And He said unto me, "My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me."
2 Corinthians 12:9

Friday, June 30, 2017

Day Two Update

A sober reminder... Seeing Princess on a ventilator for the last two days is becoming less scary and I guess is settling in as a reality.  Sad to see this and hopeful for what can come in the future.  What was more sobering today was when we came out of the MRI.  For portions of the MRI, Princess was weaned slowly off of the sedation drugs.  While i got to see her beautiful green eyes for the first time in two days, there was no life in them.  She was not there...  The glimmer and sparkle and shine despite the seizures toll, was not there.  A very sobering reality that the next few days and hours are going to be tough.

So we are now back in the ICU, and the process to awaken her is starting.  I don't have a timeline, and I can only imagine it is going to take some time.  Furthermore, we still do not quite know if there was any brain damage or what effect her BIG seizure had on her.  Grateful for another day of friends-  messages, visits, texts, calls, etc.  Your support has meant so much!

Thank you for your continued prayers.  God has shown me today that all we need to do is ask and He will listen.  I asked for prayer for our nurse and the hope we would have the same one today...God provided!  I asked for prayer with the doctors and my conversations with them.  Praise Jesus, God put a check mark by this one as well and I have a wonderful conversation with Princess' physician and in fact they are good with our previous game plan and I think have recognized the progress and steps we have taken over these last 11 years.

So now we wait and see.  The next few hours are going to be tough.  I look forward to seeing my Princess again, and will continue to hold her hand.  I have been keeping her signature pearls on her and so there is great joy to see this. These pearls have made every hospital trip and were even worn for the birth of Critter!  Speaking of, please pray for Critter.  She is desparate to see Mommy, and as of right now it is not time.  Pray for Princess to be awake and for Critter to continue to be protected.

Prayer Requests:

  • Princess' sedation will be short and we will not have any complications as they wake her.
  • Coming off the ventilator will be easy and she will begin breathing on her own.
  • We will have not experienced any brain damage and that she will make a full recovery.  
Thank you again!

Morning Update

Good Morning, Glory! as I start out the day saying to Princess.  While our experience at this hospital has been really good, I would recommend that they have a more conducive chair for sleeping.  Somehow, a normal, padded, four legged chair isn't quite a Lazy Boy.  Anyway, that is not a complaint as what is important is that I have been able to be by Princess' side holding her hand.

Princess, seems to still be in the same shape as yesterday.  This was expected as she has been forced into her current state by meds.  The challenge yesterday as it was overnight was getting her blood levels- sodium, other electrolytes, urine, blood sugar, etc to all be at acceptable levels.  As of today, the only outlier that we think contributed to the awful event of yesterday morning was incredibly low sodium levels...

Due to the hasty and urgent response that we had to do while in the ER and ICU, we have not been able to share much of our unique past and complexity of Princess' seizures.  Additionally, we are working with a Neuro that has never met us; therefore, he is doing a lot of things from square one with some insight to our 11 year journey.

Please pray for my time with him this morning that we can be on the same page.  As many of you who have followed our journey, we have made significant progress and I feel that some of the proactive steps of the team here at the hospital, are negating some of our progress.  Thus, hopefully the Doctor and I can get more time to connect as he was only able to get about 15 minutes in the ER of her 11 year journey.

Please also pray that with Day 2 we can have consistency.  I have already been informed that we will not have the same wonderful sweet nurse that we had yesterday.  Therefore, we will meet someone new and I hope that we can work together.

Some of you might be wondering about Princess and her CBD or Hemp Oil.  So far, in the hospital it has not been an issue at all.  Praise the Lord as we were concerned as this is our first hospital trip in over two years (since starting the CBD).  The amazing thing to think about is that she has had the best control of her situation to present and has reduced her pharmaceutical anti-seizure drugs by 95% and 86%.  Truly incredible.  Again, a prayer would be that our current situation would not takeaway from the dramatic and huge progress that has been made.  Fortunately, while I have been able to block some things that they are wishing to do, I also realize that there are some things that need to be done in order to provide Princess with an opportunity to "come back."

So, prayer requests:

  • Transition of staff this morning- that we can keep our same nurse, or at least the new one will be an advocate and will work with us
  • Conversation with the Dr now that Princess is stable and we look to try to bring her off the ventilator later today (possibly).
  • For Princess to not be treated as a new patient and recreate the wheel.  Rather that the team here can come alongside and recognize the lengthy experience we have.
  • Princess would be comfortable (as much as she can) in her current state.  That we would see glimpses of Princess come about today- pretty tough to not have her responding!
  • Continued improvement with her blood levels, as well as coordination of our plan with the hospital's plan- MOST IMPORTANTLY- GOD'S PLAN would take precedence.  
  • While I appreciate your prayers for my strength, please keep Princess' mother in your prayers.  She desparately pleas with the Lord for Princess' healing and I know that she could use the support and encouragement, too.
Lastly, to those who have called, texted, emailed, messaged, visited...I truly felt energized in reading all your messages late last night and reading even more this morning.  You cannot know just how much you have helped.  To those who have come and just sat or brought food, it truly has been needed.  I am adamant about not leaving Princess' side and so your generosity has been sustaining!  Thank you for your continued love and support.

Thursday, June 29, 2017


Many of you followed out most recent trip to celebrate B’s grandparents 70th Wedding Anniversary.  It was a wonderful time and quite an amazing celebration!  We had a great time and it truly was a blessing the Princess had a great time as well!  Princess’ health continues to improve and so that is why I am saddened to write that my Princess turn a rather unfortunate and random turn and we find ourselves in the ICU.  At this time, we’re not too sure what brought on the sudden change.

In one instant we were laughing and enjoying our newfound chapter in life as She is continuing to experience freedom from her seizures, and then to start having a cluster of seizures beginning Tuesday night to being in bed all day Wednesday.  Today, Thursday, near 4 AM Princess found herself stuck in a nearly 3-hour long seizure. While God has blessed us with every little detail (EMS crew from the house, to the wonderful staff and physicians at the hospital), this is truly one of our scariest moments in our 11 year journey.  I have said multiple times today, “Just when you thought you had seen it all….” 

So here is our current status:

  • Princess is currently in the ICU and is on a ventilator. 
  • The ventilator was done with Princess being sedated to stop her from seizing and moving about.
  • This enabled a CT Scan to be accomplished (Results are normal)
  • This also allowed the doctors to perform and EEG.  While we are not seeing the continuous seizure pattern that brought us here, we were able to capture a couple seizures so far.
  • Princess is presently in a “coma-like” state and is there primarily due to the medicines.  After they monitor her for 24 to 48 hours, they will take her off the ventilator, see if she can breathe on her own and then will slowly bring her off the sedation drugs. 


  • That Princess would respond well to all that is going on
  • No brain damage due to the prolonged seizure
  • Full recovery
  • God to be Glorified- His healing, whether to choose to heal Princess here or take her “home.”
  • For Critter to be continually protected. 
  • Guidance for Me, Princess’ mom, the physcians