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What will September Bring

Article posted on Monday, August, 23rd, 2010 at 8:00 am

September will bring a significant milestone for Neely.  On September 29 she will have been seizure free for one year!  And with that anniversary brings all sorts of excitement and worry.

I don’t think it is possible to ignore the nostalgia that anniversaries bring.  You can’t help but remember the cause of the anniversary and reflect on how far you have come.  Neely has really come a long way.  Aside from her medication (and its manageable side-effects) you would never recognize her as the same little girl she was just one year ago.

She has regained her balance and an appropropriate attention span.  Her speech and sight (which were the last things to come back) are all good.  She is getting her self confidence back and doesn’t seem nearly as anxious when we have to go to the doctor for check-ups.  She really is quite a little miracle.

On our next check up with her Neurologist there are lots of possibilities.  We may be repeating an EEG and/or an MRI.  She will also be evaluated to make sure she is still performing at or above her age level in all areas.  And we may be able to start weening her off of the anti-seizure medicine.  I think that is both a blessing and a curse.

Recovery is a difficult process (to say the least) Something I never expected to feel was sadness and worry for moving forward.  But it is hard to let go of the things that you have clung to.  I felt it for the first time when we left the PICU to go to a regular room in the hospital.  Don’t get me wrong – I was thrilled beyond belief that Neely was well enough to make the move, but also terrified to leave that level of care.  I felt it again when we moved from a regular hospital room to Roger C Peace, when they begin to ween her off of steroids, and when they released us from her first therapy.

You don’t expect it to be so hard to move forward.  But it is.

I’m anxious for the day that Neely is no longer dependant on medicine.  I’m also terrified to take that medicine out of her system.  Knowing that her body is going to be completely dependant on itself. It’s a strange feeling.  But I know that fear and worry is the [rice you pay to move to the next step of recovery.  And it’s worth it.

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