One in Twenty Six

A few months ago I came across the blog, One in Twenty Six.  The blog was super fascinating to me since it is written by a pediatrician who has epilepsy.  I have had many conversations with parents of kids with epilepsy but this was the first time I was able to connect with an adult who is living life and thriving despite having seizures.  Of course, her history is not the same as Charlie Claire's but it is still refreshing to see that it is possible to have a wonderful life regardless of epilepsy.  

Kristin and I exchanged a few emails and have talked on the phone which was super helpful to me since I was able to ask  her questions that I have never really been able to ask anyone before! 

The purpose of Kristin's blog  is to raise epilepsy awareness by sharing stories of other people living with epilepsy.  I was thrilled when she asked if she could write a post about Charlie Claire since my hope has always been to help another mom who may find herself in a situation similar to ours! 

Please visit Kristin's blog and read Charlie Claire's story! 

Developmental Pediatrician

I originally was not going to post this on Charlie's blog but when I started to write the post about C's appointment at the developmental pediatrician I didn't feel right not acknowledging what has been going on in our lives. 

On Saturday the 12th my (almost!) 93 year old grandmother passed away. While her age would lead one to believe that this was something we should have expected, her health and her young spirit made us think she would live forever! Her loss has definitely impacted me and my whole family and we are currently mourning the loss of this unique and funny lady! 

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Ok, so on to the developmental pediatrician.  

The appointment was totally uneventful which is actually a good thing! The dr felt that Charlie Claire was slightly delayed in some categories but still within a "normal" range! He felt that underneath her minor deficits she is an intelligent young lady and there was no reason to believe at this time that she will have any major long term issues. He said that usually the biggest obstacle he faces is kids having a loving, supportive environment to help them grow and thrive but it was obvious that wasn't an issue in Charlie Claire's case! :) We did discuss her risk for ADHD which we are already aware of and something that is on our radar screen. 

Thursday is C's assessment with the developmental ophthalmologist, will let you know how that 2.5 hour appointment goes! 

4th & Aqua Therapy!!

Can you believe it is July?! 

We enjoyed the holiday weekend at the pool and the beach with friends and family!! 

We are 99.9% sure that Jackson thinks about firefighters and firetrucks ALL.DAY.LONG! :) 

Charlie Claire started aqua therapy a couple weeks ago.  We've been on the wait list for this for quite some time and are lucky to finally get our turn! :) We were interested in aqua therapy for a couple reasons...a) C LOVES the water so we knew this would be "fun" for her! b) it will help with balance, core strength, and continue to emphasize Charlie using both sides of her body equally! 

Next week we head to VCU's Developmental Clinic for an assessment with their pediatric developmental physician....we don't have any concerns going into the appointment but we wanted this appointment more as a reassurance that we have Charlie Claire in all the necessary therapies she needs at this time. We are hoping it will be a good baseline assessment and that we have all of our bases covered in terms of Charlie Claire's development! 

Hope everyone is having a happy and healthy summer!