The Fourth Watch

In the New Testament Gospels of Matthew, Mark, and John we are given an account of Jesus walking on the water.  This miracle came after Jesus had just served up an amazing feast to over 5,000 people.  I am reminded of a message by our Pastor that went into great detail of this miracle....




Jesus, having just finished a busy day of preaching sent his disciples out onto the sea in a boat.  As the disciples were midway through the sea, their boat was not able to make any progress because of the waves and a storm.  But, during the fourth watch, Jesus came walking to them on the water, and thinking they were seeing a ghost they cried out.  Jesus calmly said to them to not be afraid for it was Him.  They then received Jesus into their boat and the gospel of John says that immediately, they were on the other side of the sea.


I am reminded too, Princess has loved this passage and message that was brought to us by our pastor.  A key point to understand- Sometimes, being in the will of God means we might go through difficult times.  Jesus told His disciples to get into the boat and to go to the other side.  Doing what He told them to do, they obeyed.  Jesus knew they were going to struggle.  He knew there would be a storm, yet He told them to go and they obeyed (not fully understanding what lay ahead).  And so it was, the sea and water became a problem for them.  They became fearful, yet they were doing what the Messiah had told them to do.  But then....isn't that some of the best two words...But then, Jesus came to them walking on the water...walking on the very problem that had them scared.  And then, having received Him into their boat, they were immediately on the other side. 


Have you struggled with something God has called you to?  I know I have...I know we have....and it has been our constant trust in Jesus Christ that we are in His plan, and time and time again, He has calmed our fear and taken us to the other side!  God is sovereign....That means He is in control of ALL things! 


Now all this occurred in the fourth watch...sometime between 3-6 AM.  I title this post the Fourth Watch because just after 3 AM Princess was intubated, sedated, and put on the ventilator.  Since approximately 4 PM (now yesterday), for nearly a full 12 hours Princess has not stopped seizing.  She has been given so much Ativan (rescue drug) that I have lost count, she has been given additional drugs on top of that and still, she is still seizing.  Thus, the only thing left to do was to shut her down.  And this truly is what needed to happen.  Princess has not stopped thrashing about, hallucinating, and seizing literally all day.  And if I am honest, she has been having seizures non-stop since this past Thursday. 
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So, here we are in our fourth watch of the night.  Princess and I have maybe had one hour of sleep, and now that she is medically out, I pray that the seizures will soon stop (as I type this, she is still seizing).  Though I am not fearful at this time, I am praying, like many of you that Jesus will come and take us immediately to the other side


Till my next post, continually praying! 


Pray for:

• Seizures to stop
• Since we are back in the same unit and floor as last time, that we might get our sweet "Angel Nurse," Sarah.
• Princess' brain will be protected
• Memory will be restored- very apparent that she has lost a lot of memory and cannot even recall her last hospitalization just two weeks ago.
• Peace and renewed strength and faith for me.
• Peace, understanding, protection for Critter.
• Strength for the Mother-in-law, aka Princess' Mommy, aka, the Grandmother, aka, the Queen Mother (Hope that brings a smile to you M3)

I am the Lord...Do NOT Fear

Growing up I had the privilege to go to a camp called T Bar M.  It is truly a second home for me and I have such great memories and God moments there.  From time as a camper to working there during summer in both high school and college, it truly had an impact on me.  One of my favorite moments at camp was doing praise and worship and singing a song simply title, Isaiah 43.  The lyrics are:


When you pass through the waters,
I will be with you,
And the waves they will not
Overcome you.
Do not fear,
For I have redeemed you,
I have called you by name,
You are Mine.


When you pass through the fire,
I will be with you,
And the flames they will not
Consume you.
Do not fear,
For I have redeemed you,
I have called you by name,
You are Mine.



This song comes to mind tonight as it has really been a difficult weekend for Princess.  Since being home we were able to slowly adjust back into life, so it seemed.  Monday was spent getting reoriented around the home and then deciding to take a small trip to the grocery store and see what memory would come back while at the store.  Tuesday was a chance to rest more and take it slow.  Wednesday was another small trip followed by an opportunity to spend some very precious time with a friend who has recently been diagnosed with Stage 4 Hodgkin's Lymphoma.  By Thursday, Princess was feeling well enough to begin to reorient herself with some things on the computer and even a short visit with Physical Therapy as they will be coming out to the house to help her in strengthening her legs, help with her balance.  Additionally, we have a sweet friend who came and took Pierson for a quick play date that allowed for us to get some necessary items taken care of.  Unfortunately, whether our work was too much, too soon, or something else, Princess' seizures returned after experiencing a two week hiatus. 


While the evening was met with a seizure and a few almost seizure moments, we were soon met with daunting thoughts and even some intimidation of what we just came out of.  Friday, we tried to muster through and had a doctor's appointment that served as a distraction and then we were able to have our customary Friday date!  While the day provided for some distraction we still ended up with a couple seizures and overall just being completely without energy.


Saturday was a tough day that meant Princess was in bed for most of it and pushed through one aura after the other, though we were grateful to not have to count any seizures.  And that brings us to today...


While our hope, our prayers, and our thoughts were that today was going to be much different, it has turned out to really be quite a rough day.  While we're not quite to two weeks ago, my mind is bracing for the next moment that I will need to get Princess back to the hospital as the seizures and auras have picked up, quite a bit!  Again, we're not too sure what to make of this... Is her threshold just so low right now that anything (literally- emails on the computer, a walk to the mailbox, visual stimuli, strong scents- perfumes, detergents, oils, etc.) can trigger a seizure at any moment.  We don't want it to be so, yet just even this evening moving was even too much. 


So, to the War Room I go.  And I ask you as well.  And why I ask you to go there and talk to our Father in Heaven, don't only go there for Princess.  We prayed this evening selfishly for our own situation, and yet our words and our hearts were quickly taken to pray for many more that are hurting this evening...


Pray for those that are affected by Cancer- we are praying for you...
Pray for a husband that just lost his wife and is now left to raise twin 2 year old boys...
Pray for a family that is struggling and needing to find a new home..
Pray for a Sister that is grieving her own sister who is severely ill, yet due to family strife, she cannot find her sibling and love on her.
Pray for a grieving family who has just lost a daddy, a husband, a friend. 


So, I thank God that He is strengthening me.  I thank God that he is strengthening Princess.  Truly, the waves rise up and don't overcome us.  The fire gets hot, yet we are not consumed.  Blessed be the Lord!  Truly He is the Lord and there is nothing to fear!


Lastly, thank you to our dear friends, brothers, sisters who are continuing to daily encourage us! 




"When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you.  When you walk through the fire, you will not be burned; the flames will not set you ablaze.  For I am the Lord your God, the Holy One of Israel, your Savior"    -Isaiah 43:2,3

Welcome Home!!!

HOME!


Amazing! Awesome! Incredible! Comfortable! Renewed!  We are finally home.  After more than a week in the hospital, we are finally home.  It has been quite a week and you have been amazing to support us, pray for us, and encourage us.  And while we not in the hospital it does appear that this next week we will need to take things slowly as Princess begins to readjust to life and does need to take time in relearning many things. 


Critter is super excited to have us back and today seemed to be a good day to just rest, get some much needed family time and most importantly, take things slowly.  Our pace today was a nice slow pace and we greatly enjoyed some time with friends who blessed us with lunch and some wonderful time praying together. 


As for the future, the physicians still are not quite sure why Princess' sodium level dropped to the level it dropped to.  Additionally, they were still amazed by God's work in Princess and how far she has come along in just a short time.  Her recovery time is truly amazing and much faster than expected.  For now we are humbled and definitely mindful of the brevity of life.  Moreover, we are continually grateful for God and His work this past week.  Last Thursday, through tears I shared with my family as I opened my phone call:


 "Trust in the Lord with all your heart, and do not lean on your own understanding; but in all your ways, acknowledge Him and He will direct your paths." Proverbs 3:5-6


This has been our life verse since the two of us became one in August 2003.  And before that, it was my parents, and before that my grandparents.  What a legacy!  We are honored to carry the torch, and truly, it has been our trust and full faith in Christ alone for our guidance this week.  Thank you again and we appreciate all your encouragement!

One Week Day 8....Early Post

Well, it really has been a whirlwind of a week.  I don't know that I really have any more words to describe what it has been like.  In one sense, I'm holding my bride's hand, combing her hair softly back with the other, crying, and telling her that it is okay to go "home."  And in another a week later, we both are amazed by what we have just walked through... still holding hands, I might add. 


This week has been nothing less than a roller coaster.  I'm truthfully not even sure if I know exactly what that means.  We have experienced a lot of emotions and I think that truly we are a little reserved and waiting for what is God going to do next.  No doubt there is still a hill or two to climb in the days ahead.  Princess is still working through several cognitive things- working a cell phone, peoples names, faces, events.  Even some newly created memories seem to have just vanished.  All in all, she is taking these things in stride and I am amazed at her resilience with all that she has endured and it is evident to see a peace that only God can provide lead her demeanor at this time. 


We did get some early visits in the day with our physicians.  They are pleased with where Princess is at this present time.  Again, ahead of any expectations.  Each day, like we have seen, they have seen an improvement and are commenting on how much she is able to communicate- her voice is getting stronger, her mobility- able to move more about the room, and of course the lack of seizures. 


Regarding her seizures, or lack there of, it would seem that we are in the process of building her threshold for seizures.  Over the last two we have seen that reading on her computer and cell phone can trigger her seizures or at least her auras much more easily than before.  With what she has just endured, this isn't surprising, yet a reminder that we will need to be slow with our introduction of certain things. 


Today, has been a good day.  We were with several friends who provided us food, water, and some GREAT COFFEE!  Thank you.  Your time, thoughts, smiles, and prayers with us were so welcomed and encouraged us to keep going!


Lastly, if today can continue to be good (No  seizures, and no more auras) then our physicians do find it reasonable to send us home tomorrow at some point.  We won't fully know until doctor's rounds tomorrow.


Thank you to everyone.  Again, it has encouraged us and we are seeing the Great Things He has Done!!!  Princess is enjoyed hearing me read, re-read, recap, and share all of your comments, messages, emails, texts, etc.  She is even starting to do a little reading and responding of her own. 




Please pray:

• We would continue to share the Gospel of Jesus Christ with those that we are in contact with.  We had a brief moment to share the visual of adoption with one of our physicians and that as sons and daughters of Christ (those who have believed in the heart that Jesus is Lord), we are all adopted.
• Princess would still pace herself as we look to transition back home
• Princess would not have any seizures today or tomorrow
• Guidance for our time in the next week- home life, family life, work life

Day 7

Sorry for the slower updates.  Please note that things are improving and getting better for Princess.  While it does appear that we still have some work to do (memory recognition, speech therapy, physical mobility skills), Princess is making incredible strides exceeding the doctor's expectations.  We still do not know when she might be released, and I think that it keeps being pushed back a day or two later (Right now looks like Friday or Saturday). 


As of today, our Doctor is looking not so much at the seizures, and is more focused and concerned about her initial low sodium reading our first day in the ER.  This serves as an outlier and most likely the reason why Princess was constantly having seizures and why she was in a prolonged 3 hour seizure. And while this may be the actual cause, there is not anything to explains why her levels were so low as now her levels are normal and have stayed normal since coming to the hospital and receiving treatment. 


Praise the Lord, we have still not recorded any seizures since Friday morning.  We did feel a little bit of setback last night and this morning as she had a couple auras.  By definition these are seizures, but not what we have ever referred to as her seizures and what the doctor is classifying for us as a seizure.  And what is interesting is that these auras have come about as Princess has allowed herself to do a little reading both on her cell phone and computer.  We have known that reading can be a trigger for her, and it would seem that her threshold is still not as strong as what we need it to be so that she can do basic reading- emails, letters, books for Critter. 


Therefore, we did what needed to be done and then sat by the hospital window on a couch for the rest of the day and just got to talk and revisit the events of these last few days.  It was good to "catch up" and I had a chance to share with Princess all the sweet messages that have poured in over these last 7 days. 


Another praise, Princess did finally get to sleep a full night last night and had a restful night. 


Prayer Requests:

• Princess would continue to regain strength and cognitive abilities- it is apparent that a lot of her memory has been affected and at least the last few weeks has been "erased."  Additionally, recall of names and faces is difficult. While it is not only constrained to just these things, there are many other things that she just doesn't have recollection of. 
• Princess would remain seizure-free and her threshold would increase
• Princess would be able to recall tasks and items that many of us take for granted- i.e. a cell phone- I had to teach her the basics of her phone yesterday, how to use her computer- worked today on logging in, internet, email. 
• That we would take our time and not be in a rush, rather enjoy this time together and maximize our Husband and Wife roles as well as our Parent role.

Thank you all again for following and praying.  We are blown away by God's provision and literally to be just a week out from when she nearly was taken Home.

Blessing and Encouragement

An update will be coming soon with specific prayer requests as the Physicians are continually amazed by the improvement and again, remarkable steps that Princess is taking.


However, A Meal-Train has been set up and folks are encouraged to follow the link below to sign up.  Any help or support is greatly appreciated.


To view the needs and/or sign up: https://www.mealtrain.com/trains/7n1nr1

"Remarkable" -Day 5

"Remarkable" said the Neurologist to us today.  Princess' progress is nothing short of a miracle.  We were transferred from the ICU today as she has continued to progressively get better. Truly, she is ahead of schedule or any progress that the physicians thought she would make.  Better, what an answer to prayer and to show that God is in control and we just have to continue to put our full trust and faith in Him.  He is working out a plan and He hears the many that have gone before us in prayer.  Humbly, thank you. And again, to the medical community, with what Princess just went through less than a week ago and to be where she is today, it is REMARKABLE!


Princess indeed has had her best day today over these last 5 days.  The first milestone was when she got to stand today for the first time in 5 days.  While wobbly and shaky, I am certain after seeing her today and her determination, she will be fully able to move and walk unassisted soon.  Her strength is very weak and she has shared today that she is extremely sore.  Understandably, she is still very tired and soon after we were transferred our of the ICU, we both were able to take a 2 hour nap. 


Princess' mother, and myself were able to share what happened today and reality for Princess had set in for her.  Obviously heavy, the weight of this whole ordeal is hard to digest mentally and emotionally.  It has been good to be able to just sit with Princess, hold her hand, hug her, and pray together thanking God for this journey and strength in it. 


So today was a day to get settled into our new "home" for the next few days, rest and get ready for a physically active day tomorrow.  We anticipate that physical therapy will be by at some point to begin working on Princess' walking, strength and coordination, as well as improvement of speech (if needed- in the last day her voice is becoming stronger). 


I hope to at the end of this journey list all the pray requests and then display how God has answered them.  It is truly amazing, and I should not be thinking of it as a surprise. 


One key point that I think I need to make that I have not...Princess has continued to be seizure-free since Friday at 9AM.  While this is awesome, in the last two years going 4 days without a seizure is quite common.  What is for us very amazing, is that we have not made any changes in medicines.  We are exactly at the same 95% reduction of one of her anti-seizure meds, 86% reduction of her other seizure med, and still doing the same dose of CBD (Hemp Oil). 


So, Lord willing, we WILL have a great day tomorrow!  I would expect that we will be in the hospital through Wednesday returning home Thursday...


Please Pray:

• No seizures for Princess
• Princess would be able to make it through physical therapy
• Her soreness and other impacts of the ventilator would subside.
• Her coordination and motor skills would strengthen
• Her memory would improve (this being a big one as many of you know Princess has an incredible memory and it has taken a toll.  People, faces, and events have seem to just disappeared in her mind).
• Provision/Protection for Critter- She desparately wants her Mommy back home.
• Provision of strength for Gamma (Princess' mother-aka THE MOTHER IN LAW).  She has been incredible taking care of Critter, manning "the fort," and traveling back and forth to the hospital. 

ICU- Day 4----A day of Rest

Rain has always been my favorite weather system (not too sure if that is correct meteorlogically speaking).  In fact, I have been loving it even more this year as I didn't have to turn on our sprinklers until mid June this year.  A testament to the blessing that can come from rain.  The rain that was provided, kept everything green.  It kept everything fed.  It kept everything nourished.  It was rain that was provided during Noah's Great Flood that would usher in a new creation and provided a rainbow.


A rainbow...A sign of promise to never again destroy the world with a flood.  And yet, it was a storm. A torrential downpour that ushered in a new beginning.  It was a storm that ushered in a promise of new start. 


And so it is, we have been going through a storm.  while the storm has been going on for 11 years, these past few days have been something that I don't think I could have comprehended. 


It has been a blessing to have Princess "back."  While it appears the next few days are still going to be tough, it is hard to hold back with her and want to talk and tell her all that has happened and the many, many, many faithful friends, prayer warriors, countless blessings that have been poured out upon us. 


So while yesterday we were able to share some tears, grins, and even some chuckles, she is needing this day and the next few to just rest.  What her body went through last Wednesday/Thursday I'm not really sure how she is where she is today. 


Well, actually, I do.  It is only because of our Lord Jesus Christ and His saving power through God the Father!  It truly has been unique to have several physicians come by with a report and share the news of no seizures, clean CT, clean MRI and almost be astonished themselves that they were sharing this report.  Especially since just a day or so ago Princess' situation was touch and go.  But, we know that God is Bigger and He is in the business of doing great things. 


In my prayer that I alluded and to earlier in this blog, I prayed a very hard prayer.  I asked of God two options for Princess.  As of today, God has answered my second request, and has made it abundantly clear that He is not finished with Princess yet and  therefore, answering my first request as well. 


So today is Sunday.  The day we try to rest, just as God rested on the 7th day.  And it is apparent that Princess needs to do just that.  She is so weary and is in pain.  Yet, we rejoice that she is awake, breathing, even got to be reunited with Critter today!  Critter was so sweet in constantly saying, "Hi Mommy....Hi Mommy..."  Her little kisses all over Princess' hands. 


So thank you for your prayers.  As many of you have messaged me, I do need strength and am growing weary.  May God richly and abundantly supply me. 


As I have shared, God is truly answering your prayers.  Please join me in praying for:

• Princess' recovery.  They are looking to move her out of ICU and into a normal hospital room.
• Princess' ability to regain her voice and strength
• Her vision to be restored as she has shared that it is very difficult for her to see clearly.
• For her motor skills as she is extremely weak and even picking up a Kleenex seems to be a chore. 
• For our "first" walk.  Possibly tomorrow they will try to get her out of bed.
• For he memory and recollection.  Short Term memory seems to be quite effected.
• For her comfort and rest that would come.  SHE NEEDS SLEEP!!!

Thank you all for caring!  Your support for us in this time has been overwhelming.  I hope that we can truly thank each and every one of you that has given so much in your time, gifts, visits, calls, messages, emails, etc!  


So just as the rain came, a promise was provided and there was a new start.  I pray that the Lord would use this current rain storm for His Glory and we look forward to what He has in store for us next. 

ICU Update Day 3-

First, thank you!!! I will update the blog later as I fell asleep and have had doctor rounds and computer issues this morning. The positive: process was extubated yesterday afternoon around 2:30. We rejoiced and then welcomed Princess back. We shared many tears, grins, and smiles. I even got to kiss her lips!!!

Princess was incredibly sedated and did have extreme difficulty speaking and moving. Another praise to add, no seizure activity had been detected since 9 AM Friday!!!

Today has been a day to try to work on swallowing, motor skills, and working on speaking. She is still pretty lethargic, and a praise is that she will be moved out of ICU later today.

Assuming I resolve the computer issues, and I don't fall asleep, I will try to update this evening.

Than you for all that y'all have done. Your messages, texts, emails are all very encouraging. Princess needs your prayers and I'm anxious to see what the next 24 hours will bring.

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.

INTENSIVE CARE UNIT!!!!!

Many of you followed out most recent trip to celebrate B’s grandparents 70^th 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. 

Prayers:

• 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

Extra Prayers

Please throw in some extra prayers...B woke up this morning with Pink Eye in his Right eye and did his first ever virtual doc visit.    He started the antibiotics within about an hour of the call.  He made sure that he didn't touch anyone at church and was very careful!  However, after our Sunday nap, he woke up with it in his Left eye, too!  So, he's had to cancel all of his appts for tomorrow!!!

Thanks for being prayer warriors!!!

Too much...Too Soon

B started writing this post on the 7th & never had the opportunity to finish it:

Humbling...exhausting....tiring...wondering....

These are just a few of the words that describe what this past week has been like.  In May of 2015 we were nearly at our end and God stepped in!  Praise the Lord for His provision.  Over the course of the last two years since then Princess has been increasingly getting better and has also had the opportunity to decrease her Pharmaceuticals significantly.  In fact one of the meds that we have been on since 2008 we have now reduced by 91%.

So in short, things have been good.  Now this does not mean we are seizure-free, but it is sure nice to be able to go three, four, even five days without a seizure.  One of the hardest things about our wean/taper is knowing when it is safe to go down or is it even time.

This is where he stopped & so I'll try to pick up where he left off.

We have tried to follow the wean schedules that others have recommended on each med.  One med, I have reduced by 83% and based upon what we've learned, the remaining amount will take at least a year to get off of or I could experience worsening of the symptoms, seizures, etc.  Thank you, man, for creating a chemical that doesn't control the seizures nearly as well as a plant that God created, but trying to come off of it causes many seizures!!

So, back to the other med that I've been on since 2008 & decreased by 91%!  You can come off of it a bit faster than the other one and so we've tapered off of it for the last two years, as well!!  We have  such a small amount remaining that we're having to have it compounded b/c they don't make the dose that small unless we get the children's liquid which has a ton of known seizure triggers in it.  We are having to pay out of pocket for it as insurance won't cover it being compounded either.  So, we've been praying for God to do big things!  Thus, through much conversation and prayer, we decided that God was doing a big thing & it was time to just stop it cold turkey!  I only had three seizures in the first five days that we were dropping it.  That is to be expected.  Then, day one without it, I had two seizures, then four, then five, then six.  So, we added some meds back afraid that we had gone down too quickly.  Over the next four days, I had 54 seizures!!!  A total of 74 seizures in the first seven days of the month.  The seizures were bad, many lasting upward of 20 minutes.  B tried every rescue that we know of and none worked.  So, we went back to the last dose of the med that I was stable on...I then went five days w/o any seizures.

So, we thought we were on a roll!  Then, I had nine seizures in one day this past week.  Not to mention that was the day that B started feeling bad & had a fever of 102 & could barely move.  Mom had to come over that morning and get Miss P to daycare as neither one of us could really move.  So, I'm at 84 seizures for the month of March and we're only at Day 18.  The last time that I had this many seizures in an entire month (not just half of it) outside of May 2015 was September 2013.  So, needless to say, it's super frustrating!!

Miss P actually got sick the Wed before & went to the doc & they said she had strep, but didn't have to do the antibiotic if we didn't want her to...we went to the pharmacy and by the time we got inside, she was dancing & singing.  She never had a fever & so she went back to school the next day & was fine.  Then, Tues night/Wed morning of this week, B got sick & he's been fighting it ever since with a terrible cough!  Then, Thursday evening Miss P started to cough and it turned in to both of us being up most of the night (mainly B, though) with her throwing up each time that she coughed.  Praise the Lord, he remembered that we had a nebulizer from a time before that she had a respiratory issue & he did that & she slept for the first time around 7am.  We got her in to the doc on Friday morning and they said it's probably a virus (not the flu), but that she needed to do the antibiotics from the strep as that can cause some serious complications if not treated.  So, she then stayed home on Friday and started the meds.  Poor B keeps having similar coughing fits, but he's out working in the yard today as the owner of our home is coming by on Monday and it's the first time he's ever been in any of our homes, yet we've leased from him since B was going through his cancer treatments over 10yrs ago!!

I want to be helpful, but we've learned that I am not able to use any household cleaning chemicals or vacuum, as it all triggers more seizures.  I even made a vinegar mix today to try to help kill some of the weeds in the yard and I've been fighting seizures off since then...So, I'm being super honest when I say, "I have no idea why the Lord has me here."  He apparently has a purpose for my life because I know He won't keep me here any longer than HE needs me, but it doesn't make it much easier.  B is an incredible encourager, which is why I don't want him to have to take care of me any longer.  I want him to be able to focus on Miss P & her growing in to the young lady that God intends for her to be...I want him to be able to go to work and not have to stay home an entire week from work to just watch his wife to make sure that one of her seizures doesn't kill her b/c she's having so many and they won't stop.  We learned in May 2015 that one of the meds that we have is the most the hospital can do to stop my seizures, as well!  The only difference is that they can inject it; whereas, I have to swallow it at home.

 So, today I'm hurting and wondering why the Lord has me here!  Basically, all that I know how to do, is a seizure trigger.  Reading and writing are both seizure triggers.  Thus, there might be many typos in this or I'll have seizures going back to proofread it.  Standing & any physical activity are triggers as they increase my heart rate dramatically and the higher it is, the more likely I am to have seizures.  Sound is a trigger, too!  We've even tried books on tape, but seizures follow.  Sometimes at church, I even have to step out if the music is too loud.  So, the physical activity & sound triggers are the reason I can't vacuum (and I love to vacuum and see those pretty lines on the carpet)!!!  Though I don't have much of a sense of smell, when my body somehow smells stuff, that can be a trigger, too (i.e., the vinegar)!!  We've had to remove all good smelly stuff from the house as that is a trigger.  Even essential oils can be triggers.  Lavender & frankincense being big ones!

Any chemical that touches my skin is basically a trigger.  Even having blood drawn, they want to use alcohol to clean my skin and can't because I will have a seizure.  They've even tried betadine and other cleaning agents and they are all triggers.  Thus, I can't even help by hand washing dishes that can't go in the dishwasher or put Neosporin on P when she has an injury of some sort.  Clearly, I'm not able to drive.  So, I ask, "Lord, why do you have me here?  What is my purpose?"  I would guess that it's to be a wife and a Mommy, but all that would be helpful in those roles tends to be a trigger.  So, why am I here?  Lord, please tell me!!!  This is so hard to wake each and every day and not know my purpose! To know that I love pulling weeds and B and I used to have so much fun sitting in the yard & doing yard work.  Yet, each and every time that I've tried, I have seizures!!

However, the next time that you see B, pat him on the back and give him an enormous hug because he does it all!!!  Literally!!!  Even when sick, he sat up with P most of the night b/c I kept having seizures when trying to sit by her and be with her!  He is incredible!!  Thank you, Lord, for giving me a hubby that can & will do it all!!!!

 Please pray for our wisdom with the med decreases, if the Lord chooses to keep me here.  Thank you for your love, if you've made it this far!!!

What a difference Year Makes....

Greetings to all!  We had a very long hiatus with the blog.  This was not intentional by any means, and as a lot of things go, you start to get so focused on other things and then your to-do list gets back logged.  Thank you to the many that have journeyed with us through 2016.  It truly is hard to believe that we have not sent out a formal update since September of last year regarding Princess.  Therefore, I will proceed to give it a try and yet in a concise and easy to read manner.

Princess is doing well.  Not to read too much into that, we still do face seizures on a weekly basis.  The blessing has been rather than a daily occurrence, the seizures have backed off and allowed Princess to get some time with Critter (who's now in school) and as well time with me.  We have been very blessed to be on Charlotte's Web Hemp Oil and have literally seen daily a positive effect in the reduction of her seizures and it has been tremendous to experiences several days in a row without a seizure.

One particular victory we shared in was not being in a hospital in all of 2016.  This meant and is continuing to mean that in nearly two years we have not been hospitalized due to Princess' seizures.  Additionally, the monthly doctor visits are now quarterly, and they serve more as a check-in than anything else.  While this has all been great news, it doesn't mean that there have not been challenges along the way.  In doing the hemp oil, it has allowed us to slowly reduce the pharmaceuticals and means getting off her seizure meds.  This has certainly proved challenging and yet rewarding all the same time.

A particular analogy that Princess has come up with during this journey has been a great and fitting example.  While neither one of us has ever run a marathon (nor have the desire to ever do), she imagines that when you have trained and trained for a marathon, your body becomes conditioned to the rigors, toll, strain, and agony that your body goes through.  And in the end, all that training paid off and you become accustomed to the running that at some point your body doesn't flinch at mile 26. Now imagine it has been some years since you last ran your marathon and you awake one fine morning and decide to immediately go run a marathon.  Well, being that you have not run that distance for some time, your body is no longer prepared and you struggle in the run.

For Princess, days without seizures are rewarding and freeing; however, as we string more of those days together, it is the days with one or two seizures that suddenly become very difficult, challenging, and deflating.  So in the end, we are grateful for the results we are seeing, and yet, we still ask for your prayers as we journey on in faith down this long road.  Speaking of, this March will be 11 years that Princess has been dealing with this illness.

Keep in mind too, the more progress we make,
the harder the "fall" and so your encouragement is always greatly appreciated!

Overall, we are continuing to rely and trust in the Lord with His plan.  I am reminded of a message that I got to listen to again from our Pastor.  The message title was, "The Risk of Faith."  The main point of the message:  Sometimes we can be in God's will and still feel like the circumstances are against us.  Sometimes we can be doing exactly what God has called us to, and things just aren't working out for us.  And yet, maybe, just maybe, that is exactly God's plan.  You see, He has called us out onto the water.  He has called us to trust him and look solely at Him and not give in to the myriad distractions that try to take over.  And when we do, it isn't always perfect.  However, we can put our complete trust in Him because His very Word tells us that he is working a plan for you and for me.  And His plan is good!

So, please pray for our journey.  We are now in 2017 and it is another year.  Our focus for our family is to be used by God for His Kingdom.  We pray that Princess' journey will be a blessing to others and that lives, just like ours, will be changed for the better, with something that the Lord has created.  We are looking for each month, and each day to be better than before.

Prayer:

My new favorite pic (May 2016,), ISN'T SHE BEAUTIFUL!!!

• Strength for Princess (this week has actually been a very tough week)
• That our Journey could be a blessing and encouragement to someone
• Safety as we continue our wean off all pharmaceuticals.  
• Guidance and timing for direction

September 11th

Today carries a different meaning for our family!  Though we celebrate the heroics of 9/11 and mourn the terrible loss of life, we also celebrate a life, one that was spared.  Why?  9/11 is the day the Lord used to teach me a lesson about faith!  Yes, September 11. 2006, ten years ago today, five years after the attacks on our nation, Satan tried to cause me doubt.  However, my hubby walked in faith!!  September 11, 2006, was the day that my man was diagnosed with the big “C” word, CANCER!!

The doc came in to recovery, while B was still under anesthesia and told me that my husband had cancer, but don’t worry, he’d be back before he woke up, to tell him!  Don’t worry?  Everyone I had ever known with cancer had died!  What do you mean, don’t worry?  So, I began sending out invitations to my pity party!  However, my man woke before the doc came back in to tell him.  He said, “well?”  How do you tell your 26 year old husband that he has cancer?  Somehow, I stumbled over the words and shared the news with him.  His response?  That’s where my faith journey begins…the first words out of his mouth were, “cool, that means I get to be a cancer survivor!!”

What?  Maybe you didn’t hear me properly?  You have a disease that has taken the life of everyone I’ve known with it!  That didn’t sway this man’s faith!  Not one bit!!  He saw the exciting journey ahead of him!  We have two friends that came to know the Lord through watching his journey.  His statement, “if that’s the only reason I had cancer, it was worth it!?”  What?  Yes, that is the man I am blessed to call my husband, a man that is more concerned about others and their life after they leave earth vs his, while here!! 

B has taught me so much on my own health journey!!  When I’m not feeling well, I think of what he endured and his outlook!!  Thus, my prayer is that God will be the hero of my health journey, just as he is clearly the hero of B’s!!! 

God is already the hero as I watch my hubby love me in spite of ten years of a medical trial and having to do just about everything for our family!!  He is truly living out Ephesians 5:25-33:

Husbands, love your wives, just as Christ also loved the church and gave Himself up for her, so that He might sanctify her, having cleansed her by the washing of water with the word, that He might present to Himself the church in all her glory, having no spot or wrinkle or any such thing; but that she would be holy and blameless. So husbands ought also to love their own wives as their own bodies. He who loves his own wife loves himself; for no one ever hated his own flesh, but nourishes and cherishes it, just as Christ also does the church, because we are members of His body.  For this reason a man shall leave his father and mother and shall be joined to his wife, and the two shall become one flesh. This mystery is great; but I am speaking with reference to Christ and the church. Nevertheless, each individual among you also is to love his own wife even as himself, and the wife must see to it that she respects her husband.

Thank you, Lord, for choosing this man for me, our family, and Your Glory!!!