer Awareness.  While I mean no disrespect to breast cancer sufferers or survivors, I think something should be done about this.  If you walk the streets and ask 10 people what breast cancer is, chances are pretty high that they know.  Ask the same 10 people what spina bifida is and you're likely to get a few blank stares.  Forgive the dumb down, but awareness is supposed to make people aware.  People KNOW about breast cancer.  They don't know about spina bifida... at least not enough of them.

Studies show that over 60% of babies diagnosed in the womb with spina bifida are aborted.  But if they knew that their child had a better chance at living a normal life ... would they still?

When Dryden was diagnosed, we had never really heard of spina bifida.  We most certainly didn't know enough to make any sense of the situation.  The picture we were painted, as most parents are, was that of a "vegetable".  A child who would never talk, never walk, and would be a burden on us and society.  What we got was something totally different.  And as we have found over the last year... it has been the same story with almost everyone we have spoken to.

I'm hoping to change that.  To let parents know that there is so much hope out there.  Here is some info that we hope you will share.

There are four main forms of spina bifida.  This photo only shows three... but there is one that is not listed.  It is called rachischisis.  This form is most probably not listed because it is almost 100% fatal.  That being said... we know one absolutely adorable little boy (Elijah James) with rachischisis that is almost 3 years old!

Dryden was born with the most common form of spina bifida, myelomeningocele.  In this case, part of the spinal cord and surrounding nerves push through the open vertebrae in the spine and protrude from the back.  These nerves and exposed spinal cord are typically (as in Dryden's case) enclosed in a sac.  This requires immediate surgical repair to close the back and repair the spine.

Depending on the location of the lesion, it may cause bladder and bowel problems, sexual dysfunction, weakness and loss of sensation below the defect, orthopedic malformations such as club feet or problems with the knees or hips and the inability to move the lower legs.  The higher the defect is located on the spine, the more severe the complications.

Another common problem associated with spina bifida is Chiari II malformation.  Chiari II is where the brain descends into the upper portion of the spinal canal in the neck.  This blocks the circulation of the cerebrospinal fluid and causes Hydrocephalus.  Hydrocephalus is an accululation of the fluid in the brain.  This can injure a fetus' developing brain.

Modern medicine has come so far in helping people with spina bifida live happy, normal lives.  There is now an option of fetal surgery.  In this surgery, the fetus is partially delivered, the spine is repaired, and the fetus is returned to the womb.  The benefits of this surgery include:

  • Reversal of the hindbrain herniation component of the Chiari II malformation
  • Reduced need for ventricular shunting (a procedure in which a thin tube is introduced into the brain’s ventricles to drain fluid and relieve hydrocephalus)
  • Reduced incidence or severity of potentially devastating neurologic effects caused by the spine’s exposure to amniotic fluid, such as impaired motor function
Now for Dryden's story.  

Dryden had his spine repaired at less than 24 hours old.  He had a shunt placed 2 days later to regulate the fluid in his brain.  He has since had 3 additional surgeries.  Though the spine was placed back inside the body and the sac closed, the nerve damage cannot be repaired.  He has no sensation from his knees down to his toes.  He also has no movement in those areas.   Dryden has very little to no control over his bowel/bladder.  He sometimes needs to be catheterized in order to keep his kidneys safe.  He also has hip dysplasia due to the lack of muscle control in this area.   

But that's not all of Dryden's story.  He is a superhero.  

Dryden loves being outside.  He loves cruising around in his little chair.  He has the silliest personality ever.  He adores his big sissy.  He is his daddy's best friend.  He is mommy's little fighter.  

Though he only says a few words - dada, bubba, yaya (mama) - he can sign a lot more.  He signs daddy, fish, bike, dog, touchdown, more ... and I'm sure there are some that I've missed.  Needless to say... he is SMART.  He has no real cognitive delays... he is above average in his social skills.  He is the perfect little boy we hoped for.  He just happens to have spina bifida.  

Having a child with spina bifida is never easy.  There are days when I can't handle it and breakdown.  But I have found that it's just me.  To him... it's all normal.  This is his life.  There are surgeries.  There are diagnosis... but there are no limits.  

We have met some of the most amazing people on this journey.  People who have proven that having a diagnosis is not having a disability, but rather a possibility.  Dryden doesn't know that he is any different than any other child.  He does what he can and he tries his best to push himself as far as he can.  

I ask you... please share this blog.  It isn't about us.  It isn't about Dryden.  It's about educating people.
A diagnosis of spina bifida is not the end.  Don't let a diagnosis be a death sentence.  Let's make spina bifida KNOWN.  Make people aware.  Make October pink AND yellow.  Make sure your neighbors know. Make sure your siblings know.  Let your kids know.  Let EVERYONE know what spina bifida is.  The more you know, the better.  

Thursday, August 8, 2013

Just a glimpse

It's something you can't understand unless you're there.  The life of a special needs mom.  Being a mom (or dad) is hard as it is.  Being one to a child who has special needs is something entirely different.  Sure, we take it in stride, often making it look easy.  Don't let that fool you... it's never really easy.  There are things we don't tell you.  Things we don't complain about for fear of looking weak, showing fear, or being selfish.  

Most parents take their children to the doctor for their routine checkups.  Immunizations... well visits... anytime they get sick... maybe a total of about 12 times a year.  Our kiddos go about 12 times a month. Therapy... specialists... more specialists because the first didn't have an answer... more therapy... with the immunizations and well visits thrown in there.  Not to mention being in constant fear that you're doing SOMETHING wrong.  Side effects and symptoms ALWAYS hovering in the back of your mind so that anything out of the normal sends you spiraling into a mixture of sheer panic and trying to stay calm and convince yourself that everything is fine.  There is a constant fear that the doctors and nurses have labeled you as "the crazy lady" because your only way of telling them what's wrong is "something just isn't right".  And the satisfaction of hearing, well, you were right... followed by the punch in the gut of realizing that means more doctors and needles and scars.  
Therapy four times a week with four different people.  All giving you "homework" to do.  The fear that if you can't get to all of the homework, the next week when you return, they will think you a horrible parent.  Spending 20 minutes working on sitting... and 20 minutes working on crawling, and 15 minutes designated play time where you have to do these certain things... it's hard to squeeze that into an already crazy schedule.  

The worst is when you stop getting invited to anything because it is just assumed you won't be able to or don't want to go.  When you invite us to go do things with you... it isn't that we don't want to go.  We have to prepare.  How long are we going to be there?  Are they going to have balloons?  Dryden can't be around latex.  Will they have somewhere for us to sit?  How many other kids will be there, Dryden is very sensitive to sound.  Will people be staring at his scars?  Will we have to answer a million questions?  Do we have to hear the constant "what's wrong with him?" that comes with every new encounter?   

YES, we want a "girls night out"... but wait... can I find a sitter?  One that I can trust to do everything Dryden needs.   Make sure he wears his brace.  Don't let him just sit in front of the TV.  Oh, wait, watch that leg!  Make sure you don't feed him this.  He can't feel his legs so make sure you are aware of them for him!!  So while you have your girls night... although we are the ones who NEED IT THE MOST, it is rare that we will actually get to go.  

When you invite us for a play date... Dryden will rarely get to actually play.  He is just getting to where he can sit up, but is still pretty wobbly.  The other kids his age are crawling and walking and climbing... very rarely sitting still.    He will be sitting alone watching the kids pass him up.  And while right now, he doesn't care in the least... as a mom watching, it hurts deeper than you could imagine.  But we hold it all in... until we get home and have a breakdown.   

I remember when Tina was little... when she was ready to sit, she sat.  
When she was ready to crawl, she crawled.   
When she was ready to walk... she just did it.  
To a child without any disabilities, things just happen.  You don't have to DO anything except watch and be proud.  Imagine if that wasn't the case.  Imagine that instead of only worrying about feeding, napping and bathing you had to teach your child how to do everything.  While it may seem a minuscule task... it is not.  It is at times very overwhelming.  

While you watch your kid sit up for the first time, we have to teach Dryden how go from laying down to sitting up... over and over and over and over.  

While your little one is crawling around, we are watching as Dryden struggles SO hard to get that toy that's just out of his reach.  

While you watch your child stand for the first time, we have to get Dryden to realize that he even has feet... that something he can't even feel is somehow attached to his body and can be used to stand up.

While you are getting frustrated because your child is running away from you, we are quietly sobbing inside wishing that just for one second, it was our child.  

I'm writing this, not because I want pity, but because you should know.  If you know a special needs mom, just tell them they are doing a great job. Be prepared for it to be shrugged off as if what we do isn't THAT bad... but don't let it fool you!  Give a hug.  Sometimes, we REALLY need it.  And if we break down crying... it's nothing you did... we are just overwhelmed, over-stressed, and -just for a second- can't be supermom.  

I found this online recently too and wanted to share it with you. It is from a blog about Special Needs Parents.  Please read through them... I found myself in awe that someone had the EXACT same feelings as me.  

1. I am tired. Parenting is already an exhausting endeavor. But parenting a special needs child takes things to another level of fatigue. Even if I've gotten a good night's sleep, or have had some time off, there is a level of emotional and physical tiredness that is always there, that simply comes from the weight of tending to those needs. Hospital and doctors' visits are not just a few times a year, they may be a few times a month. Therapies may be daily. Paperwork and bills stack up, spare time is spent researching new treatments, positioning him to sit a certain way, advocating for him in the medical and educational system. This is not to mention the emotional toll of raising a special needs child, since the peaks and valleys seem so much more extreme for us. I am always appreciative of any amount of grace or help from friends to make my life easier, no matter how small, from arranging plans around my schedule and location, to watching my son while I am eating.
2. I am jealous. It's a hard one for me to come out and say, but it's true. When I see a 1-year-old baby do what my son can't at 4 years-old (like walk), I feel a pang of jealousy. It hurts when I see my son struggling so hard to learn to do something that comes naturally to a typical kid, like chewing or pointing. It can be hard to hear about the accomplishments of my friend's kids. Sometimes, I just mourn inside for Jacob, "It's not fair." Weirdly enough, I can even feel jealous of other special needs kids who seem to have an easier time than Jacob, or who have certain disorders like Downs, or autism, which are more mainstream and understood by the public, and seem to offer more support and resources than Jacob's rare condition. It sounds petty, and it doesn't diminish all my joy and pride in my son's accomplishments. But often it's very hard for me to be around typical kids with him. Which leads me to the next point...
3. I feel alone. It's lonely parenting a special needs child. I can feel like an outsider around moms of typical kids. While I want to be happy for them, I feel terrible hearing them brag about how their 2-year-old has 100 words, or already knows their ABCs (or hey, even poops in the potty). Good for them, but it's so not what my world looks like (check outShut Up About Your Perfect Kid). It's been a sanity saver to connect with other special needs moms, with whom it's not uncomfortable or shocking to swap stories about medications, feeding tubes, communication devices and therapies. Even within this community, though, there is such variation in how every child is affected. Only I understand Jacob's unique makeup and challenges. With this honor of caring for him comes the solitude of the role. I often feel really lonely in raising him.
4. I am scared. I worry that I'm not doing enough. What if I missed a treatment or a diagnosis and that window of optimal time to treat it has passed? I worry about Jacob's future, whether he will ever drive a car, or get married, or live independently. I am scared thinking of the hurts he will experience being "different" in what's often a harsh world (not to mention that I fear for the physical safety of the person who inflicts any hurt upon my son). I am scared about finances. Finally, I fear what will happen to Jacob if anything were to happen to me. In spite of this, my fears have subsided greatly over the years because of my faith, and because of exposure to other kids, teenagers, and adults affected with Jacob's disorder. When I met some of these amazing people at a conference last year, the sadness and despair that I was projecting onto Jacob's future life (because it was so unknown) melted away when I saw the love and thriving that was a reality in their lives. The fear of emotional pain (for both me and Jacob) is probably the one that remains the most.
5. I wish you would stop saying, "retarded," "short bus," "as long as it's healthy... " I know people usually don't mean to be rude by these comments, and I probably made them myself before Jacob. But now whenever I hear them, I feel a pang of hurt. Please stop saying these things. It's disrespectful and hurtful to those who love and raise the kids you're mocking (not to mention the kids themselves). As for the last comment, "as long as it's healthy," I hear a lot of pregnant women say this. Don't get me wrong, I understand and share their wishes for healthy babies in every birth, but it's become such a thoughtless mantra during pregnancy that it can feel like a wish against what my son is. "And what if it's not healthy?" I want to ask. (My response: you will be OK. You and your child will still have a great, great life.)
6. I am human. I have been challenged and pushed beyond my limits in raising my son. I've grown tremendously as a person, and developed a soft heart and empathy for others in a way I never would have without him. But I'm just like the next mom in some ways. Sometimes I get cranky, my son irritates me, and sometimes I just want to flee to the spa or go shopping (and, um, I often do). I still have dreams and aspirations of my own. I travel, dance, am working on a novel, love good food, talk about dating. I watch Mad Men, and like a good cashmere sweater. Sometimes it's nice to escape and talk about all these other things. And if it seems that the rest of my life is all I talk about sometimes, it's because it can be hard to talk about my son. Which leads me to the final point...
7. I want to talk about my son/It's hard to talk about my son. My son is the most awe-inspiring thing to happen to my life. Some days I want to shout from the top of the Empire State Building how funny and cute he is, or how he accomplished something in school (he was recently voted class president!). Sometimes, when I'm having a rough day, or have been made aware of yet another health or developmental issue, I might not say much. I don't often share with others, even close friends and family, the depths of what I go through when it comes to Jacob. But it doesn't mean that I don't want to learn how to share our life with others. One thing I always appreciate is whenever people ask me a more specific question about my son, like "How did Jacob like the zoo?" or "How's Jacob's sign language coming along?" rather than a more generalized "How's Jacob?" which can make me feel so overwhelmed that I usually just respond, "Good." Starting with the small things gives me a chance to start sharing. And if I'm not sharing, don't think that there isn't a lot going on underneath, or that I don't want to.

Wednesday, July 31, 2013

Find Your Happy Place

So, something has come to my attention lately as I found myself looking in a mirror for the first time in a VERY long time.  And no, I don't mean glancing while fixing my hair or makeup (which in itself is a rare occurrence), I mean really LOOKING at myself.  I've come to the realization that I don't like what I see.  

I've lost myself somehow along the way.  I've been so caught up in what Dryden needs that I have neglected to care for myself.  I've gained a lot of weight... haven't been eating right... I'm depressed, I hate going out, I hate this version of me.  

We, as moms, get shoved into a role of taking care of our little people and get wrapped up in certain expectations that society shoves down our throats.  We aren't supposed to go out and have fun with friends.  We aren't supposed to want to be away from our kids.  We aren't supposed to miss our fun times and date nights.  Basically, we are supposed to not have lives.  

I used to be the chick with the awesome hair.  I used to be fixed up all the time... even when dressed down.  I used to be a kick ass singer.  I used to be BJ's biggest fan in the front row of every show.  I used to love hanging out with friends.  I used to be... me.  I don't know who I am anymore.  I've gotten wrapped up in society's BS and become nothing more than a mom.  Which is fine, in moderation, but when moderation takes a back seat and it consumes everything you are... well, that's where I am. 

Maybe there are moms out there that are fine with putting their entire being on hold until after they raise their kids, but for me, and for my sanity... I cannot become one of those moms.  I believe that, just as everything else, being a mom is a PART of who I am... not all of who I am.  

I want my kids to know that you don't have to give up everything to be a good parent.  Part of being a good parent is balancing everything just the right way.  You can't be an A+ parent if you aren't happy.  You can't have a healthy relationship if you aren't happy.  

I want to go hiking.  I want to go camping.  I want to go kayaking.  I want ALONE time with my man.  I want to sing.  I want to act like a fool.  Yes, I'll have a few drinks.  Sometimes my skirts will be a little too short for your liking.  Sure, I'll get up and sing karaoke on a whim.  Don't judge me... don't hate me.  Let me be me.  Let me live in my happy place.  

Starting now... I'm determined to get my life back.  Our lives back.  To stop giving in to what everyone else thinks I should be and just BE.  Life is too short.  Find your happy place before its too late!!!!  

Monday, July 15, 2013

One Happy Birthday Boy!!

Well, the cast is off and the brace is on!!!  It really isn't as bad as we thought it would be either.  It allows him to sit up without any issues.  

The first thing he did when we sat him up was look at his foot and go straight for his toes!!!  He hasn't seen them in so long he found them quite amazing.  

Most importantly... it allows us to snuggle with him.  He has been giving lots of hugs.  And he loves falling asleep on daddy.  It feels so nice to just cuddle up with him... even with the brace.  

We were originally told that the brace would need to be worn continuously for two weeks.  And after that it would just be naps and at night.  That has now changed to six weeks of continuous (20 hrs. a day) wear and we will go from there.  The doctor said that the hip looks good, and is in place.  If we can keep him in this brace and it really works, I don't mind a bit.  

In other news... Dryden is almost ONE!  Can you believe it?!  We sure can't.  I suppose since we were so distracted with everything going on, time just seemed to FLY by!!  
He's such a smart little guy.  SO eager to learn.  Now that he realizes that words mean things and signs mean things, he has just been going off!!  He wants to know everything!!  He knows a few signs now, and while he doesn't do them every single time, he certainly knows the words associated with them.  

He can sign: 

He can point out your eyes, ears, nose and mouth.  We have been trying to teach him to sign "ONE" for his birthday.  He does it sometimes... not all the time.  He can also clap... he doesn't quite turn his hands in correctly yet, but we are working on it.  He's starting to say a few more things, nothing solid (other than da da and bubba) but definitely making other sounds and trying to imitate.  My point in all of this is, he is pretty much caught up with all of his developmental milestones a "normal" one year old should do... and then some!!!!

Now that the cast is off, we are going to start working on sitting again.  He is pretty wobbly after coming out of the cast.  He not only has to learn to sit again, but he has to adjust the way he sits because he is not out of line anymore.  He used to sit in almost an S shaped position.  His hip was out of socket which would push him to one side, and he would lean to the other side to try to make up for it.  Now that his hip has been corrected, it may take a little bit to get him sitting again.  After that, we are going to start working on his crawling/pulling up on things/standing.  I am so excited to see what he can do!!

We are still fundraising for his stem cell treatments.  I must admit, it has been pretty frustrating thus far.  Lots of work goes into these functions, not just from us, but from the venues hosting the events.  It gets very disheartening when we plan these events and no one shows up.  But we are going to keep pushing and keep going and we will get him there.  We have met some amazing people along the way who are really trying to push and help us, so I have no doubts that Dryden will get his stem cells next year.  

I've already started working with his therapists to create a way to track his development, movement and sensation before and after the treatments.  There isn't anything out there that we are aware of, so we are in the developmental stages of our own program right now.  I'd love to be able to provide some scientific results that can be utilized by doctors, patients, etc.  If this procedure can help Dryden, it can help other people out there too.  And as we have said before, if we can help Dryden that is our first priority, but after that, if we can help someone else too... and give them hope, then everybody wins.  

Tuesday, June 4, 2013

A Tisket, A Tasket, My Son Looks Like an Easter Basket

Oye.  We are just shy of a week into this spica cast on Dryden and it has been quite an interesting time already.

Diapering, which is what we thought would be our most complicated issue, has actually been the easiest.

I'm going to explain how this works, in hopes that it may make someone elses' life a little less hectic if and when they find themselves in a similar situation.  The way that the cast is placed, it goes around the waist - up to the chest and mid back.  The butt and a small portion of the crotch area is left open so that you can put a diaper on.  Now, that being said, you still have to find a way to NOT get anything inside of the cast.  What we have found works great is a pad.  Now, I spent a good 20 minutes looking at all of the options and finally found the perfect one.  It was NOT in the feminine area, but rather the adult incontinence area.  It is a Walgreens brand called Certainty.  I bought the ultimate absorbency, long length and it works WONDERFULLY!!!  It fits right inside of the cast, all tucked in so that it catches everything and doesn't allow it to leak into the cast.  Another plus?  A 27 pk only costs about $11.00 or so.  And they are so absorbent that we barely have to change the actual diaper!!

We really have no good way to transport him either.  He doesn't fit into a car seat, and holding him makes me so nervous.  But we have appointments and such that we have to go to so it has become something we are working on.  We have used the bean bag in the car, and it works well, but obviously not as safe as we could get.  The doctor is supposed to be ordering a vest for us to use in the car, but we don't have it yet.  Something to definitely check into before you get the cast put on!!

The biggest issue we have run into has really just been keeping him comfortable.  Our biggest recommendation, which even the hospital seemed impressed with, has been a bean bag chair.  Now, I must say, while it has be GREAT as far as shaping itself around his body... unfortunately, with it being leather, it does NOT breathe at all.  This leads to him sweating like CRAZY  if he is in it for any length of time.  But it really works for everything during the day!! It can form to fit inside of a wagon, it can form to fit inside of the playpin, it really is an awesome tool.  My advice, if you know ahead of time, look for one that is NOT leather and it could be absolutely perfect!

Other than that the use of two boppy pillows has been pretty good as well.  We have one under his head and one holding his feet up.  With the way the cast comes up and the weight of the cast on his leg, it works like a lever and as the legs pull down, it pushes up on his back.  Which, as you can imagine, is extremely uncomfortable.  Having the extra boppy really works to hold those legs up, and it doesn't wind up settling after a while like a regular pillow.

I gotta say - we thought this was going to be excruciating for him, not as far as pain, but more in the not being able to move aspect of things.  He doesn't seem to mind all that much.  He gets annoyed when he tries to sit up and can't.  He is always grabbing the stability bar and trying to pull up. Thankfully he is not arm spoiled, but even so, when he wants to be held, that is an obstacle in and of itself!  It's so awkward to try and hold him!  Between the angle of the cast itself and the big stability bar, there is almost no way to hold him.  But we have figured out a few ways and made it work.

As you can see, he is in good spirits and taking everything rather well so far.  We are really hoping this method works and that the socket will form and hold his hip in place.

For those of you who are not already please follow us on facebook.  We update the page daily with photos, news and videos (Dreaming for Dryden)

I'm sure we will come up with some other crazy methods in the next six weeks, but that's pretty much it for now.  Hopefully this will help someone!!

Tuesday, May 14, 2013

Reliving the Whole Ordeal...

The last couple of weeks, going to therapy has been really strange.  I would get there and get this really nauseating feeling pulling up.  I couldn't figure out what was causing it until I sat down last week and realized... one year ago, in May, we got Dryden's diagnosis.  The specialist that gave us his diagnosis is in the building right next to his therapists... and every time I pass there I just get sick thinking about it.  I know, you would think that with as well as Dryden has done, it wouldn't be an issue... but let me assure you... you will never forget the way you felt when someone crushed your entire world.  

Going back to the day is such an emotional roller coaster ... but I relive it all the time.  Just to give you a glimpse into what it was like, I will try and put everything into words.  Even so... actually living it is something I would never wish on anyone.  Some things may seem insensitive, or shallow, but let me assure you, it is not intended to be that way.  I am just trying to explain the feelings and emotions that were happening at the time.  

Monday, May 21, 2012:  I was about 29 (almost 30) weeks along.  We were scheduled for a routine ultrasound with my OB/GYN.  We had been to a ton of doctor's appointments and even done the 3D/4D ultrasound and now seeing Dryden was just exciting!!  I had taken the morning off to go to the appointment, but was planning on being back at work after lunch.  Brian had the day off so he had gotten to come along.  We were cutting up at the doctor's office, as usual.  We did the ultrasound and went in to wait for the doctor.  I was sitting on the examination table laughing when the doctor came in.  He said, "We found something abnormal in the ultrasound."  My heart dropped.  I looked at B and froze.  He went on to explain that he saw a bit more fluid in the baby's brain than normal and he wanted to send us to a specialist for a second opinion.  He assured us that this wasn't uncommon and that he may just need to have the fluid drained and he would be fine.  The ultrasound didn't show anything else abnormal so it was really just a precaution.  I was nervous, but with his reassurance, I felt ok.  My doctor scheduled us with the specialist that Wednesday.  We went home and crossed our fingers and hoped for the best.  

Wednesday, May 23, 2012:  We were pretty nervous being in the specialist's office.  We really weren't sure what to expect, but we really didn't think anything was wrong.  They called us back and brought us into the ultrasound room.  We watched nervously as the ultrasound tech started doing her exam.  In front of us, on the ceiling, was a large monitor so we could watch the ultrasound.  But this one was different.  They weren't trying to get cute pictures.  They weren't trying to let us see Dryden.  They were studying him.  We couldn't even tell what it was they were looking at... but on the screen to the right the tech was clicking away.  Highlighting things... magnifying things... not once saying a word.  We kept seeing her highlight and then click "abnormal".  Every time she hit abnormal, it would light up bright red.  We kept looking at each other, getting more and more worried by the minute.  Then she stood up, said, the doctor will be with you in a minute, and left.  We were so confused.  What was so abnormal?!  Why didn't she even say anything??  We sat there for what seemed like FOREVER before the doctor came in.  She reviewed the tech's information and then did her own ultrasound as she and the tech talked to each other pointing out different things.  Still never once trying to explain what they were talking about.  Then she stopped and turned to us.  She asked us if we knew why we were there.  We told her that our doctor said that Dryden had a little extra fluid on his brain and that he said it wasn't a big deal.  Then it happened.  

She said that there wasn't just a little fluid on his brain.  There was a "moderate" amount.  We didn't know what that even meant... so we kept asking her... moderate... what is moderate?  What does that mean?  She said that it was a lot... a LOT more than should be there.  But that wasn't the only problem. The reason that the fluid was there was because Dryden had myelomeningocele, a form of Spina Bifida.  She explained that there was an issue when his spine was being formed and that he had a lesion on his back ... a sac ... where his spine and nerves were exposed.  The rest of the appointment was kind of a blur... I remember sitting there just crying.  Brian kept asking her, what does this mean?  Is he ok?  Is he going to live?  She told us that he would lead a very difficult life if born.  I remember she just kept talking about the "moderate" amount of fluid on his brain.  Brian kept saying, "What does that MEAN?"  Is he going to be mentally retarded?  Is he going to be ok?  She told us that if he was born he would have severe mental retardation.  He would pretty much be a vegetable.  She said that the lesion would render him in a wheelchair all his life and that he would never walk.  He would have no quality of life.  She then told us that since I was so far along they couldn't legally abort him in Louisiana, but that there were other states that would if we decided to abort.   I couldn't believe it.  If this was a problem that was there since before our first ultrasound, why did NO ONE see it until now?   

She told us that we would need to see her weekly from then on to monitor the lesion and fluid and make sure that there was not too much stress on Dryden.  Then she left.  We sat there, both of us, crying for I don't know how long.  I didn't want to move, but I didn't want to be there another second either.  Finally we left.  I remember getting to the parking lot, still crying, when I saw a little girl in a wheelchair, who had very obvious mental retardation... and I just remember sobbing.  Is that what we had to look forward to?!  If that was the case, would it be better if we did abort him?  Why was this happening to us?!  I couldn't go to work.  I think Brian called them and told them that I wasn't coming in.  I sobbed the entire way home.  I was absolutely crushed.  I got home and just collapsed in the bed and sobbed.  For hours.  B kept his distance, and we barely talked.  The whole way home he just kept saying, "It's going to be ok".  But I knew he was scared.  I was so angry, and terrified, and just kept thinking that this was all my fault.  I must have done something wrong.  

I thought for sure that Brian hated me.  How could he not?!  He had so many plans for Dryden.  He, himself, was a skateboarder, dirt bike rider... rode bmx... and we talked about all of these things for Dryden.  He couldn't wait till Dryden rode his first skateboard.  He couldn't wait to play football with him.  And now... he would never have that.  He would never get what every father dreamed of for his son.  I ruined it all.  

I remember calling Rhema and even though I insisted on her not coming, she dropped everything and came over.  We sat in her truck for an eternity and talked. We both cried.  We went through the whole thing again.  I told her, I couldn't see anything but that little girl in the wheelchair and that I didn't think I could be one of those moms.   I didn't have it in me.  She told me, Kellee... he's still going to be a baby.  He isn't going to be born a 12 year old in a wheelchair with mental issues.  He will be your baby and you will love and snuggle him, and hope for the best.  I remember feeling so much better after that. I was still terrified, and I still cried myself to sleep so many nights, but that one thing kept me going.  

We already had a 3D/4D ultrasound done, and actually had another one scheduled for when I was 32 weeks.  But I couldn't wait another two weeks.  I called and scheduled it for that Saturday.  I had to see Dryden again.  I had to see my BABY instead of a wheelchair.  I know it sounds terrible, and shallow, and I'm not trying to be insensitive, but rather trying to express what I was feeling at the time.  As usual, Dryden was difficult for the ultrasound tech.  He would always start moving around like crazy when they tried to get a clear picture.  But we still got a few.  He smiled, he kicked, he wiggled around... and he reminded me that he was just like any other baby.  There was no way that there was something wrong with his brain.  Once again, I felt much better leaving there.  

I dreaded going back to the doctor the next week.  I never wanted to see her again.  We went through the ultrasound process again... talked to the doctor, and found out what was in store.  We would need to see a neurosurgeon and have him talk to us.  Dryden was going to need surgery as soon as he was stabilized to close the sac on his back.  After that, they would install a shunt in his brain to drain the fluid.  They referred us to a pediatric neurosurgeon and waited for the appointment.  

Brian couldn't take off of work for the appointment, so I recorded the whole thing to make sure I didn't miss anything.  His mom came with me too.  I remember initially thinking, OMG this guy is OLD when I first met Dr. Walsh.  He started talking, and was so hard to understand at first.  But the more he talked the more I liked him.  He really seemed to know what he was talking about.  He said that he had done over 5.000 of these operations.  I asked him his opinion about the fluid on his brain and whether he thought Dryden would be in a wheelchair his whole life.  He assured us that the fluid on the brain was not that bad.  He said that Dryden's head had not started to grow abnormally, which meant that the fluid was not continuing to build up.  He said that short of a few behavioral problems, and possibly a few motor skills that would need work, Dryden would be just fine.  As far as the wheelchair, he said that it really was all up in the air and depended on where his lesion was, what nerves were involved and  on Dryden himself.  He told us that he had many patients with myelomeningocele that were able to walk and lead perfectly normal lives.  He said that where Dryden's lesion seemed to be, the most likely outcome would be that Dryden would have no movement in his legs.  He would have no feeling below his knees.  His bowel and bladder would also have issues as the nerves for these fall into where his lesion was.  We asked if there was anything we could do... if there was any cure... if we could fix it.  He explained that there was nothing.  What was done was done.  And that it wasn't anyone's fault.  

The rest, as they say, is history.  Dryden was born via c-secion on July 18, 2012 at exactly 36 weeks.  They did his spinal surgery at 9:30 a.m. on July 19th and his shunt surgery on July 20th.  Let me tell you.  If you think being pregnant and waiting for your baby is torture, imagine being pregnant and knowing that instead of holding your baby after birth, he is going to have to go to surgery.  As a parent, not being able to fix things for your children is pure torture.  We all know this, when our kids get a scrape or cut, when they have a cold, when they break a bone... but this is multiplied times 1000.  It is absolutely unimaginable and beyond explanation.  The heartache of seeing your newborn baby laying there with an incision from hip to hip, an incision on his head... and him hooked up to all kinds of tubes... it makes me shudder just remembering it all.  

Things were pretty rocky for the first few months.  His back had issues healing, he had to have a shunt revision in December, and we have been to the ER a handful of times now.  Obviously, Dryden has done much better than his prognosis.   He has movement in his legs and as Dr. Walsh predicted, he has limited sensation in his lower legs.  We don't know exactly where the sensation stops, but just from poking around we know it is at least from the shins down.  His orthopedist says that he should have no problem walking though with some assistance.  

There are still days that are extremely hard for me.  My stomach still turns when I see other kids his age crawling and running around.  I ache to know that he can't do everything they can do.  I get jealous, and angry and sad all over again.  There isn't a day that goes by that I wish he didn't have to deal with this.  But there also isn't a day that goes by that I am not absolutely amazed by what he can do.  He is the happiest baby I've ever met.  He has so much personality, and a smile that melts everyone's heart.  He has become an inspiration to us and to everyone who knows him. 

He has opened our eyes and made us so much more aware of the world around us too.  We all get so caught up in our own world and our own problems and life that sometimes we forget that there are people out there dealing with so much more.  Brian and I have made it our goal to give whenever we can.  We want to raise awareness and give hope to those out there who had to go through the same thing as us.  We want to let people know that there is so much doctors don't know and that a diagnosis is NOT a death sentence.  Don't ever give up, because your kids never will.  

We have researched and found that there may actually be a treatment that can help him though.  Stem cells are producing amazing results in other children with Spina Bifida and we are hopeful to have this treatment done for Dryden in the near future.  We have set up a fundraising page and are hoping to get the funds before too long.  If you would like to donate, please do so at 

Any help is appreciated.  If everyone gives even $5.00 or $10.00 we could have the treatment done this year.  

Most importantly though, please pass along Dryden's story.  You can find everything on his page, Dreaming for Dryden https://www.facebook.com/DreamingForDryden .  You never know when you can help someone by sharing his story.  

Thank you all so much for reading.  We will keep everyone updated, as always.