Child of the Month: August 2013

August 2013: Joshua

yearofthedragon.3Becoming a parent of a preemie transformed who I am at my core. Seemingly everything was taken out of my control; my impossibly tiny child was surgically removed from me 14 weeks early.  It was the first time I heard the term, “micro-preemie.” Joshua was born into this world in critical condition and remained so for months. Nothing in my motherhood bag of tricks could ever prepare me for this terrifying journey we were embarking upon.

I was finally able to see my Joshie 2 days after he was born. Every single part of Joshua was underdeveloped and fragile. At first sight, my instinct was to wrap him in my arms and protect him and yet, caressing or touching him gently would have physically hurt him.  It would be 6 days before he felt the love and warmth of being held skin to skin with his mother.

When the doctors met with David & I about Joshua, we were told there was the potential for bleeding in the brain (which Joshua did develop), a hole in his heart, respiratory distress and failure, life support, being deaf and/or blind, cerebral palsy, developmental delays, autism, seizures, severe developmental delays, spending his life in a wheel chair, being ventilator dependent, with severe cerebral palsy…should he survive.

Throughout our journey, I was so proud that my son continued to fight. Joshua was fighting a battle that I couldn’t fight for him. He was fighting and I needed to be his cheerleader. I needed to advocate for him, pray for him, and support him. I needed to pump, needed to be strong, and needed, above all, to believe that he was going to come home.

Joshua spent 129 days in the NICU. During his hospital stay he was diagnosed with metabolic acidosis, respiratory distress, Patent Ductus Arteriosus, anemia, IVH grade IV & III (brain bleed), premature atrial contractions, abnormal newborn screen, apnea of prematurity, at risk for retinopathy of prematurity (ROP), hyperbilirubinemia, umbilical hernia and he had a gastrostomy tube PEG placement surgery.

Joshua is now home with his family, yet the intense need for us to do everything we can to advocate for and support our son has not wavered. Joshua’s success and development is all based now on preventative care.  In collaboration with UCP and Joshua’s wonderful Child Development Specialist, Maria Montano, we feel that we are on the right track in providing our son with the best care possible.  On a weekly basis, Maria provides therapy, reasurrance and positivity…all things both Joshua and I need, and because Joshua is assessed on a weekly basis, any areas of concern are brought to light and any changes noted in Joshua’s development are addressed expeditiously. Due to the amazing support system of Joshua’s family and dedicated specialists like Maria, we are finding success in helping Joshua reach his potential.

Our ship is definitely on a different course than what we ever imagined, but it has allowed us to see the world in a whole new light. I’m extremely proud of the way we have sailed our ship thus far. Most of all, I’m most proud of our Joshua. He held on tight enough even through the worst of the storm until we found our way.

To follow Joshua’s journey from his early start to his current progress, please click on this link:  http://www.joshuadrake.info/

If you would like to make a gift to support the services that are helping Joshua and his family, please click here or contact Elizabeth Eckman at eeckman@ucp-oc.org  for more information.

Story & experience written by Jenny Reyes (Joshua’s proud momma)

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Child of the Month: July

July 2013: Kiaan

KiaanJuly’s Child of the Month is a very special boy at UCP-OC for many reasons, and we wanted to celebrate him on his birthday month!

Kiaan was born on July 4th, and he just celebrated his third birthday! Kiaan is a micro preemie, being born 15 weeks early. The first 4 months of his life was spent in the NICU with his family by his side. With every day having new fears and uncertainties, Kiaan’s parents Neha and Jesse consider him their miracle baby.

Being born on a day with fireworks must play into his playful personality. Countless times his mother Neha has caught him “just being playful” teasing the dog at home. Luckily we haven’t experienced his cunning tricks during therapy yet! He couples his teasing with his heart-warming smile; which normally works pretty well for him. Despite all his hard work in the past 3 years he is one of the happiest children I have seen, although that is not what caught my eye; it is his deep concern for others that truly impresses me. Though he has gone through so much he is constantly concerned with the children around him and will try to comfort a distressed friend in his own special way.

At nine months-old, Kiaan’s parents began to see milestones being missed and brought him to United Cerebral Palsy of Orange County. One of the first services they used was Moira’s Let’s Grow class. Let’s Grow is a developmental play group for parents and their infants/toddlers (birth to 36 months). The class works on helping children reach their developmental milestones, foster growth and socialization skills, while educating parents. Kiaan also comes for occupational therapy, physical therapy and now speech therapy at UCP-OC.

Kiaan’s Occupational Therapist, Jane, incorporated sensory/tactile play with various textured toys as well as bean and rice bins to address Kiaan’s tactile defensiveness and textural aversions.  Feeding was a challenge for Kiaan and during sessions, Jane slowly introduced different food textures to encourage interaction with foods and eventually eating those foods without aversions.  Kiaan made good progress and at the age of 2 and a half, Kiaan was able to join his parents at the dinner table and eat table foods, just like his parents!

Currently, his speech therapists are working on introducing new sounds and words to his vocabulary. Neha is anxiously awaiting him to learn the coveted  word “mommy.” A word we hope he learns soon!

Family with KiaanNeha knows that Kiaan is working hard to meet developmental goals with the therapists at UCP-OC, giving their family a sense of normalcy.

“UCP-OC is our security blanket. The therapists jump at our concerns and make sure Kiaan is progressing like he should. Kiaan doesn’t know he is working, it is all play time with his friends to him. We very grateful and blessed that we can bring our son to UCP-OC. The journey is easier and doesn’t feel like we are on a roller coaster of emotions every day.” –Neha

A VERY Happy Third Birthday to our friend Kiaan! 

Neha and Jesse are one of our many grateful families that have given back to UCP-OC in many different ways. Neha has joined one of our guilds raising funds, spreading awareness and running the silent auction at the Life Without Limits Gala. We thank Neha & Jesse for their continued support and donations over the years in gratitude for the role UCP-OC has played in their lives.

If you would like to make a gift to support the services that are helping Kiaan and his family, please click here or contact Elizabeth Eckman at eeckman@ucp-oc.org  for more information.

Written by: Elizabeth Eckman