December 2011: Granden
Granden, like many of our children, is thriving due to UCP-OC’s Early Intervention. As the video says, Granden has Jeune Syndrome. Juene Syndrome affects the growth of long bones, your limbs and ribs, resulting with a dwarfism in the limbs. With daunting odds, there was a point in time his parents feared that they would not see Granden reach his second birthday. Granden is more than his disability, he is a joy to be around and brings entertainment to all that come in contact with him. Just as Geri Kate says in the video, he has a certain energy about him. Granden has stolen all of our hearts at UCP-OC and we have loved watching him grow and excel in his therapy sessions at our Life Without Limits Therapy Center.
This year Granden has celebrated his birthday, and is cruising towards his third birthday entertaining us along the way!
We thank you all for your support of UCP-OC throughout the years, and ask that you please remember us in your year-end giving this year. Every gift makes a difference, just $15 could cover the cost of art supplies for a child in our art class!
You can see more pictures of Granden, along with make a donation at www.ucp-oc.org/getinvolved/granden.
November 2011: Dylan
The month November has many important days such as Thanksgiving…. and Black Friday,and its our Child of the Month, Dylan’s, birthday! Dylan Delgadillo was born prematurely on 11/05/09, arriving about 15 weeks early and weighing only 900 grams (under 2lbs.). He needed to have a prolonged hospital stay as he gained weight and strength, and needed the assistance of a ventilator to breathe. His young parents, Brian and Melanie have struggled with Dylan’s situation – Brian works full-time and Melanie was a student who now stays home to care for Dylan. This young family has moved to Huntington Beach to co-reside with the grandmother in order to meet all their needs.
At 8 months-old, Dylan was responding as a 4 month-old, which as considered within normal limits due to his prematurity – but he was clearly at high-risk for developmental delay. Due to stricter eligibility criteria form the State of California, he did not qualify for the State’s Early Start program, however he was entered into the Prevention Plan and began Let’s Grow classes at UCP-OC with Moira, one of our highly experienced Physical therapists. At 17 months-old (13 months adjusted), Dylan was not walking and Moira suggested that he be fitted with orthotics to give him greater stability.
In April, he received his orthotics, funded through United Way’s grant, and within 1 week Dylan began to walk; within 2 weeks he was taking steps on his own; and within 3 weeks was walking through his home independently. By mid-June Dylan was practicing going up/down stairs.
October 2011: Alexa
Alexa is an 18 month-old with the cutest pony-tails on the top of her head. Her smile melts your heart and you cannot help but smile back! Even better, Alexa knows exactly what to do when a camera is present. Lights, camera, action…she’s a star! Alexa even knows how to perform behind a camera too! While I was taking pictures of her, she took my camera and started taking pictures of herself, simply adorable.
Alexa has hypotonia, which means she has low muscle tone and hyper extension in her limbs. At six months the family saw that she had trouble bearing weight, and went to see a doctor. After many tests and a diagnosis, Dr. Lin suggested the family come to UCP-OC. Her mother only says great things of our Therapy Center and loves that Melanie and Jeanne tell her what to do at home and that it is a professional organization with a kid friendly atmosphere.
Alexa attends UCP-OC for physical therapy with Melanie, and speech therapy with Jeanne. Who knew physical therapy could be so fun?! Alexa’s physical therapy started with the tire swing so she could work on standing with support, then went into the ball pit to work on strengthening her core, next she went to the piano and started playing (hitting) a lovely melody and that was all in just the first 5 minutes! During her speech therapy Jeanne works with Alexa to start making sounds and introduce words to her vocabulary. Singing the words allows Alexa to hear the sound each letter makes, so that learning new words becomes easier. In just a short 10 months they have seen her start pulling up, taking steps and strengthening her core. Alexa certainly will live a Life Without Limits!
“Watching her grow is a huge blessing even in the 10 months we have been here.”
-Anna, Alexa’s Mother
September 2011: Kaitlyn
School is started this week, and Kaitlyn can’t wait to start her year off as a sophomore in high school, and loves being around her peers. Kaitlyn was born 2 months premature and spent her first 5 weeks in the hospital. In 1997 she was diagnosed with CP, and that’s where the family’s relationship with UCP-OC started. Kaitlyn received occupational therapy as well as physical therapy with UCP-OC, and currently she has a one-on-one inclusion facilitator, Eliza Lopez, that meets her at the Boys and Girls Club in Garden Grove. The inclusion specialist allows Kaitlyn to interact with the other children at the facility, so others can move past the fact that she is in a wheelchair and see what a special girl she is.
She enjoys playing solitaire on the computer, bowling and playing hangman with her good friend Marina. At her latest birthday party she went bowling, and even had a few strikes! She truly is a very special girl that has pushed past her physical boundaries making her a great representation of the organization’s mission of Life Without Limits.
We all know that life with a special needs child can be challenging, especially without a resource to give you guidance and support throughout the process. Kaitlyn and her family found a resource in UCP-OC and wanted to find a way to give back. Recently the family was approached by a friend who started a non-profit called Sports for a Cause and that’s where the journey began.
The team envisioned a basketball tournament in honor of Kaitlyn to benefit UCP-OC and its programs that have assisted the family throughout the years. The event took place Sunday, August 21st at the Garden Grove Sports Complex, and attracted around 200-220 participants and spectators. Garden Grove Hospital was a great support at the event, and its staff came out in droves! They made up five teams and had numerous fans at the game. Team UCP-OC consisted of Kaitlyn’s extended family, and was the only team with females! Go team UCP-OC! There were eight teams that played four 23 minute games.
UCP-OC is very grateful for the family’s support as well as Garden Grove Hospital and Sports for the Cause during this difficult time as we transition to a philanthropic non-profit, raising 50% of our own support.
August 2011: Jacob
Jacob is a 6 year old boy with two brothers and a sister; his mother explains, “he is a boy first not Down syndrome.” Jacob is a gift whose smile lights up a room. He knows what he wants and thrives off of structure. When first meeting the family, Jacob was quick to get on the computer in the lobby, and go on Google! It may have been my yellow sweater that triggered the memory, but I saw that and was reminded of Curious George’s innocent curiosity.
His mom describes him as tenderhearted and a helper. “He sees a need and is the first one to go and help.” She reminisces about an instance that occurs quite often actually when it is time for carpool. Their carpool will get in the car and the second she sits down Jacob will say “here let me help you with your seatbelt!” Please keep in mind the carpool is eleven and highly capable of securing her own seatbelt, he just wants to help! At home he is the first to wake up in the morning, and is eager and proud to set the table every night with a smile on his face.
Jacob comes to UCP-OC for occupational therapy. His therapist Jane works on strengthening his upper body, fine-motor skills and daily activities such as buttoning his shirts. I was able to sit in on a session with them and saw a glimpse of how transformational OT can be! One thing she does is she gives him a sheet of solid gold sparkly stickers and asks him to first find the sticker and then take it off the page.(This is where she would have lost me because it was IMPOSSIBLE to differentiate between what was a sticker and what wasn’t!) This activity strengthens his use of the thumb and index finger. I think the best part of the session I saw was when she brought out Light Bright. Now, Light Bright was very popular when I was younger so I was shocked that it could be used for therapy! Light Bright teaches Jacob to pick up a peg, match the color of the peg to the words and stick it through the small hole all while strengthening the use of his thumb and index finger as well. Jane works with his mom to figure out activities Jacob can be doing at home so he is continues to improve. It is very important that the activities are carried on at home so that the actions are not forgotten from week to week. Marisa says she is very thankful for Jane and that she works with her so nothing is overlooked with Jacob.
written by: Elizabeth