Saturday, December 12, 2009

Welcome to Holland

LOVE this wonderful example!!!

by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome To Holland".

"Holland?!?" you say, "What do you mean "Holland"??? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy"

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around…and you begin to notice that Holland has windmills...Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy...and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes that's where I was supposed to go. That's what I had planned".

And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very significant loss.

But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things...about Holland.

Spina Bifida updates and PHOTOGRAPHY!!!

So it has been a LONG time since I have updated and last time we were going in for his Spinal MRI. Well what we found out was not very good news. Carter has what is called a Syrinx down the entire length of his Spinal Column. (http://en.wikipedia.org/wiki/Syringomyelia). When his shunt wasn't working his extra spinal fluid builds in to the syrinx and compresses on the nerves in his spine, which can cause like a temporary paralysis. This is why he wasn't moving his legs very much. This is something that will not go away and we have to watch him like a HAWK to make sure and pick up if we do not feel that his shunt is working. But for now his shunt is working, THANK GOODNESS!! We also went to see a new Dr. Dr. Byrd and opthamologist so that she can measure and see if his optic nerve is being affected when his shunt isn't working. This is one of the reason's that Dr. Boop didn't think it was working and sent us for the MRI, bc his left eye was turning in. Well when we went to see Dr. Byrd his shunt was working and she said his Optic nerve looked PERFECT!! We are so thankful for every bit of good news we get. We went back to see Dr. Boop this week and he said everything looked good for now and we don't have to come back for 4 months. This is Def. the longest we have gone, the longest before then was 6 weeks. This makes me very Happy and nervous at the same time! Anyways enough updates on that.
So you ask what have Carter and I been doing Lately, well Photography Sessions of course!! Here are just some that I will include, he is getting so big!
Well Carter is waking up now, I will update with his 9 month stats Later! GTG


Sunday, October 4, 2009

Preparing for the next two days....

So the next two days we will learn a lot as far as how Carter's shunt is working. Tomorrow we meet with a Pediatric Opthamologist to see if Carter has a sixth nerve palsy. ( Cranial nerve six supplies the lateral rectus muscle allowing for outward (abduction) eye movement. A sixth nerve palsy, also known as abducens nerve palsy, is a neurological defect resulting from an impaired sixth nerve or the nucleus that controls it. This may result in horizontal double vision (diplopia) with in turning of the eye and decreased lateral movement. ) This can be caused by too much pressure in the brain, if his shunt is not working correctly. At our appt. with Dr. Boop 2 weeks ago he saw that Carter's left eye was turning in and his fontanel buldging.
And on Tuesday morning we will learn the results of the spinal MRI that Carter had done last Thursday. And Based on these two results will determine if he has to have surgery again. We are desparatly hoping that the results are good and surgery will not be necessary, although it seems as though he will need it. These are a couple of pics from the MRI. Poor thing was so tired and hungry. He did not eat bw 8-3!! That is a long time for him he usually eats every three hours during the day! But he did great!

Well yesterday we took our little man to the zoo for the first time. We also bought a zoo membership, so I am sure we will be making many more trips!! Carter did really well, he enjoyed watching the turtles and fish swim he also liked the polar bear and just being outside and people watching. These are a couple of my Fav. pics:
It looks like that Polar bear is starring at C, like he wants him for dinner!! Yikes!
And on a Really exciting note, Carter has been lifting and kicking his legs a lot the last 2 days!!! He has never really done this so we are VERY excited about this!!! Oh and are those not some adorable baby legs!! And I don't know if you can tell in these pics, but his hair is growing at rapid paces!! And it stands up everywhere!! It is sooo cute!!


Tuesday, September 29, 2009

Here is a poem that was sent to me today from a very dear friend, Thank you so much Tiffany!!
(Although Carter will definately Laugh and Play, actually he already does), but I LOVE the meaning of this poem!


A meeting was held quite far from earth,
It’s time again for another birth.
Said the angels to the Lord above;

This special child will need much love
His progress may be very slow,
Accomplishments he may not show.
And he’ll require extra care,
From the folks he meets down there,

He may not run or laugh or play,
His thoughts may seem quite far away.
In many ways he won’t adapt, and he’ll
Be known as handicapped.

So let’s be careful where he is sent, we want
His life to be content.

Please, Lord, find the good friends who, will
Do a special job for you.

They will not realize it right away, the leading
Role they’re asked to play.
But with this child sent from above, comes
Stronger faith and richer love.
And soon they will know the privileges given,
In caring for their gift from Heaven.
Their precious charge, so meek and mild, in

Heaven’s very special child.

Monday, September 28, 2009

Carter Man Update

Post Copied from Carter's Caring Bridge Page:

Sorry we have not updated in a LONG time. For the most part Carter has been doing Wonderful over the past 3 months. His little personality is coming out more and more every day and he has been talking up a storm! We now have a new Physical Therapist & she is great!!! She has to remind me that what Carter is doing now is "normal" for him, and his "normal" is not the same as everyone else's "normal". At this point he has wonderful head control, he rolls from his tummy to his back and he is sooooooo close to rolling from his back to his tummy. He also can sit for short times unassisted & loves playing with toys especially anything that lights up and makes noise.

Have I mentioned that he loves to eat and I am enjoying making all of his fruits & veggies. I have been steaming the fruits and veggies, and then pureeing them in the food processor and freezing them in ice cube trays & he LOVES it!!

I can not believe that our baby is already 7 months old!! I get very sad thinking about it!! People always would tell me to cherish all the moments, bc they go too fast and I don't think that you truly understand that until you are a parent! At his 6 month check-up he weighed 16-12 and was 25.5 inches. He has been sleeping through the night for several months (Yay!)
Well on a not so great note, we went to see Carter's Neurosurgeon for a routine check up and he doesn't think that Carter's shunt is working like it should be, we were sent for a CT that day and they also scheduled a MRI. We will be having the MRI this Wednesday and we are desperately hoping that it is working and that he will not need surgery, although it seemed that Dr. Boop was leaning more towards needing the surgery. We will know more once the results are back. Please be thinking of Carter this Wednesday, as he has to be sedated for the MRI and can not eat for 4 hours beforehand(which to him will be the bigger issue, that boy LOVES to eat!)
And on a happy note, I have entered my Precious boy into a Baby Gap Casting call. I thought it would be something fun to do and it would be awesome if he won! I don't think that any special needs/ Spina Bifida baby has ever been the picture of BabyGap & of course I think that he is the Cutest baby in the WHOLE world!!! So we would appreciate your vote if you can. All you have to do is register (it takes about 2 min and you can check the things at the bottom so they don't send you additional emails) and you can vote on each picture once every day. Here is the website: http://family.go.com/gapcastingcall/entries/CourtSmith0602/
We will try to update when we here the results of the MRI and when we know if Carter will need surgery. Thanks in advance for everyone thinking about our precious son!!
Oh and I LOVE this pic, but he will kill me for it one day, LOL!!


Monday, August 3, 2009

We have a new PT!!!

So today we met with Carter's new physical therapist!!! She was AMAZING!! She was so knowledgeable and I think she is going to be wonderful for us!! She even gave us homework, which we were very excited about! After nursing school I never thought that I would ever say "I want homework!" But it also kinda pissed me off today when we left thinking about the type of care Carter was receiving from our other PT. I knew she wasn't the greatest but I never knew she was that bad until today. It was like opposite ends of the spectrum! Carter did really well too! The main things that we are going to be working on right now is head control, sitting, finding his feet, and his right foot. If you ask me I think his little piggies are PERFECT!!

Wednesday, July 8, 2009

Carter Month by Month

Gosh he has gotten so big so fast!!