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***Finally! NEW PICTURES -- MAY 15th!!!
 Our son Andrew was born a drug baby and had many delays. He had cardio-vascular surgery when he was 11 months old to correct an artery that was wrapped around his trachea and esophogus. He had lots of therapy, especially speech and was almost all caught up when he started losing skills. Six months later (a few days before his sixth and last birthday) he was diagnosed with Mitochondrial Encephalomyopathy...in Complexes I and IV, I+III and II+III. His brain was heavily involved and he lost his battle 11 months later (07.04.96-05.26.03). If you are a mito family and would like to know more details, email and ask me for my text document about our mito journey. You can also read more about our sweet boy and his disease on his website at www.LifeofLove.org . Throughout it all Andrew loved the way only he could...beyond what he could see!  Gaige was supposed to be our typical child. However, I can look back now at sensory problems as early as two weeks old. He started having sleeping issues early on, this was just the beginning of a myraid of issues that affect him sensorily, behaviorally, emotionally, socially and physically. We have been through a virtual alphabet soup on the autism spectrum but his official diagnosis right now is PDD-NOS or Pervasive Development Disorder, not otherwise specified, however, he is high functioning and can blend in with others at times. He has a slightly below average IQ and can not process information the way we do in the above areas which makes it difficult to learn socially and academically. When he was 5, the drs noticed a lot of special birthmarks called Cafe-au-lait marks (CALs)and he started being followed by a geneticist, who found several other anomolies, but no one is sure if it means anything or not. In May 2007, he was diagnosed with Mood-Disorder NOS, which could be early bi-polar for children. At School, he is in an inclusion Third Grade, where they have a regular education teacher, a special education teacher and an aide. There are 23 students and 8 of them need special instruction...it seems to be a great set up for him! He also gets OT in their spectacular therapy room and Speech in the classroom focusing on pragmatics and social skills. If you catch him on a good day, he can be very helpful, loving and has a great sense of humor!  Bliss is often referred to as our miracle. She showed a hearing impairment and visual delay as a newborn but suddenly started passing her tests when she was 6-9 months old. As a result of her traumatic delivery, She had hypertonia/spacicity and had a diagnosis of Neuromotor Disorder as a baby and started baclofen right away. She started all early intervention services (Physical Therapy PT, Occupational Therapy OT and Speech) when she was 3 months old and she has done super well. The PT told me they would TRY to have her sitting by two...she is a walking, talking, sassy miracle today! She has a few residuals, such as high tone in her calves, esotropia and some bowel/bladder issues we are watching. She is in first grade, smart as a whip and by the beginning of November was nearly done with the school-year's reading program! She's a great advocate for autism for Gaige and food allergies for True! She recently found out she has a pineapple allergy and is quite proud of it! She's a real heart-stealer too!  We are very thankful for our little guy, True. Even though, when we picked him up we only 2 days old, we knew he had some risk factors, we had no idea how unique, special and challenging he would be medically...nor did we know how smiley, funny and infectious he would be! I know God has called us to this "ministry" (I used to get so mad when people called it that) and equipped us just for this work. Initially True's issues were feeding and keeping it down. We now know that he is allergic to lots of stuff. He has gets speech therapy and Occupational Therapy but her main role is both oral motor stimulation to help him feed better and deal with sensory issues and help to attend with his activity level (yeah another live-wire boy). He gets PT, too, to work on his tight muscles and stretching. Throughout his life, He has been diagnosed with Cerebral Palsy (*quite* Mild Spastic Qaudraplegia), Torticollis (shortened muscle on the right side of his neck), Plagiocephaly (flattened back of the right side of his head),Benign Myoclonus, Benign Startle Seizures, Asthma, Eosinophilic Disease, Severe Gastroparesis and Severe Food allergies (potentially life-threatening to at least eggs, soy, milk, rice, corn, oats, fish, shellfish, peanuts, treenuts). We are always doing food trials because he also has Eosniphilic Disease in which his white blood cells percieve food as bacteria and attack the GI tract. The food trials weed out the food intollerances and other allergens. So far we have tried about 20 foods and he has only been able to keep Potato, Pears, Banans, Carrots, Apples and Green Beans, although he wont eat the GBs. He is still on a formula made out of amino acids (the chemical components of food)to get his nutritional needs met and may have to use it most of his life. So life has been busy. On May 20, 2005 he had immedate surgery for a dangerous birth defect in his intestines! He also has a myriad of other anomalies and issues (like seizures and asthma), including dangerous hypoglycemia and/or metabolic crisis after vomitting or fasting. He is not allowed to go longer than 6-7 hours without eating at night. In April, his neurologist gave him a clinical diagnosis of Mitochondrial disease and then in June 2008, his Metabolic specialist, who was also Andrew's doc, came to the same conclusion about True...and no they aren't related, which is the most unbelievable "coincidence"...we still can't wrap our minds around it. To look at him or his personality, you would never know all he has going on. He truly has one of the most special dispositions and he has a smile that never stops> CHECK OUT THIS VIDEO!!!! PUSH PLAY NOW! img src="http://i15.photobucket.com/albums/a360/VisibleWorship/counter.jpg" alt="Image hosted by Photobucket.com">    Journal Saturday, December 27, 2008 7:17 AM CST Hello everyone... Hospital Information:
Links: http://www.LifeofLove.org In Memory of our Andrew |
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E-mail Author: thats2seven@aol.com |
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