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Life With Bobean! Living with Costello Syndrome. - A blog about living life one day at a time with an amazing little girl with Costello Syndrome.

A blog about living life one day at a time with an amazing little girl with Costello Syndrome.

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Life With Bobean! Living with Costello Syndrome. - A blog about living life one day at a time with an amazing little girl with Costello Syndrome. | lifewithbobean.com Reviews
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Life With Bobean! Living with Costello Syndrome. - A blog about living life one day at a time with an amazing little girl with Costello Syndrome. | lifewithbobean.com Reviews

https://lifewithbobean.com

A blog about living life one day at a time with an amazing little girl with Costello Syndrome.

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February 2015 - Life With Bobean! Living with Costello Syndrome.

http://www.lifewithbobean.com/2015/02

Living with Costello Syndrome. Monthly Archives: February 2015. February 28, 2015. Is International Rare Disease Day and in honor of Rare Disease Day, I’d love for you to learn a bit about Costello Syndrome. I’m not going to give you a whole bunch of facts about the syndrome, but if you want to learn all about it, the best source of information is here www.costellokids.com. We feel like Ali (and our family) is surrounded by love and by people that cheer her on every step of the way. We feel like we h...

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Life With Bobean! Living with Costello Syndrome. - Page 25 of 27 - A blog about living life one day at a time with an amazing little girl with Costello Syndrome.

http://www.lifewithbobean.com/page/25

Living with Costello Syndrome. A Post from Daddy. Originally posted January 24, 2010. September 6, 2014. Sometimes Daddy should leave well enough alone! It has been a long, long haul for us. Thankfully we have a lot of support from Jill`s and mine looking after Madi, and our neighbors have been nice enough to take her for my set of days off so I can spend it here. Thank you all so much. Click to share on Facebook (Opens in new window). Click to print (Opens in new window). September 6, 2014. Ali is no lo...

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Why We Support The Costello Syndrome Family Network. - Life With Bobean! Living with Costello Syndrome.

http://www.lifewithbobean.com/why-we-support-the-costello-syndrome-family-network

Living with Costello Syndrome. Why We Support The Costello Syndrome Family Network. July 25, 2015. This years conference was in Seattle. What an incredible city! Tuesday was the first evening of the conference and it was an opportunity for the families and medical researchers to get together and socialize a bit. Everyone said hello and enjoyed some treats! Click to share on Facebook (Opens in new window). Click to print (Opens in new window). Click to email this to a friend (Opens in new window). Joan an...

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November 2014 - Life With Bobean! Living with Costello Syndrome.

http://www.lifewithbobean.com/2014/11

Living with Costello Syndrome. Monthly Archives: November 2014. Sometimes you have to see the humour in things! November 12, 2014. With the prospect of Ali’s G-tube coming out permanently, I’ve been taking some time to reminisce. I find myself often shaking my head when I think about her tubie and the journey it’s taken us on! Her favourite is watching it drip from my nose! I have left Ali’s port open and had the entire contents of her stomach drain down my leg as I was carrying her. When you’ve got ...

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Feeding Advice? - Life With Bobean! Living with Costello Syndrome.

http://www.lifewithbobean.com/feeding-advice

Living with Costello Syndrome. May 23, 2015. Yesterday morning I got up bright and early to prepare for a big morning of Ali things! She just adores sitting and watching what’s going on around her. It’s rather distracting! What’s funny, is that I’m sure this lady thought she was probably about 2 when she’s actually 5! Maybe I’m too sensitive? Support, kind words, a sympathetic glance, sure! Click to share on Facebook (Opens in new window). Click to print (Opens in new window). May 24, 2015 at 3:43 PM.

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