Haven was born a healthy happy baby. At the age of 2.5 she gained extreme weight and we began seeing many different things going crazy. By age 3.5 Haven had a 45 min seizure landing her at Johns Hopkins. Diagnosing her with Neuroblastoma Cancer and ROHHAD Syndrome. We continue to battle these today.
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Haven: Neuroblastoma Cancer and ROHHAD Syndrome | haveyroo.blogspot.com Reviews
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Haven was born a healthy happy baby. At the age of 2.5 she gained extreme weight and we began seeing many different things going crazy. By age 3.5 Haven had a 45 min seizure landing her at Johns Hopkins. Diagnosing her with Neuroblastoma Cancer and ROHHAD Syndrome. We continue to battle these today.
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 ...
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 ...
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...
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.
Haven: Neuroblastoma Cancer and ROHHAD Syndrome: Mystery Diagnosis - ROHHAD and Haven
http://haveyroo.blogspot.com/2015/02/mystery-diagnosis-rohhad-and-haven.html
Sunday, February 22, 2015. Mystery Diagnosis - ROHHAD and Haven. Subscribe to: Post Comments (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 gold a...
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Friends Of Haven: December 2008
http://friendsofhaven.blogspot.com/2008_12_01_archive.html
This site is updated with Haven's friends that we meet through our illnesses. These are highlights of some of the bravest children I know! Sunday, December 21, 2008. Nikki - ROHHAD - Australia. If you remember my post about ROHHAD children. I hope to soon get Nikki's complete ROHHAD story and will share it with all of you. Above is a picture of Nikki and her mom, Karen. Thank you so much for sending your photo to us! Please keep Nikki in your thoughts and prayers and may she come home to her family soon!
neuroblastomarohhad.blogspot.com
Haven Kristina Fowler: February 2010
http://neuroblastomarohhad.blogspot.com/2010_02_01_archive.html
Monday, February 22, 2010. After months and months of no luck the doctor called my mom, it was two days before surgery, "You're pregnant, we're canceling surgery"! YEAH Mom was told my due date would be January 26. After two more trips to the ER mom finally finds out what's going on. I (my egg) had implanted itself in to the endometriosis side (left side) of mommy and it had caused a 2 inch tear. Everytime mom would walk or exercise it would tear more. As soon as I arrived the doctors quickly took me to ...
Friends Of Haven: April 2009
http://friendsofhaven.blogspot.com/2009_04_01_archive.html
This site is updated with Haven's friends that we meet through our illnesses. These are highlights of some of the bravest children I know! Monday, April 20, 2009. Update on Susannah - Cushings Syndrome. Hi Everyone.I'm so excited to get an email from Jess - Susannah's mom - today. I have been keeping updated on Susannah's recovery through her web site. It's been about 2 weeks since her surgery and thought I'd share her mom's happy post from their site to all of you! Dear Family and Friends,. The date's a...
Friends Of Haven: January 2011
http://friendsofhaven.blogspot.com/2011_01_01_archive.html
This site is updated with Haven's friends that we meet through our illnesses. These are highlights of some of the bravest children I know! Tuesday, January 25, 2011. 18 Years/no diagnosis - until Haven's Mystery Diagnosis aired. Haven's mystery diagnosis story aired here in Florida about 2 hours ago, and I am just nicely able to stop crying and compose myself! She was this sweet and full of spirit young girl, and she and her twin brother were so fun to watch together! That was the end of the line for me!
neuroblastomarohhad.blogspot.com
Haven Kristina Fowler: Age 2 - 3 years old
http://neuroblastomarohhad.blogspot.com/2010/02/age-2-3-years-old.html
Monday, February 22, 2010. Age 2 - 3 years old. Photo time line of Haven between January 2006 and January 2007. This is where it starts getting tricky and very confusing. This was my 2nd birthday party! I had a blast with my friends and family. My dad and I are always goofing around. Putting together my birthday bike. After working on dad's all the time it was time I built my own. A day at the San Diego Zoo. We had a lot of fun climbing through tubes. Dad was chasing me everywhere. By the end of June I h...
neuroblastomarohhad.blogspot.com
Haven Kristina Fowler: Age 5 - 6 Years Old
http://neuroblastomarohhad.blogspot.com/2010/02/age-5-6-years-old.html
Monday, February 15, 2010. Age 5 - 6 Years Old. Haven's 5th birthday. We have been lucky to not be in the hospital during birthdays so far. She made her own cake and icing. It was a very delicious cake. After about 4 days she did let the characters start getting close to her and took photos with them. One of our favorite places - Germany in Epcot. Every single night we went back to Epcot because Haven loved it. She would get a hot chocolate and I would have a latte and we'd sit and watch fireworks. For V...
neuroblastomarohhad.blogspot.com
Haven Kristina Fowler: Age 4 - 5 Years Old
http://neuroblastomarohhad.blogspot.com/2010/02/age-4-5-years-old.html
Saturday, February 20, 2010. Age 4 - 5 Years Old. This was me at the end of age 3. My grandparents came out from Virginia and Utah to spend my birthday with me. We had lots of fun playing in the make up and getting dressed up. I spent the day with Grandma Virginia just being girly. It's so much fun to get all made up and pretty. We had a few fun days with make up and curling my hair. Made it through the mIBG with no issues and was all smiles ready to go home. Grandma Sing and Grandpa Beard-off came out t...
neuroblastomarohhad.blogspot.com
Haven Kristina Fowler: Age Birth - 1
http://neuroblastomarohhad.blogspot.com/2009/04/my-first-year.html
Monday, February 22, 2010. Age Birth - 1. A few hours old.I was a bit tired from all the work I had to do the day I was born. Grandma Sing and Grandpa-Beard Off (my dad's dad) were the first on the scene. The arrived from Arizona on Saturday, January 25th, as mom was sitting in the room waiting to be told she would be having me. They soon sent her home only to come back a few hours later. Here I am with my grandma and grandpa a few minutes after meeting my mom and dad. Grandma B-Honey (my mom's mom) came...
V Wooten World: August 2012
http://vwootenworld.blogspot.com/2012_08_01_archive.html
Tuesday, August 21, 2012. BiCan't believe it has been over three months since I last updated my blog. If you look back, I used to update it every few days. It's not that I don't have plenty of interesting things going on to share, but I guess I'm just too busy to take a few minutes more often to write them down here. For that, I apologize. So, time to get you all caught up. Me in my scrubs. My mom in her new (used) car. My mom was very blessed, though, that she was not injured. James helped put on his co...
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Haven: Neuroblastoma Cancer and ROHHAD Syndrome
Thursday, June 29, 2017. We finally decided to have the Spinal Fusion. Haven needed to have her spine fused from C3 - L4. She received two Titanium rods (one on each side of the spine) and a bunch of bolts. Along with bone grafts. This was to help to sharp curves in her spine caused by growth hormone injections she had been taking for a few years. Grandma and grandpa came out to help with Haven and work with her in getting back on her feet. They were great help with the PT guy and gal. They are a...After...
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