Gideon James' Journey

I received this as a forwarded email earlier today. It's so good not to share. I'm sure not only families with Blue Roses like ours could appreciate this but also the Dandelions out there who only need a reminder to, every now and then, stop and smell the roses, especially the rare and very special ones :) == BLUE ROSES Why do I always have to be the one that starts to do laundry and there's no detergent?  Well, I guess it was time for me to do my store run, which included light bulbs, paper towels, trash bags and Clorox. So off I go. I scurried around the store, gathered up my goodies, and headed for the checkout counter only to be blocked in the narrow aisle by a young man that appeared to be about sixteen-years-old. I wasn't in a hurry, so I patiently waited for the boy to realize that I was there. This was when he waved his hands excitedly in the air and declared in a loud voice, "Mommy, I'm over here." photo borrowed from rosepi...

Nope, James is not having his hair permed :p He had a seizure episode last August 4 when our pedia-neuro was unfortunately out of the country at the time. Fortunately, we were referred by my sister to my nephew's neuro who advised us to have James undergo an Electro Encephalogram (EEG) to check brain activity. Since it was about 3-4 years since James' last procedure, hubby and I were surprised to see that the graphs are now being done digitally whereas a few years ago, graphs were "written" on pages and pages of large pieces of continuous paper.

One of James ' favorite activities is being in the water. Here are some shots taken in my sister's family's pool in Ayala Alabang ...

After more than 21/2 years, James underwent another procedure to replace his G-tube with a Bard button . No more long tube! (Big sigh of relief).  Contents of a Bard kit  Prepped for the procedure

Finally! After bearing the discomfort of having an NGT for feeding for more than 3 years, James finally got his g-tube on June 26, 2005. The hospital costs and doctors' fees were steep but with the help of family and friends, we were able to pool enough money for James to undergo the surgery. Happy baby who's now NGT-free!

It took us (mom and dad) a month (and thousands of pesos later) of going to and from the hospital to have James' NGT (nasogastric tube) inserted in the ER before we mustered the courage to attempt learning how to insert the scary 24 inch tube into James' nose straight to his stomach.  Notice Daddy and Mommy 's MacGyverisms : -- clipping the hard round core of a roll of electrical tape to the wall so that the 60cc syringe can be hanged instead of tying up hands that are also pouring the formula during feeding

I am very thankful to have found this in another parent's website. I feel exactly the same way as Emily and I hope that this entry could somehow help you guys understand, and maybe empathize, with what parents like us are going through. I can honestly say it is a privilege to be entrusted by God with someone as special as my son. It has been a wonderful journey for our family and we'll keep on finding ways to look at the positive sides as we continue to have fun with our James :)  == Welcome To Holland 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 wonderful plans. The coliseum, Michelangelo's David. The gondolas of Venice. Yo...

Hi everyone! This site is created to chronicle the life of Gideon James Floresca , born a preemie on September 18, 1997. He has been diagnosed with global psychomotor delay and has the spastic quadriplegic type of cerebral palsy .  Look how small James was when he was born!  He has been "eating" via a feeding tube since he was five due to failure to thrive. From an NGT (naso-gastric tube) that we used for more than 3 years, he underwent surgery in 2005 so a gastrostomy tube can be placed directly in his tummy. In March 2008, we were able to afford a Bard button which made feeding him so much easier. He's currently 100% tube-fed with complete food formula. James at 4 months old It is our hope that his story will serve to inspire and encourage even families with "normal" children. Join us in our continuous journey of hope :)