Wednesday, December 29, 2010

A little Bevin Background and my inspiration for this blog

I got the idea for a blog about Bevin’s JRA after getting a chance to get to know a family whose little girl was diagnosed with Early Myoclonic Epileptic Encephalopathy (EMEE).  They were able to keep all their friends and family informed of what was going on with Grace thru their blog.  And because of the blog, I was also able to follow along with her story and get to know Grace and her family better as well as learn about EMEE, something I had never even heard of.  It also showed me the courage and strength a family could have when faced with their child’s diagnosis.  Sadly Grace passed away in October, but her parents have kept up with her blog and the things they are still doing to find out why Grace had EMEE.  When I start to get stressed or upset about Bevin, I think of Grace.

Since Bevin’s been diagnosed we’ve had lots of questions and concerns and “How is Bevin doing?” from everyone and I hope thru Bevin’s blog I will be able to keep everyone informed on how she’s doing, doctor’s office visits, etc.  I also hope to help people learn about JRA.  To be honest my knowledge of JRA only consists of what I have been told or figured out in this last month, so as I learn things about this disease I will share my new knowledge.  I also hope to be able to find and get to know other parents who are going thru this with their children.  I personally don’t know anyone who has had to go thru this, so I would be very appreciative of any stories and/or advice from other parents letting me know what they have gone thru and experienced.

For those of you that don’t know Bevin, she will be 2 in February; she is one of the most independent 1 year olds I have ever known.  She was doing things at 1 that her brother just started doing/mastering at 4.  She also has one of the biggest tempers I have ever seen…especially for someone so small!  If she doesn’t get her way she picks up the nearest object and throws it.  For the time being it is quite comical watching this little person get so angry, but I know in her teenage years it won’t be so funny.  To sum her up she is a quirky little ball of fire.

Bevin also has a heart murmur that was discovered at her 4 month check-up.  As her pediatrician is listening to her heart he looks at me and says “have I ever heard this heart murmur before?”…Ummm NO! They did an EKG right away, which apparently is standard procedure, but when someone tells you they need to do an EKG on your baby it doesn’t matter how many times they tell you its standard, it still scares the crap out of you.  Luckily it’s nothing that we need to be concerned about and heart murmurs are pretty common, so that was a relief.


Bevin also has Eczema (since birth) and what will likely end up being diagnosed as Psoriasis, both of which tie into the autoimmune disease side.  She has what looks like athletes foot, but it’s possible it’s her Eczema…we’ve been trying a few different OTC things to clear it up, but as of her follow up appointment if nothing helps, we will have to get cultures to try and determine exactly what it is and likely get a prescription cream to get rid of it.  Every time I put the OTC creams on her feet she winces and/or pulls away, so I assume it’s painful for her.

As I mentioned in my first post, Bevin has always walked funny…since the day she started walking she has looked like a new born dear trying to walk for the first time (or a drunken sailor).  We always assumed it was something she would eventually “master”…now knowing that she has JRA and that both of her hips are affected it’s likely she walks the way she does to compensate for her hip pain.  Her limp can be better or worse depending on the day.  Yesterday she was practically dragging her leg behind her, this morning it wasn’t as bad.

Thank you to everyone who has taken the time to stop and read Bevin’s blog and get to know her a little better.  

Below are some pictures and a video of Bevin's limping (she is not a fan of the video camera, hence the scream at the end).


Bevin's limping
video

Bevin's Swollen Knees

Bevin taking her Naproxen in the morning


2 comments:

  1. I love the scream at the end of the video...just sayin :) So glad you are blogging and raising awareness. I read everything you post! Love ya girlie :)

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