Thursday, February 12, 2009

Introductions ...Step 4

Introductions... Step 4
This is my Prince Nathaniel! I will try not to make this volumes long.... but Nathaniel has a very unique, very long story, so we will see what happens! Nathaniel is my wonderful 8 year old son and there are many great things about him. Part of what defines Nathaniel is also what makes him very special in many ways.... you see Nathaniel was born with a congenital birth defect commonly known as Spina Bifida.

taken in the NICU when Nathaniel was 4 days old!
Nathaniel's story actually begins LONG before he was born! He has an entire scrapbook of his life before his birthday! When I was just 16 weeks pregnant with Nathaniel doctors told me that he had a birth defect commonly know as Spina Bifida. I feel that our family was blessed to know this early on because it gave us choices and power. At the time of Nathaniel's birth most doctors were preaching termination to us, by Mark & I couldn't and wouldn't consider that as an option. After loosing our first daughter, Taylor, at birth there was NO WAY we could terminate this pregnancy. Plus our pastors kept telling us that God knew what He was doing when he gave us Nathaniel. I am pretty sure God was confusing me with a much stronger woman at the time, but I love my son to death! At the time there were a very few hospitals starting an experimental surgery for children with Spina Bifida done in the mother's womb many weeks before the child is born. With much prayer and studying we decided to give this experimental procedure a try. When I was just 21 weeks pregnant with Nathaniel, a team of many exceptional doctors at University of California San Francisco Medical Center operated on Nathaniel and myself. At the time Nathaniel was less that one pound and one of the doctors compared his size to the of a Snickers bar! Through this new procedure, the doctors were able to go in intrauterine and close Nathaniel's lesions caused by Spina Bifida. Nathaniel was born at 32 weeks gestation (8 weeks premature) weighing 3 lbs. 15 oz. He was so tiny and already had scars on his little body, but he was a strong willed child and his will was for life to the fullest!

Nathaniel in his short casts, he wore these for the first year of his life, two weeks on and two weeks off!

Being born so early only added to the adventure of Nathaniel's life. His first year was a year of many changes for Mark & I, as we learned how to parent a special needs child, and all about the challenges that came with that! During his first year we were taking trips north to San Francisco on a regular basis, as often as every 6 weeks. We had monthly pediatrician appointments, when we were lucky! Often it was more often than that. Nathaniel started therapy when he was only 6 weeks old, and we had those appointments as often as twice a week! We also learned just how many doctors it takes for one child withe Spina Bifida! We had Neurologist at UCSF, Urologist also at UCSF, Pediatricians, both at home and UCSF, Orthopedist in Ventura and UCSF, Physical therapist, both at home and UCSF, Occupational Therapists, again at home and UCSF, and of course all the support teams. We are SO BLESSED to live in a country where we have such wonderful health care available to us!!

the day of Nathaniel's first birthday...and his new casts!
After a full year of casts on for two weeks, and then off for two weeks, Mark & I decided to give Nathaniel the gift of straight feet for his first birthday! On the day of his first Birthday he underwent surgery to straighten his feet out. He went on to wear full leg casts on his legs for the next 6-8 weeks! He had JUST learned to crawl when this happened.... so he promptly forgot how to crawl with these huge casts on! He would get around by sitting up on his little bottom and using one arm behind him to push himself around where ever he went! So creative, and just a sample of what was to come in years ahead. Nathaniel does NOT let his disability slow him down at all!

Nathaniel in his para podium walker

When Nathaniel was diagnosed we were told that he would never walk on his own. For the first two years of his life this was true. In his second year we started using adaptive equipment to teach him what it was like to see the world from an upright position. This para podium walker was his first taste of "standing" on his own. Through the years Nathaniel has used many adaptive devices such as this walker, a push walker, a reverse walker and arm crutches, all in addition to his wheelchair that he has used since the time he was 2!

When Nathaniel was 3 1/2 years old God answered one of our most heartfelt prayer, and Nathaniel began to walk on HIS OWN with NO ASSITIVE DEVICES!!! Oh our Lord is a mightily and faithful Lord!! What a blessing it is to watch this spirited little boy walk and run around when doctors told us that would never happen!!

By the time that Nathaniel entered school at 4 things seemed to get a bit more stable. Or at least we were learning what our new *normal* looks like :) Nathaniel began school in a class for disabled children, and eventually transitioned to our local elementary school in a special day class. Once we were able to have him at the local school he began to get involved in local activities too!

Nov 2007

Through the last 8 years life has not been without challenges, but it also hasn't been without victories! Nathaniel has many of the traditional complications related to Spina Bifida, such as bowel and bladder complications, reduced gross and fine motor skills, and attention and behavioral issues. But he is also blessed with the ability to walk unassisted, and escaped the need for a shunt, which I truly dreaded. Nathaniel is able to run and play sports, which is a blessing considering his love of them :)

Nathaniel at TOPSoccer in Oct 2008

And that is your little introduction to Prince Nathaniel!


The Clan Piccini said...

Oh my gosh, G!!! Is that THIS year's picture?!? Nathaniel has gotten so big! He looks so much older :o( :o)

Gretchen said...

yep.. and so much skinnier too! My little mans is growing way up!

Katja mit Fabian und Florian said...

Hi from Germany,

I found your blog by chance.

The story of Nathaniel gives hope for all parents with special needs kids.

My son, Fabian, age 10, is wheelchair bound since he fell from a tree two years ago.

It was a very hard time for all of us after Fabians accident. The moment when the doctor told us, that Fabian is paralyzed and the moment when we must told him that he never walk again, was so terrible. Especially terrible was the day, when Fabian got his first wheelchair. I still cry when I saw him sitting in his wheelchair at the first time.

But Fabian is so brave! I am so proud of him.

Since his accident Fabian visits a school for special needs kids. All other kids in his class are disabled, too. The most kids must use a wheelchair, tree kids can walk with a walker / quad canes.

Every Saturday Fabian visits a sport group for children in wheelchairs. Two hours they play together in their wheelchairs. It is so funny for the kids.

Two month ago he got a new “Spidermann”-wheelchair.

If you are interest I will send you some photos of him in his new wheelchair.

I will be glad about a short answer mail.

Best wishes Katja