rsyn1.blogspot.com

rhombencephalosynapsis.blogspot.com

Life with Rhombencephalosynapsis: A Unique Guest Post

http://rhombencephalosynapsis.blogspot.com/2015/03/a-unique-guest-post.html

Friday, March 27, 2015. A Unique Guest Post. I Am hoping to incorporate a new "series" on this blog which will include blog posts from individuals living with RS. If you or someone you know would like to contribute please let me know via the contact information in the right column. The first blog post in the "Life With Rhombencephalosynapsis" Series comes from my girl, Abby. Written By Abigail Fescoe:. Posted by Kristen Fescoe, March 2015. That which does not kill us makes us stronger. Abby was born with...

rhombencephalosynapsis.blogspot.com

Life with Rhombencephalosynapsis: Alopecia?

http://rhombencephalosynapsis.blogspot.com/2013/10/alopecia.html

Sunday, October 13, 2013. One of the more odd hallmarks of Rhombencephalosynapsis is alopecia. Whether male of female, most people with RS have some degree of baldness, typically patches. I was asked by researchers conducting a study on RS to send pictures of her patches and her ears (kids with RS typically have low set forward slanted ears also) and I thought I would share. When she was first diagnosed I remember thinking "how awful. on top of everything else my kid is going to have bald patches". I mar...

rhombencephalosynapsis.blogspot.com

Life with Rhombencephalosynapsis: Slowly But Surely

http://rhombencephalosynapsis.blogspot.com/2015/07/slowly-but-surely.html

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! Subscribe to: Post Comments (Atom). She also has structural malformations in her. Follow us on Instagram. Our words to live by. I married my high school sweetheart and our life has be...

rhombencephalosynapsis.blogspot.com

Life with Rhombencephalosynapsis: Blueberries, check!

http://rhombencephalosynapsis.blogspot.com/2014/05/blueberries-check.html

Friday, May 16, 2014. Food challenge number two was a whopping success. On Wednesday morning we had to be at CHOP by 7:30. Thankfully Abby is so cooperative about the restrictions (only clear fluids after midnight). We were early so we got checked in second. This also meant that we got a bed next to the window! So, now she can add blueberries to her safe list. The next challenge will be in July and that one will be walnuts. Posted by Kristen Fescoe. May 16, 2014 at 1:12 PM. That girl is a rock star.

rhombencephalosynapsis.blogspot.com

Life with Rhombencephalosynapsis: Itty Bitty

http://rhombencephalosynapsis.blogspot.com/2014/10/itty-bitty.html

Friday, October 3, 2014. When Abby was born she weighed a mere four pounds and fourteen ounces. She was so small. I had never held a baby quite as small as she was. As she got older we quickly realized that she would remain small. She was never on any of the traditional growth charts. Thankfully our pediatrician was satisfied with watching her grow along her own curve. She was sent to endocrine twice "just to be sure" but everything was seemingly normal. Guess that outlines just how tiny she is. Subscrib...

rhombencephalosynapsis.blogspot.com

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...

rhombencephalosynapsis.blogspot.com

Life with Rhombencephalosynapsis: Her List of Symptoms

http://rhombencephalosynapsis.blogspot.com/2009/06/her-list-of-symptoms.html

Thursday, June 4, 2009. Her List of Symptoms. I am sure that there are other Moms (and Dads) out there whose kid has RS. Maybe they know it and maybe they don't. I thought it would be helpful to create a list of everything that seems notable for Abs so someone searching will have a basis of comparison. Was a triplet but Baby C was lost in utero. Ventriculomegaly and Aqueductal Stenosis was found via ultrasound at 17 weeks gestation. RS was missed on first MRI (only 1.5 tesla). Feet turn slightly inward.

rhombencephalosynapsis.blogspot.com

Life with Rhombencephalosynapsis: A Unique Perspective

http://rhombencephalosynapsis.blogspot.com/2013/05/a-unique-perspective.html

Friday, May 17, 2013. Most of the members of the RS/RES group that I am a part of are parents of young children with Rhombencephalosynapsis. This is probably because we are not sure what the future holds for our children so we all are in search of answers (and camaraderie! Recently one of our group members, Nichole, an ADULT with RS shared her story with us. She was kind enough to give Heidi and I permission to post it. Without further ado:. To my RES family,. I asked the neurologist what is RES, and he ...

rhombencephalosynapsis.blogspot.com

Life with Rhombencephalosynapsis: Deep Pressure shirts

http://rhombencephalosynapsis.blogspot.com/2010/12/deep-pressure-shirts.html

Friday, December 3, 2010. With the increasing amount of anxiety that Abby is experiencing so too are those around her. She is showing the beginning signs of obsessive compulsive behavior. This occurs in some cases of RS (at least according to the literature) but we had so hoped to avoid it. We have begun the search for a good behaviorist who can help us to figure out what WE should be doing when the anxiety increases. December 3, 2010 at 11:51 AM. Is it something that I might be able to make for her/you?