persucksisomalbiogenesisdisorder.blogspot.com

An Honest (and Slightly Immature) Look at PBD

An Honest (and Slightly Immature) Look at PBD. Tuesday, July 12, 2016. I've never met a metaphor I didn't like. As a special needs parent, I often find myself on “Can Island.” Can Island is an amazing little island where you are able to focus just on what your child can do – his sweet laugh, his cute deliberate crawl, his ability to make any box into a hat.. Unfortunately, as Max approaches his 3. Over the past few months, we have continued to give it our best shot. Our Tee It Up! Golf event was an ama...

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An Honest (and Slightly Immature) Look at PBD | persucksisomalbiogenesisdisorder.blogspot.com Reviews

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An Honest (and Slightly Immature) Look at PBD. Tuesday, July 12, 2016. I've never met a metaphor I didn't like. As a special needs parent, I often find myself on “Can Island.” Can Island is an amazing little island where you are able to focus just on what your child can do – his sweet laugh, his cute deliberate crawl, his ability to make any box into a hat.. Unfortunately, as Max approaches his 3. Over the past few months, we have continued to give it our best shot. Our Tee It Up! Golf event was an ama...

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An Honest (and Slightly Immature) Look at PBD | persucksisomalbiogenesisdisorder.blogspot.com Reviews

https://persucksisomalbiogenesisdisorder.blogspot.com

An Honest (and Slightly Immature) Look at PBD. Tuesday, July 12, 2016. I've never met a metaphor I didn't like. As a special needs parent, I often find myself on “Can Island.” Can Island is an amazing little island where you are able to focus just on what your child can do – his sweet laugh, his cute deliberate crawl, his ability to make any box into a hat.. Unfortunately, as Max approaches his 3. Over the past few months, we have continued to give it our best shot. Our Tee It Up! Golf event was an ama...

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persucksisomalbiogenesisdisorder.blogspot.com

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An Honest (and Slightly Immature) Look at PBD: June 2015

http://persucksisomalbiogenesisdisorder.blogspot.com/2015_06_01_archive.html

An Honest (and Slightly Immature) Look at PBD. Thursday, June 11, 2015. Frustration and Freak Outs. When Max was born, he failed his hearing screen. At the time, I was upset, but I did some quick research, which said 1 in 10 kiddos fails this screen. We went back to an audiologist about a month later, and he eventually passed the screen. However, over the next few months I still questioned his hearing. I knew what the therapists were thinking, but weren’t saying – autism. Given the predominance of the us...

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An Honest (and Slightly Immature) Look at PBD: GDFR at the GFPD conference

http://persucksisomalbiogenesisdisorder.blogspot.com/2015/07/gdfr-at-gdfp-conference.html

An Honest (and Slightly Immature) Look at PBD. Monday, July 27, 2015. GDFR at the GFPD conference. This past week, Todd, Max, and I attended the Global Foundation for Peroxisomal Disorders (GFPD) Family and Scientific Conference. The conference is meant to bring together families from around the world that have children diagnosed with PBD. All the best PBD doctors were there and available for you to talk with. The conference was a whirlwind of emotion that I feel like I’m still recovering from. You were ...

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An Honest (and Slightly Immature) Look at PBD: May 2015

http://persucksisomalbiogenesisdisorder.blogspot.com/2015_05_01_archive.html

An Honest (and Slightly Immature) Look at PBD. Friday, May 1, 2015. The good, the bad, and the ugly. This Friday, I had the pleasure of meeting with a Mom whose son has also been diagnosed with PBD. With a diagnosis this rare, it truly is a blessing to find someone who is slightly further on this journey than we are. She will hopefully be someone who helps me navigate this complicated world of specialists, treatments, and therapies. Now, please don’t take this as me not loving Todd, because he is t...

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An Honest (and Slightly Immature) Look at PBD: October 2015

http://persucksisomalbiogenesisdisorder.blogspot.com/2015_10_01_archive.html

An Honest (and Slightly Immature) Look at PBD. Sunday, October 4, 2015. Today, we celebrate the 5th anniversary of the formation of the GFPD, a truly wonderful organization that funds medical research and provides support for families affected by PBD. When we first received Max’s diagnosis, we felt lost. The GFPD has provided us (and so many other families) with incredible love, support, and hope on this journey. To donate to the GFPD, follow this link: Donate. Todd, Corin, Ellie and Max Chapman.

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An Honest (and Slightly Immature) Look at PBD: August 2015

http://persucksisomalbiogenesisdisorder.blogspot.com/2015_08_01_archive.html

An Honest (and Slightly Immature) Look at PBD. Monday, August 17, 2015. This blog is kind of depressing, as these type of blogs tend to be, but here’s the thing - my life is not depressing. Yes, PBD is so, so hard and I definitely get depressed (shout out to Zoloft! But there are honestly still these amazing moments with Max that I wouldn’t change for the world. Maybe it’s the white wine talking, but this kid has taught me to truly appreciate life and all that each of us is capable of.

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thejourneyweareon.blogspot.com

The Journey We Are On.....: May 2015

http://thejourneyweareon.blogspot.com/2015_05_01_archive.html

The Journey We Are On. Our son, Ethan, was diagnosed with peroxisomal biogenesis disorder - zellweger spectrum disorder (PBD-ZSD), a very rare genetic disease, when he was just four weeks old. There is no cure for PBD-ZSD and treatment is symptomatic. This is our PBD-ZSD journey. Why do I have hope? Their Words, My Thoughts {Recommended Reads}. How can you help? May 25, 2015. Labels: Infantile Refsum Disease (IRD). Peroxisomal Biogenesis Disorder - Zellweger Spectrum Disorder (PBD-ZSD). May 6, 2015.

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An Honest (and Slightly Immature) Look at PBD

An Honest (and Slightly Immature) Look at PBD. Tuesday, July 12, 2016. I've never met a metaphor I didn't like. As a special needs parent, I often find myself on “Can Island.” Can Island is an amazing little island where you are able to focus just on what your child can do – his sweet laugh, his cute deliberate crawl, his ability to make any box into a hat.. Unfortunately, as Max approaches his 3. Over the past few months, we have continued to give it our best shot. Our Tee It Up! Golf event was an ama...

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