rhombencephalosynapsis.blogspot.com

Life with Rhombencephalosynapsis

Saturday, July 25, 2015. The girls had their 8 year well check this past week. Both girls are the picture of health and both girls grew very nicely. Miss Abigail is now a whopping 42 pounds and 47 inches. That puts her in the 3rd percentile for weight and the 5th for height. It doesn't sound like much but it's on the chart! Links to this post. Thursday, July 23, 2015. Only a child with Rhombencephalosynapsis would ask her mother to tape a reenactment of a fall. This kid kills me. Links to this post.

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Life with Rhombencephalosynapsis | rhombencephalosynapsis.blogspot.com Reviews

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Saturday, July 25, 2015. The girls had their 8 year well check this past week. Both girls are the picture of health and both girls grew very nicely. Miss Abigail is now a whopping 42 pounds and 47 inches. That puts her in the 3rd percentile for weight and the 5th for height. It doesn't sound like much but it's on the chart! Links to this post. Thursday, July 23, 2015. Only a child with Rhombencephalosynapsis would ask her mother to tape a reenactment of a fall. This kid kills me. Links to this post.

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1 life with rhombencephalosynapsis

2 slowly but surely

3 no comments

4 labels doctors appointments

5 growth

6 rhombencephalosynapsis

7 only abby

8 labels falls

9 update

10 2 comments

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Life with Rhombencephalosynapsis | rhombencephalosynapsis.blogspot.com Reviews

https://rhombencephalosynapsis.blogspot.com

Saturday, July 25, 2015. The girls had their 8 year well check this past week. Both girls are the picture of health and both girls grew very nicely. Miss Abigail is now a whopping 42 pounds and 47 inches. That puts her in the 3rd percentile for weight and the 5th for height. It doesn't sound like much but it's on the chart! Links to this post. Thursday, July 23, 2015. Only a child with Rhombencephalosynapsis would ask her mother to tape a reenactment of a fall. This kid kills me. Links to this post.

INTERNAL PAGES

rhombencephalosynapsis.blogspot.com

1

Life with Rhombencephalosynapsis: Rare Disease Awareness Day

http://rhombencephalosynapsis.blogspot.com/2013/02/rare-disease-awareness-day.html

Thursday, February 28, 2013. Rare Disease Awareness Day. We have all seen the myriad of ads for various awareness days and ribbons and fundraisers for diseases. But what happens when no one has heard of the disease you or your child is diagnosed with? Despite the doctors being SO WRONG she still struggles. With everything from balance, to fine motor skills to her social interactions with peers. she struggles. Today is her day. Subscribe to: Post Comments (Atom). Abby was born with a rare malformation of ...

2

Life with Rhombencephalosynapsis: She's disabled?

http://rhombencephalosynapsis.blogspot.com/2014/01/shes-disabled.html

Sunday, January 12, 2014. As a parent of a child with Rhombecephalosysnapsis I find myself doing one of two things (more often that I would like to admit): 1) explaining why my child is "normal" and just like everyone else or 2) explaining why my child is disabled. On the other hand I also come across plenty of people who see her big head, tiny body, spinning around, flapping hands, etc. and look at her like she has rabies. To those people I want to scream "She's a normal little girl". Really well said K...

3

Life with Rhombencephalosynapsis: Only Abby...

http://rhombencephalosynapsis.blogspot.com/2015/07/only-abby.html

Thursday, July 23, 2015. Only a child with Rhombencephalosynapsis would ask her mother to tape a reenactment of a fall. This kid kills me. Subscribe to: Post Comments (Atom). Abby was born with a rare malformation of her cerebellum known as rhombencephalosynapsis. This means that her cerebellum is completely fused at the midline. She also has structural malformations in her. Frontal lobe, partial agenesis of the corpus callosum, enlarged 3rd and 4th ventricles, hydrocephalus and a mild chiari malformation.

4

Life with Rhombencephalosynapsis: I think he likes her

http://rhombencephalosynapsis.blogspot.com/2015/03/i-think-he-likes-her.html

Tuesday, March 24, 2015. I think he likes her. I haven't updated at all lately, which means I really haven't updated on how things are going with Wisdom the Dog. Since he arrived, almost a year ago already, he has incorporated himself into the family very nicely. He knows he is here to serve but he is certainly more of a "normal dog" than the day we brought him home. Posted by Kristen Fescoe. Subscribe to: Post Comments (Atom). She also has structural malformations in her. Follow us on Instagram. I marri...

5

Life with Rhombencephalosynapsis: Update

http://rhombencephalosynapsis.blogspot.com/2015/06/update.html

Tuesday, June 2, 2015. When I was reading over an e-mail I was composing to update how Abby has been doing to our friends at the University of Washington I had to take a minute, sit back, and think about how far this child has come. This what I had written:. I apologize for the delay in my response. Abby is going amazingly well. Her health has been excellent over the past year. She still has asthma, very serious food allergies and is small in stature but this has been her healthiest year yet! What a beau...

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rhombencephalosynapsis.blogspot.com

Life with Rhombencephalosynapsis

Saturday, July 25, 2015. The girls had their 8 year well check this past week. Both girls are the picture of health and both girls grew very nicely. Miss Abigail is now a whopping 42 pounds and 47 inches. That puts her in the 3rd percentile for weight and the 5th for height. It doesn't sound like much but it's on the chart! Links to this post. Thursday, July 23, 2015. Only a child with Rhombencephalosynapsis would ask her mother to tape a reenactment of a fall. This kid kills me. Links to this post.

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Rhombencephalosynapsis Website

In December of 2008, my twin grandsons, Tyler and Tanner were born. Early in the pregnancy it was discovered that Tanner had some type of brain disorder. The diagnosis of Dandy Walker Syndrome. And Joubert Syndrome were suggested. After birth and a MRI, he was diagnosed with a fused cerebellum. That evening his father and the doctor did research on the internet and discoved his condition was called Rhombencephalosynapsis.

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