Happy 4th!

I am going to keep this quick. Happy 4th of July and while we are out celebrating lets not forget the soldiers, past, present and future who have made this possible.

Learning all over...

In the past few weeks I have been missing. I'm not sure anyone in the blog world noticed but during this period of missing time I have been having to learn all over again. I've had to learn how to cope with the loss of our house, having to resign from my position at my office and breaking the news to them that I would be leaving at the end of the month, coping with giving our dog to the shelter as were unable to take her with us. We are now living with my mom and stepdad who have been great through all of this, offering not only a place for my family to stay, but an ear to listen to me rant, a budget plan to follow and so much more. These past few weeks have enforced what has always been important to me: my family; that no matter how much we may fight when it's most important and needed your family is always there for you and that sometimes you're friends are really needed. These are some quotes that have helped me the past couple of weeks and I'm hoping that they might help someone else as well. Life is messy and sometimes no matter how much you plan it out speed bumps and mountains get in the way. If we came out of this clean it means we didn't live just went by thinking we were. (Images are from Google).

Fundraiser progress!!!

As many of you know my daughter has Neurofibromatosis Type 1 or simply put NF1. After we came back from Boston Children's we had a whole new game plan and Tayler was ready to be more open about what she had. She also wanted to help the children's tumor foundation by raising money for research.
We had the idea of a small family fundraiser that quickly became something larger. She now has a venue to hold it at at our local VFW post, people willing to donate their time by selling homemade cupcakes which they are donating half the profits to the foundation, a 50/50 raffle and a 31 raffle plus so much more.
 One of our local papers is wanting to run a story about her, NF and her fundraiser! I could not be prouder if I tried. She truly is my hero because in the face of adversity she continues to shine.
If you want to know about her fundraiser or how to donate online comment and I'll give you the details and the link to her webpage for online donations. Lets work together and end NF!


....

. :

Date set for NF Fundraiser

As many people know my daughter Tayler has neurofibromatosis type 1 or rather NF 1 to save space. She has wanted to host a fundraiser to not only raise money but raise awareness as well. NF effects more people than Cystic Fibrosis and Muscular Dystrophy COMBINED and yet no one knows about it.

We are going to do a Tea for NF on June 22,2013. We are doing an actual and a virtual tea. The link to our webpage is http://ctf.kintera.org/teafornf2013/taylerscrusaders
The website is set up through The Children's Tumor Foundation and 100% of what we raise goes to them for research.

She has set a goal of $100.00 and I'm hoping she makes it. Lets help raise money and awareness for the children affected by this so that we can end NF one day.

What's your passion?

Everyone has a passion, some people have more than one. Your passion can de
scribe you or just entertain you in your free time. I don't have a whole lot of free time between working full time, my 2 kids, husband, 2 dogs and now 3 cats as ours just had kittens. What I have learned to do is have my kids join in. Now this may not be feasible for everyone depending on what your passion(s) is.

For me I can bring my kids in on at least 2 of my passions. I got the kids into tae bo, yoga and beating on the Wavemaster. At first it was not easy my 9 yr old is uncoordinated and was too self conscious at first even though we werep
 in our living room. After a few weeks she fell in love with it and is now the one asking if we can put the DVD's in. My 2 yr old is very active already so tae bo was great for him, however yoga took a couple months ago for him.

My other passions are reading, writing and running. I can devour entire books in a day if I had the time. I read everything, I don't think there is an author or genre I will not try at least once. My bookshelves have everything from Dickens to E.L. James on them. I currently started writing a novel. I've written poetry since I was in 5th grade and was even published online, but I want to write a book people will love. I'm not saying it's going to be the next great american novel but something people will enjoy reading and hopefully not want to put down.

I love to run. It calms me down and I feel so much happier when I'm done. I've done some 5K's and this year would like to add an 8 and 10K in as well. I don't get to run everyday so when I do get the chance I take full advantage of it. I have a running bucket list with races I want to do including a color me rad, warrior run and a marathon.

So those are my passions, what are yours?

Boston Marathon

Today for many should have been a happy day, a day of triumph, of victory and feelings of goals met and accomplishments achieved. Today was the Boston Marathon, one of the most notorious marathons around and one that many runners, myself included, dream about running in and seeing your time at the end.

Today that happy, joyous day was forever marred by not just one soul shattering blast but two blasts that were near the finish line. Many were injured and some list their lives. This is truly a tragic day for everyone. My thoughts and prayers are going out to all those that were there I wish there was more I could do.

What has our country come too? The government is trying to restrict gun laws which is not going to help, criminals will still get them. But what are they or everyone else going to do about today's tragedy? They were homemade bombs which means ingredients you can buy over the counter, but something must be done.

Misdiagnosed and starting over

As almost everyone who knows me knows I had an appointment at Boston Children's Hospital with my 9 1/2 year old daughter Tayler. I thought we might finally get some answers that were much needed about her neurofibromatosis type 2, which she had been diagnosed with at 6 months old. Instead what we were told knocked me off my feet, my daughter had been misdiagnosed that whole time and none of the other doctors we had been too had ever said anything or tried to do anything for her.

We waited an hour to see Dr. Ullrich after driving 7 hours at what was going to be my best effort to have someone listen to me and help my daughter. I had all her records with me and was determined that I was not leaving without the satisfaction of having her helped.

Dr. Ullrich came out and took us into a room, my mom and step dad had drove us there so my mom accompanied us into the room. It's better to have a second set of ears at these appointments. Five minutes into the exam with Tayler she starts pointing out neurofibromas on different parts of her body and says she has neurofibromatosis type 1 (NF1). This sent me reeling, what do I do now, where do we go from here, can you please help us, all of this and more kept coming out of my mouth. I was instantly terrified, I had read the past MRI reports and knew there was something wrong but I didn't think it was a misdiagnosis.

After my initial shock Dr. Ullrich went through everything with me, she showed me the MRI images and explained that the increased FLAIR was actually NF spots on her brain. She looked at her school reports and decided that we were starting over from scratch. I am nowgetting more help and answers than I could ever have dreamed of. Our new plan consists of waiting on referrals for OT, PT, speech, ophthalmology, neuropsychiatrist, neuropsychologist, school testing and the results to tell us how old her bones are.

I am eternally greatful to Dr. Ullrich and Boston Children's Hospital. I know my daughter is finally going to get the help she needs, the answers I deserve and I couldn't be happier with their service.