Peach's Neet Feet

A while ago another Spina Bifida mom was talking about these super cool shoes her little guy go from a group called Peach's Neet Feet. Mr. K had been through SO MUCH with his SB, and I thought it was really cool that some one would make him special shoes. But I didn't really think of it for Nathaniel, because at that time he was fairly stable.  When we began this current journey with his spinal surgery, I was contacted by someone associated with the group and asked if I would like to apply for shoes for Nathaniel. I thought it might give him something cool to work with on his journey back to heal so I went for it.

 

Through a series of issues the shoes seemed to be something that would never actual transpire. I really though it would be cool to give them to him around his birthday, but God had other plans. In His perfect way, they showed up late last night. So Nathaniel got them this morning, his last day here on Rehab and his GOING HOME day!

 

 

He was REALLY excited to get his special treat....

 

 

I gave him the shoes one at a time so he could really appreciate the uniqueness that is in each design.

 

And he was so EXCITED each time he turned the shoe and saw something new.

 

When I was filling the paper work out for the shoes I was REALLY concerned about the size and style because in the past the ONLY thing that fit were the Converse Easy Ons. So you can imagine my absolute delight when the shoes fit PERFECTLY over his new braces!

 

So when we applied there was a form that we filled out asking all kinds of questions about what Nathaniel likes and this is what the fabulous artist did from Nathaniel's information:

 

 

 

My little sports man... he loves sports of ALL kinds so here is a jumble of balls.

 

 

And of course... my little man LOVES to surf, so here is a fabulous collection of surf boards!

 

Nathaniel's journey is Spina Bifida, so here is his SB awareness ribbon.

 

We always rest in the Lord, and Nathaniel's favorite football team is the Baltimore Ravens, so the toes of his shoes represent that.

 

And of course... His name, in his favorite color!

 

I am amazed by these AWESOME shoes!!

  

 

And Nathaniel is already ROCKING them at his final therapy sessions today!

 

 

If you are interested in finding our more about this AMAZING organization, go check them out on Facebook:

 

Peach's Neet Feet!

 

THANK YOU!!!!!

To all who helped make this unique and special gift happen!

 

The verdict is in....

and I am trembling in my boots!

 

But with God ALL things are possible!

 

So here goes. I am going to put "out there" the news that I am still having trouble getting my heart and mind wrapped around.

 

Dr. Sun called with the final diagnosis and treatment plan. And my world came crashing down again. I am not so sure I am enjoying this roller coaster ride, I truly wish the cart would stay ON the tracks! But I trust that the Lord is doing something MAJOR and that is why it is so hard!

 

So, the diagnosis is:

Tethered Spinal Cord

Large Epidermoid Cyst in the area of his tethered cord

AND multiple other cysts in the spinal cord sack

 

The doctor counted over 40 cysts ranging in size and severity in the membrane sack that holds Nathaniel's spinal cord. He says that he has seen these cysts occasionally, but never to the degree that Nathaniel has them. He also mentioned that they could be in his brain. We did not do images on that area, so we don't know yet. We will do those images when we go back up for treatment.

 

This news alone broke my heart.

No wonder my poor little man is in SO MUCH pain.

And I am so frustrated that we have been getting progressively worse and the doctors at UCSF did not catch this.

BUT I am SO THANKFUL that Dr, Bravo agreed to this second opinion, and that God lead us to Dr. Sun. I am still completely at peace with this doctor, his skill and his ability to treat Nathaniel. I know God lead us to Dr. Sun for a reason.

 

So you think the diagnosis was hard? The treatment plan is even harder to get my mind around!!

 

Treatment Plan:

*Surgery is necessary, these cysts MUST be dealt with, we can't ignore them.
 

*Another round of MRIs when we go up to check his brain for cysts.
 

*There is so much to be done that one surgery won't cover it. It will take multiple days to get it all done. At this time the doctor thinks around 30 hours of surgery. (can you wrap your mind around that?? 30 hours? I can't, and I have been trying for a few days now!)
 

*The surgery comes with many risks, after all they are working with the nerves in his spinal cord! There is a slim possibility that he will come out of all of this a full time chair user. And there is a great chance of infection in these areas.
 

*They will have to lift about 6 of his vertebra to get to the cysts.
 

*They will have to cut further up his back than his scar currently is, he will probably end up with a scar to his should blades. (OUCH, kill this momma's heart! Can't I take the pain for him???)
 

*Due to his allergic reaction to anesthesia we are looking at all options, including the option to put him in a medically induced coma while the work is done. (another blow to my heart.)
 

*Recovery time will be intense and long.
 

*This will all be up in Oakland.

 

I don't know about you, but this just knocked me to my knees.

And I haven't really got up yet.

 I am overwhelmed.

I am scared.

I hurt for my little boy.

 And I just can't even function right yet.

 I am in a complete daze, begging God for his mercy, strength and peace every second.

 

And the part that is KILLING me most? We don't have a surgery date yet! So somehow I have to go on living with this hanging over us. Way harder than it sounds! My control freak nature just wants the DATE so I can PLAN. But God will give that to me when he is ready. I must pull up my big girl panties and put one foot in front of the other, even if it feels like I am walking in quick sand!

 

SO MANY of you have asked how you can help, and to be honest, right now I am overwhelmed!

Overwhelmed by your generosity and caring.

Overwhelmed with what needs done.

Sort of even overwhelmed by just getting out of bed in the morning!

 

But a dear friend recommended a site where I can put in our needs on a calendar and you guys can sign up. I don't have to coordinate anything and still needs will get met... I like the idea, so I have set it up. Right now it isn't much because I don't know yet. I know it will get fuller as things start moving and I need more help with Audrey and life in general. So I am going to encourage you to go visit it now, sign up to be a member and check it out. Not everyone will be called to help, but if you are there are opportunities there.

 

Here is the link
Nathaniel's Helping Hands - Tell a Friend: Nathaniel's Helping Hands
 

 

The other HUGE thing you can do is join us in prayer! Right now our prayer requests are:

 

*Peace in the journey! The kids only know that we have found what is wrong with Nathaniel and are going to fix it, none of the other details, but they are still feeling high levels of stress, and mine is over the top and out the window. I am continually begging God for peace every second.

 

*Wisdom and guidance for the doctors, nurses and medical professionals! I am already covering them in prayer daily and would love any to join me. Nathaniel's main surgeon will be Dr. Sun.

 

*Protection for Nathaniel's brain. I am praying NO cysts are in there, nor would any make their way in there before treatment.

 

*And for healing. God is the GREATEST physician out there, He can do miracles, and I am begging him for some!

 

Thank you for taking this journey with us. I know your prayers, thoughts and help have made it possible to carry on. It takes a village sometimes, and this is one of those times in our journey! We are so blessed by our village near and far.

 

 

 

 

 

 

 

 

 



What Does Spina Bifida Look Like? SBA Day 30

It is OCTOBER!!!!

You know what that means, right???

SPINA BIFIDA AWARENESS MONTH is HERE!!!!

This year words are too much for me.

Plus they say pictures are worth a 1000 words, right?

So THIS is what Spina Bifida looks like:

All the way from the UK!

Destiny Angel
Age 10 months

And today's Double Dose is.....

Kayla

Age 25 Years Old

*Would you like to participate in my Spina Bifida Awareness posts?? Just email me some pictures of yourself (or your child), you name and age and I will do the rest! Send all information to simplysoares@att.net !*

What Does Spina Bifida Look Like? SBA Day 29

It is OCTOBER!!!!

You know what that means, right???

SPINA BIFIDA AWARENESS MONTH is HERE!!!!

This year words are too much for me.

Plus they say pictures are worth a 1000 words, right?

So THIS is what Spina Bifida looks like:

Kaylin
Age 3 (almost 4!)

And for today's Double Dose:

Tucker

Age 4

*Would you like to participate in my Spina Bifida Awareness posts?? Just email me some pictures of yourself (or your child), you name and age and I will do the rest! Send all information to simplysoares@att.net !*

Need Age What Does Spina Bifida Look Like? Day 28

It is OCTOBER!!!!

You know what that means, right???

SPINA BIFIDA AWARENESS MONTH is HERE!!!!

This year words are too much for me.

Plus they say pictures are worth a 1000 words, right?

So THIS is what Spina Bifida looks like:

Charlie
Age 16

And today we get another DOUBLE DOSE of friendly faces!

Taylor

18 months!

And today is Taylor's super mommy's birthday, so let's all take a second and wish Stephanie a big ole happy birthday!

*Would you like to participate in my Spina Bifida Awareness posts?? Just email me some pictures of yourself (or your child), you name and age and I will do the rest! Send all information to simplysoares@att.net !*

What Does Spina Bifida Look Like? SBA Day 27

It is OCTOBER!!!!

You know what that means, right???

SPINA BIFIDA AWARENESS MONTH is HERE!!!!

This year words are too much for me.

Plus they say pictures are worth a 1000 words, right?

So THIS is what Spina Bifida looks like:

Jaxson Rose

Age: 3.5 months

And for Today's Double Dose

Amanda

Age 22

*Would you like to participate in my Spina Bifida Awareness posts?? Just email me some pictures of yourself (or your child), you name and age and I will do the rest! Send all information to simplysoares@att.net !*

What Does Spina Bifida Look Like? SBA Day 26

It is OCTOBER!!!!

You know what that means, right???

SPINA BIFIDA AWARENESS MONTH is HERE!!!!

This year words are too much for me.

Plus they say pictures are worth a 1000 words, right?

So THIS is what Spina Bifida looks like:

Chloe

I strive to be REAL here on my blog. And while there are MANY people who have Spina Bifida and have a great lives, sometimes the journey is harder and the road not what we hoped for. Dear Chloe had a HARD road, and she has grown her wings to join in th heavenly chiors, but she touch SO MANY lives with her short life. Her family and their journey will always be near and dear to my heart. Even in the short time Chloe was with us, she taught lessons to people across the globe. Chloe's life, while short, was NOT wasted! And I KNOW that she is dancing in the streets of heaven with her Heavenly Father right now!

*Would you like to participate in my Spina Bifida Awareness posts?? Just email me some pictures of yourself (or your child), you name and age and I will do the rest! Send all information to simplysoares@att.net !*

What Does Spina Bifida Look Like? SBA Day 25

It is OCTOBER!!!!

You know what that means, right???

SPINA BIFIDA AWARENESS MONTH is HERE!!!!

This year words are too much for me.

Plus they say pictures are worth a 1000 words, right?

So THIS is what Spina Bifida looks like:

Annabeth

Age 10 months

And today we get a DOUBLE DOSE of Spina Bifida Again!

Please Meet:

Kevin

Age 40

*Would you like to participate in my Spina Bifida Awareness posts?? Just email me some pictures of yourself (or your child), you name and age and I will do the rest! Send all information to simplysoares@att.net !*

What Does Spina Bifida Look Like?? SBA Day 24

It is OCTOBER!!!!

You know what that means, right???

SPINA BIFIDA AWARENESS MONTH is HERE!!!!

This year words are too much for me.

Plus they say pictures are worth a 1000 words, right?

So THIS is what Spina Bifida looks like:

Michelle

Age 41

And today we get a DOUBLE DOSE of Spina Bifida! Please Meet:

Laura

Age 2

*Would you like to participate in my Spina Bifida Awareness posts?? Just email me some pictures of yourself (or your child), you name and age and I will do the rest! Send all information to simplysoares@att.net !*

What Does Spina Bifida Look Like? SBA Day 23

It is OCTOBER!!!!

You know what that means, right???

SPINA BIFIDA AWARENESS MONTH is HERE!!!!

This year words are too much for me.

Plus they say pictures are worth a 1000 words, right?

So THIS is what Spina Bifida looks like:

Jackson
Age 16 months

And today we get a DOUBLE DOSE of cuteness:

Charlotte

Age 2.5 years

Fellow Fetal Surgery Baby!

*Would you like to participate in my Spina Bifida Awareness posts?? Just email me some pictures of yourself (or your child), you name and age and I will do the rest! Send all information to simplysoares@att.net !*

What Does Spina Bifida Look Like? SBA Day 22

It is OCTOBER!!!!

You know what that means, right???

SPINA BIFIDA AWARENESS MONTH is HERE!!!!

This year words are too much for me.

Plus they say pictures are worth a 1000 words, right?

So THIS is what Spina Bifida looks like:

Amanda

AKA "Ms. Adventure!"

Age 38

And because Amanda gave me so many great quotes to choose from I made her a special treat too:

*Would you like to participate in my Spina Bifida Awareness posts?? Just email me some pictures of yourself (or your child), you name and age and I will do the rest! Send all information to simplysoares@att.net !*

What Does Spina Bifida Look Like? SBA Day 21

It is OCTOBER!!!!

You know what that means, right???

SPINA BIFIDA AWARENESS MONTH is HERE!!!!

This year words are too much for me.

Plus they say pictures are worth a 1000 words, right?

So THIS is what Spina Bifida looks like:

Elizabeth

Age 33

*Would you like to participate in my Spina Bifida Awareness posts?? Just email me some pictures of yourself (or your child), you name and age and I will do the rest! Send all information to simplysoares@att.net !*

What Does Spina Bifida Look Like? SBA Day 20

It is OCTOBER!!!!

You know what that means, right???

SPINA BIFIDA AWARENESS MONTH is HERE!!!!

This year words are too much for me.

Plus they say pictures are worth a 1000 words, right?

So THIS is what Spina Bifida looks like:

Another of our LOCAL friends, Evan!
Age 25

*Would you like to participate in my Spina Bifida Awareness posts?? Just email me some pictures of yourself (or your child), you name and age and I will do the rest! Send all information to simplysoares@att.net !*

What Does Spina Bifida Look Like? SBA Day 19

It is OCTOBER!!!!

You know what that means, right???

SPINA BIFIDA AWARENESS MONTH is HERE!!!!

This year words are too much for me.

Plus they say pictures are worth a 1000 words, right?

So THIS is what Spina Bifida looks like:

Easton
Age 21 Months

*Would you like to participate in my Spina Bifida Awareness posts?? Just email me some pictures of yourself (or your child), you name and age and I will do the rest! Send all information to simplysoares@att.net !*

What Does Spina Bifida Look Like? SBA Day 18

It is OCTOBER!!!!

You know what that means, right???

SPINA BIFIDA AWARENESS MONTH is HERE!!!!

This year words are too much for me.

Plus they say pictures are worth a 1000 words, right?

So THIS is what Spina Bifida looks like:

This is our LOCAL friend, Jessie!
Age 9

Jessie would also like to share with you a link to a new Special Abilities Dance and Music Program here in our County! If you are interested, please check it out HERE!

*Would you like to participate in my Spina Bifida Awareness posts?? Just email me some pictures of yourself (or your child), you name and age and I will do the rest! Send all information to simplysoares@att.net !*

What Does Spina Bifida Look Like? SBA Day 17

It is OCTOBER!!!!

You know what that means, right???

SPINA BIFIDA AWARENESS MONTH is HERE!!!!

This year words are too much for me.

Plus they say pictures are worth a 1000 words, right?

So THIS is what Spina Bifida looks like:

Logan
Age 3 TODAY!!!!

Happy Birthday Sweet Logan!!!

*Would you like to participate in my Spina Bifida Awareness posts?? Just email me some pictures of yourself (or your child), you name and age and I will do the rest! Send all information to simplysoares@att.net !*

What Does Spina Bifida Look Like? SBA Day 16

It is OCTOBER!!!!

You know what that means, right???

SPINA BIFIDA AWARENESS MONTH is HERE!!!!

This year words are too much for me.

Plus they say pictures are worth a 1000 words, right?

So THIS is what Spina Bifida looks like:

Ciarlo
Age 2 Years Old

*Ciarlo is actually having surgery today to get some ear tubes in, so if you are a praying friend, please say a little prayer for this sweet little boy today!*

*Would you like to participate in my Spina Bifida Awareness posts?? Just email me some pictures of yourself (or your child), you name and age and I will do the rest! Send all information to simplysoares@att.net !*

What Does Spina Bifida Look Like?? SBA Day 15

It is OCTOBER!!!!

You know what that means, right???

SPINA BIFIDA AWARENESS MONTH is HERE!!!!

This year words are too much for me.

Plus they say pictures are worth a 1000 words, right?

So THIS is what Spina Bifida looks like:

Abi
Age 3 Years Old

*Would you like to participate in my Spina Bifida Awareness posts?? Just email me some pictures of yourself (or your child), you name and age and I will do the rest! Send all information to simplysoares@att.net !*

What Does Spina Bifida Look Like? SBA Day 14

It is OCTOBER!!!!

You know what that means, right???

SPINA BIFIDA AWARENESS MONTH is HERE!!!!

This year words are too much for me.

Plus they say pictures are worth a 1000 words, right?

So THIS is what Spina Bifida looks like:

Tanner
Age 3 years old

*Would you like to participate in my Spina Bifida Awareness posts?? Just email me some pictures of yourself (or your child), you name and age and I will do the rest! Send all information to simplysoares@att.net !*

What Does Spina Bifida Look Like? SBA Day 13

It is OCTOBER!!!!

You know what that means, right???

SPINA BIFIDA AWARENESS MONTH is HERE!!!!

This year words are too much for me.

Plus they say pictures are worth a 1000 words, right?

So THIS is what Spina Bifida looks like:

Magan
Age 39

*Would you like to participate in my Spina Bifida Awareness posts?? Just email me some pictures of yourself (or your child), you name and age and I will do the rest! Send all information to simplysoares@att.net !*