A Penny for Your Thoughts...

A penny for your thoughts?  Actually... on second thoughts ... I'll keep my penny and you can keep your thoughts!!

We have already hit a lot of resistance with the stem cell issue.  I suppose I knew it was coming, I just wasn't sure what to be prepared for.  We have been talking to Dryden's doctors as he sees them, just to get an idea of what they know/have heard in the medical community about the stem cell treatments.  Many of them aren't familiar and are a little skeptical.  Some have been very excited, heard wonderful things, and are all for it.  

Let me assure you, if there were any thought in our minds that there was something that could go horribly wrong, or that this could injure our child in any way ... we wouldn't even consider it.  I don't think any parent would put their child through some crazy procedure on the off chance that it could work.  We realize that the fact that it is not available in the United States sends red flags, however, before you get hung up solely on the fact that it is going to be in Mexico, at least attempt to find out the reasons that it is not done in the United States.  Political and ethical debates are the top reasons.  Stem Cells are a new (within the last 10 years) method of treatment.  There aren't as many studies out there for them, and with the political and ethical holdups, funding is hard to secure to do additional studies.   

We welcome and appreciate people's opinions, advice, and concerns.  What we ask, however is that you do your research FIRST.  We have done ours, and a LOT of it.  If you are going to come at us without first educating yourself as to the situation at hand... then you can very simply keep your thoughts to yourself.  If you approach us after your research and still have concerns we will gladly address them.  We are looking at this from ALL angles, not as a miracle cure for Dryden.  

We know that this is not a CURE for Spina Bifida.  We know that we cannot expect Dryden to get up and run.  And as far as our "expectations" with this procedure, it is really difficult to pinpoint them as there are a lot of areas we would like to see improvement in!!!  We would love to see Dryden's bladder correct itself so that he does not have to be continually cathed, and doesn't "leak".  We would love to see sensation in Dryden's lower legs (right now, from what we can tell, he has sensation down to about his knees).  We would love for Dryden's muscles in his lower legs to fire up and start functioning.  We would love to see him wiggle his chubby little toes.  ALL of these things have already been done in other Spina Bifida children treated with Stem Cells!!!  

The procedure is administered in an operating room via IV and takes about 30-45 minutes.  After which they watch the patient for about 6 hours, just to make sure there is no sign of infection.  Some patients have seen improvement right out of the operating room.  That being said, there IS a chance that Dryden's body will reject the cells.  In that case, his body would just kill them off and no harm would be done.  I have spoken with many parents who have had treatments for their children, as well as adults that have had treatments done.  Some have had outstanding results, some have had no significant results.  No one I have talked to has had any BAD experiences with the stem cell treatments.  

Without people going to other countries to do these treatments, we would have no one to pave the way for future treatments here in the United States.  If it was your child, would you not do anything you could to better their life?  While we know there is no "cure" at this time, if there is a chance this will help him walk, need less treatment later in life, and improve areas such as his bowel/bladder function, we are going to do everything in our power to make it happen.  We know you would too if you were in our position.  

I apologize if this offends anyone, it is NOT intended to do so.  We just do not want to be bombarded with negativity when we are trying to do a positive thing for our baby.  We love all of you, and if you have any questions, we are glad to answer them to the best of our knowledge, and if we can't... we can put you in touch with people who can.  Please follow us on this journey and stand behind us, don't try to block our path.  

There's my thoughts... and you got them for free... no penny needed.  

A Whole New World

So, if you follow me on facebook, you know that we have been doing research on stem cell treatments. I must say... once I started reading up on it, a whole new world opened up to us.  I never want to seem... ungrateful... for anything with Dryden.  I am obviously not happy with the situation, but I don't want to complain all the time either.  The way I had been dealing with it was, we deal with what we are given.  But I wasn't happy that HE had to deal with it, and that's what made me so sad.  But now... everything has changed!!  The research, the statistics, the facts - they don't lie!!

We are registered and hoping to get treatment with the Nova Cells Institute in Tijuana, Mexico.  I know, it seems a little crazy... but before you judge, do the research for yourself.  I have been speaking with two mothers who have brought their children and seen absolutely amazing results!!  One little girl, Ava, has gained sensation in her legs and feet where there was none before.  And Bryson... well, now Bryson is amazing too... he was paralyzed from the waist down... and now is walking around with his braces/walker.  SO AMAZING.  So - judge away - we don't care!!!  If we can give Dryden a chance at an easier/better life - I don't care what anyone says.

Anyways enough of that.

I met Bryson and Ava's mothers on facebook and they are  sending me the kids' old braces and walker!!!  The earlier the better!!!

We are holding a fundraiser online for help with Dryden's treatments.  You can go to www.giveforward.com/dreamingfordryden and donate.  Every little bit helps.  For the locals - we will be holding various fundraisers to help raise money as well.  If you can think of anything, send it our way!  We can use any ideas!!!

We love you all and thank you so much for your support!!!!

We Have LIFTOFF!!

I know I brag about them all the time, but I absolutely love Dryden's therapists.  All of them.  They push him and push him - and it is starting to pay off.  Let me start by introducing them.

First there is his Physical Therapist Mrs. Anita (Mrs. Ne Ne)

Anita has been seeing Dryden since he was about 2 months old. She works with Dryden's gross motor skills (sitting, rolling, walking) and muscle tone/ability.  She pushes him to the max.  I love her  excitement when Dryden does something new.  She's a total rebel, animal lover, music lover and you can tell she LOVES what she does.  I kind of see myself in her.  


Next is his Occupational Therapist Mrs. Kerry

Kerry has been seeing Dryden for about 4 months now.  She works with Dryden on his fine motor skills (grabbing, reaching, picking up, dropping).  Since Dryden sees Anita and Kerry back to back, sometimes Dryden is a bit difficult to work with.  But she always keeps his favorite toy handy and sure enough - works every time!  She is so easy to talk to and always makes me laugh!  


And last, but certainly not least is his Special Instructor, Mrs. Betsy  

Betsy has been seeing Dryden since he was about 2-3 months old.  She works with Dryden on everything.  She works on his gross motor skills, fine motor skills, and everything in between.  She plays with him, sings to him, makes him laugh and makes him work without him even realizing it.  She is by far my favorite person to have come into our lives.  Not only has she been a therapist for Dryden, but for me as well.  She always has an open ear, and is always ready to help.  

Now that I've gotten through that... here is why I'm so excited.  My little man is finally getting the hang of rolling over!  I know, most of you think "whoop de do" but man have we been working on it for SO long.   He still doesn't have it totally down, but he gets it now.  He knows HOW to do it.

And that's not all either...

Dryden is starting to push up and try to scoot his little legs!!!!!!!!!!!!!!  Again - not quite there yet... but I wasn't expecting this for a little while longer!!!

OH!!  And there's MORE...

For the first time this week in PT... Dryden actually put weight on his legs!!!  He usually looks like a little marionette puppet.  You hold him up and he just kinda "hangs" there.  But not this week!  He was doing his little marionette pose and... all of a sudden... he pushed!!!  TWICE!!!!!!!!!!

We are about to try and get another PT on board and the Ortho and start talking about when to order his AFO's so he can start trying to weight bear some more.  Obviously it will not be in the immediate future, but just knowing it's coming makes me very excited.  And the fact that he pushed at all makes me ecstatic!

Trust me... it isn't all rainbows and sunshine.  There are days that I honestly don't know how I can go on.  There are days when I look at Dryden and I just get sad.  Knowing he will have certain limitations, as a mother, I just can't help but be sad.  But it isn't all bad either.  Without the rough times, you never learn to appreciate the good times.  All the negativity... all the pity... all the hard days... they all melt away when we have days like this.  And in the end... I love my baby boy.  I love him just the way he is.  And so does BJ... and so does Tina.

So with all that said... in the words of some dear friends of mine...

http://www.reverbnation.com/thescorseses/song/8674689-drink-blood-spacely-sprockets

Be the EXCEPTION

When the house is quiet, my mind wanders.  Back to the beginning.  I can't believe what an emotional road this has been so far.  If someone had told me I'd have gone through this a year ago, I'd have thought they were crazy.  I always admired people with "special needs" kids.  I KNEW I didn't have the strength to do what they did.  I could never understand how it was that those people were some of the happiest people I had ever met.  Nothing seemed to get them down.  

When we were given the news that day I thought my whole world was coming to an end.  Your baby will never walk.  He may be a vegetable.  Terminate.  So overwhelming.  Every time I think about it I get emotional.  I still don't feel like any of this is real.  You become so used to everything that I supposed in a way you get desensitized to the reality of the situation.  

People ask me how we do it.  How do we just take everything in stride?  My answer is, how do you not?  You'd be surprised what you can accomplish with a positive attitude.  We have learned to look beyond what the doctors say.  Instead of seeing problems, we create a solution.  Rather than brand him with limitations, we set new goals to accomplish.  We refuse to let him be bound by the "rules" of medicine.   There are no finite rules after all... only opinions based on other people.  In MY opinion, my son will make you eat your words!  

And those parents who were so unexplainably happy... well... I've become one of them.  It is absolutely amazing how much happier you become when you start to focus on the small things in life.  The ones that are most important.  The little things become so much bigger when you take the time to realize you only get this moment once.  I've decided that I am making the most of the time we have.  It makes no sense to rush through life only to get to the end and die realizing that you spent your whole life worrying about things that didn't matter.  I don't want to cheat myself or my kids out of the most amazing life possible.  You only get one shot.  Don't waste it on things and people that don't matter.  

I am going to be focusing on advocating and awareness... not just for Spina Bifida but for life.  I'll tell our story to a thousand people because I know that one out of that thousand will take something away from it.  If we can help ONE family and save ONE baby's life from being "terminated"... then we have done our job.  Don't let someone say you can't.  Don't let a doctor say you won't.  Be the exception... No limits people... only goals.  

From Heartbreak to Happiness

Valentines Day - 2013 - Wild Thing

Well, today was the first time that I really felt sorry for myself.  Myself, Brian and mostly Dryden.  It's silly really... the way it all happened.  Honestly, I feel a bit ashamed for even thinking it, but the mind can't help what it thinks.  

I was going through all of Dryden's baby clothes.  It was really crazy holding those tiny little things up. Most of them he never even got to wear because he was so GINORMOUS.  But just thinking about it made me sad.  I remember buying them all.  Each and every one.  

It took me forever to get used to the idea of having another baby.  And although I reallllllly wanted one,  I was TERRIFIED when I found out it was a boy.  I had NO idea how to be mommy to a little boy!!!  I had Tina... and though she isn't exactly "girly" she's certainly no boy!  

Then I remember finally getting used to the idea.  We were having a baby!  And it was going to be a BOY!  We were SO excited.  And then... here comes the news.  UGH... Every time I think about it my heart jumps to my throat.  That feeling... of knowing that there is something wrong with your baby and there is NOTHING you can do about it.  

Sitting there, folding all of those clothes made me think of how much Dryden has been through in his few months here.  He is about to have his FOURTH surgery.  You know what my FIRST surgery was?  Having Dryden.  Yeah.  I've never had another!!!

All of my friends are having babies.  I swear - it comes in waves.  And for the first time, I feel a little self pity.  Why were we handed this card?!  Why does MY son have to have all these crazy surgeries?! Now, don't get me wrong, I don't want any of my friends' babies to have any problems.  I'm not wishing this on anyone else.  I just don't think I'm prepared for this road.  Still.  How do you prepare for something like this anyways though?  

2/12/2012 Mardi Gras Night

Dryden is SO happy it's hard sometimes to even remember that there is a problem lurking under all of that chubbiness.  He just takes every day and rolls with it.  So what if they want him to roll over and crawl.  He will do it when he is good and ready.  They told us that they were concerned because he wasn't reaching for anything... the very next week in therapy, he was like FINE... here... I'll reach.   Unstoppable.  Me... not so much.  

I think of all of the things we have to do and look out for and how used to the whole process we are.  Tina for example.  She has never even flinched when I said, Tina, I think we need to take Bubba to the hospital.  Her response is, no matter what we are doing, ok mom, I'll get the diaper bag ready.  She's 9. She takes it better than me!!  We are cathing him every 4 hours now... and she has never really questioned it.  She asked one time and I told her we had to help him pee pee and that was it.  From them on she is by my side to help.  I guess it really has just become our way of life, but it doesn't make it any easier.  

I'm still working out the kinks in my little mommy heart.  I can't stand thinking about his future and anything that could possibly go wrong.  It drives me insane on a daily basis to know that he will have a slightly harder life than most.  But, as parents, all we want for our kids is the very best, right?  Is it so wrong of me to want the same for my son?  You may say that it's wrong for me to feel this way.  I KNOW my baby is perfect just the way he is, but tell that to the guy behind me in line at the grocery store when he is staring at his scar on his head.  Or the lady checking us out at the restaurant staring at the "train tracks" on his back.  Don't tell me you wouldn't get a little upset deep down inside.  They don't know him.  They don't know how much he has been through.  

Then he smiles at them... and they forget it all.  I can't tell you how many times I've heard, Oh my GOD, he is such a HAPPY baby."  All I can say is, you have no idea.  He wakes up smiling.  He is just SO happy to be here.  

I have friends who have lost their babies and it really puts into perspective how lucky I am to even have time to spend with my little man.  It makes everything ok again.  I'm not ok with the fact that bad things are going to happen... but in a way, maybe I am.  At least he is here for them to happen.  And in the end... I know he is STILL going to be the happiest baby I've ever known.  

A little this... a little that...

Type type type... DELETE.  Type type type... DELETE.  

That's pretty much how this blog has gone.  I WANT to type this update... but for some reason... words escape me.  Or maybe, I don't want to put it out there because I'm just hoping that way it won't be true.  So I type, and then I delete.  I've already typed this much... and said nothing.

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Funny thing is - it really isn't all that bad to begin with.  But I feel SO guilty... scheduling a surgery for Dryden after all that he's been through already. The first two, when he was born, were expected.  It didn't make them any easier, but I knew they were coming.  The third, was quite unexpected and shook me up a bit.  This one...  I am scheduling.  Ugh.  

Like I said, it isn't that big a deal - Dryden has to be circumcised.  He couldn't have it done when he was born because of all the other surgeries.  They wouldn't clear him on it until he was healed from the others, but then he had so many problems with his back healing that it was too late to get it done.  Apparently, if it isn't done before the baby is 2 months old, they wait until they are 6 months because they have to put them under anesthesia to do it.  But now they HAVE to do it... and it has been scheduled.  

On top of that - the initial diagnosis that his bladder/kidney function was normal has since changed.  It seems that his bladder is not emptying fully and they are afraid of it refluxing back up into his kidneys.  They have prescribed a medicine called Ditropan that is supposed to help, but we also have to start cathing him once a day to help him empty his bladder.   The doctor said that he is doing it out of more of a precaution at this stage.  But he thinks that if we do this now, he may not have to do it forever.  The thing is, we just don't know.  

I have to admit, this scared me more than anything.  Sometimes, the bladder/bowel nerves are not an issue with Spina Bifida, but more times than not, they are.  I was hoping that Dryden would be one of the lucky ones.  

I read a lot of posts from mothers about their kids having frequent accidents and having to deal with schools who don't understand and cruel kids who don't care to.  It is so hard to be a kid in the first place.  Kids are mean.  Self preservation kicks in and empathy gets kicked to the curb faster than a two-timing boyfriend.  

Tina is in 4th grade now and has been made fun of and bullied pretty much her entire school career up to this point.  It has made her completely insecure about everything and has caused her to pretty much barely pass every year by a thread.  She has NO self confidence.  She can't complete one thing without checking to make sure she did it right.  She needs constant reassurance, but no matter what you do, it just isn't enough for her.  She can get 9 things right and 1 thing wrong, and the second she gets that one thing wrong, she shuts down and thinks she doesn't know how to do it.  She can't take a test to save her life because she freaks out and doubts herself.  I've found notebooks with "I'm stupid" written in the back of them... and it really hurts my heart that she thinks that.  And the only reason she is picked on so much... she is small.  Seriously?  You couldn't find anything better than that?!  But no, she is the smallest kid in the class - always has been - so they target her and push and push and push because they know she won't push back.  

Dryden - 6 months... Tina 9 (almost 10)  I think he's going to be holding her soon...

So, for her to be picked on and bullied this much and to be this affected for a reason so minuscule,  it drives me crazy to think of what kids might say about my little man.    But... I know I'm being a baby and whining.  There are people who have it worse, and are perfectly fine.  I just worry too much lately.  Believe it or not, I used to not be like this.  I used to be the most care-free person I knew.  Now I'm stressed out all the time and worry about everything.  Not the ME I want to be, that's for sure!  But I'm working on that.  :) 

So, now you see why I've been avoiding all of this.  I feel bad promising to keep everyone updated, and then not actually doing so, but I needed to sort this out in my head first.  

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On to better and brighter things... Dryden's Healing Helper came in!  I chose a giraffe for Dryden because for some reason, they have always just kinda popped up around him.  One day we reaized he had a LOT of giraffe stuff!  

Dryden's giraffe has a scar (zipper) on his head where his shunt is.  Inside the zipper is a little brain.  :)  He also has a scar (zipper) on his back for the Spina Bifida surgery with a little bone inside that has his name on it ... pictures below.  

Dryden's Healing Helper!!!

I think he likes it!!! 

For those of you who don't know what a Healing Helper is... check them out... 

http://www.healinghelpers147.com 

Or you can look them up on Facebook by typing "Healing Helpers" or by clicking the link below...

Healing Helpers on Facebook 

Such awesome people and such an amazing thing they are doing for these kids.  

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So... I guess that's it for now.  Therapy and doctors ALL WEEK plus a TON of other stuff going on.  Things are getting CRAZYYYYYY around here!!!  

The Chunky Cycle - YES, it's a thing!!

Christmas 2012

Apparently there is a cycle.  The chunky cycle.  This is when your baby is chunky, and doesn't move around because of the chunkiness.  But since he doesn't move around, he can't lose the weight.  So what do you do?

Christmas 2012

Our Physical Therapist says to cut back on his food intake, but I have done the research, talked to his doctor and confirmed... that isn't possible.  I know you wouldn't believe me by looking at him, but ... he gets less than the recommended food intake for his age as it is!  His problem is that he is just not moving much.... and ironically enough, its because his tummy is so big, its hard for him to lay on his tummy and move around!  But - we are working on it.  And I'm sure my chunky baby will even out pretty soon.

He's very proud of those rolls too... 

Rumor has it I was a pretty LARGE baby.  My Grandpa used to call me Michelin because my legs had so many rolls.  My mom called me thunder thighs too... so... he could get it from me.  BJ was a pretty big baby too though... weighing in at a whopping 10 lbs. 9 oz. at birth... so ... maybe he got it from him.  Either way - we both turned out to be pretty scrawny kids and healthy adults.  So, I'm not that worried... 

He made 6 months today... seems like time is just getting away from me.  He's learning so much and getting so big... I just can't believe it!!  

HAPPY 1/2 YEAR BIRTHDAY DRYDEN!!!!!!

Hopefully next time ... Dryden will have leveled out a little and we won't be worrying about his chunky butt anymore... in the meantime though... parents beware... the chunky cycle is real... and it's looking for YOUR KIDS!!!!