An Overdue Update

Now faith is confidence in what we hope for and assurance about what we do not see.

Hebrews 11:1

I have not updated in awhile (521 days) because  I did not know what to say, really.  The description of my blog still says Sunday is seven but she is now eight years old and even more beautiful and lovely!  Although Sunday still has seizures as a result of hearing sounds I know earplugs when used correctly, can reduce countless episodes.  I do not give her earplugs anymore yet I am also thinking that all the months we used the earplugs has somewhat conditioned Sunday to adapt to sounds and she can anticipate and prepare her mind for a seizure coming or trying to take ahold.  In fact, I have seen her not have countless seizures as a result of giving her a warning or intensely telling her that she is simply reacting to a sound.  It works but not all the time.

 

I believe God has allowed me to understand this physiological function and He gives me hope.  I also know that My God is bigger than epilepsy and he has allowed this complicated medical concern to cause me to turn to Him and His Word and increase our faith, including Sunday's. The more I seek him, the less dramatic, scary and seemingly overwhelming seizures become.  Sometimes there are seizure free weeks and other times He simply calms both me and Sunday during the whole thing. I have more posts to come about this.

6 months ago she began to have seizures for no known reason.  For the first time in 8 years I took her to the emergency room for her seizures, we are usually there for injuries.  I had always felt like the emergency room was where they could stop the seizures.  This time, in April of 2013, her seizures were not stopping. I thanked God for her and pleaded to let her stay with us longer.  They administered an emergency medication and it did not work.  They gave her another medication and it did not work.  After a couple hours the emergency room team determined that her seizures were beyond their ability to control and they needed to send her somewhere else. 

I had twenty minutes to decide if I was going to go with her in the helicopter and be air flighted to UCSF Medical Center.  With my husband by my side encouraging me he was going to care for our other three kids I decided to go and could not imagine ever refusing.  We flew to UCSF in about 45 minutes, took an ambulance when we landed and were admitted.  We stayed three days.  Sunday continued to have seizures and they changed her medications around. 

The seizures slowed down, a new medication was added and one other was weaned. I was told her new medication is known to increase severe drop seizures. After a couple days being home, Sunday was reading a book that was on the coffee table.  A drop seizure hit and her body fell suddenly, hitting her face on the coffee table resulting in blood and crying.  I assessed her face and she had hit so hard her teeth were rearranged and she could not close her mouth.  The impact had dislodged her teeth and I had to take her to the dentist to have them removed.

After this incident I say I put Sunday on the highest safety alert possible.  I never allowed her to run freely in any environment that has a hard surface.  I got rid of her high chair as it had a hard tray that  resulted in at least 50 or more injuries, I let her sleep in an enclosed bed and I hold her hand everywhere.  

Her face shield came in and when she put it on it was like a dream come true! For once in years Sunday could walk about any area without any fear of injury to her face.  She had a helmet  before but it could not protect her face.  The first time she had a seizure while wearing this helmet her face hit the floor so very hard I actually thought she cracked and broke the shield. When the seizure was over I checked the shield and it had not broken but it did protect her face from injury. However, she did have a stiff neck for a couple days.

That is a minimal update on how Sunday has been doing  Due to a high alert safety protocol Sunday has had zero seizure injuries in months and I have so much to share about how God is still answering our call out to him.