Update on the Formally Conjoined Twins – Maria de Jesus “Josie” and Maria Teresa “Teresa”
Maria Teresa and Maria de Jesus are formerly conjoined twins, who have been separated with the help of Mending Kids International.
Josie
Josie is a bright, happy, and joyous little one. She finds great delight in life and people. Shy is not a quality of hers, thank goodness. Josie is currently attending a mainstream preschool.
She uses her walker to get around the classroom and the play yard. She is the “movie star” of her class. Every morning she arrives to the children yelling her name and begging for her to sit next to them. They have embraced her sweet spirit and have overlooked her challenges. She enjoys art, the play do table and singing. Outside of school she is in a singing class once a week. They have a winter concert and a spring concert, both in which she has had a solo. Josie does therapy 5 days a week. She does intensive physical therapy 3 days a week for 3 hours a day. Her other 2 days she does 2 hours at Children’s Hospital Los Angeles. She has occupational therapy 2 days week.
Josie has had a hectic surgery schedule this past year. She started off with tendon releases in her left foot to help straighten it out from the strong muscle pull. A few months later, we learned that her head tilt was caused by an extra piece of vertebrae between the c1 and c2. In January 2006, Dr. Vern Tolo at CHLA did a cervical spinal fusion. She was in a pinned halo for 3 months following surgery. In May 2006, Josie had hip surgery to put her sublexed hips back in their sockets. She wore a spica cast for 6 weeks. We started to notice that her head began to tip back over to the right. A CAT scan showed that the right side of the bone fusion in her neck had reabsorbed into the body. On Feb. 23rd, the neck surgery was repeated and the halo placed on for another 3 months. The halo was removed on May 21, 2007 and Josie has a very straight head.
Even though Josie has undergone a grueling surgery year, she is in incredible spirits. She has many friends and enjoys her play dates with them. She has a “boyfriend”, Sammy who she plays with at school. She loves to swim. It is a wonderful sense of freedom for her. One of her favorite times is when she and her sister get together. They see each other 3 to 4 times a week. Teresa comes over a couple days for therapy and Josie thinks she is the assistant.
Teresa
Teresa is a happy, mischievous, and strong little girl. She has made strides that have exceeded ours and her doctor’s wildest dreams. She is attending preschool 2 days a week in Santa Clarita. She is the star of her class and the teachers spend most of the day dotting on her. She is able to participate in art class, music, and sensory play. She is seen by an occupational, augmentative speech, and physical therapists at school. Outside of school she has physical therapy 3 days a week for 3 hours a day and occupational therapy 2 days and feeding therapy 1 day.
She has been on a feeding tube for the past 3 ½ years and this past month was cleared to begin eating. Eating was one of her greatest joys prior to separation and we hope it will be again now. She likes her blended up chicken and rice. Teresa has also gained enough strength in her legs to stand with assistance. No one ever thought she would be able to stand and again she has proved us wrong. She enjoys her standing time and absolutely loves to swing. She likes to have company around. The more people the better to her. She has learned to tease us, even though she doesn’t have speech ability. It is neat to see her playful and interactive. She likes to take rides in the car and go shopping. One of her greatest pleasures is her horse back riding lessons. She rides with her therapist and enjoys it so much. Her skills have really improved over the past 2 years.
It is a great testament to how well Teresa has progressed when her Neurologist at UCLA who has been following her for the past 4 years walked into the room last visit. He kept saying to Florie are you sure this is Teresa and not Josie. She was doing so well he couldn’t believe it and kept staring at her. We find joy in seeing others recognize her progress and appreciate how far she has come. She is a survivor and has the will to keep going.
Both families, the Cajas and Hulls, are very involved in Mending Kids International and so are the girls. They find great delight in meeting the new kids here for surgery. We have dinners with the families that have kids here and visit the other families at Robyn’s Nest. They love to play with everyone. We thank God and our fabulous doctors for the gift of Teresa and Josie. They have filled our lives with joy and touch everyone else’s they meet.
They have an incredible bond that no one can explain. They feel each others pain and joy. Every time Teresa was in the hospital and was having trouble; Josie would be at home totally depressed. The odd part is we wouldn’t know that Teresa was having trouble. Last week when Josie was in her neck surgery, Teresa was sullen and sad. Her family and therapist couldn’t get her to smile, which is so rare. About 2:00 in the afternoon, Teresa began to perk up. At 2:00 in the afternoon, Josie had just come out of surgery and we knew she was ok. Incredible twin connection.
We are so thankful everyday for the fabulous care we receive from all our doctors. It is such a wonderful blessing to have a party and know that the doctors there truly care about the girls. The girls are thriving at a great rate and we are so lucky to be a part of their miracle.
