MedWorm provides a medical RSS filtering service. Over 6000 RSS medical sources are combined and output via different filters. This feed contains the latest medical blog items that have been tagged with 'cerebral palsy'. Sat, 03 Sep 2011 02:09:25 +0100 http://www.medworm.com/index.php?rid=5139704&cid=t_110013_87_f&fid=36941&url=http%3A%2F%2Fwww.mazecordblood.com%2Fblog%2F%3Fp%3D1537     According to the Orlando Sentinel, a new bill in Florida last month requires health care providers to educate their clients about cord blood banking options, including public and private banks. In addition, the Florida Department of Health website has now included a link to a non commercial site, www.parentguidecordblood.org which explains the process of collecting cord blood at birth, the options, costs and accreditation.  On this site is a cost comparison chart explaining initial and yearly costs  for some private cord blood banks. Once you have done research on each bank, try to find the one that has no yearly fee, it will ultimately cost much less over the span of 20 years. You can read more about it , here. {Click here for a free information packet and specia... Cord Blood News blogs http://www.medworm.com/rss/comments.php?id=5139704 Wed, 17 Aug 2011 18:21:42 +0100 5139704 http://www.medworm.com/index.php?rid=5069452&cid=t_110013_87_f&fid=36941&url=http%3A%2F%2Fwww.mazecordblood.com%2Fblog%2F%3Fp%3D1470       Since its inception in December, the Harlem Hospital has collected 20 units of cord blood, well above their expectations and a desperately needed boost in the African-American and Latino communities where donations of bone marrow and cord blood lag severely behind that of whites. Umbilical cord blood has unique characteristics that make it desirable for transplants. Of the 9 million potential bone marrow donors on the national registry, only 650,000  — or 7 percent — are African American. Caucasians make up almost 80 percent of the national donor registry . It’s a disparity that leaves African Americans, Latinos, Asians and Native Americans at risk of dying from diseases that might be treated, said Dr. Edgar Mandeville, director of Obstetrics and Gynecolo... Cord Blood News blogs http://www.medworm.com/rss/comments.php?id=5069452 Tue, 26 Jul 2011 16:45:06 +0100 5069452 http://www.medworm.com/index.php?rid=5050541&cid=t_110013_87_f&fid=36941&url=http%3A%2F%2Fwww.mazecordblood.com%2Fblog%2F%3Fp%3D1462     Examiner.com/Grand Rapids MI has just posted a comprehensive article explaining cord blood banking, its uses and what to look for if you are choosing to  bank your baby’s cord blood privately as well as publicly.    The author,  Nancy Zielinski, is an expert in the fields of public and sexual health. You can read more here. (Source: Cord Blood News) Cord Blood News blogs http://www.medworm.com/rss/comments.php?id=5050541 Thu, 21 Jul 2011 19:11:57 +0100 5050541 http://www.medworm.com/index.php?rid=5050543&cid=t_110013_87_f&fid=36941&url=http%3A%2F%2Fwww.mazecordblood.com%2Fblog%2F%3Fp%3D1441   An umbilical cord blood transplant is a procedure used to treat various forms of blood disease, such as leukemia, certain types of anemia, and other forms of cancer. The umbilical cord contains stem cells, which can develop into healthy blood cells. Cord blood for an umbilical cord blood transplant can be used from the patient’s own umbilical cord, if it was banked, or from a donor’s cord blood. Banking your baby’s umbilical cord blood is very important in case your child ever needs it. There are many diseases it can help such as cerebral palsy, leukemias, myeloldysplastic syndromes (pre-leukemia) lymphomas, Erythrocyte, and other bone cancers. Read here for  more extensive information on wisegeek.com If you  go to this non commercial site and check out the comp... Cord Blood News blogs http://www.medworm.com/rss/comments.php?id=5050543 Tue, 19 Jul 2011 18:52:53 +0100 5050543 http://www.medworm.com/index.php?rid=5008158&cid=t_110013_87_f&fid=36941&url=http%3A%2F%2Fwww.mazecordblood.com%2Fblog%2F%3Fp%3D1412 sci·at·i·ca –noun 1.  pain and tenderness at some points of the sciatic nerve, usually caused by a prolapsed intervertebral disk; sciatic neuralgia. 2. any painful disorder extending from the hip down the back of the thigh and surrounding area. Unfortunately, sciatica is one of the most painful types of back pain and is common in pregnancy. It usually occurs when the baby shifts or moves and lands on a nerve. Tips to alleviate the pain might include, getting off your feet , if only for a little while, while sitting, raise one leg on a step stool or a pile of books.  You can read more here for other tips and helpful hints to ease the pain of sciatica.   (Source: Cord Blood News) Cord Blood News blogs http://www.medworm.com/rss/comments.php?id=5008158 Wed, 06 Jul 2011 16:45:44 +0100 5008158 http://www.medworm.com/index.php?rid=4968472&cid=t_110013_87_f&fid=36941&url=http%3A%2F%2Fwww.mazecordblood.com%2Fblog%2F%3Fp%3D1391     A new study reported by Reuters from the  European Heart Journal describes the effects on children whose mothers smoked while they are pregnant.  The study indicates that smoking in pregnancy can lead to lower levels of  HDL or ‘good’ cholesterol thus making them more prone to heart disease later in life. “Our results suggest that maternal smoking ‘imprints’ an unhealthy set of characteristics on children while they are developing in the womb, which may well predispose them to later heart attack and stroke,” said David Celermajer, a professor of cardiology at the University of Sydney. Read here for more information {Click here for a free information packet and special coupon for MAZE Cord Blood Laboratories! } (Source: Cord Blood Ne... Cord Blood News blogs http://www.medworm.com/rss/comments.php?id=4968472 Fri, 24 Jun 2011 20:30:16 +0100 4968472 http://www.medworm.com/index.php?rid=4911487&cid=t_110013_87_f&fid=39187&url=http%3A%2F%2Fgetbetterhealth.com%2Fscuba-diving-with-a-disability%2F2011.06.07 Outdoor recreation is intended for everyone, and can be enormously beneficial for persons with disabilities. I am in awe of disabled skiers, climbers, divers, and others who have learned to coordinate their bodies and take great enjoyment and a sense of accomplishment from their wilderness activities. It behooves everyone in the healthcare profession to be aware of certain special medical concerns for persons who are disabled physically or emotionally. Additionally, family members and friends are often well aware of what they can do to help in providing a joint effort to support the disabled. At the 2010 Wilderness Medical Society annual meeting in Snowmass, Colorado, JenFu Cheng, MD (a pediatric rehabilitation specialist from NJ), gave a wonderful presentation on the medical aspects of ... Better Health blogs http://www.medworm.com/rss/comments.php?id=4911487 Tue, 07 Jun 2011 12:00:00 +0100 4911487 http://www.medworm.com/index.php?rid=4883562&cid=t_110013_87_f&fid=36941&url=http%3A%2F%2Fwww.mazecordblood.com%2Fblog%2F%3Fp%3D1348 Is saving your child’s cord blood a wise investment for future stem cell therapy?  That is the question many parents are asking when they learn they are pregnant. CNN reports via parenting.com that it is important to do your research carefully and find the appropriate cord blood bank that fits your needs.  According to the article it can cost $3600 or more over the course of your 18 year investment.However, MAZE Cord Blood Laboratories is 55% less costly than other banks which charge a yearly fee to store the blood. The reason? MAZE does NOT charge an annual fee, rather, they have one price which can be paid in full or over time, and that is it.  You can read here for further information. {Click here for a free information packet and special coupon for MAZE Cord Blood Labora... Cord Blood News blogs http://www.medworm.com/rss/comments.php?id=4883562 Tue, 31 May 2011 16:08:52 +0100 4883562 http://www.medworm.com/index.php?rid=4789227&cid=t_110013_87_f&fid=36941&url=http%3A%2F%2Fwww.mazecordblood.com%2Fblog%2F%3Fp%3D1316   On the most recent episode of The Doctors on CBS is an awesome segment about stem cells and cord blood. The Doctors answer a question from a women deciding whether she should store her third child’s cord blood. The collective answer was a resounding ‘yes’.  They speak about the overwhelming and positive potential of stem cells and cord blood. If stored, your family is protected should the need  for a stem cell transplant arise. The Doctors call it insurance. Hope that you have it if necessary, just like any other insurance.  They explain that the benefits outweigh the costs and to make sure the company you choose is accredited and approved by the FDA. In addition, they note that some companies charge a yearly fee, however, MAZE Cord Blood Bank charges only a... Cord Blood News blogs http://www.medworm.com/rss/comments.php?id=4789227 Wed, 04 May 2011 19:11:28 +0100 4789227 http://www.medworm.com/index.php?rid=4693286&cid=t_110013_87_f&fid=39187&url=http%3A%2F%2Fgetbetterhealth.com%2Ftreatments-for-kids-with-autism-and-cerebral-palsy-on-insurance-chopping-block%2F2011.04.08 One of the great challenges facing the folks who have been tasked to implement the Big O’s health care law is defining “essential benefits,” the core medical services that insurers must cover. Despite its voluminous nature, the law is remarkably vague in this regard. It does identify 10 care categories that health plans must provide to consumers who use federally-funded health insurance exchanges to select a plan, but the categories and associated lists aren’t comprehensive or specific (the categories appear at the end of this post). The Institute of Medicine has been tasked to flesh out the lists of required services. It has begun work amid a frenzy of lobbying by private insurers and consumer groups. Habilitative services are one contentious area, and they illustrate the challe... Better Health blogs http://www.medworm.com/rss/comments.php?id=4693286 Fri, 08 Apr 2011 20:00:28 +0100 4693286 http://www.medworm.com/index.php?rid=4653319&cid=t_110013_87_f&fid=36941&url=http%3A%2F%2Fwww.mazecordblood.com%2Fblog%2F%3Fp%3D1222 Having a “green pregnancy” isn’t about morning sickness. During the nine months of pregnancy, more women are paying attention to what’s going on outside of the womb, in an effort to protect the health of their baby inside the womb. Every day there seem to be more  and more ways to protect yourself and your baby from external health hazards. We all know the hazards from second hand smoke and the  consequences it has. But there are unseen hazards you may be unaware of. From a ‘green’ diet to ‘green’ cleaning products you  can learn more to protect yourself and your LO. This is an outstanding article explaining the green-ness of pregnancy. While your are making sure you have a heathy pregnancy, remember to do your research on cord blood banking. and find... Cord Blood News blogs http://www.medworm.com/rss/comments.php?id=4653319 Tue, 29 Mar 2011 15:14:23 +0100 4653319 http://www.medworm.com/index.php?rid=4626795&cid=t_110013_87_f&fid=36941&url=http%3A%2F%2Fwww.mazecordblood.com%2Fblog%2F%3Fp%3D1213 Genetic diseases affect an estimated 12 million Americans, yet according to a survey of 1,000 people conducted by the Genetic Disease Foundation (GDF), while two-thirds of those surveyed were willing to and saw the benefits of undergoing genetic testing, close to 80 percent had never talked to their physician about genetic screening – an inconsistency that can have serious implications on a person’s overall health and the health of their immediate family members.  Read here for an extensive article about genetic testing and questions to ask yourself and your significant if you should seek genetic testing and what to do with the results. These questions are all part of preparing yourself and your SO for the birth.Other questions may include the decision to bank your baby’s cord b... Cord Blood News blogs http://www.medworm.com/rss/comments.php?id=4626795 Wed, 23 Mar 2011 20:24:09 +0100 4626795 http://www.medworm.com/index.php?rid=4605814&cid=t_110013_87_f&fid=36941&url=http%3A%2F%2Fwww.mazecordblood.com%2Fblog%2F%3Fp%3D1199 In the world today we can do our part to ’save the world.’  If each person takes on just one of these ideas, the world is well on its way to becoming a better place for all of us.  We need to prepare the Earth for ourselves as well as those we are leaving behind, our most important resource, of course, this is our children, our legacy . Care2.com is an amazing website which illustrates wholesome and natural living while combining that our with the everyday  lives.  Here is a great article about the ways in which we, as women (and men) can do our part in helping to save the world. Another very important way to give back is to find a cure for many diseases such as some childhood cancers, cerebral palsy and other spinal cord injuries. We can bank our baby’s umbilical... Cord Blood News blogs http://www.medworm.com/rss/comments.php?id=4605814 Thu, 17 Mar 2011 16:40:59 +0100 4605814 http://www.medworm.com/index.php?rid=4592373&cid=t_110013_87_f&fid=36941&url=http%3A%2F%2Fwww.mazecordblood.com%2Fblog%2F%3Fp%3D1194 One of the leading experts on blood and marrow transplantation, Joanne Kurtzberg, MD, was the first physician to use umbilical cord blood from unrelated donors to cure cancers and life-threatening genetic disorders and Duke University. In this recent article she answers many questions about cord blood, its benefits and what the future holds for the science of umbilical cord blood transplantation. (Source: Cord Blood News) Cord Blood News blogs http://www.medworm.com/rss/comments.php?id=4592373 Tue, 15 Mar 2011 17:35:44 +0100 4592373 http://www.medworm.com/index.php?rid=4592374&cid=t_110013_87_f&fid=36941&url=http%3A%2F%2Fwww.mazecordblood.com%2Fblog%2F%3Fp%3D1189 The second trimester is great for traveling, as long as you take a few precautions. Planning a vacation or weekend getaway  is definitely a good way to relax and enjoy your time with your significant other. If you are planning to fly take a few precautions such as drinking a lot of water before during and after the flight and not sitting for too long in your seat. Walk up and down the aisles if necessary. ( You can be sure there will be at ONE trip to the lavatory!) Our friends over at thebump.com have answered some important questions regarding travel during the middle three months of your pregnancy. You can read here are a few tips to keep yourself (and baby!) safe and comfy on the road and in the skies. While you are away, it might be a good time to have ‘those discussions&#82... Cord Blood News blogs http://www.medworm.com/rss/comments.php?id=4592374 Mon, 14 Mar 2011 17:00:42 +0100 4592374 http://www.medworm.com/index.php?rid=4549744&cid=t_110013_87_f&fid=36941&url=http%3A%2F%2Fwww.mazecordblood.com%2Fblog%2F%3Fp%3D1155 Here is an amazing story about the success of umbilical cord blood transplantation.  Baby John is living proof that cord blood can be a tremendously valuable safety net for your baby.  Click ‘play’ the youtube video above for the inspiring story. (Source: Cord Blood News) Cord Blood News blogs http://www.medworm.com/rss/comments.php?id=4549744 Fri, 04 Mar 2011 21:26:46 +0100 4549744 http://www.medworm.com/index.php?rid=4450281&cid=t_110013_87_f&fid=36941&url=http%3A%2F%2Fwww.mazecordblood.com%2Fblog%2F%3Fp%3D1120 Nordstrom, Inc. announced today that it is recognizing Black History Month in 2011 by teaming up with Be The Match(R) to help raise awareness of the critical need for more African American marrow and umbilical cord blood donors. For more information about Nordstrom’s approach to recognizing Black History Month and other heritage months throughout 2011, please visit www.nordstrom.com/livingwell. (Source: Cord Blood News) Cord Blood News blogs http://www.medworm.com/rss/comments.php?id=4450281 Tue, 08 Feb 2011 23:51:24 +0100 4450281 http://www.medworm.com/index.php?rid=4411510&cid=t_110013_87_f&fid=36941&url=http%3A%2F%2Fwww.mazecordblood.com%2Fblog%2F%3Fp%3D1087 Cord blood is the blood left over in your baby’s umbilical cord immediately after birth. Your practitioner harvests the blood in a quick, easy, and painless procedure. The reason this blood is so valuable is because it contains hematopoietic stem cells, which are cells that have the ability to develop into any type of specialized cell in the blood and immune system and replace or repair these types of damaged cells throughout the body. Banking your baby’s cord blood ensures that if your child is ever in need of a cord blood transplant it will available for your exclusive use. Affordability can be  a factor in deciding whether you are able to bank your newborn’s cord blood. At  M.A.Z.E Cord Blood Laboratories, we are determined to  keep our fees low and never charge an ann... Cord Blood News blogs http://www.medworm.com/rss/comments.php?id=4411510 Fri, 28 Jan 2011 18:59:19 +0100 4411510 http://www.medworm.com/index.php?rid=4377561&cid=t_110013_87_f&fid=36941&url=http%3A%2F%2Fwww.mazecordblood.com%2Fblog%2F%3Fp%3D1069 So there you are. In your ob/gyn’s  office, getting ready to hear your baby’s heartbeat, get measured and weighed. You’ve been discussing your birth plan with your doctor, making decisions such as whether you will be banking your baby’s umbilical cord blood and whether or not you will  have pain medication.  Have you ever left the ob/gyn office really wanting to know the sex of your baby but they just couldn’t tell you. Or you didn’t ask, or you got cold feet… Here are some fun ways to predict whether you’re carrying a boy or a girl…if you’re carrying low, it may be a boy or if the heart rate is higher it may be a girl… either way you will have a good laugh trying to predict the sex of your baby!  At parenting.com you w... Cord Blood News blogs http://www.medworm.com/rss/comments.php?id=4377561 Fri, 21 Jan 2011 01:33:10 +0100 4377561 http://www.medworm.com/index.php?rid=4322496&cid=t_110013_87_f&fid=36941&url=http%3A%2F%2Fwww.mazecordblood.com%2Fblog%2F%3Fp%3D1033 The promising field of stem cell research is prompting more and more parents to store their newborn’s umbilical cord blood for possible use in treating future disease. Cord blood is rich in blood-forming stem cells and is currently used in transplants for some patients with leukemia, lymphoma, immune deficiencies and inherited metabolic disorders. Most infusions come from unrelated donors, partly because of concerns that receiving one’s own defective cells may cause the same diseases to return. Now, early research shows that cord blood may be able to safely regenerate other types of cells in the body, fueling optimism that doctors may one day routinely use a patient’s own stored cord blood to treat such conditions as cerebral palsy (CP), stroke, spinal cord injuries, diabetes and car... Cord Blood News blogs http://www.medworm.com/rss/comments.php?id=4322496 Fri, 07 Jan 2011 18:06:25 +0100 4322496 http://www.medworm.com/index.php?rid=4230156&cid=t_110013_87_f&fid=39187&url=http%3A%2F%2Fgetbetterhealth.com%2Fan-interview-with-a-developmental-disability-nurse%2F2010.12.05 For my first interview, I thought I’d interview someone who would tolerate my novice interviewing abilities — my mother. Ginny, RN, BS, DDRN has been a nurse for over 30 years, most of that time in the Intensive Care Unit. (The apple did not fall far, did it?) She currently works as Developmental Disabilities Nurse and has done so for nine years. A developmental disability is defined by Wikipedia as “a term used in the United States and Canada to describe life-long disability attributable to mental and/or physical impairments, manifested prior to age 18.” Ginny says that her clients have a range of mental and physical disabilities including cerebral palsy, Down Syndrome, mental retardation, and autism, with autism being the most prevalent. Her clients live in normal houses a... Better Health blogs http://www.medworm.com/rss/comments.php?id=4230156 Sun, 05 Dec 2010 22:00:12 +0100 4230156 http://www.medworm.com/index.php?rid=3494299&cid=t_110013_87_f&fid=36941&url=http%3A%2F%2Fwww.mazecordblood.com%2Fblog%2F%3Fp%3D478 It’s a delight to read about intelligent practitioners and other supporters of the possibilities that banking cord blood presents.  This is particularly true when these professionals are objective contributers to the conversation, not paid spokespeople. Dr. Linda Burke-Galloway, M.D was recently inspired by the story of Chloe Levine and her cord blood transplant at Duke University to address symptoms of  cerebral palsy. You can read what she has to say about cord blood banking in terms of its efficacy and uses.  Be advised, however, that Dr. Galloway has some of the pricing wrong (which is fine since that’s not her bailiwick).  A cord blood bank that charges $1100 for processing and storage will total close to $4000 at the end of 20 years because of those annual storage fee... Cord Blood News blogs http://www.medworm.com/rss/comments.php?id=3494299 Thu, 22 Apr 2010 14:21:18 +0100 3494299 http://www.medworm.com/index.php?rid=3403871&cid=t_110013_87_f&fid=36941&url=http%3A%2F%2Fwww.mazecordblood.com%2Fblog%2F%3Fp%3D447 We came across this interesting website dedicated to the science around stem cells and bone marrow.  This is always a challenge since it’s not always clear whether these sites are above board, or just shills for cord blood companies.  www.Chxa.com reports that Duke University received $10 million from the Robertson Foundation, a family foundation started in 1996, to aid in the study of umbilical cord stem cells in the treatment of cerebral palsy. Many of us are familiar with the name of Dr. Joanne Kurtberg whose work with stem cells is renown in the race to treat cancers and other disorders, particularly those which plague children. Read about the donation and what the Robertson family believes Duke can accomplish with this support (Source: Cord Blood News) Cord Blood News blogs http://www.medworm.com/rss/comments.php?id=3403871 Wed, 24 Mar 2010 21:06:50 +0100 3403871 http://www.medworm.com/index.php?rid=3228006&cid=t_110013_150_f&fid=35777&url=http%3A%2F%2Ffeedproxy.google.com%2F%7Er%2FPharmalot%2F%7E3%2Fa5Imb0EpOYg%2F A woman is suing Allergan, which makes Botox, because she believes the injectable cosmetic med led to the death of her seven-year-old daughter. Why? Botox was used to treat muscle spasms resulting from cerebral palsy, and Dee Spears charges Allergan wrongfully promoted untested and off-label uses, misrepresented Botox safety record, and failed to adequately warn health care providers of all the known risks of the product, according to court documents. At issue is the safety of the drug, especially in higher doses used to treat kids with cerebral palsy. Kristen Spears died in 2007 of respiratory failure and pneumonia, according to The Los Angeles Times, which adds that experts hired by her mom say Botox weakened muscles that controlled her breathing and swallowing, leading to respiratory fa... Pharmalot blogs http://www.medworm.com/rss/comments.php?id=3228006 Mon, 01 Feb 2010 17:04:41 +0100 3228006 http://www.medworm.com/index.php?rid=2757668&cid=t_110013_86_f&fid=36669&url=http%3A%2F%2Ffadelibrary.wordpress.com%2F2009%2F09%2F02%2Fbritish-journal-of-ophthalmology-2009-vol-93-no-8%2F British Journal of Ophthalmology 2009 (Vol. 93, No.8) content page Fade Fave: Visual acuity and visually evoked responses in children with cerebral palsy: Gross Motor Function Classification Scale Fade Skinny: Measurement of visual acuity can be difficult in children with cerebral palsy (CP). The purpose of this study was to determine the probability of obtaining quantitative (logMAR) visual acuities in CP children with different severities of motor dysfunction. An observational, cross-sectional design study was conducted in 76 children (mean age 5.9 years) who had CP severity graded using the Gross Motor Function Classification Scale (GMFCS). Visual testing was performed using optotypes, spatial-sweep (SSVEP) or flash (FVEP) visually evoked potentials. (NHS Athens is required to access th... Fade Library blogs http://www.medworm.com/rss/comments.php?id=2757668 Wed, 02 Sep 2009 16:28:56 +0100 2757668 http://www.medworm.com/index.php?rid=2270268&cid=t_110013_87_f&fid=36941&url=http%3A%2F%2Fwww.mazecordblood.com%2Fblog%2F%3Fp%3D97 M.A.Z.E. cord blood bank recently posted an interesting case study on a patient whose parents banked his cord blood with M.A.Z.E.  The baby was born with cerebral palsy and his cord blood was used as treatment. Read the cord blood case study. (Source: Cord Blood News) Cord Blood News blogs http://www.medworm.com/rss/comments.php?id=2270268 Sun, 15 Mar 2009 23:09:49 +0100 2270268 http://www.medworm.com/index.php?rid=2036137&cid=t_110013_87_f&fid=36941&url=http%3A%2F%2Fwww.mazecordblood.com%2Fblog%2F%3Fp%3D62 Following is an announcement that was recently sent out by M.A.Z.E. regarding one of our families. Child Treated with Cord Blood in Experimental Study While pregnant, Danielle and John Centrello decided to bank their baby’s cord blood with M.A.Z.E. Cord Blood Laboratories in Purchase, NY. Not only was M.A.Z.E. close to home, but it offered top quality cord blood processing and storage at an affordable price for the Centrellos. On November 24, 2007, after a very typical pregnancy and delivery, baby John was born to Danielle and John Centrello at Englewood Hospital in Englewood, NJ. They saved their infant’s cord blood, hoping never to use it, but wanted to have it just in case. Things were not quite usual with baby John, beginning with his first day home from the hospital. He woul... Cord Blood News blogs http://www.medworm.com/rss/comments.php?id=2036137 Sun, 14 Dec 2008 22:01:36 +0100 2036137 http://www.medworm.com/index.php?rid=1998951&cid=t_110013_129_f&fid=34885&url=http%3A%2F%2Fterriblepalsy.wordpress.com%2F2008%2F11%2F30%2Fsteps%2F I should probably start this post with a disclaimer. I’m no expert.  I have no experience in anything disability related except for the sink or swim experience of the last 4 and a bit years.  I’m not even sure that I am swimming.  I’m treading water for the most part. I just wanted to share what I have learnt.  If you disagree - that’s fine.  Don’t mind.   Really.   But this is what has happened to me.  And if you are in the same boat, trying desperately to paddle up-stream - I thought these words of insight might help. Many months ago, we had a chance meeting.  We met a guy at the beach who told us that he would help us out if we needed to modify our house.  A few weeks later, we rang him to help us with our modifications.  At this point in time, w... Terrible Palsy blogs http://www.medworm.com/rss/comments.php?id=1998951 Sun, 30 Nov 2008 10:22:06 +0100 1998951 http://www.medworm.com/index.php?rid=1930249&cid=t_110013_129_f&fid=34885&url=http%3A%2F%2Fterriblepalsy.wordpress.com%2F2008%2F11%2F04%2Fattitude%2F We now have a helper in the mornings and afternoons, a couple of days each week.  I can’t tell you how nice it is to have another set of arms available.  Our helper, Miss A, very much has been a blessing. When I first met with Miss A and introduced her to Moo, she was a bit taken aback.  She had no experience with children with special needs.  A big challenge for me and hubby when we were too-ing and fro-ing was whether to get a carer as opposed to a nanny.  Funny enough, a carer is actually cheaper.  But then, you have  a person who is trained in dealing with people with disabilities.  Our concern then was him being treated as if he was a person with a disability.  A nanny however looks after children.  Moo is a child first.  And ultimately, we decided that this was the p... Terrible Palsy blogs http://www.medworm.com/rss/comments.php?id=1930249 Tue, 04 Nov 2008 07:48:48 +0100 1930249 http://www.medworm.com/index.php?rid=1851015&cid=t_110013_87_f&fid=34935&url=http%3A%2F%2Fmedicine.com.my%2Fwp%2F%3Fp%3D4712 Blogging and Wordpress changed Glenda Watson Hyatt’s life. A disability like Cerebral palsy did not deter this gutsy lady! (hat tip to my sister for the link) a How blogging changed one person’s life (Source: Malaysian Medical Resources) Malaysian Medical Resources blogs http://www.medworm.com/rss/comments.php?id=1851015 Thu, 02 Oct 2008 04:00:00 +0100 1851015 http://www.medworm.com/index.php?rid=1837203&cid=t_110013_129_f&fid=34885&url=http%3A%2F%2Fterriblepalsy.wordpress.com%2F2008%2F09%2F29%2Fremembering%2F I picked Moo up from kindy.  It was like any other day.  In his powerchair, Moo has developed quite a personality, better described as stubbornness. The trip to the car should take two minutes.  Moo can take 10 minutes.  Usually when he gets free of the kindy gates, he does spins and turns.  I’m not sure why.  But what he doesn’t do is drive around the side of the car so I can transfer him in.  If he did that, my life would be easy.  And it can’t be easy, can it? As I was putting Sumo in the car, I was approached by another parent. Moo has really become more independent since he got his powerchair, she said to me. I was about to mumble something about being stubborn or his independence not being a good thing, but I stopped.  There was more that this woman wanted... Terrible Palsy blogs http://www.medworm.com/rss/comments.php?id=1837203 Mon, 29 Sep 2008 09:29:23 +0100 1837203 http://www.medworm.com/index.php?rid=1809779&cid=t_110013_87_f&fid=34935&url=http%3A%2F%2Fmedicine.com.my%2Fwp%2F%3Fp%3D4571 I have my reservations about Virtual colonoscopy though. Firstly, Virtual colonoscopy still requires a bowel prep which is often the most uncomfortable bit of regular colonoscopy - not the scope procedure itself. Secondly, even if a polyp is found, one needs a tissue diagnosis, so a regular scope is needed anyway. a CT Colonography Equally Effective as Colonoscopy, Antibiotics During Preterm Labor Raise Cerebral Palsy Risk, Sun Tanning Leads to DNA Damage (Source: Malaysian Medical Resources) Malaysian Medical Resources blogs http://www.medworm.com/rss/comments.php?id=1809779 Sat, 20 Sep 2008 04:00:00 +0100 1809779 http://www.medworm.com/index.php?rid=1763919&cid=t_110013_129_f&fid=34885&url=http%3A%2F%2Fterriblepalsy.wordpress.com%2F2008%2F09%2F05%2Fscared%2F Yes, I have been a quiet blogger.  A couple of weeks ago, I was notified by email by another blogger that she had seen photos of Sumo posted on a web-site.  Sure enough, she was right and someone had been trying to pass off Sumo as her own child.  The ironic thing is, she was trying to pass my big full term boy baby off as a micro premmie baby girl.  Hmmm.  Not even close. But anyway. I’ve been quietly thinking about what to do about the blog and how to discretely watermark photos.  As you can tell by the lack of photos with this post - I haven’t quite worked it out yet.  Anyone have any idea? Today has been a bad day.    Just when you think you’ve had your limit, something else gets thrown into the arena.   Hubby and I had a fight at lunch time.   About silly ... Terrible Palsy blogs http://www.medworm.com/rss/comments.php?id=1763919 Fri, 05 Sep 2008 10:34:11 +0100 1763919 http://www.medworm.com/index.php?rid=1754718&cid=t_110013_87_f&fid=34935&url=http%3A%2F%2Fmedicine.com.my%2Fwp%2F%3Fp%3D4318 Magnesium Sulphate & Cerebral Palsy, Beta-Amyloid & Brain Injury, Antipsychotic Drugs & Stroke Risk a Magnesium Sulphate & Cerebral Palsy, Beta-Amyloid & Brain Injury, Antipsychotic Drugs & Stroke Risk (Source: Malaysian Medical Resources) Malaysian Medical Resources blogs http://www.medworm.com/rss/comments.php?id=1754718 Tue, 02 Sep 2008 04:00:00 +0100 1754718 http://www.medworm.com/index.php?rid=1668418&cid=t_110013_129_f&fid=34885&url=http%3A%2F%2Fterriblepalsy.wordpress.com%2F2008%2F07%2F31%2Fwhat-makes-a-champion%2F CP Awareness week is coming up.   The Spastic Centre of New South Wales (and yes, it is really called that) has launched the Celebrate CP Champions campaign.  You can find video here and below is their community service campaign.     Whilst the footage is incredibly cute, is it sending the right message?  To be quite honest, I would have liked it to have shown a kid using a communication device to say what s/he wants to be when she grows up.   A picture of the bus shelter ads for the CP Champions Campaign Has the CP Champions Campaign (linked video) put us back a few years language wise?  It makes me feel like banging my head against the wall when I’ve spent a good amount of time expressing to everyone who I can find to listen to me how important language is. A person with c... Terrible Palsy blogs http://www.medworm.com/rss/comments.php?id=1668418 Thu, 31 Jul 2008 09:01:32 +0100 1668418 http://www.medworm.com/index.php?rid=1582981&cid=t_110013_133_f&fid=35096&url=http%3A%2F%2Ffeeds.b5media.com%2F%7Er%2Fb5media%2FAutismVox%2F%7E3%2F328656937%2F While traveling from Detroit to Seattle on Southwest Airlines, a mother with four children, one who has autism and another who has cerebral palsy, and her five-month pregnant sister were stranded in Phoenix after being told they were “too disruptive” to continue on a connecting flight to Seattle. Wendy Slaughter acknowledged that her children were “loud and kept getting up and walking around the plane.” KIRO reports about what happened on Friday: When the family landed in Phoenix they were met at the gate by police officers, detained and told they were too disruptive to get on their connecting flight to Seattle, Slaughter said. Slaughter said they were left stranded at the Phoenix airport with no money and no lodging. This was the first flight for the children. Slau... Autism Vox blogs http://www.medworm.com/rss/comments.php?id=1582981 Mon, 07 Jul 2008 07:00:20 +0100 1582981 http://www.medworm.com/index.php?rid=1531378&cid=t_110013_133_f&fid=35096&url=http%3A%2F%2Ffeeds.feedburner.com%2F%7Er%2Fb5media%2FAutismVox%2F%7E3%2F315051596%2F Kendall Bailey is 19 years old, 6 foot 6, and a champion swimmer headed for the Paralympics in Beijing this September—–but he was almost rendered ineligible by the United States itself. Bailey has cerebral palsy, mental retardation, autism, and Klinefelter’s syndrome, which prevents his body from producing testosterone. Today’s New York Times profiles his dream to swim in the Paralympics and the efforts of his mother, Connie Shaw, to make sure that this happens: Kendall Bailey is a rare case of a mentally disabled athlete who also has the physical disabilities to qualify him for the Paralympics. But in April, amid confusion about how disabled athletes are classified both before and during the Games, officials who oversee the American team on behalf of the United States ... Autism Vox blogs http://www.medworm.com/rss/comments.php?id=1531378 Thu, 19 Jun 2008 01:25:03 +0100 1531378 http://www.medworm.com/index.php?rid=1451804&cid=t_110013_129_f&fid=34885&url=http%3A%2F%2Fterriblepalsy.wordpress.com%2F2008%2F05%2F19%2Fmiserable%2F To the person who searched “dealing with the miserable parents of handicapped children” and got this blog - Welcome!  Have a read!  I hope you enjoy the blog:-)  This story is kinda long, so I’m going to do it in parts.  The first part started when my good friend Active Voice asked me if I was going to do a submission to the Parliamentary Secretary for Disability Services.   Sure.  Why not. My problem is that if I don’t do things straight away, I never get around to doing them.  So I sat down and blurted the whole letter out there and then.  This is what I wrote:- Dear Mr S, I write to you today to express my concerns of the current state and federal situation when it comes to anything disability related in our society. I am the incredibly proud mum to f... Terrible Palsy blogs http://www.medworm.com/rss/comments.php?id=1451804 Mon, 19 May 2008 10:14:28 +0100 1451804 http://www.medworm.com/index.php?rid=1386824&cid=t_110013_129_f&fid=34885&url=http%3A%2F%2Fterriblepalsy.wordpress.com%2F2008%2F04%2F21%2Fdecisions-2%2F There has been times in the past where I have been stuck by indecision.  I have wondered whether the choices I make on Moo’s behalf are the “right” ones.  Whether I am doing enough for him?  Or, whether I am doing too much for him?  Do we focus on his physical limitations instead of focusing on his cognitive strengths?  Should I be getting him a pony walking frame?  Should he be stretched more?  Should I insist he wears leg wraps at night?   I’ve heard many times people use the phrase “Mummy knows best”.  Unfortunately, if this was true then there wouldn’t be children put into foster homes because parents can’t cope.  I know of two kids who have disabilities in our suburb who fall into this category.  And to be honest, I can site h... Terrible Palsy blogs http://www.medworm.com/rss/comments.php?id=1386824 Mon, 21 Apr 2008 00:28:23 +0100 1386824 http://www.medworm.com/index.php?rid=1352050&cid=t_110013_129_f&fid=34885&url=http%3A%2F%2Fterriblepalsy.wordpress.com%2F2008%2F04%2F05%2Fjust-like-any-other-kid%2F I’m not sure why I don’t have my camera on me at really important, ground breaking times in Moo’s life.  I wish I had taken it today to swimming lessons so you could all see what I’m talking about. So, the boys changed from having swimming lessons on Wednesdays to Saturdays due to a mix of Master C starting school and me trying to deal with all the work issues I face.  The only times available for swim lessons on Saturday was either 7am or 12.15pm.  In a moment of madness, hubby chose 7am. After weeks of trying to somehow get to the swim school by 7am each and every Saturday morning, I finally admitted defeat.  I just couldn’t do it.  No matter how early I would wake up, the universe would work against me and we would be late.  Yet again.   As luck woul... Terrible Palsy blogs http://www.medworm.com/rss/comments.php?id=1352050 Sat, 05 Apr 2008 09:55:51 +0100 1352050 http://www.medworm.com/index.php?rid=1194811&cid=t_110013_97_f&fid=35050&url=http%3A%2F%2Ffeeds.feedburner.com%2F%7Er%2FPharmaGazette%2F%7E3%2F227398933%2Fmagnesium_sulfate_may_cut_the_risk_of_cerebral_palsy.html Doctors claim that administering magnesium sulfate just before birth can cut the risk of cerebral palsy in half for premature babies. Magnesium sulfate is used to treat high blood pressure due to pregnancy and to stop early labor. Now the benefits are being weighed for the administration to premature babies. Cerebral palsy, a complication due to premature birth, (infants born before 37 weeks), is caused by damage to the parts of the brain responsible for motor control and coordination. How does magnesium sulfate work to prevent the damage to the brain? Doctors say that it “opens up blood vessels” in the brain. In a study of women whose water broke early, administering the compound reduced the likelihood of cerebral palsy in half. Those who received the compound were compared to... PharmaGazette blogs http://www.medworm.com/rss/comments.php?id=1194811 Fri, 01 Feb 2008 18:00:18 +0100 1194811 http://www.medworm.com/index.php?rid=1136866&cid=t_110013_129_f&fid=34885&url=http%3A%2F%2Fterriblepalsy.wordpress.com%2F2008%2F01%2F09%2Finspiration-is%2F Hubby and I had a bad day in Court yesterday. Our easy day turned into a very long, painful day doing a lengthy job that we weren’t expecting. I had spent the majority of the morning trying to find another Lawyer to give her a fax for one of her client’s. She had gone AWOL, so I kept on popping back into the Court where she was supposed to be to see whether she had shown. Eventually, after lunch, she did show up and when I found her I lost all concentration of what I was saying. Trailing her was a young man. A well dressed young man with a grin on his face from ear to ear. I should add that it isn’t unusual to see people around the Court tagging other Lawyers. To be a Lawyer in Australia, you have to either complete articles of clerkship (which is like a traineeship) or a... Terrible Palsy blogs http://www.medworm.com/rss/comments.php?id=1136866 Tue, 08 Jan 2008 23:07:47 +0100 1136866 http://www.medworm.com/index.php?rid=1065823&cid=t_110013_129_f&fid=34885&url=http%3A%2F%2Fterriblepalsy.wordpress.com%2F2007%2F12%2F03%2Fthe-story-of-the-other-moo-the-story-continues%2F Susan has finished her last part in record time (sorry Rae if you’re checking back some time after this publishes). You can find the previous parts here:- Part 1 Part 2 Part 3 Susan continues - And so we brought Molly home. My poor, hurt, broken little baby girl. With no words of encouragement or advice – just a referral to the local CP service provider, a list of follow-up specialist appointments and an application for a publicly-funded wheelchair pram. Certainly with no “plan”. We were on our own. And to this day we still are. Adrift on the ocean of severe traumatic brain injury, without a compass. At times it was difficult to even keep sight of each other, let alone know which direction to go in. Somehow the days and weeks passed – as we tried desperately to comfort, sett... Terrible Palsy blogs http://www.medworm.com/rss/comments.php?id=1065823 Mon, 03 Dec 2007 04:33:23 +0100 1065823 http://www.medworm.com/index.php?rid=1045090&cid=t_110013_129_f&fid=34885&url=http%3A%2F%2Fterriblepalsy.wordpress.com%2F2007%2F11%2F22%2Fwatch-me%2F In case you missed the links that Dawn posted - this is actually what I was looking for when I posted the other you-tube piece on See the person not the disability. Find out more about Creature Discomforts here. I wish Australia had a campaign like this. Anyone clever enough to take this on? A great big thanks to Dawn for pointing me in the right direction. (Source: Terrible Palsy) Terrible Palsy blogs http://www.medworm.com/rss/comments.php?id=1045090 Thu, 22 Nov 2007 05:47:10 +0100 1045090 http://www.medworm.com/index.php?rid=1019360&cid=t_110013_129_f&fid=34885&url=http%3A%2F%2Fterriblepalsy.wordpress.com%2F2007%2F11%2F12%2Fjust-a-minute-is-60-seconds-too-long%2F Enough said. (Source: Terrible Palsy) Terrible Palsy blogs http://www.medworm.com/rss/comments.php?id=1019360 Sun, 11 Nov 2007 23:30:43 +0100 1019360 http://www.medworm.com/index.php?rid=993191&cid=t_110013_129_f&fid=34885&url=http%3A%2F%2Fterriblepalsy.wordpress.com%2F2007%2F10%2F31%2Fthe-story-of-the-other-moo-part-3%2F If you are coming into this late, here is Part 1 and Part 2. Susan continues her story:- Apologies for the delay to those who have been waiting - I have found this Part 3 quite difficult to write… How to sum up the 17 most horrendous weeks of my life in less than 1000 words?? Molly was initially in ICU for 16 days. During this time she was slowly allowed to ‘wake’ (become conscious and breathe on her own) and just the day before being transferred to the ward had her third neurosurgery - to insert a permanent shunt, which drains the fluid from her brain into her belly. A shunt is needed when, for whatever reason, a person’s brain fluid (CSF) doesn’t adequately drain/circulate and builds up in their brain causing excess pressure. In theory it is a relatively simple ... Terrible Palsy blogs http://www.medworm.com/rss/comments.php?id=993191 Wed, 31 Oct 2007 07:25:10 +0100 993191 http://www.medworm.com/index.php?rid=954025&cid=t_110013_129_f&fid=34885&url=http%3A%2F%2Fterriblepalsy.wordpress.com%2F2007%2F10%2F16%2Fdid-i-say-that%2F Interesting story going around on the feeds that Colin Farrell has admitted that his son has Angelman Syndrome, apparently a rare form of congenital CP. Apparently, this is his dark secret. You know how the drill goes - yada yada yada . . . press sucks . . . yada yada yada . . . stereotypes . . . yada yada yada . . . positives not negatives . . . yada yada yada . . . miracle or pity . . . blah blah blah. To be honest, the skeptical side of me says of course it has to be a rare form of CP because a cele-brit-ies’ kid can’t have the regular everyday spastic form of CP that everyone else’s kids have (please forward all complaints to idon’tcare@yahoomail.com). I did say that is the skeptical side of me. The other side of me ignores the skeptic and thinks Colin is just a... Terrible Palsy blogs http://www.medworm.com/rss/comments.php?id=954025 Tue, 16 Oct 2007 10:34:11 +0100 954025 http://www.medworm.com/index.php?rid=939783&cid=t_110013_129_f&fid=34885&url=http%3A%2F%2Fterriblepalsy.wordpress.com%2F2007%2F10%2F10%2Fwhen-will-we-learn%2F Emma has written about the continuity of the Ashley treatment in the UK. It seems that now girls with CP should be steralized because getting your period would be disturbing to the child. Kathryn correctly summises that this is a feminist issue. It is also one that should also concern all of us. We live in one of the colonies - if it is possible in the UK, then theoretically, Australia is not that far behind. Maybe it’s already happening here and just being swept under the carpet. Temple U does a round up of other blogs that have covered the issue. Sit back and have a read. It’s scary stuff. (Source: Terrible Palsy) Terrible Palsy blogs http://www.medworm.com/rss/comments.php?id=939783 Wed, 10 Oct 2007 02:27:56 +0100 939783 http://www.medworm.com/index.php?rid=906066&cid=t_110013_129_f&fid=34885&url=http%3A%2F%2Fterriblepalsy.wordpress.com%2F2007%2F09%2F27%2Fresentment%2F With the other kids, everything else has been so easy. I can be the laid-back parent I really want to be. I don’t have to wonder and agonise over every mouth of food they eat, every breath, a sneeze, a cough, a complaint of a sore head. When he did he do his last lot of number 2s? How much he has grown/put on weight since his last check up? Is his scissoring getting worse? The AFOs. The equipment. The wheelchair. The leaving the house and making sure I have everything that I could possibly need. Whether he participates properly in external activities. Is his speech clear enough for others to understand? Has he had enough food? Enough water? Is this activity beneficial to him? Is this a good position for him to be in? And the list goes on and on . . . I started this post some time ... Terrible Palsy blogs http://www.medworm.com/rss/comments.php?id=906066 Thu, 27 Sep 2007 00:12:18 +0100 906066 http://www.medworm.com/index.php?rid=894173&cid=t_110013_129_f&fid=34885&url=http%3A%2F%2Fterriblepalsy.wordpress.com%2F2007%2F09%2F24%2Fcopycat%2F (Source: Terrible Palsy) Terrible Palsy blogs http://www.medworm.com/rss/comments.php?id=894173 Mon, 24 Sep 2007 11:12:19 +0100 894173 http://www.medworm.com/index.php?rid=833396&cid=t_110013_129_f&fid=34885&url=http%3A%2F%2Fterriblepalsy.wordpress.com%2F2007%2F08%2F31%2Fthe-early-years%2F I haven’t done this before. It took me ages. (Source: Terrible Palsy) Terrible Palsy blogs http://www.medworm.com/rss/comments.php?id=833396 Fri, 31 Aug 2007 02:09:25 +0100 833396 http://www.medworm.com/index.php?rid=823016&cid=t_110013_129_f&fid=34885&url=http%3A%2F%2Fterriblepalsy.wordpress.com%2F2007%2F08%2F27%2Fis-honesty-the-best-policy%2F It took me four months to complete and submit our application to Disability Services for ongoing support/family support program as well as an alternative one-off application for equipment. To date, we have bought all of Moo’s equipment, save for a couple hundred dollar donation towards Moo’s wheelchair. We have paid a considerable amount on private therapy, travel to and from hospitals, alternative therapies, nutritional supplements, osteopathic treatments and the like. The money for which doesn’t grow on trees and we are for the most part, a one income family. And despite our profession, we really don’t earn as much as you think we do. I remember discussing income once with one of our private therapists who was shocked at my hourly rate (back in the old days when ... Terrible Palsy blogs http://www.medworm.com/rss/comments.php?id=823016 Mon, 27 Aug 2007 00:11:45 +0100 823016 http://www.medworm.com/index.php?rid=817607&cid=t_110013_129_f&fid=34885&url=http%3A%2F%2Fterriblepalsy.wordpress.com%2F2007%2F08%2F23%2Fill-do-it-myself%2F Glenda Watson Hyatt is an amazing woman and someone I would like you to meet. She is presently on a virtual tour to promote her new book “I’ll do it myself“. In her book, she shares her experiences in living with cerebral palsy to motivate and inspire others to think about how they perceive their own situation and their own world around them. Her virtual tour made a brief stop to the land down under where she answered 5 question for me:- Tell us how you met your husband I graduated with my Bachelor of Arts in April 1995. By January I still hadn’t found a job; employers had unspoken qualms about hiring someone with a physical disability. So, I reluctantly began a pre-employment program for people with disabilities at the then Neil Squire Foundation . Surprisingly, I... Terrible Palsy blogs http://www.medworm.com/rss/comments.php?id=817607 Thu, 23 Aug 2007 01:50:33 +0100 817607 http://www.medworm.com/index.php?rid=809599&cid=t_110013_129_f&fid=34885&url=http%3A%2F%2Fterriblepalsy.wordpress.com%2F2007%2F08%2F20%2Fprivacy%2F My husband works in criminal defence law. He has some interesting client’s and some very creepy ones. In the past, he has represented some kiddy fiddlers. This makes me uncomfortable. It makes me uncomfortable to know that these people exist. And yet I know they do as I see the search terms that some people use to find this site. I also see the mountains of SPAM containing links to undesirable sites. I sometimes wonder whether I should make this site private to protect the kids from the undesirables. Recently, Moo has been having some problems in the nappy area. This is one of the main reasons why we have gone back to have botox again. Just getting his legs that little bit further apart helps with the hygiene status downstairs. I was once in a discussions where someone (whose name i... Terrible Palsy blogs http://www.medworm.com/rss/comments.php?id=809599 Mon, 20 Aug 2007 03:10:47 +0100 809599 http://www.medworm.com/index.php?rid=801387&cid=t_110013_129_f&fid=34885&url=http%3A%2F%2Fterriblepalsy.wordpress.com%2F2007%2F08%2F16%2Fwheelie-obvious%2F A funny thing happened when we went out with Moo in the wheelchair for the first time. As I got it out of the car, I had one of those moments. A moment where I had to take a big deep breath. This is it. There is security in using the stroller. We blend into the crowds. We just look like a crazy family with too many children. With the wheelchair . . . Moo got a lot of comments from complete strangers as to how cool his chair was. You could see his chest puff out that little bit more. The push bar for the chair has a setting which allows Master C to push Moo. And Moo loves Master C pushing him. And I felt like my secret was out. It was scary but also liberating. I was no longer hiding anything from anybody. This is my son. I don’t need nor want your pity. See how happy we are. And ye... Terrible Palsy blogs http://www.medworm.com/rss/comments.php?id=801387 Wed, 15 Aug 2007 21:30:15 +0100 801387 http://www.medworm.com/index.php?rid=795111&cid=t_110013_129_f&fid=34885&url=http%3A%2F%2Fterriblepalsy.wordpress.com%2F2007%2F08%2F13%2Fpay-it-forward%2F A few weeks ago, I was contacted by a person offering to give me a walking frame. Actually, not just any walking frame. The exact same walking frame that we would buy for Moo if we had the money. It didn’t seem to matter to this lady that we lived on the other side of the globe. She wanted us to have it. This a woman who does nothing by halves. I thought about politely declining. Part of me still thought that there would be a defining event that would stop it from happening. So, gratefully, I accepted the offer and went with the universe to see how far we would get. There were a couple of false starts. A couple of hiccups. But it showed up and looks fabulous! Moo is playing “shoot ‘em” with his G-Dad in the photo. Yes, I know. Somewhere along the line the kids got... Terrible Palsy blogs http://www.medworm.com/rss/comments.php?id=795111 Mon, 13 Aug 2007 06:51:50 +0100 795111 http://www.medworm.com/index.php?rid=788184&cid=t_110013_129_f&fid=34885&url=http%3A%2F%2Fterriblepalsy.wordpress.com%2F2007%2F08%2F09%2Fkickers%2F You may remember my previous post about Moo’s swimming lessons. Sadly, Moo’s swim teacher has retired. But he is still going great guns with his new teacher. I never thought I would see him kick like this! (Source: Terrible Palsy) Terrible Palsy blogs http://www.medworm.com/rss/comments.php?id=788184 Wed, 08 Aug 2007 22:06:38 +0100 788184 http://www.medworm.com/index.php?rid=742600&cid=t_110013_129_f&fid=34885&url=http%3A%2F%2Fterriblepalsy.wordpress.com%2F2007%2F07%2F19%2Fsmall-steps%2F The crazy thing about the therapy that we are doing is that it is literally like two steps forward, one step backwards, two steps forward, one step backwards. I took him to a new, different Osteopath on Monday. Master C, being typical Master C, had a treatment too. Turns out Master C doesn’t have huge range of movement in his hips but osteo thinks that it is muscular in nature as he can do other things that he wouldn’t be able to do if he had a hip problem. He then looked at Moo and I learnt more about cranial sacral talking to him than I ever have with any other therapist. Apparently Moo took a lot longer to release then a “normal” patient but he did in the end. He also did some adjustments in Moo’s back. Moo hasn’t been complaining about having the ABR... Terrible Palsy blogs http://www.medworm.com/rss/comments.php?id=742600 Wed, 18 Jul 2007 23:16:09 +0100 742600 http://www.medworm.com/index.php?rid=714710&cid=t_110013_129_f&fid=34885&url=http%3A%2F%2Fterriblepalsy.wordpress.com%2F2007%2F07%2F05%2Fwhere-art-thou-wheelchair%2F Honestly, I am never ever ever ever using the supplier again. So the saga continues. Just a recap. So, having decided that the walking frame isn’t going to work so well given the expense, we decided to investigate Moo’s wheelchair options with our physio. As luck had it, a wheelchair clinic was coming up in two weeks, so we put Moo’s name down and handed over links to wheelchairs that we thought could be suitable. Chickie turns up for wheelchair clinic with our physio. Turns out that she didn’t bring any chairs small enough for Moo. She mumbled something about him being smaller than a normal three year old. Next wheelchair clinic is in another month. I thought okay. Be patient. Though it was becoming obvious that we needed something as it was no longer practical for... Terrible Palsy blogs http://www.medworm.com/rss/comments.php?id=714710 Wed, 04 Jul 2007 23:54:01 +0100 714710 http://www.medworm.com/index.php?rid=692357&cid=t_110013_129_f&fid=34885&url=http%3A%2F%2Fterriblepalsy.wordpress.com%2F2007%2F06%2F23%2Fadaptive-equipment%2F So we are at playgroup. It’s morning tea time. Because I have 3 kids with me, it takes me a while to get Moo to the table to have his morning tea. By the time I get him to the table, there are no seats left. Well. Actually. That isn’t true. There is about half a dozen seats left. Half a dozen ordinairy seats. None of which he could possibly sit in. The three box seats that a child with CP usually needs, are taken up with children who do not have CP. In fact, none of the kids sitting in the box seats had a physical disability. Just in case you don’t know what a box seat is - it is probably one of the ugliest chairs you will ever see. It is literally a wooden box but has a pole that comes up through the bottom of the seat which is situated between the kid’s legs. The ... Terrible Palsy blogs http://www.medworm.com/rss/comments.php?id=692357 Sat, 23 Jun 2007 10:44:19 +0100 692357 http://www.medworm.com/index.php?rid=675605&cid=t_110013_129_f&fid=34885&url=http%3A%2F%2Fterriblepalsy.wordpress.com%2F2007%2F06%2F12%2Fnational-premmie-day%2F Today is National Premmie Day. I’m going to lock myself in the house cause it is sure to be a day full of disappointments. Did I tell you that I hate hearing miracle prem stories? I wanted to take a moment to remember some precious babies. The babies who may not be anyone elses miracle but were and are miracles to their parents. The prems that fought so hard but had the odds stacked against them. The ones who sometimes, have no chance despite being loved and wanted so much. In particular today I want to remember the beautiful GG. The prems that now live with multiple disabilities though have smiles that warm even the coldest of hearts. That face hurdle after hurdle and continue to amaze us all. The prems that have made their families and friends appreciate the small things in life... Terrible Palsy blogs http://www.medworm.com/rss/comments.php?id=675605 Mon, 11 Jun 2007 23:45:46 +0100 675605 http://www.medworm.com/index.php?rid=675609&cid=t_110013_129_f&fid=34885&url=http%3A%2F%2Fterriblepalsy.wordpress.com%2F2007%2F06%2F07%2Fssshhh-its-important%2F Billie doesn’t need site traffic from me. By the number of comments she gets her numbers must be phenomenal. And for good reason. Holland and Eden are so gorgeous. But she wrote something that is so true. So heartfelt. That I wanted anybody who didn’t get the chance to have a read of this. (Source: Terrible Palsy) Terrible Palsy blogs http://www.medworm.com/rss/comments.php?id=675609 Thu, 07 Jun 2007 00:37:42 +0100 675609 http://www.medworm.com/index.php?rid=645000&cid=t_110013_129_f&fid=34885&url=http%3A%2F%2Fterriblepalsy.wordpress.com%2F2007%2F05%2F30%2Fproto-type-26%2F Looks good, doesn’t it? Thanks very much G-Dad. (Source: Terrible Palsy) Terrible Palsy blogs http://www.medworm.com/rss/comments.php?id=645000 Wed, 30 May 2007 04:37:16 +0100 645000 http://www.medworm.com/index.php?rid=638029&cid=t_110013_129_f&fid=34885&url=http%3A%2F%2Fterriblepalsy.wordpress.com%2F2007%2F05%2F25%2Fregrets%2F The thing about the written word is this - you can easily be misunderstood. I really don’t dwell on things as much as you may think that I do. And sometimes, my sarcasm may not come across. Though I think I can take a few hints from Dooce on this issue (yes, I read Dooce as well like everyone else on this planet). I do have some small regrets. And I wanted to share them in case you (dear reader) are a Mum of a newly diagnosed child with CP, or perhaps a Mum (or Dad) of a child at risk of CP. It all arose from this. I love it. I want one for Moo - but like two years ago. I agree with the concept of learned helplessness. It’s not that I think our kids don’t have limitations from their disability. Clearly they do. But I have spent a great deal of time over the last three yea... Terrible Palsy blogs http://www.medworm.com/rss/comments.php?id=638029 Thu, 24 May 2007 23:13:15 +0100 638029 http://www.medworm.com/index.php?rid=587920&cid=t_110013_129_f&fid=34885&url=http%3A%2F%2Fterriblepalsy.wordpress.com%2F2007%2F05%2F03%2Fthe-wrong-side-of-the-street-part-2%2F The first part of this post is below. Or if you suffer from failure to scroll - here. You may be at this stage saying to yourself - why did she call this post the wrong side of the street? Mmmm. When you have a child with CP, you know that seizures are a possiblity. I don’t know the statistics, but a fair few of kids with CP have seizures. Many moons ago, I was told by someone (can’t remember who, but a medical professional), that if we made 3 years old without seizures then we were pretty much set that Moo would be seizure free indefinitely. So I was counting days - literally. Just after the two year mark, I met a family where their son (who has CP) had his first seizure after the age of 3. What? Crap. So another medical professional told me that the magic goalpost wasn&#821... Terrible Palsy blogs http://www.medworm.com/rss/comments.php?id=587920 Thu, 03 May 2007 06:07:56 +0100 587920 http://www.medworm.com/index.php?rid=587921&cid=t_110013_129_f&fid=34885&url=http%3A%2F%2Fterriblepalsy.wordpress.com%2F2007%2F05%2F02%2Fthe-wrong-side-of-the-street%2F You do know that we are Australians - don’t you? I understand that Aussies are known for their slang. While we aren’t throwing shrimp on the bar-bee (we call them prawns and it is a B-B-Q), we do use a lot of slang in our everyday language. This may be a bit annoying to you all. We have this saying about putting the mocka on someone/something. It is used like - don’t put the mocka on me. The only way I can explain it, is that it envokes Murphy’s Law. That if you say something, then the opposite and what you don’t want to have happen, will occur. I suppose it is one way to describe a stupid superstition. Anyway. Yesterday, I put the mockas on myself. I was having lunch with a dear old friend that I used to work with many years ago. She asked all the mandatory ... Terrible Palsy blogs http://www.medworm.com/rss/comments.php?id=587921 Wed, 02 May 2007 08:26:47 +0100 587921 http://www.medworm.com/index.php?rid=548772&cid=t_110013_129_f&fid=34885&url=http%3A%2F%2Fterriblepalsy.wordpress.com%2F2007%2F04%2F17%2Fanother-one-bites-the-dust%2F You know what I am really sick of? Really, really sick of? I’m sick of being made to feel like Moo is half a person. That I should be grateful for what (little) services we get. Made to feel like Moo isn’t entitled to ordinary services/facilities that every other abled person takes for granted in this stupid world. And I’m sick of everything being a fight. I’m a lawyer. I do litigation. I sue people for a living. And I’m sick of fighting. Today, Moo’s (insert number here cause I lost count) carer told me that it was her last day. She couldn’t handle the strain of her job. That’s fine, cause Moo wasn’t the only child she “cared” for and apparently it was the other kid that was the problem (yeah right, I believe you). It&#8217... Terrible Palsy blogs http://www.medworm.com/rss/comments.php?id=548772 Tue, 17 Apr 2007 07:15:51 +0100 548772 http://www.medworm.com/index.php?rid=544284&cid=t_110013_133_f&fid=35100&url=http%3A%2F%2Fhardwonwisdom.blogspot.com%2F2007%2F04%2Fputting-feelers-out-for.html I know y'all are empathetic, as per Joel's post (what is it that makes me think "oxymoron" about a post there...snark)....but what I need is so very specific that sending me to dig through web-sites would be no help. I am looking for a needle in a haystack, and am putting out feelers to groups I belong to."Betty" can see two inch letter fourteen inches from her face. In order to communicate independently, she needs access to a switch driven super-duper-extra-large keyboard software program. Forget this $14,000 pec's-com device...If you got the time, she's got the mind!And now for something totally unrelated, probably only understood by us old farts ...I am speaking directly to one of you when I say"...blessed are the cheesemakers...and all manufacturer's of dairy products." One of you brou... Hard Won Wisdom blogs http://www.medworm.com/rss/comments.php?id=544284 Sat, 14 Apr 2007 15:09:00 +0100 544284 http://www.medworm.com/index.php?rid=538374&cid=t_110013_129_f&fid=34885&url=http%3A%2F%2Fterriblepalsy.wordpress.com%2F2007%2F04%2F12%2Fscrew-holland-i-just-want-to-buy-my-kid-a-bike%2F There is actually a blog called Screw Holland. In case you haven’t read about Holland, you’ll find the story here. But what “Welcome to Holland” by Emily Perl Kingsley doesn’t tell you is that although Holland is all very nice and all, sometimes you just want to go home (as opposed to Italy where everyone else is). Like me, right now. On the weekend, we took Master C and Moo riding on our bikes. We have kiddy seats on the back and the boys enjoyed the rides. Master C is getting a bit big for the kiddy seat and we looked at buying him a bike with training wheels. When we left the store, Moo got really upset. He demanded that we go back right then and there and buy him a bike. I hate the fact that I can’t go and buy him a bike. That I just can’t g... Terrible Palsy blogs http://www.medworm.com/rss/comments.php?id=538374 Thu, 12 Apr 2007 02:37:45 +0100 538374 http://www.medworm.com/index.php?rid=522131&cid=t_110013_133_f&fid=35096&url=http%3A%2F%2Ffeeds.b5media.com%2F%7Er%2Fb5media%2FAutismVox%2F%7E3%2F106657619%2F Yes, rocking horse therapy—-I guess one might refer to this as “indoor hippotherapy,” on a specially designed, giant-size (5 by 6 feet) horse (able to hold a Texas state representative……). As reported in today’s Shreveport Times, the Texas Executive Rocking Horse creations are being used in a physical therapy program for disabled children in a hospital in Shreveport, Louisiana: Children with cerebral palsy, spina bifida, orthopedic injuries, muscular dystrophy, developmental delays, autism and other disabilities are benefiting and loving the new tool. “One of the first things many of the children ask is if they can get on the horse,” said Lisa Morse, a physical therapist at Christus Schumpert [St. Mary Place]. “They can use it for head... Autism Vox blogs http://www.medworm.com/rss/comments.php?id=522131 Wed, 04 Apr 2007 19:19:01 +0100 522131