Quiver - take better notes 3.2.5 MAS macOS 14 mb. Quiver is a notebook built for programmers. It lets you easily mix text, code, Markdown and LaTeX within one note, edit code with an awesome code editor, live preview Markdown and LaTeX, and find any note instantly via the full-text search. Adds holsters and scabbards to the game which take up the 'Belt' layer introduced in version 1.2. There's nothing more b.dass than carrying your weapons with your hands free. How do you do that? With sheaths, of course. Even when roaming your base, an assault rifle strapped to your back can make you as intimidating as a manhunter thrumbo. The Season of the Chosen's new Exotic bow is an extremely fun weapon in Destiny 2, but it's even better when you complete its Exotic catalyst. By Phil Hornshaw on February 10, 2021 at 5:27PM PST 3.
The last day of February is called Rare Disease Day. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients' lives. Microsoft office 2016 15 38. 1 in 20 people will live with a rare disease at some point in their life (doesn't seem so rare does it?). So why am I telling you this? Because 4 years ago one of our children was diagnosed with a rare genetic condition. We haven't talked too much about it because honestly…at this age it's very wait and see.
Our son Gideon was diagnosed with Noonan Syndrome-Neurofibromatosis 1 or NS-NF1. It's actually characterized as Neurofibromatosis with manifestations of Noonan syndrome. I don't know that it makes any difference what you call it. Even the scientists don't know if it's an overlap of these two conditions or if it's a new disease entity itself…so if they don't know then neither do I. Noonan syndrome occurs in 1:2500-3000 people. (February is also Noonan Syndrome awareness month). Interestingly, some people can have such mild symptoms they aren't aware they have it until they have a child affected. In Gideon's case it is a random mutation (meaning neither Kerry nor I have the condition). Since it's an overlap of two different diseases, I'll talk about each of the separately.
Noonan Syndrome a wide spectrum of symptoms and physical features that vary greatly in range and severity. There are lots of characteristics of this disease that do not appear to affect Gideon at this time. He has started to ‘grow into' some of the physical characteristics that were a bit more prominent at birth. Noonan syndrome is characterized by short stature (he is average height for his age currently, but this may change as he gets older), specific heart defects (he was born with a heart defect, but he has been given the 'all clear' and we only have periodic monitoring now). Many kids with Noonan syndrome blood clotting and platelet deficiencies (his were normal this last year, but had been abnormal previously), learning difficulties or mild intellectual disability. Noonan syndrome is an autosomal dominant genetic disorder (meaning if he has children they will have a 50% chance of getting the disease). You can read more about Noonan Syndrome here: https://rarediseases.org/rare-diseases/noonan-syndrome/ Please remember that kids can be affected very mildly or very severely by this disease. Thankfully, Gideon seems to be on the mild end of the spectrum.
Neurofibromatosis 1 is also know as Von Recklinghausen's disease. This condition is characterized primarily by changes in skin color and the growth of(non-cancerous) tumors along the nerves of the skin, brain, and other parts of the body. The severity and specific features can vary greatly from person to person. Gideon has many more of the features of NF1 in that he has several cafe' au lait (birthmark) spots on his body. We were at a well child check and the doctor asked Gideon to show her where is heart was. He promptly lifted up his shirt and pointed to his arm pit…where a heart shaped spot is. The biggest concern with NF is the formation of benign tumors under his skin. Children with NF often have tumor formation on their optic (eye) and ocular (ear) nerve pathways. Sometimes these can lead to vision or hearing loss. So far, Gideon does not seem to have any tumors but they typically occur during growth spurts and puberty so we will monitor more closely as that time approaches. Gideon also has what they call lisch nodules on his eyes. Sound studio 4 9 5 x 7. These are clumps of pigment on the colored part of his eye that do not affect vision. You can read more about NF here: https://rarediseases.org/rare-diseases/neurofibromatosis-type-1-nf1/
The management for both is symptomatic and supportive. So that's what we do. For now, we really just treat him like a normal kid with a little closer monitoring. He sees a pediatric dematologist, cardiologist, hematologist/oncologist and opthamologist on a yearly basis. We take a little trip to Kansas City and see all of them in one fell swoop. His appointments thus far have been relatively normal and low key. His heart murmur caused by the defect is almost non-existent and this last year we were told we didn't have to follow up for 5 years. His blood clotting studies were within normal limits this last check so we don't have to check again for another couple years. We will see the dermatologist and opthamologist yearly forever. He did go to speech therapy for something call Apraxia of speech (which may or may not be related) last year and will be re-evaluated again this year to determine if he should resume that. We were warned learning may be a challenge for him. Our pediatrician told us he's the best environment possible to support his learning and education…a house full of siblings who are learning alongside him and an environment where he can be taught how he needs to be.
We've known about Gideon's diagnosis for several years but haven't shared much about it. Part of that is because quite honestly…we're not big drama people and didn't want it to change how others treated him. We still don't want others to treat him differently. So why share now? It just feels like a good time. I've had a couple people recently comment about his physical appearance and how he looks 'different' from the rest of our family (we think he looks perfect of course) and also as Gideon gets older we want to be sure we are open with him about his diagnosis. Right now, he really has no idea other than he gets to go to Kansas City every year. We will need to have very frank conversations with him when he is able to understand about the likelihood of passing this condition to his children and just because his symptoms seem less severe his children would not be promised the same outcome. We also share because as he grows the likelihood tumors will develop increases. This can affect physical appearance, cause pain when they compress on nerves and impair his sight or hearing.
https://torrentsecret.mystrikingly.com/blog/sea-world-games. We know that God knit Gideon together before he was born and have never doubted the gift that he is to our family. He has an amazing personality and sense of humor. He loves his siblings and babies (ours and everyone else's) immensely. If I could bottle his laugh I would. We pray that God will protect his vision and hearing, but trust that if these are affected God will provide us with what we need to face that challenge.
So this month raise your awareness about rare diseases. Hug someone affected by one and celebrate their uniqueness!
Dr. Yvonne Kristin Fulbright[1] is an Icelandic-American sexologist, author, and television personality.
Education[edit]
Originally from Iceland, Yvonne has a Ph.D. from New York University, a Master's in Human Sexuality Education from the University of Pennsylvania, and Bachelor's degrees in psychology and sociology from Penn State University. She went on to pursue a post-doctoral fellowship at the University of Iceland, focusing on sexual health services for young people. She is a certified sexuality educator through the American Association of Sex Educators, Counselors, and Therapists (AASECT).[2]
Books[edit]
Fulbright is the author of 9 books:
Books[edit]
Fulbright is the author of 9 books:
- 'The Best Ever Oral Sex for Her' (Adams Media, 2011)
- 'The Best Ever Oral Sex for Him' (Adams Media, 2011)
- 'Sultry Sex Talk to Seduce Any Lover' (Quiver, 2010)
- Sinclair's 'The Better Sex Guide to Extraordinary Lovemaking' (Quiver, 2010)
- Pleasuring: The Secrets to Sexual Satisfaction (Hollan, 2008)
- Touch Me There! A Hands-on Guide to Your Orgasmic Hot Spots (Hunter House, 2007)
- Sex with Your Ex & 69 Other Things You Should Never Do Again. Plus a Few that You Should (Adams Media, 2007)
- The Hot Guide to Safer Sex (Hunter House, 2003)
She is also the co-author of Your Orgasmic Pregnancy: Little Sex Secrets Every Hot Mama Should Know (Hunter House, 2008), as well as the writer of 3 'Sensual Fusion Essentials' e-guides on Feng Shui, Reiki, and Energy and Breath. Dr. Fulbright has also produced an audio guide with her cousin, Hermigervill, titled Who Better than You? Educating Your Child about Sex, Love & Relationships.
Writing[edit]
Fulbright started her writing career as the scribe of 'Sexpert Tells All' in New York University's Washington Square News. For the last several years, she has been an editor for AASECT's 'Contemporary Sexuality', a writer for loveandhealth.ifriends.net, and a volunteer with sexualhealth.com. The former 'sexpert' columnist for Foxnews.com[3] and Women's Health, she is now the sex columnist for Cosmopolitan and disaboom.com as well as a member of the Sinclair Institute Advisory Council, for whom she wrote the new book The Better Sex Guide to Extraordinary Lovemaking.[4]
Media appearances[edit]
Fulbright is the sex expert/host for Comcast's Dating on Demand Winzip 3 1 – mac edition of established compression utility. and cherrytv.com. For the last couple of years, she was the co-host of Sirius Maxim Channel 108's Sex Files show. An advocate and activist for sexuality education, she is a sex blogger for The Huffington Post, a freelancer, and a professor at Argosy University. She is frequently interviewed for and featured in national and international publications.
Sexuality Educator[edit]
Fulbright founded Sexuality Source, Inc. in 2004, offering consulting, writing, and educational services. She later went on to launch a global sexuality headquarters website, where experts and browsers interact - www.sensualfusion.com.
Yvonne has been a sexuality educator for over a decade, teaching undergraduates and graduate students at the University of Pennsylvania, New York University, and currently at American University. Credited for her sensitivity to diversity, she has been a speaker for the college lecture circuit and organizations, like the American Medical Student Association, speaking on a variety of sex and relationship issues.
Notes[edit]
- ^Biography of Yvonne K. Fulbright at Sexuality SourceArchived October 15, 2008, at the Wayback Machine
- ^Yvonne K. Fulbright membership profile at AASECT[permanent dead link]
- ^'FOXSexpert: The Benefits of Sweaty Sex'. Foxnews.com. 1 December 2011. Archived from the original on 24 October 2011. Retrieved 30 March 2011.
- ^The Better Sex Guide to Extraordinary LovemakingArchived 2016-03-03 at the Wayback Machine. Yvonne K. Fulbright Bibliography
References[edit]
External links[edit]
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