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Cystinosis - The Story So Far.

Cystinosis - The Story So Far. The journey so far. There was an error in this gadget. Monday, 4 March 2013. Well sorry I haven't posted in a while. Had no laptop but then remembered can use the app on iPhone lol. Trying to remember everything that's happened lately. Mostly it's been good stuff really. Few colds for both girls but have manage to keep them out of hospital! She's back in 2 weeks to be checked again and see if its improved with a patch. Apart from all that she's doing well! She loves all the...

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Cystinosis - The Story So Far. | cystinosis-thestorysofar.blogspot.com Reviews
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Cystinosis - The Story So Far. The journey so far. There was an error in this gadget. Monday, 4 March 2013. Well sorry I haven't posted in a while. Had no laptop but then remembered can use the app on iPhone lol. Trying to remember everything that's happened lately. Mostly it's been good stuff really. Few colds for both girls but have manage to keep them out of hospital! She's back in 2 weeks to be checked again and see if its improved with a patch. Apart from all that she's doing well! She loves all the...
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Cystinosis - The Story So Far. | cystinosis-thestorysofar.blogspot.com Reviews

https://cystinosis-thestorysofar.blogspot.com

Cystinosis - The Story So Far. The journey so far. There was an error in this gadget. Monday, 4 March 2013. Well sorry I haven't posted in a while. Had no laptop but then remembered can use the app on iPhone lol. Trying to remember everything that's happened lately. Mostly it's been good stuff really. Few colds for both girls but have manage to keep them out of hospital! She's back in 2 weeks to be checked again and see if its improved with a patch. Apart from all that she's doing well! She loves all the...

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Cystinosis - The Story So Far.: July 2011

http://www.cystinosis-thestorysofar.blogspot.com/2011_07_01_archive.html

Cystinosis - The Story So Far. The journey so far. There was an error in this gadget. Thursday, 7 July 2011. Well PM has finally had her fundoplication/G tube operation. She was in hospital for exactly 7 days and coped so well with it! She was amazing. Even when placed into isolation as she had diarrhea, she just seem to bounce back so well after such a big op. I'm so proud of her! Was very surprised as she hadn't been eating but very pleased and even PM had gained a bit of weight :D. E is still loving n...

2

Cystinosis - The Story So Far.: February 2012

http://www.cystinosis-thestorysofar.blogspot.com/2012_02_01_archive.html

Cystinosis - The Story So Far. The journey so far. There was an error in this gadget. Sunday, 19 February 2012. We visit the renal clinic now every 6 weeks. Just routine stuff mainly and never really expect anything eventful to happen. Until our last appointment there! E had to have another chest x ray and she's getting special insoles for her feet soon as her ankles are going in but her knock knees don't look any worse, bad thing is they don't look any better either. It was quite an eventful visit to sa...

3

Cystinosis - The Story So Far.: October 2012

http://www.cystinosis-thestorysofar.blogspot.com/2012_10_01_archive.html

Cystinosis - The Story So Far. The journey so far. There was an error in this gadget. Saturday, 20 October 2012. When It Rains, It Pours. She has to stay on the antibiotics for another 8 days but she can have them orally now, well via her G tube and she's having 2 bolous feeds a day. She even ate some yogurt in hospital. Seems staying there helped her achieve a few things as she also started drinking from a cup! Monday, 8 October 2012. Back to clinic in 6 weeks and eye clinic beginning of November :).

4

Cystinosis - The Story So Far.: Hello!

http://www.cystinosis-thestorysofar.blogspot.com/2013/03/hello.html

Cystinosis - The Story So Far. The journey so far. There was an error in this gadget. Monday, 4 March 2013. Well sorry I haven't posted in a while. Had no laptop but then remembered can use the app on iPhone lol. Trying to remember everything that's happened lately. Mostly it's been good stuff really. Few colds for both girls but have manage to keep them out of hospital! She's back in 2 weeks to be checked again and see if its improved with a patch. Apart from all that she's doing well!

5

Cystinosis - The Story So Far.: March 2012

http://www.cystinosis-thestorysofar.blogspot.com/2012_03_01_archive.html

Cystinosis - The Story So Far. The journey so far. There was an error in this gadget. Tuesday, 27 March 2012. Subscribe to: Posts (Atom). There was an error in this gadget. Proud mummy to 2 beautiful daughters, both diagnosed with Cystinosis (uncurable but treatable), love cooking,facebook, food, animals, sleep and being random. View my complete profile. There was an error in this gadget. Picture Window template. Powered by Blogger.

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The Life of a Chronic Bibliophile : January 2014

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

The Life of a Chronic Bibliophile. Enjoy the little things. Thursday, January 2, 2014. 2013 Review, 2014 Goals and My Mantra! Ever since I read a blog post from Maggie Stiefvater about how she doesn't make New Year's Resolutions, rather New Year's Goals, that is what I do. And now, thanks to that, I accomplish much more than I used to. These were my goals from last year:. Read at least 20 books in 2013. Finish the first draft of My Heart is Yours. Edit My Heart is Yours. Send My Heart is Yours. I started...

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The Life of a Chronic Bibliophile : January 2015

http://lifeofachronicbibliophile.blogspot.com/2015_01_01_archive.html

The Life of a Chronic Bibliophile. Enjoy the little things. Tuesday, January 6, 2015. I know that this post is late, but I always do it. I did alright with my New Year's Goals for 2014. I didn't complete all of them and they did get switched around, but that's okay. It happens sometimes. I did write the first draft of two books in 2014, so that's pretty good. Hopefully, I'll complete all of my 2015 Goals. And here they are:. 2015 New Year's Goals:. Read 20 books in 2015. Release My Heart is Yours.

lifeofachronicbibliophile.blogspot.com lifeofachronicbibliophile.blogspot.com

The Life of a Chronic Bibliophile : February 2014

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The Life of a Chronic Bibliophile. Enjoy the little things. Friday, February 28, 2014. Happy Rare Disease Day! Today is Rare Disease Awareness Day! There are many more rare disease than one might think. I just found out today that for a disease to be qualified as rare in the United States less than 250,000 people have to have it. There are approximately 500 people with Cystinosis living in the United States. Worldwide there are abut 2,000. Today I'm going to share some links with you. Shop (15% of all pu...

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The Life of a Chronic Bibliophile : Things That Make Me Happy

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The Life of a Chronic Bibliophile. Enjoy the little things. Tuesday, May 13, 2014. Things That Make Me Happy. Darkroom and digital photography. Making a new recipe that turns out wonderfully. Cooking for other people. Chicken, prepared lots of different ways. Fundraising/donating to causes that I believe in. Publishing a new book. A great review of one of my books. People that I love. Characters that I love. Posted by Amanda Leigh. Subscribe to: Post Comments (Atom). D (I promise that I. 3 of 22 (13%).

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The Life of a Chronic Bibliophile : A Little Update

http://lifeofachronicbibliophile.blogspot.com/2015/03/a-little-update.html

The Life of a Chronic Bibliophile. Enjoy the little things. Thursday, March 19, 2015. I just wanted to give you all a little update about some things that are going on. :). I've been working on releasing my fiction debut, My Heart is Yours. It is going to be coming out this year. I've been doing final edits and working on promotion. Oh and I have an amazing cover for it! Designed by http:/ coveritdesigns.net. Http:/ www.stuckinbookspa.com. Words written - at least. I hope that you're all doing well!

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The Life of a Chronic Bibliophile : May 2014

http://lifeofachronicbibliophile.blogspot.com/2014_05_01_archive.html

The Life of a Chronic Bibliophile. Enjoy the little things. Tuesday, May 13, 2014. Things That Make Me Happy. Darkroom and digital photography. Making a new recipe that turns out wonderfully. Cooking for other people. Chicken, prepared lots of different ways. Fundraising/donating to causes that I believe in. Publishing a new book. A great review of one of my books. People that I love. Characters that I love. Posted by Amanda Leigh. Subscribe to: Posts (Atom). First Giveaway: Leonie Dawson Wall Calendars.

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The Life of a Chronic Bibliophile : February 2015

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The Life of a Chronic Bibliophile. Enjoy the little things. Saturday, February 28, 2015. Re-Run: Happy Rare Disease Day! Today is Rare Disease Awareness Day! My blog post talking about Nephropathic Cystinosis and my experience with it:. Http:/ lifeofachronicbibliophile.blogspot.com/p/about-nephropahic-cystinosis.html. The Cystinosis Research Network's website:. More information about Cystinosis from the Cystinosis Research Network:. The What is Cystinosis Page on A Happy Girl's Blog:. Or help us spread t...

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The Life of a Chronic Bibliophile : My Photography

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The Life of a Chronic Bibliophile. Enjoy the little things. Shadow of a Heart". Slipped Away" (darkroom photograph). Vermont Sunset" (digital photograph). Sailing Away" (digital photograph). Beauty" (hand-colored darkroom photograph). Subscribe to: Posts (Atom). First Giveaway: Leonie Dawson Wall Calendars. 160; I havent posted anything on this blog in a long time. So my first post of the new year will be a giveaway! D (I promise that I. My Author Facebook Fan Page. Follow This Blog with Bloglovin.

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The Life of a Chronic Bibliophile : Reading Challenges

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The Life of a Chronic Bibliophile. Enjoy the little things. 2014 Reading Challenge - 23 Books! 2013 Reading Challenge - COMPLETED! 21 Books My Book! A Transcend Time Bonus Packet) by Michelle Madow. By Allen Ginsberg, Introduction by William Carlos Williams. Fallen #2) by Lauren Kate. 1 Face the Music. By Andrea K. Robbins. 1 Blue Bloods: The Graphic Novel. Blue Bloods: The Graphic Novel Volume 1) story by Melissa De La Cruz adapted by Robert Venditti art by Alina Urusov. 1 Reach for the Stars. 4 Charmed...

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Home - Cystinose

Cystinose is een zeldzame stofwisselingsziekte. De aandoening is erfelijk, waarbij ouders meestal niet weten dat ze drager zijn. Informatie omtrent symptomen, erfelijkheid en behandeling hebben we samengebracht op de pagina ‘Wat is cystinose? Presentaties, wetenschappelijke artikelen en andere documenten over cystinose hebben we verzameld in de Kennisbank. Zelf zoeken is niet meer nodig, relevante kennis staat hier. In deze video (2014) vertellen zijn ouders wat voor effect dit heeft op hun gezin.

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Ma vie a 10ans. Bonjour à tous je m'appelle florian rodriguez, j'ai dix ans et je suis atteint d'une maladie, qui se nomme la (CYSTINOSE). Ce blog est fait pour touts les parents qui on envie de suivre mon évolution il sera mis à jour régulièrement au fil de l'évolution de ma maladie. Longue vie à vous tout, et bonne visite dans ma vie.florian. Besançon,Doubs,france (25). 19/07/2007 at 6:04 AM. 30/08/2012 at 2:26 AM. Subscribe to my blog! Please enter the sequence of characters in the field below. Don't ...

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Cystinosis - The Story So Far.

Cystinosis - The Story So Far. The journey so far. There was an error in this gadget. Monday, 4 March 2013. Well sorry I haven't posted in a while. Had no laptop but then remembered can use the app on iPhone lol. Trying to remember everything that's happened lately. Mostly it's been good stuff really. Few colds for both girls but have manage to keep them out of hospital! She's back in 2 weeks to be checked again and see if its improved with a patch. Apart from all that she's doing well! She loves all the...

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Cystinosis Foundation - Founded in 1983 - Serving Families for Over 25 Years

The Cystinosis Foundation has been hosting family conferences in the U.S. and Europe since 1983. Read about our 9th International Conference and more in the latest Newsletter by. Would you like to participate in the next Cystinosis Clinic at UCSD/ Rady Children's Hospital in San Diego, Ca? To schedule appointments, patients should call. Delayed-release capsules - oral therapy for vital organs. The treatment of Corneal Crystals in Cystinosis Patients. Join Our Email List. A Guide for Parents, Patients,.

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