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Haven: Neuroblastoma Cancer and ROHHAD Syndrome: Photos never posted
http://haveyroo.blogspot.com/2009/10/photos-never-posted.html
Saturday, October 10, 2009. I found some photos that we had taken but never posted. Flushing the Hickman Line before the removal. Tubey - or the old Hickman Line - after being removed from Haven's chest. Building stuff with her dad. Haven loves to work with the tools and help dad build things. Haven's Prayer Blanket from Barbara in California. Haven's zodiac quilt from Jackie Bennett and Kim Lewis with Love Quilts to Make a Child Smile. Haven in clinic with Bongo her monkey. January 13, 2011 at 3:58 AM.
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Haven: Neuroblastoma Cancer and ROHHAD Syndrome: Letters From Haven
http://haveyroo.blogspot.com/p/letters-from-haven.html
Haven has decided to create her own blog.once it is ready to go we will update all of you. Subscribe to: Posts (Atom). Johns Hopkins about Haven. Our Fight For ROHHAD. Promotion, Josh Graduates, New Baby on the Way, IPV Letter and Much More. You may have noticed I've been absent on my blog page for the last what . almost 2 years? Sorry I have been incredibly busy and neglected my duty :). Cooling off at the mall. My Son's Rare Medical Condition. What are you doing? A cute film about Autism. We will conti...
haveyroo.blogspot.com
Haven: Neuroblastoma Cancer and ROHHAD Syndrome: Allergic to what????
http://haveyroo.blogspot.com/2011/05/allergic-to-what.html
Tuesday, May 17, 2011. At age 1 Haven had some zucchini bread that my friend made - I didn't know it had hazelnuts in it. We found out about 10 minutes later when Haven developed hives and blisters that covered her body for days. We ended up getting an epi-pen and keeping her away from nuts. This was within 15 minutes of eating the cherries and right after the Benadryl. The only blister not scratched open by my daughter.because I was able to stop her. BUT HE IS AWESOME! He wrote back immediately and was ...
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Haven: Neuroblastoma Cancer and ROHHAD Syndrome: March 2014
http://haveyroo.blogspot.com/2014_03_01_archive.html
Friday, March 7, 2014. I spoke with pre-registration for Haven's surgery today. We are ready to go! First I have to say I don't remember paying $100 for every surgery before……anyway. Haven is ready for surgery. She has been informed that she cannot have anything to eat after midnight and nothing to drink after 7:15am. She has to be at the hospital by 8:45am to meet with anesthesia and her surgeon. I will update everyone on Monday as we finish surgery and settle into recovery. Thank you to all of you ...
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Haven: Neuroblastoma Cancer and ROHHAD Syndrome: Foundations
http://haveyroo.blogspot.com/p/foundations.html
Due to lack of funding Matt's Helpers closed it's doors at the end of 2011. Subscribe to: Posts (Atom). Johns Hopkins about Haven. Our Fight For ROHHAD. Promotion, Josh Graduates, New Baby on the Way, IPV Letter and Much More. You may have noticed I've been absent on my blog page for the last what . almost 2 years? Sorry I have been incredibly busy and neglected my duty :). Cooling off at the mall. What are you doing? A cute film about Autism. My Son's Rare Medical Condition. We will continue to wear gol...
haveyroo.blogspot.com
Haven: Neuroblastoma Cancer and ROHHAD Syndrome: ROHHAD
http://haveyroo.blogspot.com/p/rohhad.html
ROHHAD = Rapid-Onset Obesity, Hypthalamic Dysfunction, Hypoventilation, and Autonomic Dysregulation. The variable presentation of ROHHAD includes the following main symptoms:. Large weight gain in a short amount of time (15 to 20 lbs in a 6- to 12-month period with onset between 1.5 and 10 years of age.). Hyperphagia and obesity by age of 10years - (median age 3 years). Alveolar Hypoventilation (median onset age 6.2 years). Reduced Carbon Dioxide Ventilatory Response. Failed Growth Hormone Stimulation.
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Haven: Neuroblastoma Cancer and ROHHAD Syndrome: February 2015
http://haveyroo.blogspot.com/2015_02_01_archive.html
Sunday, February 22, 2015. Mystery Diagnosis - ROHHAD and Haven. Links to this post. Subscribe to: Posts (Atom). Johns Hopkins about Haven. Our Fight For ROHHAD. Promotion, Josh Graduates, New Baby on the Way, IPV Letter and Much More. You may have noticed I've been absent on my blog page for the last what . almost 2 years? Sorry I have been incredibly busy and neglected my duty :). Cooling off at the mall. What are you doing? A cute film about Autism. My Son's Rare Medical Condition. We will continue to...
haveyroo.blogspot.com
Haven: Neuroblastoma Cancer and ROHHAD Syndrome: Our Villa at Give Kids The World
http://haveyroo.blogspot.com/2010/02/our-villa-at-give-kids-world.html
Tuesday, February 2, 2010. Our Villa at Give Kids The World. Our beautiful 2 bedroom / 2 bath home. Dining room and kitchen - fridge was filled with drinks and table covered in gifts. Haven's bathroom was huge with pink tiling that she loved! Bubble jet bath tub and extra large shower! Thank you again Give Kids the World and Make-A-Wish! Labels: Give Kids The World Villiage. February 2, 2010 at 9:26 PM. Hello, Princess Haven! What beautiful photos your mom put on your site! With love and prayers,. Email ...
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Haven: Neuroblastoma Cancer and ROHHAD Syndrome: Haven's Timeline
http://haveyroo.blogspot.com/2014/03/havens-timeline.html
Thursday, March 6, 2014. Below is a short story about Haven's life after being diagnosed with cancer and a rare syndrome called ROHHAD. When I was 2 I was a normal healthy girl. I liked to help my dad work on mountain bikes. Then in one month I gained 25 pounds and my mom took me to the doctor to get an MRI. Which is a picture of my insides. They took a picture of my brain. Which was fine. After a few more months I gained more weight and they did another MRI. Finally my 3rd birthday and I got a Chinchilla.
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Haven: Neuroblastoma Cancer and ROHHAD Syndrome: Ganglioneuroblastoma
http://haveyroo.blogspot.com/2008/02/ganglioneuroblastoma.html
Monday, February 11, 2008. A little more about Haven's type of cancer. As I said previously (or maybe I didn't, can't remember) there are 3 types of Neuroblastoma. They are listed below in the Pathophysiology section. Haven is confirmed to have Ganglioneuroblastoma (the middle type). The histologic difference between ganglioneuroma, ganglioneuroblastoma. Consists of surgery and, usually, chemotherapy. Despite recent advances in treatment, including bone marrow. Causes, incidence, and risk factors:. Becau...
