Leap of Faith....

After several months of ups and downs and being turned down by ever doctor we have taken Harper to we decided to take things into our own hands.  Jim has spent countless hours researching Harper's specific mutation and came across a family in Chicago who is in a similar situation.  After several contacts with them and their doctors we decided to take a leap of faith.  You see no doctor will treat Harper as they feel she is doing the best she can do.....far exceeding their expectations on every level.  We are beyond grateful that prayers have been answered.  That being said it is different to look at your OWN child and say, "Sorry Honey this is it!!  There is nothing more we can/will do."  So after countless phone calls, emails, consultations and doctors appts we decided to try something no other family in our situation has tried, that we are aware of.  We started Harper on Potiga today.  This is a new new anti-seizure medicine, only released in May of this year.  It works on the Potassium channels in the brain which are specific to where Harper's KCNQ2 abnormality is.  This is a leap of faith because Harper is not having seizures, in fact she has been seizure free for over a year.  We are trying this in hopes that it will do something (what we don't know) positive to address her gross developmental delays, physical/cognitive).  She is 15 months old now and functioning at a 6-7 month old level depending on what area you are assessing.

Love having my head massaged after EEG

This entails extremely close monitoring which fills up our weeks with multiple doctors appts (Ultrasounds, EEG, EKG, lab work ...... on top of 5 therapies a week).

Therapy with her new Bamboo Splints

We are trying to give our daughter a shot at the best life she can have and are going out on a limb to get this for her.

We are asking our friends and family for support, good thoughts, positive energy and prayers.  We are hoping this medication will work in a way that Harper will continue to progress and have a chance at all the things we were told would never be possible.  We are hoping that his will open the door for others who struggle with his unnamed disorder.

We are hoping and most of all praying.