Friday, November 1, 2013

Strength for today

"The Lord will Fight for you, just be still"

Exodus 14:14


Questions that attempt to shatter my faith:
  • Should I stop asking for the un-askable and come to Jesus for things that are more realistic and attainable?  
  • If Sunday's diagnosis declares her to have epilepsy than why do I seemingly waste my time trying to change it?

For years I have taken on the battle of Sundays seizures. For years, even before she was born, I have prayed for healing for my little girl.  Sunday's diagnosis is Aicardi Syndrome and she was diagnosed at two days old.  One of the markers for this syndrome is seizures of the worst kind—they are intractable.  Intractable means that they always return and medication does not help. All Aicardi girls have seizures.  
I do not know for sure why I ask God to do something that has seemingly never happened before.  Sundays condition makes her nearly required to have seizures yet I come to God several times a day and ask him to take them away.  I feel childish and na├»ve when I realize I am asking for the impossible yet I am entrenched with scripture encouraging me otherwise. 
I am reminded of Matthew 19:26 when Jesus looked at them and said, “With man this is impossible, but with God all things are possible.” I am reminded of Luke 11:9 "And so I tell you, keep on asking, and you will receive what you ask for. Keep on seeking, and you will find. Keep on knocking, and the door will be opened to you" and I wait with Isaiah 40:31 "but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint."
Am I asking for God to move a mountain I cannot move? Am I asking for a miracle?   My answer to that is yes.  Yes, I am asking for a miracle with His word as my Hope and strength.   I am asking with his instruction from Matthew 17:20 for He replied, “...Truly I tell you, if you have faith as small as a mustard seed, you can say to this mountain, ‘Move from here to there,’ and it will move. Nothing will be impossible for you.”

Monday, October 28, 2013

Diving In to a New Post

Not only so, but we also glory in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope.

Romans 5:3,4

I finally posted an update after over a year.  I pretty much just gave a clinical update on how Sunday still struggles with epilepsy. When I first began a blog I was only trying out some sort of experiment for some way to stop seizures of the startle type. I believe I did find a prevention method and I am certain God showed me the way.  I do have others to post about too.

My prayer was answered yet Sunday is not seizure free. I feel like God gave me sustenance to endure yet he had not completely removed my struggle.  I begged God to help me and I believe he had— yet my struggle remains. God has strengthened me to endure during the storm and perhaps that was his purpose that needed to be accomplished first.  Romans 5, verses 3 and 4,  begin with our glory in struggles and ends with hope.  A synonym to glory is also beauty and wonder.  I certainly find Sunday is such a wonder and so beautiful that I like to think of Romans 5:3 to be a wonder and beauty and praise as he enables the endurance that leads to hope.
This hope is where I find my current state.  I hope for things to come yet in the meantime, I have learned to persevere as God shapes my character and now hers too.

I have a picture here of Sunday as I noticed all the injury and protective side I posted last time.  Those images are sad and seemingly unhopeful yet they illustrate a life of endurance and suffering.  On a lighter note,  Sunday is happy and energetic and loves to run.  In fact, she has been jumping higher than ever on the trampoline.  She has a busy, fun filled life yet she struggles daily with a bend for God's provision and healing. 

Sunday, October 27, 2013

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.

Saturday, June 9, 2012

Everyday is an opportunity and a challenge

Molded ear plugs, under a neoprene wrap, under her helmet

"I will be glad and rejoice in your love, for you saw my affliction and knew the anguish of my soul".
Psalm 31:7
Now that I have found that Sunday can have less seizures when she wears earplugs I am always hopeful that I can go one whole day without her having one.

I have been trying out new ear plugs with her and so far the plugs that are made from a compound and mold exactly to her ears have been the best.  I just ordered Radians.  Most ear plugs are too big for her tiny ear canals.

Everyday I work to prevent any sounds that can trigger a seizure but there always seems to be something that happens.  I work really hard all day and I am so happy to put her to bed at night when she has not had a seizure all day.  On the downside, each time she has one I am beat up and disappointed.

Some things that have caused seizures for her in the last few weeks are preventable, so it seems.  One seizure was caused by turning on the radio in the car and not having the volume turned to lower, I know this one.  During this time she had only one good ear plug in because she took out the other one and we were unable to find it. 

Another seizure that caused injury happened at school when she did not have her helmet or ear plugs on.  She was not wearing these because the new ear plugs that work best for her seem to stay in without a wrap around her ears but she can pluck them out.  The school staff were unable to replace them as often as she was removing them.

I have learned to not take the ear plugs for granted and think that she will not have a seizure when extremely loud sounds occur.  A loud slam of a door or shout right next to her can still startle her because the ear plugs can only block most loud sounds but not all of them.

In this video Sunday appears to be expressing to me that she wants ear plugs.  Sunday is non-verbal and this is so expressive and clear to me.  I have never seen her do this before but is evident that she wants to have some protection for her ears.  I guess that the behavior she is showing is what she may have been trying to tell me but was not able to formulate. I often wonder how long she has felt this way.

Sunday, June 3, 2012

Update soon

I will be updating soon.  So far, plugs are a miracle for preventing most of Sunday's seizures.   

Sunday, May 20, 2012

Day 14: Preventing more than I can imagine

Sunday at UCSF for a 48 hour EEG. Doctors, interns, and nurses. After 6 years Sunday is still confirmed to have intractable epilepsy.
Over two weeks have gone by and I have been using ear plugs to prevent all the sounds of life that can cause my little girl to have a seizure.  Here is a short list of the things that have caused a seizure these past weeks, with or without plugs in:
  • motorcyle driving by while we were in the car
  • fire engine siren while in the house
  • loud voice from someone clearing their throat
  • a can dropping to the floor in the grocery store 
  • IPOD dropping on the kitchen counter
I have made it my gift in life to prevent these sounds and seek out the perfect ear plugs.  Here is a short list of things our family does to prevent seizures. 
  • place mats on the counters and kitchen table
  • no washing dishes with Sunday nearby
  • warning to Sunday by announcing to her that a loud sound is coming when driving past a train or motorcyles.
  • putting our hands over her ears when a sound is anticipated
  • turn TV or music to low before turning it on
  • muffling sneezes and coughs
I cannot announce that Sunday is healed, cured or seizure free.  I can announce that I have been blessed with preventing more than I can count.  Prayer and diligence is the success for this.

Every third Saturday our church has a prayer time.  I took Sunday this past Saturday and we prayed for her.  This makes me happy.  I am happy to do everything I can to protect my little girl from any harm. 

Wednesday, May 16, 2012

Day 10: Im loving this!

One of the reasons why I started this blog and began to share my home remedy for seizures is because I have had ENOUGH!  I am tired of seizures and the extreme sadness I feel during and after.  I am tired of seeing Sunday slam her head into anything around her because she was startled.  I am tired of seeing her hold on to the gate in our house and watch her hit the floor like a ton of bricks because she was startled.

Sunday and me at the Special Olympics

I wanted to put my idea to work.  I prayed and believed God can move this mountain.  I am so extremely happy to note that although I have seen a couple seizures here and there, I have not seen her collapse to the floor and convulse as I hold her and pray to God that I get to keep her both physically and mentally.  I have heard sounds that have almost taken me to the floor because I have been trained to be prepared to be with Sunday as she endures the suffering of a seizure.

Sad to note that when I was out for a short time tonight Sunday had a brief seizure, a couple minutes.  I am extremely sad to report that she was not wearing her gear.  Before I left, I removed her gear so she could sleep and I prayed for her to be okay and because it was hot today--I did not put her gear back on.  Medication should be enough right?  Nope, it's not. 

8 days and I am smiling from ear to ear as I report that she has not had a seizure at school for 8 days now (Monday through Friday last week and Monday through Wednesday this week).  Sunday is only in school from 10:30am until she gets on the bus at 2:40pm, this is half day for a 1st grader.  For the last two years Sunday has had such bad seizures in the morning that I was releasing her from the ambulance nearly everyday.  The school and her neurologist suggested that we try part time so I can care for her every morning and send her to school when she is stable. 

Its late tonight as I blog and I will go to bed,  I checked on the kids and they are all asleep, so I can blog, and sleep too.