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My Love, My Sunshine, My little boy with NF1.

A blog about having a child with Neurofibromatosis.

http://aimee-nfawareness.blogspot.com/

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My Love, My Sunshine, My little boy with NF1. | aimee-nfawareness.blogspot.com Reviews

https://aimee-nfawareness.blogspot.com

A blog about having a child with Neurofibromatosis.

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My Love, My Sunshine, My little boy with NF1.: MRI time. The only time I really think about NF.

http://www.aimee-nfawareness.blogspot.com/2014/04/mri-time-only-time-i-really-think-about.html

My Love, My Sunshine, My little boy with NF1. A brief summery of things that have led up to my son being diagnosed with Neurofibromatosis type 1. Tuesday, April 1, 2014. MRI time. The only time I really think about NF. So it was time for Kyle's MRI. It's hard to believe that it has been two years since his last one. It's always the same feelings I get though. I asked this and she said no. So more waiting. So what do I do with this information? Hailey and Kyle. We all deserved icecream today :). It all st...

2

My Love, My Sunshine, My little boy with NF1.: Make your voice heard!

http://www.aimee-nfawareness.blogspot.com/2013/04/make-your-voice-heard.html

My Love, My Sunshine, My little boy with NF1. A brief summery of things that have led up to my son being diagnosed with Neurofibromatosis type 1. Tuesday, April 2, 2013. Make your voice heard! Http:/ www.ctf.org/How-You-Can-Help/Advocacy.html. Subscribe to: Post Comments (Atom). View my complete profile. Picture Window template. Powered by Blogger.

3

My Love, My Sunshine, My little boy with NF1.: My son and dealing with knowing he has NF type 1.

http://www.aimee-nfawareness.blogspot.com/2011/12/mr.html

My Love, My Sunshine, My little boy with NF1. A brief summery of things that have led up to my son being diagnosed with Neurofibromatosis type 1. Sunday, December 18, 2011. My son and dealing with knowing he has NF type 1. Mr and Mrs. Hess, I am Dr. * * * and I am here to tell you that your son has a condition called Neurofibromatosis type 1.". Picture taken from Web MD . Cafe au lait spots. Of course we asked everyone in the family. "Have you heard of this? Do you know anyone that has or had it? I shoul...

4

My Love, My Sunshine, My little boy with NF1.: Neurofibromatosis Public Service Announcement with Harold Ramis

http://www.aimee-nfawareness.blogspot.com/2011/12/neurofibromatosis-public-service.html

My Love, My Sunshine, My little boy with NF1. A brief summery of things that have led up to my son being diagnosed with Neurofibromatosis type 1. Sunday, December 18, 2011. Neurofibromatosis Public Service Announcement with Harold Ramis. Subscribe to: Post Comments (Atom). View my complete profile. Picture Window template. Powered by Blogger.

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My Love, My Sunshine, My little boy with NF1.: It never gets easier.

http://www.aimee-nfawareness.blogspot.com/2014/08/it-never-gets-easier.html

My Love, My Sunshine, My little boy with NF1. A brief summery of things that have led up to my son being diagnosed with Neurofibromatosis type 1. Friday, August 8, 2014. It never gets easier. I’m participating in NF Walk 2014 Rochester, NY and need your support. Could you please contribute to my fundraising efforts? Location: Orchard Acres Park Buffalo. Subscribe to: Post Comments (Atom). I am a mother trying to do the best job possible with my 6 year old son who has Neurofibromatosis type 1.

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thrivingwithneurofibromatosis.blogspot.com thrivingwithneurofibromatosis.blogspot.com

Thriving with Neurofibromatosis: You DO Matter!

http://thrivingwithneurofibromatosis.blogspot.com/2015/07/you-do-matter.html

How NF Affects MY kids. Who Is Kristi Hopkins? Sunday, July 19, 2015. This voice, and these words caught me off guard. I was at work, behind the register, expecting to ring up yet another large drink, ginormous popcorn, and package of Junior Mints. I've read your book." I looked up. "We're friends on facebook. You've been such an encouragement to me. You are so beautiful - you remind me of my mom.". A Quiet Encourager', was how one woman described me, when I was a guest speaker for an NF group in Canada.

thrivingwithneurofibromatosis.blogspot.com thrivingwithneurofibromatosis.blogspot.com

Thriving with Neurofibromatosis: Sensory Integration Disorder

http://thrivingwithneurofibromatosis.blogspot.com/p/sensory-integration-disorder.html

How NF Affects MY kids. Who Is Kristi Hopkins? Sometimes called "sensory integration" or SI) is a term that refers to the way the nervous system receives messages from the senses and turns them into appropriate motor and behavioral responses. Whether you are biting into a hamburger, riding a bicycle, or reading a book, your successful completion of the activity requires processing sensation or "sensory integration.". What Sensory Processing Disorder looks like. As a baby, our daughter was what the pediat...

thrivingwithneurofibromatosis.blogspot.com thrivingwithneurofibromatosis.blogspot.com

Thriving with Neurofibromatosis: Hiding with Neurofibromatosis

http://thrivingwithneurofibromatosis.blogspot.com/2015/06/hiding-with-neurofibromatosis.html

How NF Affects MY kids. Who Is Kristi Hopkins? Wednesday, June 24, 2015. So, I've been working at the movie theater for 3 months now. I've made my presence known as someone who is hardworking and reliable. My favorite job there, is working in the cafe' as a barista.I get to make cool drinks and desserts.And I take a lot of pride in the products I send out to people. I am having a lot of fun, but I still struggle with being 'out there' - in front of people. It's a constant struggle. I always have cared&#4...

treatingnf.blogspot.com treatingnf.blogspot.com

Treating NF: August 2014

http://treatingnf.blogspot.com/2014_08_01_archive.html

Wednesday, August 20, 2014. For more information and click "Join Team" to join us or scroll down and select your favorite Team Logan member to support (I know who my favorite team member is! End of the summer catch-up. I've been a little behind on updating you all as I have been pretty busy. The last month has been filled with some extra appointments and some fun vacation. I will try my best to remember and fill you in on it all. Fishing with Uncle Bobby. Subscribe to: Posts (Atom). A Child's View into NF.

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Treating NF: April 2014

http://treatingnf.blogspot.com/2014_04_01_archive.html

Friday, April 25, 2014. A long 2 weeks. The last two weeks had some ups and downs (more downs than ups.). Up- I had a week off work. (I work in schools so I get "built-in" vacation when the schools have breaks.). Down- I spent most of that week cleaning up vomit and tending to a sick Logan and our original plans to spend that week visiting family for Easter had to be abandoned. Up- We had a great time spending Easter with great friends. Smiling through the nausea. Thursday, April 10, 2014. This week has ...

treatingnf.blogspot.com treatingnf.blogspot.com

Treating NF: The end??

http://treatingnf.blogspot.com/2014/09/the-end.html

Sunday, September 21, 2014. This week was a very big week at chemo. This may have been his LAST chemo session! In 2 weeks, Logan will go for an MRI and if it is stable and there are no other concerns, we will be done with chemo! I wish I could have made a bigger deal about it and told Logan that it would be the last time, but I wouldn't be able to handle it if it that were not true. We'll have to wait for his MRI to hopefully celebrate the good news. It is not too late to contribute to the NF Walk for th...

treatingnf.blogspot.com treatingnf.blogspot.com

Treating NF: July 2014

http://treatingnf.blogspot.com/2014_07_01_archive.html

Sunday, July 20, 2014. Big brother looking on. Another point of discussion with the neuro-oncologist, was figuring out when there might be an end to this treatment. There are a lot of factors at play and a lot of options moving forward. Next steps will be discussed in more depth in October. Thursday, July 10, 2014. Logan did a great job. He laid still for nearly an hour while 3 different techs/doctors poked and prodded at his belly. Thank god for iPads! One step closer to knowing nothing more. As a paren...

treatingnf.blogspot.com treatingnf.blogspot.com

Treating NF: September 2014

http://treatingnf.blogspot.com/2014_09_01_archive.html

Sunday, September 21, 2014. This week was a very big week at chemo. This may have been his LAST chemo session! In 2 weeks, Logan will go for an MRI and if it is stable and there are no other concerns, we will be done with chemo! I wish I could have made a bigger deal about it and told Logan that it would be the last time, but I wouldn't be able to handle it if it that were not true. We'll have to wait for his MRI to hopefully celebrate the good news. It is not too late to contribute to the NF Walk for th...

thrivingwithneurofibromatosis.blogspot.com thrivingwithneurofibromatosis.blogspot.com

Thriving with Neurofibromatosis: April 2015

http://thrivingwithneurofibromatosis.blogspot.com/2015_04_01_archive.html

How NF Affects MY kids. Who Is Kristi Hopkins? Wednesday, April 15, 2015. Links to this post. Wednesday, April 1, 2015. Been MIA.But I Have a Good Excuse. The last 2 weeks have been incredibly busy. Lots of good things have happened, and I am trying to find my groove and feeling a huge range of emotions, as I am learning to let go of some of the control and find new ways to trust the situation we are in. SoBasically, we could have appealed the decision, but instead .We chose to let it be. SoI dusted off ...

thrivingwithneurofibromatosis.blogspot.com thrivingwithneurofibromatosis.blogspot.com

Thriving with Neurofibromatosis: Who Is Kristi Hopkins?

http://thrivingwithneurofibromatosis.blogspot.com/p/who-is-kristi-hopkins.html

How NF Affects MY kids. Who Is Kristi Hopkins? Who Is Kristi Hopkins? I'm Kristi.A 39 year old, mother to six kiddos. I have Neurofibromatosis type 1. I grew up in a family where Neurofibromatosis was curse word. The utter mention of it grew guilt and fear in my parents. Understandably so. Using the fear and turning it into doing something productive and positive! Three of my children got the 'official' NF diagnosis, after I did. Do you regret having children? I do wish I had more knowledge BEFORE I chos...

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My Love, My Sunshine, My little boy with NF1.

My Love, My Sunshine, My little boy with NF1. A brief summery of things that have led up to my son being diagnosed with Neurofibromatosis type 1. Friday, August 8, 2014. It never gets easier. I’m participating in NF Walk 2014 Rochester, NY and need your support. Could you please contribute to my fundraising efforts? Location: Orchard Acres Park Buffalo. Tuesday, April 1, 2014. MRI time. The only time I really think about NF. I asked this and she said no. So more waiting. Tuesday, April 2, 2013. NF Walk R...

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