Hello!
It's been a few years but since changes have been plentiful and major tests are on the horizon, I'm updating the blog for Chey and I to use to keep interested parties in the loop. And since Facebook isn't protecting privacies and messenger takes audio whenever it wants, I decided this was a better venue to protect Chey and all that our family is going thru now.
Since last post, Chey has made it 5' tall! 100 lbs! And we are super excited announce - to a 5th grade level in most subjects -higher in others and is maintaining well.... Or was until a job change moved our family a few months ago. Now her seizures have change and increased again. We've seen a little regression in learning, huge changes in behavior and some slight decline in coordination and fine motor dexterity.
It has taken us 3 visits to different neurologists to find one who could competently take on her case. Within a month she will undergo more bloodwork, MRI, stress test EEG, 72 hour Video EEG, Neuro Psyc Evaluation and more doctor visits.
In addition to medical test, her school district is reevaluating her for their standards in education, social and psycological.
Poor girl is going to be so over being asked questions and going thru procedures she's going to be wishing Santa would take her instead of leaving something for her!
Our Lord has sure blessed us in this time! Even though her seizures are mass producing and morfing into something I have never seen or read about, and even though I have been so frustrated at the lack of medical professionalism in our new state, He has placed us in the hands of amazing teachers and district staff that has seen her need and inappropriate placements and sought change instead of me having to fight for it. He sent me a job that is not only being an unforeseen financial help, but a blessing of support and developing friendships that have been a support and strength to a hurting mothers heart. He helped me find a church that has leaders who remember my name and seek us out to friend Us. And group leaders who befriend my children and youth that have befriend Chey instead of running or snubbing off. He helped her to have a seizure IN the Doctors office since I couldn't find the right words to describe them. A never before happened phenominon!
And my God has made schedule openings happen so that we could get all these much needed tests to happen in the span of a month AND before our insurance resets Jan 1 and we would have to be paying out of pocket for all of it. I am so thankful and blessed for the many gifts my Father in Heaven has bestowed upon my little family. He has brought peace and clarity to my small mind and heart. His love and guidance has surrounded me like an invisible blanket. Thank you.
I've reset everything needed to make updating this site a bit easier. I'd like to ask you to not leave judging comments but ones of peace love and hope. This sweet 16 year old gal needs to feel the love of the world.
First medical test starts Monday! Keep prayers and thoughts aimed toward answers for controlling the episodes to bring Chey relief.
Thanks!
