Evening Rest

Again, we cannot thank you enough for your continued prayers.  It's great to know that God is in control!  These past two weeks have been grueling and something that neither one of us can really recall taking place in the last 9 years.  But God has been delivering us through each seizure, each moment, each day.  While we are getting settled this evening, it is actually not in New York!

Thank you for your specific prayers.  Connection was finally made with the New York Physician.  News came to us very late in the day that the transfer was still not in place and that the Physician wanted to actually give us a call.  Towards the end of the day, we did finally get a chance to hear from the Physician.

He obviously agreed that Princess' case is a difficult case.  Some decent time was spent on the phone with him, and from the conversation the following was gleaned:   a) an interstate hospital transport for Princess' seizures is a very difficult process b) insurance was really having difficulty in authorizing the medical transport to another facility qualified at the same level of care c) due to the time it would take for travel from Texas and New York, the opportunity to secure a bed is very difficult d) while our desire is to get good look from the folks in New York, he suggested that truly the most expedient approach will most likely need to occur on an outpatient basis.  This would make for an easier opportunity to get in.

Therefore, the transfer will not be taking place.

Certainly, this was, and is, a tough pill to swallow.  While initially so much was put into getting us there and many phone calls and emails and support was voiced to New York on our behalf, we do greatly appreciate the opportunity that we had to visit with the Physician personally.(An ANSWERED PRAYER)   Therefore, we are approaching the present opportunity from a different angle and perspective and are now awaiting to hear from the scheduler regarding timing of the outpatient visit.  Due to the conversation and despite still having an average of 15 seizures per day, a discharge was put in place to allow for Princess and I to regroup and give Princess some respite.  This also meant we got to have a well-deserved welcome home from our sweet Critter.

So, though Princess is still having seizure,s and these are still very concerning, we do feel that God did answer everyone's prayers and did close a door on some very specific prayer requests.  But additionally, He is still guiding us and is giving a different approach based on His timing and not our own! TRUST IN THE LORD!  We do!

Additionally, we will also be in contact with our Epileptologist in Houston to give him the latest as he has continued to be supportive through this journey in the last two weeks.

Please continue to life Princess up.  We are obviously still very concerned at the moment with how many seizures she is continuing to have.  But, at the end of today, we do feel that God did answer our prayers and saying, "Allow me to do My work." Please also pray for me as the discharge also means that I need to be ever more watchful of Princess during this time and help to support her while not under a medical supervision.

More to come in the coming days.

Update and Focused Prayer

As the day continues, here is what we know:

• Waiting now on Doctor in New York to "officially" accept the Admission.  He is supposed to be calling us regarding the transfer.  Please pray for our words and conversation with him.  
• We did get a report that the original medical transport company was not In Network with our Insurance, thus it was going to cost additional money out of pocket for us.  The Care Coordinators in Texas are now making arrangements through another medical transport company that is In Network.  Pray for this process!  

Thank y'all so much!

Prayer Request...Sure doesn't look like NY

Good Morning,

Thank you to many who have responded with your encouragement and continue to want more specific ways to pray.

Matthew 6:33-  "Seek first His Kingdom and His righteousness.."

• Pray that Insurance would be able to rapidly approve the Medical Transport
• Pray that the New York Physician would be able to connect with the Texas Physician (they played phone tag yesterday).
• Peace for us.  As I mentioned yesterday, it is so hard to sit idle and Princess still experience seizures and not make any progress.  

I will look forward to posting more later!  Thank you!

New York Bound....

Praise the Lord!

We received correspondence this morning that plans would not materialize to get us to New York.  The physician in New York needs to have one more conversation with our Attending Physician here (Texas) and then the admissions process should proceed.  Thank you for your continued prayers!

Prayer Requests:

• New York and Texas Physicians can communicate quickly
• Insurance will rapidly expedite the approval for the medical transport that is in place
• Safety for the flight crew
• timing...God's not man's
• Healing for Princess

Obviously, when we desire something- no matter the need, the want, or desire- we often times are trying to achieve or acquire that something on our own timeline.  I was really convicted last night in reflecting upon the hustle and bustle of yesterday that I was not waiting patiently on God.  My prayer yesterday was "God, your timing, your direction...." and what did I do? Well, I didn't exactly wait patiently.  I fretted, I hurried, I was really frantic.  I tried to make things happen on my own, and was probably even annoying to all who have been involved.  And finally, when the afternoon came and the sun had gone down, there was no more that I could do, God tapped me on the shoulder as if a Father to say to His child, "Now, let me do what I told you I can do..."  

Ouch!  I am thankful for God's word that says "I have good plans for you....nothing to hurt you, but plans for a hope and a future."  I am thankful for the reminder of Philippians 4:6-7 that says "Do not be anxious about anything, but in everything by prayer and petition, with thanksgiving, present your request before God.  And the peace of God which transcends all understanding will guard your HEARTS and you MIND in Christ Jesus."  

Oh, how foolish of me.  Was I anxious?  Sure!  Was it legitimate for me to be so concerned?  Yes, absolutely!  Well then, do I trust God?  yes.  Do I trust God? Yes.  Do I trust God?  YES!!!  So then, was I seeking Him first, and His righteousness?  

Finally, as many of you probably have experienced a time or two, I think one of the reasons God gives us children is so that we can be reminded about what it means to have a child-like faith.  Critter is incredible at giving us those "Jesus in tennis shoes" examples and fleshing out our faith.  Since early on, Proverbs 3:5-6 has been a part of her life, much like it has been for our marriage, my parents, and even my grandparents.  It has been a legacy, a spiritual inheritance that has been passed down from generation to generation.  This morning as I had the opportunity to say "good morning" to Critter, I shared with her my confession to God this morning of not waiting, not trusting.  But more importantly, I took her back to Proverbs 3:5, "Trust in the Lord with ALL your heart..."  and then I reminded her of Philippians 4:6-7 to which she said, "Daddy, I was thinking and singing that verse yesterday, too."  Oh what a great reminder!  Thank you, God!

I will keep you posted as the day progresses and will look forward to sharing more about all the God is orchestrating.  Thanks for your prayers!  

URGENT PRAY

Good Morning,

Please pray for our pending transport.  Things have stalled and it is growing increasingly frustrating as we continue to sit stuck in the hospital.

• Pray for a bed to open in New York.
• Communication with the specialists that would be able to address our needs with a sense of urgency.  
• Hospitals, Insurance, Transportation to all be in good communication with one another.
• Princess' healing-  since entering into the hospital last week, she is at 160 seizures.  Compared to last year, we experienced just over 500 for the entire year.  

Thank you for your continued support!  

Weekend

It has been a long weekend, well, really just one day so far.  Waiting is definitely tough, but we are hopeful for the future ahead.  Saturday was by far one of Princess' most grueling days thus far.  In fact, not since the beginning of her terrible illness did we see as many seizures as we experienced yesterday.  28....yes, 28 seizures in one day.  Please know that the counting did not actually begin until closer to mid day when she actually awoke.  At one point in the day we were experiencing a seizure every 18 minutes.  GASP!!!!  And yet, God is protecting Princess with each one and she come fighting back from each with an exhausted smile.

We were blessed with a visit from Critter and the Queen Mother yesterday and it gave Princess some time to get out of her hospital room.  Additionally, we were blessed way beyond to have a colleague from work come along with their spouse and it was just a good time to connect and then pray together!  We are truly blessed with an incredible family!  Thank you!

So, today it's Sunday, Mother's Day!  Please check in with your Mom if you haven't already.  Please leave an encouraging note here, if you please.  We are already halfway through this day, and hopefully much closer to begin receiving the care and treatment that Princess needs.  FYI, she is still resting, hopefully keeping these awful seizures at bay.

Thank you for your continued prayers and support!

A Worthy Woman

From Proverbs 31:28 -"Her children rise up and bless her;
Her husband also, and he praises her, saying:
29 “Many daughters have done nobly,
But you excel them all.”

It is certainly not the way that Princess imagined Motherhood.  It's not that magical dream that a young girl once had.  And despite the many setbacks, seizures, and pressures of inadequate feelings, God has a bigger plan!  And guess what?  He is working out His perfect plan through an incredible Mommy that I also get to call my wife for life!  

I am amazed and blown away by how someone can endure physically so much daily and yet still make sure that her daughter, Critter, is taken care of.  That a meal will always be ready and available, that clothes will always be clean and picked out for the next day.  Even from a hospital bed, she is able to issue out an action plan like a General orchestrating the most magnificent battle plan.  What a Mother!  

"Her children rise up and bless her..."  How precious of a sight to see Critter run in full sprint to see her Mommy yesterday. Her sweet little voice exclaiming "Mommy, Mommy" with each leap and bound.  For Princess to receive the hug of a lifetime from her precious lil' girl.  How truly blessed Princess is to have the admiration of her young one's heart!  Truly, I do have an amazing wife!  

But, what makes Princess a worthy woman?  Her listening ear to Jesus Christ!  Praise Him for the mark on her life and the the calling for her to flesh out her faith through her adversity!  I pray that she will continue to receive strength daily from him and this current journey will be over soon.  

Additionally, happy mother's day to both my mom and of course the mother-in-law (aka the Queen Mother).  With to be we offer our praise for having an impact that has that planted the seeds of faith early and set the framework in place to build on an everlasting foundation of Christ.  Thank you, to you both, for loving and standing by us throughout our entire lives and still standing strong behind us.  Truly, we both rise up and bless you, too.  

Saturday Update

Thank you for your continued prayers and support!  Many of you have been a great encouragement to Princess through your continued messages!  What a blessing to have so much support!

Well, it is Saturday and we are still in the hospital, locally (27 seizures today).  The transport to New York was not able to take place in time on Thursday. So, while frustrating to not feel like progress is taking place, we rest in God's perfect plan and timing and will continue to lean on Him for peace.  The earliest that a transport will take place will be on Monday; however, this is dependent upon a bed being available in New York's Epilepsy Monitoring Unit (EMU).  Please pray for our time here, but as well for everything to fall into place as God needs it to.

New York City...

Update:  Princess is still having seizures!  we did have 15 total yesterday and are currently at 6 for the day.  Plans are in place for us to begin getting care and treatment in New York.  So, we'll have more to report very soon.

Immediate prayer requests:

1. Coordination of Travel-  we will be going Air Ambulance, but it is just a matter of time.  The receiving hospital does not do transfers on Fridays, so that is creating a burden. 
2. Bed-  Currently, an actual bed is not available, and it might be Monday that everything would take place.  Pray for our peace as God's plan unfolds.  It is incredibly worrisome to continue to have these seizures, be in a spot of feeling stuck and not having the root issue addressed.  
3. Prayer for the Physicians and Staff in New York that will be overseeing Princess' care.  Pray that we will be able to have our history heard as her case is very complex and is not just a quick fix.  
4. God to be be Glorified!  In our trial, we want to honor and give glory to God!  

And finally, "Therefore, since we have so great a cloud of witnesses surrounding us, let us also lay aside every encumbrance and the sin which so easily entangles us, and let us run with endurance the race that is set before us, 2 [a]fixing our eyes on Jesus, the [b]author and perfecter of faith, who for the joy set before Him endured the cross, despising the shame, and has sat down at the right hand of the throne of God.

3 For consider Him who has endured such hostility by sinners against Himself, so that you will not grow weary [c]and lose heart."

Hebrews 12:1-3

Epilepsy Update

As always, THANKS!  Many of you have sent us messages and have offered up your support, and again, it has been a blessing.  Thanks to all of you who are praying for Princess' healing and for our direction of care.

Since Thursday of last week, we have been through two ER trips and then Saturday more or less began our most recent hospitalization.  Princess is currently averaging a little more than 11 seizures a day, but that number has been increasing each day.  Yesterday alone, she had 17 seizures.  What is absolutely mind blowing is that she is currently on her same AED's (Seizure meds), was averaging 1.2 seizures per day, and in just the last 5 days has had more seizures than the first four months of 2015 (FYI- what might be a trigger was a hormone treatment that was started, and quickly dropped/discontinued over a week ago that was an attempt to reduce the seizures even more).

While we did finally get to "meet" (meet it was) an Epileptologist yesterday, it was quickly apparent that the physician was not interested in Princess' overall care, but rather, find a quick opportunity to address our concern and then leave.  It is and was an unfortunate encounter, but yet added conviction that where we are currently located, is not the place for Princess to have the comprehensive approach that her particular illness deserves.  Keep in mind, we have been through three neurology programs in Dallas, one Neurology program and surgery in Houston, consulted with the Cleveland Clinic and Johns Hopkins, worked with Jefferson University in Philadelphia, and of course multiple trips and hospitalizations at the world renowned Mayo Clinic.  While the journey has uncovered a lot, it has also left many experts confused and bewildered as to why Princess' situation cannot be resolved.

For us, it has been a 9 year journey.  There have certainly been trials along they way, God has faithfully seen us through them all.  While multiple doctors have awed in the fact that Princess is not in a vegetative state or even worse, we give Jesus Christ, our personal Lord and Savior all the credit for performing over 8,000 miracles (documented seizures) and having Princess still here being an incredible Wife for Life, Mommy for Critter, Daughter to the Queen Mother, Faithful Friend and Supporter to those she can serve.  My heart is heavy for our current trial, and yet, I sit here resolved to get Princess a solution, especially for this current chapter that has us hospitalized.

Personally, thank you to the World's best Mother in Law.  Who through her own trial is taking care of our lil' Critter and trying to maintain some sense of normalcy for our gift from the Lord.  As many of you don't want for your little ones to ever have to experience at a tender young age, Critter has been protected by God.  I am blown away by His provision for her life and emotional protection, but more importantly His spiritual provision.  Critter is faithful, already, "trusting in the Lord with all her heart and is not leaning on her own understanding, but acknowledging Him" (Proverbs 3:5 paraphrase) and is confident Mommy is going to be better and come back home soon.

And again, thank you to my family for your continued prayer and support!  All of us are at a loss for words and even shocked, but your continued faith in Jesus Christ alone is continuing to strengthen our hope and calling knowing that you are praying us UP!  Nana and Grandpa- Thank you for Proverbs 3:5-6.  You're leaving an inheritance for your children's children (Proverbs 13:22).  Princess and I count it ALL joy to continue the inheritance and carry on the Foundation that you have built.

I also want to thank my coworkers who have been praying and for really 8 years have walked along side of us supporting us in various ways that helped me in providing for my family and allowing me the opportunity to be by my girl, my bride, my wife for life's side.  THANK YOU!!!

Lastly, to many of my personal clients and friends.  You not only allow me to take care of you and your family, but you have come alongside of my family in support and prayer!

So where do we go now?  We truly have been blessed this week to be connected to a young Internal Med physician that has taken the time to sit down, listen, and provide a thoughtful response.  His thought process has allowed him to take a step back, and evaluate Princess' situation, and try to get a handle of thing from a different approach.  It is this intentional approach that has allowed us to be where we are today and Princess with the capability and opportunities that she can richly enjoy even with 1.2 seizures per day.  That said, a suspicion that he had will most likely be proven false with results today.  And while, it is discouraging, it does eliminate one more thing, and points us to needing to find care elsewhere.  Please continue to be in prayer for our direction as we are looking at all opportunities.  While doors are open to previously tried institutions and hospitals, we are also looking elsewhere.  Please pray for God's continued provision- Spiritual, Emotional, Physical, and Financial.  Please pray for our thought process and Critter's protection.

Thank you for taking the time from your day to read, pray, and encourage, and not just us, but One Another.  May you today Seek God's Kingdom first, and His righteousness.  Then go and serve one another.

I will post more when we have an update!

In All things, Christ Jesus,
B

Troubles

It has probably been too long since we have posted.  Truth is, we have been very busy like everyone else, and there has really not been too much to communicate regarding Princess' seizures.  That's been a huge PRAISE!!!  We ended the year on a fairly good note with Princess trending downward close to an average of approximately 1-2 seizures per day.  This year nearly started as well, with the last week of February presenting an exception & quite a challenge, with a significant increase.  For the most part March, calmed as we rolled past our 9 year anniversary of Princess' illness.  9 YEARS!!!

However, in the past two weeks, all that has changed in just the last 10 days as Princess has had over 60 seizures!!!  Just in the last 3 days, she has had over 30. In three days we have also made three separate trips to the ER with the third taking place today after Princess had 7 seizures in a 2.5 hr time span.  Unfortunately,  as most of you know, Princess' case is very complex and we are truly at a point where facilities in our area do not have any answers nor know exactly what to do.  Today has been incredibly frustrating as we rushed to the ER after 7 seizures, had 4 more in the ER, but have not received any treatment.  Sadly, we are even still awaiting to be connected with a doctor that would oversee Princess' care, though we have been moved into the Hospital from the ER.

Please pray for our direction.  We are truly at a place where we need to be nearer to an epilepsy center where Princess can receive the best possible care for her illness.  Please pray that we and the doctors and nurses involved can have effective communication and that most of all, Princess will be healed from this awful illness.

Thank you!