Costello Syndrome (G12A), History of Neuroblastoma, Enlarged Heart, Laryngo & Tracheomalcia, Severe sleep apnea, severe Reflux/GERD, optic Nerve Hypoplasia (mostly blind) (by ShannonK)
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Mr. Snuggles- Zane Leland Madaus | Costello Syndrome (G12A), History of Neuroblastoma, Enlarged Heart, Laryngo & Tracheomalcia, Severe sleep apnea, severe Reflux/GERD, optic Nerve Hypoplasia (mostly blind) | zaneleland.wordpress.com Reviews
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Costello Syndrome (G12A), History of Neuroblastoma, Enlarged Heart, Laryngo & Tracheomalcia, Severe sleep apnea, severe Reflux/GERD, optic Nerve Hypoplasia (mostly blind) (by ShannonK)
zaneleland.wordpress.com
Awareness Gear | Mr. Snuggles- Zane Leland Madaus
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Mr Snuggles- Zane Leland Madaus. Costello Syndrome (G12A), History of Neuroblastoma, Enlarged Heart, Laryngo and Tracheomalcia, Severe sleep apnea, severe Reflux/GERD, optic Nerve Hypoplasia (mostly blind). Gtube and Acid Reflux. How You Can Help. Laryngo and Trachea Malacia. What Mayo Clinic Did For Us. 8211; a portion benefits Zane’s fund. Neuroblastoma- The Sierra Rayn Foundation. Silicone wristbands, car decals, car magnets, tumbler, tshirt. Coping with Laryngomalacia, Inc. Leave a Reply Cancel reply.
Zane is doing soooo well! | Mr. Snuggles- Zane Leland Madaus
https://zaneleland.wordpress.com/2014/04/30/zane-is-doing-soooo-well
Mr Snuggles- Zane Leland Madaus. Costello Syndrome (G12A), History of Neuroblastoma, Enlarged Heart, Laryngo and Tracheomalcia, Severe sleep apnea, severe Reflux/GERD, optic Nerve Hypoplasia (mostly blind). Gtube and Acid Reflux. How You Can Help. Laryngo and Trachea Malacia. What Mayo Clinic Did For Us. Zane is doing soooo well! April 30, 2014. I am so sorry I have not updated Zane’s webpage in a very long time! Then I had issues with my battery cord not working! I thought we would never see the dayR...
ShannonK | Mr. Snuggles- Zane Leland Madaus
https://zaneleland.wordpress.com/author/zanesmom
Mr Snuggles- Zane Leland Madaus. Costello Syndrome (G12A), History of Neuroblastoma, Enlarged Heart, Laryngo and Tracheomalcia, Severe sleep apnea, severe Reflux/GERD, optic Nerve Hypoplasia (mostly blind). Gtube and Acid Reflux. How You Can Help. Laryngo and Trachea Malacia. What Mayo Clinic Did For Us. OMSLife Foundation Conference in Cinncinati, OH 2015. April 13, 2015. Read Article →. Zane is doing soooo well! April 30, 2014. I am so sorry I have not updated Zane’s webpage in a very long time! These ...
Opsoclonus Myoclonus Syndrome | Mr. Snuggles- Zane Leland Madaus
https://zaneleland.wordpress.com/oms
Mr Snuggles- Zane Leland Madaus. Costello Syndrome (G12A), History of Neuroblastoma, Enlarged Heart, Laryngo and Tracheomalcia, Severe sleep apnea, severe Reflux/GERD, optic Nerve Hypoplasia (mostly blind). Gtube and Acid Reflux. How You Can Help. Laryngo and Trachea Malacia. What Mayo Clinic Did For Us. Verdict from Mayo Clinic was that he does not have this… instead they found he has Optical Nerve Hypoplasia. Please read the “What Mayo Clinic Did for us” Page. Section to see why he was on an apnea moni...
Costello Syndrome | Mr. Snuggles- Zane Leland Madaus
https://zaneleland.wordpress.com/costello-syndrome
Mr Snuggles- Zane Leland Madaus. Costello Syndrome (G12A), History of Neuroblastoma, Enlarged Heart, Laryngo and Tracheomalcia, Severe sleep apnea, severe Reflux/GERD, optic Nerve Hypoplasia (mostly blind). Gtube and Acid Reflux. How You Can Help. Laryngo and Trachea Malacia. What Mayo Clinic Did For Us. Update: Zane tested positive for Costello Syndrome December 2012 … he has a G12A mutation. What is Costello Syndrome? Here is a good description I pulled off the Ryan Ellis Foundation. Well Zane will hav...
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yourcurseismymiracle.blogspot.com
Your Curse is My Miracle: August 2013
http://yourcurseismymiracle.blogspot.com/2013_08_01_archive.html
Your Curse is My Miracle. Monday, August 26, 2013. A Year in Review: The Third Year. Today is another milestone for Noah. His fourth birthday is today so I thought I would give a short recap of his third year. He had a few colds during the year and we had to adjust some vent settings but only had one really big sickness. He got walking pneumonia and had to be on his vent 24/7 for a few days. My oldest daughter, Beth, did travel volleyball this year. She was on the regional team and we traveled out of...
yourcurseismymiracle.blogspot.com
Your Curse is My Miracle: September 2013
http://yourcurseismymiracle.blogspot.com/2013_09_01_archive.html
Your Curse is My Miracle. Monday, September 30, 2013. The NICU experience is something I hope to never have again. We learned a lot during our 1 1/2 month stay there. We learned that the human spirit is strong; we learned that there are kind people everywhere; we learned that our girls are extremely compassionate; we learned that adversity makes us stronger; we learned many life lessons. The NICU didn't break us, it made us stronger. Subscribe to: Posts (Atom). View my complete profile.
yourcurseismymiracle.blogspot.com
Your Curse is My Miracle: August 2014
http://yourcurseismymiracle.blogspot.com/2014_08_01_archive.html
Your Curse is My Miracle. Monday, August 25, 2014. A Year in Review- The Fourth Year. Noah enjoying his birthday cake. Noah at Chuck E. Cheese. Another fun thing Noah did was to ride on Thomas the Train. He loves trains and every year Thomas comes to visit our local train station. They have a lot of fun activities related to trains. He was very excited to be able to see Thomas. Noah after his trach surgery. Coach Noah and the volleyball team. Noah and Thomas the Train. Thursday, August 21, 2014. I really...
yourcurseismymiracle.blogspot.com
Your Curse is My Miracle: June 2014
http://yourcurseismymiracle.blogspot.com/2014_06_01_archive.html
Your Curse is My Miracle. Tuesday, June 3, 2014. Another decision we have made is whether to do the diaphragm pacer surgery. This was not that difficult for us to decide. This is not our decision to make, it is Noah's. A diaphragm pacer would be implanted on his diaphragm. This device would be used in place of a ventilator. At first, it sounds like a perfect idea. So what are we waiting for? How is he going to be able to go off alone and live in a dorm? Subscribe to: Posts (Atom). My name is Melinda and ...
yourcurseismymiracle.blogspot.com
Your Curse is My Miracle: A Year in Review--The Fourth Year
http://yourcurseismymiracle.blogspot.com/2014/08/a-year-in-review-fourth-year.html
Your Curse is My Miracle. Monday, August 25, 2014. A Year in Review- The Fourth Year. Noah enjoying his birthday cake. Noah at Chuck E. Cheese. Another fun thing Noah did was to ride on Thomas the Train. He loves trains and every year Thomas comes to visit our local train station. They have a lot of fun activities related to trains. He was very excited to be able to see Thomas. Noah after his trach surgery. Coach Noah and the volleyball team. Noah and Thomas the Train. Subscribe to: Post Comments (Atom).
yourcurseismymiracle.blogspot.com
Your Curse is My Miracle: January 2014
http://yourcurseismymiracle.blogspot.com/2014_01_01_archive.html
Your Curse is My Miracle. Friday, January 10, 2014. A Few Things I Have Learned from CCHS. 1 Don't compare- Don't compare your special needs child with your other children. It's so hard not to compare, especially when looking at those baby milestones. Instead of focusing on what your special needs child is not doing focus on what they CAN do. Embrace every milestone and celebrate their accomplishments. 6 Do the research- Living with a rare disease means that doctors do not know much about CCHS unless we ...
yourcurseismymiracle.blogspot.com
Your Curse is My Miracle: September 2014
http://yourcurseismymiracle.blogspot.com/2014_09_01_archive.html
Your Curse is My Miracle. Friday, September 5, 2014. For the NICU Mom. To the NICU mom. I see you. I get it. 5 years ago I was in your shoes. You walk in to the nicu. You would expect that a room full of babies would be loud. You'd expect to hear baby cries, coos, hear the babies moving around. But there is none of that. All you hear is the soft sounds of machines. Hear the occasional beeps of a monitor. It's completely silent. How can you bond with a baby who is always asleep every time you visit? Every...
yourcurseismymiracle.blogspot.com
Your Curse is My Miracle: August 2015
http://yourcurseismymiracle.blogspot.com/2015_08_01_archive.html
Your Curse is My Miracle. Thursday, August 13, 2015. The CCHS community is in mourning now. A young mother with two small children had CCHS. She somehow went to sleep without hooking herself up to her ventilator and passed away. I did not know her and had no interactions with her but somehow it has hit me hard. I can't imagine the pain her family is going through. What happens if they get in their car, have an accident and are knocked unconscious? As a fellow CCHS mom said, there has got to be a better w...
yourcurseismymiracle.blogspot.com
Your Curse is My Miracle: The Ventilator Change
http://yourcurseismymiracle.blogspot.com/2015/08/the-ventilator-change.html
Your Curse is My Miracle. Friday, August 7, 2015. During the month of June, Noah was admitted to the hospital to change over from the LTV 950 ventilator to the trilogy ventilator. This is our experience with the changeover. Here is a comparison of the power cords. The Trilogy is on the left and the LTV is on the right. The LTV power cord was very heavy and bulky. The Trilogy cord is just the same as a laptop computer cord and it can be bought at any computer store. After one night in the hospital, Noah w...
yourcurseismymiracle.blogspot.com
Your Curse is My Miracle: Do You Really Need a Nurse?
http://yourcurseismymiracle.blogspot.com/2014/08/do-you-really-need-nurse.html
Your Curse is My Miracle. Thursday, August 21, 2014. Do You Really Need a Nurse? I belong to several trach/vent support groups on Facebook. One of the most talked about issues is nursing care. Some of these women have hit my last nerve. So here goes. I've heard all the reasons for having nurses. It's safer to have someone watch your little one 24/7". Having a nurse at home is a must". You are a mom". (Not a nurse). There are no second chances for mistakes". Subscribe to: Post Comments (Atom). My name is ...
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Blogue de ZaneLeCharmeur - Mes histoires. - Skyrock.com
Mot de passe :. J'ai oublié mon mot de passe. Le blog d'un écrivain inspirer par le vent. Du neuf, du neuf! Mais tout le monde est mort! Mise à jour :. Au fil des chapitres. Au fil des chapitres. Veuillez cliquer sur un des chapitres suivant. Bonjour a tous, Ici un écrivain en feu qui. Abonne-toi à mon blog! Bonjour a tous,. Ici un écrivain en feu qui écrit une et mille histoire! Puisque je trouve cela. plutôt. illisible. Comment décrire ma honte? Désolée est une histoire d'amour cruelle. Courte, sim...
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Mr. Snuggles- Zane Leland Madaus | Costello Syndrome (G12A), History of Neuroblastoma, Enlarged Heart, Laryngo & Tracheomalcia, Severe sleep apnea, severe Reflux/GERD, optic Nerve Hypoplasia (mostly blind)
Mr Snuggles- Zane Leland Madaus. Costello Syndrome (G12A), History of Neuroblastoma, Enlarged Heart, Laryngo and Tracheomalcia, Severe sleep apnea, severe Reflux/GERD, optic Nerve Hypoplasia (mostly blind). Gtube and Acid Reflux. How You Can Help. Laryngo and Trachea Malacia. What Mayo Clinic Did For Us. OMSLife Foundation Conference in Cinncinati, OH 2015. April 13, 2015. Read Article →. Zane is doing soooo well! April 30, 2014. I am so sorry I have not updated Zane’s webpage in a very long time! These ...
Cartea Ce-au vrajit zanele-n livezi :: Home
O carte scrisă şi ilustrată de Mirela Pete. Cartea te poartă într-o livadă de basm, în care zânele livezilor vrăjesc cele mai dulci și parfumate fructe, pentru ca fiecare copil să le poată gusta cu plăcere. Două zâne mici și drăguțe. Care-au vrăjit multe frăguțe,. Ce rod bogat și ce gustoși. Sunt strugurii mari și frumoși,. Vara se-apropie de sfârșit,. Dar zânele n-au obosit. Cartea Ce-au vrăjit zânele-n livezi. Vârsta: peste 2 ani. Livrare GRATUITA prin Posta Romana. Plata online cu Paypal.
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Zanele Mbokazi | Preacher, Evangelist & Businesswoman of Note
Welcome to Zanele Mbokazi's online home. A chance to cry, talk, ask, sing and laugh together as women in the presence of God . A show which tackles topics relevant to modern families and deals with relationships from a Christian perspective. Khwezela Seminars are designed for single and married couples, tackling issues relevant to everyday relationships. Books I have written. This Battle Is Not Yours. PUSH : The Book. This Battle Is Not Yours. The Mirror House, 29 Mckenzie Road, Morningside, Durban, 4001.
Learning new things
Sunday, May 14, 2006. I have realize that Monday mornings are very interesting if you are in the work place, because you know that you will be working on something that should be finished by Friday, unlike at school where everything stays the same. You know that you will be attending lectures and tuts all most everyday. That is good but if continue doing that for next three years it becomes boring. For a change I'm doing something different and that is enjoyable. Posted by zanele @ 10:51 PM. What I’m try...
Zanele Mutepfa | Inspire & Empower Every Accessible Soul
Inspire and Empower Every Accessible Soul. Zanele was born in Zimbabwe, Africa and immigrated to the United States in year 2000. As a child, Zanele she grew up with a widowed mother along with three older siblings. At eleven years old, she lost her mother to heart failure. The loss of both parents at a young age, engraved a compassion for people in her heart. Dr. Paul. She dreams to be an individual that reaches every woman, every human, and every being that believes that everyone has a story. How it...
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