Normal life ? Our journey : The Life of Sarah

11:52 PM

Our journey towards a somewhat “normal” life

This is a little different for me to write but I also think it will be helpful at least I hope it will.  My daughter was born in 2005 at full term. She came out a measly 4 lbs.  We soon found out that inutero the placenta had calcified and had not been giving her nutrients. 
  She stayed 6 days in the NICU 3 days at which I was at a hospital a hr. away and did not get to meet her.   When I did get to her we were promptly met by a lady who gave us information on early intervention. I had no idea what that was but was okay with meeting with a Representative.  
 I am so glad I did threw out the next few years she would be diagnosed with mild cerebral palsy and epilepsy.   
 She is now 8 years old and does not present physically with her cerebral palsy at this time.  Her epilepsy however is a huge stone that we work towards everyday to step over.   I had no idea how many types of seizures there are I was only aware of one  grand maul. 
 Well my daughter has 2 types absence seizures and hypo colonic seizures.  They present very different from what I had previously known.  The absence seizures present itself by her staring off in space and we are not able to get her attention they only last a few seconds  ,the hypo colonic seizures are just little shivers like if you were cold they last up to 7 seconds maybe. 
  We  went through several medications with no combination working for her, several  test later I think we finally have a solution. 
  In November of 2012 we went in for surgery she received a Vagal nerve stimulator VNS for short. Basically a pace maker for her brain. We have seen so much improvement in such a short time that she will be speaking with other epilepsy patients considering this treatment.  
She has also improved in school that they will be placing her in mainstream specials i.e. gym, music, while still attending  her special education  classroom. 
 I am so overwhelmed with the path that we have taken as a family to get here  and to see how she has struggled and to finally be in a place of success. see how she has struggled and to finally be in a place of success.





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