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ONE VERY SPECIAL YOUNG MAN!
Welcome to Jeff Baker's Web Page. This page has been created so you can learn more about Jeff. It's also a way to keep family and friends informed and updated concerning him. You can learn about his early history, his current history, and well, I have to admit, it's an opportunity for me, his Mom, to brag a bit, about this very special young man!
Since this is done in a journal format, those wanting the most recent facts about Jeff, just skip to READ JOURNAL HISTORY and you'll have the latest update.
EARLY HISTORY:
Jeffrey Wayne Baker was born in Hoag Hospital in Newport Beach, California on August 8, 1984. He arrived 6 weeks early, weighing 6 lbs. 13 oz. As soon as he cried, I knew that something was wrong. His little cry was very hoarse, as if he had something in his throat. The doctor said not to worry, that he probably just had some mucous in his throat and they'd take care of that and things would be fine. When they tried to place the catheter down his throat to suction him, it wouldn't go down and they knew there was a problem. While I was still in the recovery room, a team of doctors came to tell me what was wrong. He had a Tracheo-Esophageal Fistula (TEF)and they proceeded to draw me a picture. Basically, his upper esophagus ended in a blind pouch and didn't connect to the stomach. His lower esophagus was connected to the lungs instead of the stomach. They said they would transport him immediately to Children's Hospital of Orange County (CHOC), where he would under go surgery to repair the problems they'd found. They assured me he'd probably be home in about 2 weeks. Thus began our long, emotional roller coaster ride and the beginning of a life-long learning experience. The repair of the TEF was just the beginning of many surgeries to come. Just as he'd recover from one finding, they'd find something else wrong. His doctors said that children born with the anomalies Jeff had usually go home in about 4 to 5 months, but those having all the complications Jeff ended up having, never go home at all. He amazed his parents and his many doctors with his strong will to live. He was such a little fighter!! Then finally, after 10 months, 4 days, and 11 surgeries, he came home for the very first time, supported by an assortment of tubes and machines. We felt so very blessed to have him home at last. When he was 11 months old he was diagnosed with a rare syndrome, called CHARGE Syndrome.
CHARGE Syndrome refers to children with a specific set of birth defects. 'CHARGE' originally came from the first letter of some of the most common features seen in children with this syndrome.
C - for coloboma and cranial nerves
H - heart defects
A - atresia of the choanae
R - retardation of growth & development
G - genital and urinary abnormalities
E - ear abnormalities &/or hearing loss
(*Please see link below for more information on CHARGE).
Some of Jeff's other birth anomalies were:
Tracheo-Esophageal Fistula (TEF) W/ Esophageal Artresia which was repaired twice. He also had Tracheomalacia and had a trache for 3 years. He had very bad Reflux and feeding problems, which required a Nissen Fundo surgery. He had Villious atrophy of the small intestines and malabsorption problems necessitating a G-tube. Because of the problems with leakage and a poor nutritional state, they would change the location of the G-tube site occasionally. At one point he had a J-tube. Unfortunately, one of the metal wings holding the J-tube in place perforated his intestines and he filled with peritonitis. Doctors removed part of his Gall bladder and 4 inches of intestines to fight the infection. This was probably the sickest he'd ever been and he was not expected to live. But our tough little guy fought hard and pulled through once again. Jeff was 6 yrs. old when his G-tube was finally removed for good. The tissue granulation was so bad, it needed to be surgically closed. He has a right unilateral Choanal Artesia - which means he can only breath through one nostril. He has microphthalmia and a Coloboma in his left eye that involves the optic nerve. He has Cranial Nerve Dysfunction – lack of smell, mild facial palsy, sensorineural hearing loss, swallowing dysfunction. He has Genital Hypoplasia – cryotorchidism, and delayed pubertal development. He had a bilateral orchiopexy for his undescended testes when he was 6 years old. In 2001, because we were concerned about him developing osteoporosis, and because the bones thicken during puberty, we agreed to Testosterone injections, which he recieved for 8 months. This promptly put him into puberty. For the benifit of other CHARGE parents, I must add a personal note here. I wish we would have never used the Testosterone. Not being in puberty didn't bother Jeff in the least, in fact, he didn't know the difference. Reaching puberty was something that he nor we needed to deal with. It escalated his behaviors and we now deal with acne, shaving, and much pubic hair in the diaper area. Jeff is oblivious to all this of course, and it makes personal cares much more involved. He has upper body hypotonia, sloping shoulders, a short, webbed neck. He has low set, small, misshapen 'CHARGE' ears. He is profoundly deaf bilaterally. He has had many sets of ear tubes thru the years. He has the typical 'CHARGE' face – square, asymmetric face, flat cheekbones, wide nose with broad nasal bridge and small, protruding chin. He is very fortunate that his heart problems are minor. He had a Congenital Heart Defect – PDA at birth. He has a right aortic arch instead of left, but all valves and chambers are normal. He suffered Grand Mal seizures until he was 6 yrs. of age but has had none since.
His problems more recently have been: In September 2001 he was diagnosed with Celiac Sprue Disease and Lactase Deficiency. Therefore he is on a gluten-free diet. At the same time he was also diagnosed with acid reflux with mild esophagitis, which medication is helping. In October 2001 due to his severe self-abusive behaviors, Jeff was temporarily placed at Idaho State School and Hospital in Nampa for behavior medication management. This was by far one of the hardest things we have ever had to do, but as hard as it was, it was worth it. While residing at ISSH on June 3, 2002 he had Scoliosis surgery with spinal fusion and rod fixation from T2-L4. This was done at St. Luke’s Hospital in Boise, Idaho. Three weeks later he developed a staff infection and had surgery for debridement. He did well for four months and then two spots on his incision opened with green drainage. October 21, 2002 he had surgery again and the infection was drained and debridement and irrigation was done again. The infection was growing on the hardware, but removing it was not an option as the bone grafts were not yet strong enough. It would be almost impossible to eradicate the infection (because it was growing on the rods), but we could buy some time for the bones to strengthen, with IV antibiotics. On October 25, 2002 a Porta Cath was surgically implanted for the long-term aggressive intravenous antibiotic treatment he would receive. Because his behavior medications were now under control, we were finally able to bring Jeff home. He returned home in December 2002. We continued to administer his IV antibiotics twice daily for the next 2 months. In February, lab results showed the infection growing so it was determined that the hardware needed to be removed. On February 17, 2003 he had surgery once again at St. Luke’s Hospital to remove the rods and hardware. He continued the aggressive antibiotic treatments twice daily for the next 2 ˝ months. In September 2003, Jeff was diagnosed with borderline osteoporosis. In December of 2004 his Porta Cath was surgically removed. In May 2004 blood tests revealed Jeff had low thyroid and iron levels. On May 11th he was started on Synthroid 0.05 mg and has done well at that dosage. The iron deficiency is no longer a problem. He currently has blood draws every 6 months to check valporic acid levels because of the Depakote he is taking.
HIS CURRENT HISTORY:
Jeff is 22 years old. He is currently in good health. At 5'3" he is small for his age, but consistent for a CHARGE person. He weighs 113 lbs. He is profoundly deaf bilaterally. He is non-verbal. He has no usable vision in his left eye because of the Coloboma. In his right eye his vision is 20/400 with a small cataract and astigmatism. He is legally Deaf/Blind. He is cognitively and multi-sensory impaired. He has been diagnosed with Autism (however, I feel he is just autistic-like, as are most Deaf/blind individuals), Pervasive Developmental Disorder, Obsessive Compulsive Disorder, and Tourretts. He also deals with Sensory Intergration Issues. This is all under the CHARGE umbrella. Jeff communicates with sign language, pictures and we are now working on getting him to write what he wants. He has a very large receptive signing vocabulary. His expressive language is there, he just doesn't initiate communication as much as we'd like. However, we are seeing some improvement in this area. Even though he has a large receptive vocabulary, he does not understand concepts. (Therefore he cannot tell us if or where he hurts, if he is angry, scared, etc.) He walks slowly and with an abnormal gait. Because of vision and balance problems he has difficulty walking on un-level ground. He cannot walk longer distances as he tires easily, due to his small lung capacity. Although his functional assessment is on the low side, he does have some splinter skills. He loves numbers and can add, subtract, multiply and divide 3 digit numbers - all in his head!! He enjoys using the computer and can read at about a second grade level. He can take ANYTHING apart, and usually does!
Toilet training is an on-going issue.
Jeff has a cute personality, a fun sense of humor, is very active and inquisitive, and is a very happy young man. He loves things that vibrate, spin, light up or flash. He loves using tools and working with wood. We do have to watch him closely because he eats screws, bolts, nails, or anything else he thinks is interesting. He loves making creations from string, tape, balloons, and any toys he see fit to use. Another thing he truly enjoys, is putting spit-wads on any mirrored or glass surfaces. (Although they are quite intricate, I personally, do not appreciate this particular talent of his). He is a very hard worker and will not stop until he has completed what he is doing. He is also a perfectionist at what he does.
Jeff graduated from Preston High School in 2005 and is currently receiving Developmental Disability Services Monday through Friday for 5 hours each day. The transition from school to DDS took a while for him to adjust, but he is now doing fine. I was hoping that he would be able to attend a sheltered workshop but that didn't happen. Jeff is still one on one, and the workshops are not equiped for that. Jeff did the jobs wonderfully - putting together trophies, sorting tiles, sorting envelopes to be mailed by zip codes, and folding shirts that have been silkscreened. He catches on very quickly, but his behaviors keep him from going there. He wants to eat the nuts, bolts, etc. and for his safety, needs a one on one aide. So his behaviors are one of the things DDS is working on with the goal being to have them under control enough so he might be able to work at a sheltered workshop or a part time job within our community with assistance. Routine is very important to Jeff and he functions best when he knows he has a set routine. Therefore, we are hoping that between his Developmental Disabilities program, and possibly a supervised, part-time job in the community, there will be plenty to fill his days and still have the set routine that he needs. The important thing is that he be kept busy, productive, fulfilled, loved and happy.
As Jeff's Mom, I feel so very blessed to have this choice young man to love, care for and serve daily. He is a delight and has been my greatest JOY and CHALLENGE rolled into one terrific young man. Jeff has touched more people and overcome more in his short life than most people do in a lifetime. What an example and inspiration he is. He is my mentor, my hero, my teacher. I truly believe Jeff is one of those special spirits that was sent here just to teach others. I know he certainly has taught me what's most important in this life. He has taught me so much and continues to do so daily. Because of Jeff, and wanting to help him grow to be the best he can be, I feel I have probably gained the equivalent of an honorary degree in medicine, education and law. At times it's been extremly hard, and at times it's been much easier. But I can truthfully say, it's been worth every tear I've shed, every ache in my heart, every fight I've had to fight. The smiles, the laughter, the love, and the strength of my son have made it all worthwhile. I am so grateful and thankful to my Heavenly Father for the blessing of this choice young man!
Journal
Saturday, February 10, 2007 10:37 PM CST Jeff is doing well. He is staying healthy. We have found a Physical Therapist that is working with us to hopefully slow the progression of his scoliosis. He is very patient with Jeff, and going into week 2, Jeff is still cooperating!
Read Journal History
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