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life with Marfan Syndrome

Living with Marfan Syndrome. Thursday, June 25, 2015. Rachel Platten - Fight Song (Official Video). Wednesday, June 24, 2015. The time that has passed between June 25th 2013 and today June 25th 2015 has felt like 10 years :-). I'll admit it's been pretty rough. I remember thinking right before my surgery two years ago, "6 weeks recovery and I'll be good as new! But I am alive! I made it through the storm! The last couple months the pain in my sternum has gotten so much better! For FEAR and FAITH. I can c...

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life with Marfan Syndrome | faithhopeheart.blogspot.com Reviews

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Living with Marfan Syndrome. Thursday, June 25, 2015. Rachel Platten - Fight Song (Official Video). Wednesday, June 24, 2015. The time that has passed between June 25th 2013 and today June 25th 2015 has felt like 10 years :-). I'll admit it's been pretty rough. I remember thinking right before my surgery two years ago, 6 weeks recovery and I'll be good as new! But I am alive! I made it through the storm! The last couple months the pain in my sternum has gotten so much better! For FEAR and FAITH. I can c...

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10 2 years

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love this song,posted by,allison denboer,no comments,email this,blogthis,share to twitter,share to facebook,share to pinterest,2 years,i made it,oswald chambers,my dearies,life is good,echoecho echo,fight song,v=xo1vinw skc,good news,1 comment,ha ha

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life with Marfan Syndrome | faithhopeheart.blogspot.com Reviews

https://faithhopeheart.blogspot.com

Living with Marfan Syndrome. Thursday, June 25, 2015. Rachel Platten - Fight Song (Official Video). Wednesday, June 24, 2015. The time that has passed between June 25th 2013 and today June 25th 2015 has felt like 10 years :-). I'll admit it's been pretty rough. I remember thinking right before my surgery two years ago, "6 weeks recovery and I'll be good as new! But I am alive! I made it through the storm! The last couple months the pain in my sternum has gotten so much better! For FEAR and FAITH. I can c...

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faithhopeheart.blogspot.com

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life with Marfan Syndrome: November 2014

http://www.faithhopeheart.blogspot.com/2014_11_01_archive.html

Wednesday, November 19, 2014. 1 year since 3rd open heart. One year from yesterday I had my third open heart. In honor of this,. We decided to get our Christmas decorations out a little early, and I was reminded of all the kindness shown to us through the holidays last year. It was such a special time! One my family and I will never forget! We both sleep better next to each other. I have come to realize I have good days and bad days. And when the tough days come don't beat myself up or despair. I love th...

2

life with Marfan Syndrome: Sternal wire removal surgery

http://www.faithhopeheart.blogspot.com/2014/06/sternal-wire-removal-surgery.html

Wednesday, June 18, 2014. Sternal wire removal surgery. So the surgery went great! Dr said that the sternum looked better than he thought and felt comfortable just removing the wires, he is hopeful that will help the pain. The top ridge of the sternum is still not fully healed and that is why the cat scan showed incomplete healing. But they pushed on it hard to make sure no shifting or breaking would occur. And I was able to go home same day! Thank you for all the kind words and prayers! A year ago today...

3

life with Marfan Syndrome: genetic test results

http://www.faithhopeheart.blogspot.com/2013/05/genetic-test-results.html

Tuesday, May 7, 2013. May 8, 2013 at 10:12 AM. Love your family and know Livi is in the best place :). May 22, 2013 at 3:45 AM. Reading your blog has been very helpful. My 8 year old daughter is going for a echo and a X-ray of her spine. She has joint hyper mobility as well. The doctor said she has traits of a connective disorder and looking at photos of your brothers is like looking at my husband. I really believe she and possibly him have marfans. Subscribe to: Post Comments (Atom). 3rd time's the charm.

4

life with Marfan Syndrome: 1 year since 3rd open heart

http://www.faithhopeheart.blogspot.com/2014/11/1-year-since-3rd-open-heart.html

Wednesday, November 19, 2014. 1 year since 3rd open heart. One year from yesterday I had my third open heart. In honor of this,. We decided to get our Christmas decorations out a little early, and I was reminded of all the kindness shown to us through the holidays last year. It was such a special time! One my family and I will never forget! We both sleep better next to each other. I have come to realize I have good days and bad days. And when the tough days come don't beat myself up or despair. I love th...

5

life with Marfan Syndrome: Rachel Platten - Fight Song (Official Video)

http://www.faithhopeheart.blogspot.com/2015/06/rachel-platten-fight-song-official-video.html

Thursday, June 25, 2015. Rachel Platten - Fight Song (Official Video). Subscribe to: Post Comments (Atom). Learn about Marfan Syndrome. 3rd time's the charm. Well as many have heard I found out I do in fact have to have open heart surgery again. I will be admitted Sunday and operation will be Mond. This is my Mom and my girls Well my familys journey with marfans began in 1998, my mom was reading a readers digest and read about. Livi and I's checkups. I still have a small pocket of fluid around my a.

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Wedding Rings Forever: December 2013

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A blog about need to know information when one is shopping for a men's or women's wedding ring. Wikipedia Tungsten Carbide Info. Monday, December 2, 2013. Buy a ring for a good cause. We haven't used the blog for awhile, but wanted to spread the word about a meaningful auction we will be participating in. Mother of three, Allison DenBoer, has Marfan Syndrome and just finished her 3rd open heart surgery. You can find out more about her story at her blog. To find out more details about the auction.

jentzschfamilylove.blogspot.com

Jentzsch Family: Da Da DADA!!

http://jentzschfamilylove.blogspot.com/2013/09/da-da-dada.html

Monday, September 30, 2013. This past month has been a fun and interesting one with Carter. He got his first tooth (followed by the second a day later), it was he first time being sick, and he said his first word! Yep you probably guessed it from the Title, it was Dada! David loved that his first word was Dada, and being the turkey he is he decided to ask Carter who his favorite is. Without hesitation Carter replied, "Da Da Da DADA! At the top of his lungs) Both of us just started laughing. Ashley and Da...

jentzschfamilylove.blogspot.com

Jentzsch Family: Righteous Wives & Mothers

http://jentzschfamilylove.blogspot.com/2013/09/two-weeks-ago-in-young-womens-our.html

Sunday, September 8, 2013. Righteous Wives and Mothers. Two weeks ago in Young Women's our lesson was on preparing ourselves to become Righteous Wives and Mothers. We talked about different Characteristics Righteous Wives and Mothers have. Another one of my favorites is Emma Smith. There is so much you can say about Emma. To me she is the perfect example of a Righteous, Faithful, Latter-Day-Saint. She was prepared to accept her role no matter what trial was placed before her. Once again I'm so blessed to...

twicetheheart.blogspot.com

Twice the Heart - A Double Marfan Family Blog: Ambition, Marfan & Pain...

http://twicetheheart.blogspot.com/2014/01/ambition-marfan-pain.html

Twice the Heart - A Double Marfan Family Blog. A man and woman meet and marry. Neither of them knowing BOTH have undiagnosed Marfan Syndrome. What are the odds? Sunday, January 19, 2014. Ambition, Marfan and Pain. Sunday, January 19, 2014. Again the best laid plans of mice and men. I had planned to publish this blog in August of 2013, but if your are one of those that know me and how busy my life is now you can understand why it got put on the back burner. I'm finally going to try and get it done. The ma...

twicetheheart.blogspot.com

Twice the Heart - A Double Marfan Family Blog

http://twicetheheart.blogspot.com/2012/05/in-1994-my-husband-daniel-was-diagnosed.html

Twice the Heart - A Double Marfan Family Blog. A man and woman meet and marry. Neither of them knowing BOTH have undiagnosed Marfan Syndrome. What are the odds? Monday, May 14, 2012. Our Marfan Story Begins.Again! After many twists and turns of odd symptoms and a misdiagnosis of a related condition, I and several children from an earlier marriage (unrelated to Daniel) were also diagnosed with Marfan's in the fall of 2011. May 21, 2012 at 11:37 AM. Thanks for sharing your story. The Marfan Trust (UK).

twicetheheart.blogspot.com

Twice the Heart - A Double Marfan Family Blog: January 2014

http://twicetheheart.blogspot.com/2014_01_01_archive.html

Twice the Heart - A Double Marfan Family Blog. A man and woman meet and marry. Neither of them knowing BOTH have undiagnosed Marfan Syndrome. What are the odds? Sunday, January 19, 2014. Ambition, Marfan and Pain. Sunday, January 19, 2014. Again the best laid plans of mice and men. I had planned to publish this blog in August of 2013, but if your are one of those that know me and how busy my life is now you can understand why it got put on the back burner. I'm finally going to try and get it done. The ma...

twicetheheart.blogspot.com

Twice the Heart - A Double Marfan Family Blog: June 2014

http://twicetheheart.blogspot.com/2014_06_01_archive.html

Twice the Heart - A Double Marfan Family Blog. A man and woman meet and marry. Neither of them knowing BOTH have undiagnosed Marfan Syndrome. What are the odds? Tuesday, June 24, 2014. Rush, rush. Hurry, hurry. Must keep up with the pace of life. The slowing down I'm going through now is the slowing most folks don't start to deal with until their 60's, 70's or even 80's. I am not yet 50. I know I'm not alone as hear a lot of our older Marf's talking about how they are feeling the effects of their...Was l...

twicetheheart.blogspot.com

Twice the Heart - A Double Marfan Family Blog: Time. Is it a friend or foe for those of us living with Marfan Syndrome?

http://twicetheheart.blogspot.com/2013/08/time-is-it-friend-or-foe-for-those-of.html

Twice the Heart - A Double Marfan Family Blog. A man and woman meet and marry. Neither of them knowing BOTH have undiagnosed Marfan Syndrome. What are the odds? Sunday, August 4, 2013. Time Is it a friend or foe for those of us living with Marfan Syndrome? OK, before I tackle that question, I will take care of some business. As for time and this blog, it is WAY past time for this blog to be updated! It will stay updated. We shall see. How COOL is that? On the realist side, we have always been cautious an...

twicetheheart.blogspot.com

Twice the Heart - A Double Marfan Family Blog

http://twicetheheart.blogspot.com/2012/05/may-21-2012-this-week-will-echos-check.html

Twice the Heart - A Double Marfan Family Blog. A man and woman meet and marry. Neither of them knowing BOTH have undiagnosed Marfan Syndrome. What are the odds? Monday, May 21, 2012. May 21, 2012. This week will be ECHO's and check-ins with the cardiologist for my husband and youngest daughter. It will be either a routine week or it will be one of those weeks that turns our lives upside down, the question is which? May 30, 2012 at 8:29 AM. May 30, 2012 at 11:29 AM. Our doctor wanted to go to annual check...

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Faith Hope Fitness | My WordPress Blog

I have to admit I am not a huge salad eater. I got really burned out on salads awhile back and needed a salad break, but I am ready to bring the salad back! Bring on the October Salad Challenge! I am still struggling with weight loss and realized that I am probably not getting enough veggies each day so I am challenging myself to eat a salad a day in October. I do plan to try several different recipes to mix it up. Want to join me? Show me your salad creations each day u sing the hashtag #. Mediterra Sav...

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There are literally not enough words in the human language to explain God's glory. He's beautiful, and he creates beautiful things, and I'm completely in love with Him. In my happiest days, I look to you. My heart flutters with a joy not of this world because You’re the reason for my joy. You’re the only reason for joy. In my most desperate days, I turn to You. You’re my Caretaker, my Rock, my Provider. You care for me in such a tender, compassionate, intimate way. Will I ever find an end? Our love toget...

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Everyday Faith, Hope and God. Daily Words To Live By. Friday, September 16, 2011. Hanky Panky Pink Plumeria. Abide in Me, and I in you so shall you bring forth much fruit. Be calm, assured, at rest. Love, not rush. Peace, not unrest. Nothing fitful. All effectual. Sown in Prayer, watered by Trust, bearing flower and fruit in Joy. I love you.". Meaning to me: Do not rush anything, do all things calmly and deliberately. Trust in God, be calm and assured through him. Why do you worry? Retreat into a quiet p...

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Faith, Hope, Happiness & Love

Faith, Hope, Happiness and Love. Little rays of sunshine. Friday, October 9, 2015. Dear future pregnant self - it's really happened! At 12 weeks I was completely miserable feeling sure I'd NEVER recover, then 2 days later I was feeling amazing! Now 2 weeks later I am up and down a little, but generally a MILLION times better! Sunday, September 20, 2015. I'M SO HAPPY TO BE PREGNANT! I am soooooooooooooo excited! Because we're having another BABY! We have 4 so far and there's not one among them who isn't A...

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life with Marfan Syndrome

Living with Marfan Syndrome. Thursday, June 25, 2015. Rachel Platten - Fight Song (Official Video). Wednesday, June 24, 2015. The time that has passed between June 25th 2013 and today June 25th 2015 has felt like 10 years :-). I'll admit it's been pretty rough. I remember thinking right before my surgery two years ago, "6 weeks recovery and I'll be good as new! But I am alive! I made it through the storm! The last couple months the pain in my sternum has gotten so much better! For FEAR and FAITH. I can c...

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Faith.Hope.Heart - Home

This website is created to let young generations discover the new life that can be found in knowing our God by letting Him take control of everything and by accepting that He alone can help us change our ways, attitude in our life towards to a new us. It's all about Him. Let God Change your Life". For as the heavens are higher than the earth, so are my ways higher than your ways, and my thoughts than your thoughts. (Isaiah 55:9). Create a free website.

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FAITH, HOPE, & Jayci JOY

FAITH, HOPE, and Jayci JOY. Thursday, August 6, 2009. Here are some pics of Guyson's room. Memaw also made all of his bedding! She is one talented lady! We're lucky she is ours! Guyson Alexander-Sig Nickels is doing spectacular! It's hard to believe he is already 3 months old! Such a good baby. . . FAITH, HOPE, and Jayci JOY. Jayci Joy received her Make-A-Wish room makeover last Saturday. It was one of the most awesome days of our lives! It is a momento we will forever cherish! THANKS SO MUCH AMBERLEE!