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Jason, and his twin sister Jessica were born 16 weeks premature on June 5, 2004, to a sweet but troubled, 19 year old, crack abusing, bi-polar, schizophrenic in the Pinellas County jail. By June 6, Christina (the mother) was back in her jail cell, and the twins barely two pounds combined were sent off to All Children's Hospital to fight for their lives.
Christina's Aunt Jeanette called me (her best friend Kim Drozdyk) and together we made the trek to St. Petersburg to see the babies. ( A trip I would make with a heavy heart having lost my baby boy Steven there a few years earlier, and my baby girl Rachel a year before that). The twins were lying in separate cribs under heat lamps, stuck with so many tubes in their little bodies. "These babies have no one here, and they're fighting for their little lives", I recall thinking. After grappling with the dismal fact that the State would be taking custody of the twins and would probably split them up before putting them in Foster care, I consulted with my family (husband John, and children, Richard, Amanda, and Johnny) and began calling adoption agencies.
There was no one in Christina's family able to adopt the twins. Christina was in foster care herself, and was adopted at the age of five.
Of the two, Jason was more robust and healthy looking (his prematurity temporarily disguising the CP problem yet undetected), and although he had the additional burden of recovering from laser re-attachment surgery to both of his retinas, Jason was able to go home to Palm Harbor after two months. Jessica followed four weeks later, with a feeding tube in her petite, little belly.
We knew that the babies, being so premature, were likely to have health problems. From the start, they had dozens of different doctors and therapists they had to see weekly, also there were no guarantees that Jason's sight would be restored. ( The eye surgeons were confident of the surgery's success, but also admitted that he -in fact- could not see. Jason's first noted sight came in February of 2005.)
About ten months after their birth I noticed an unfamiliar word in Jason's medical records, so I "Googled" it. The search eventually led to an explanation of why Jason's fists clenched so tightly that they turned purple, why his legs and arms always felt so so stiff and why his eyes did not follow the mobile over his changing table. (Even though it was clear now that he could see). Eating was so hard for him as was sucking, swallowing and breathing. It would take 2 hours to get a 6 once bottle in him. He still could not burp on his own at a year old. Jason had major bowel movement problems and he still had no head or trunk control, he couldn't sit or crawl, and all along we are being told it was development delays because of the prematurity. It turned out both children have Cerebral Palsy. Which didn't make me love them any less (if anything, more), but by this point I was learning more about what we were dealing with, and how important everything we do for them today matters for their tomorrows'.
Jessica's CP is considered mild, it effects her balance and gait (legs) and the more she grows the more it shows, but at 3 years old she bops around in her tights and ponytails, while Jason can barely hold is head up. But boy does he have a million dollar smile all day long.
The words Cerebral Palsy are used to describe a medical condition that affects control of the muscles. Cerebral means anything in the head and palsy refers to anything wrong with control of the muscles or joints in the body. If someone has cerebral palsy it means that because of an injury to their brain (that's the cerebral part) they are not able to use some of the muscles in their body in the normal way (that's the palsy part). Children who have cerebral palsy, or CP, may not be able to walk, talk, eat or play in the same ways as most other kids. It is important to know that CP is not a disease or illness. It isn't contagious and it doesn't get worse, but it is not something you "grow out of." Children who have CP will have it all their lives.
Sometimes there are things that can be done to improve the quality of their lives, and we owe it to them to try all that we possibly can to do so.
Children with CP have damage to the area of their brain that controls muscle tone. Depending on where their brain injury is and how big it is, their muscle tone may be too tight, too loose, or a combination of too tight and loose. Muscle tone is what lets us keep our bodies in a certain position, like sitting with our heads up to look at the teacher in class. Changes in muscle tone let us move.
Try this:
Bend your arm to move your hand up to touch your nose. To do that, you must shorten, or increase the tone in the muscle in the front of the upper part of your arm (biceps muscle) while you lengthen, or decrease the tone in the back of the upper part of your arm (triceps muscle). To move your arm smoothly without jerks and without hitting yourself in the nose, the tone in muscles used to make that movement must change in a way that is just right---an even change to tighten one while loosening the other. Children with CP are not able to change their muscle tone in a smooth and even way, so their movements may be jerky or wobbly.
Jason's Million Dollar Smile 8/2008
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