Beautiful!!!

It's a beautiful morning when you wake up to hear your daughter singing this on the monitor!!

Foxhole Relief Project Part 2

Please pass along as you feel led.

For those that have followed our journey for nearly 8 years to the date, M and I are humbled again for the overwhelming generosity of our friends.  With a leading from the Lord, another prayer weekend has begun for M and her healing.  As your heart leads you, please join me as I pray for healing and reprieve for M, my wife for life, from her seizures. 

We recently spent two weeks at the Mayo Clinic (our fourth trip) to receive the news that 1) there is nothing that can be done for M at this time and we are basically out of options 2) from our specialist, “M will just have to endure this for the rest of her life, and frankly, we are amazed she is not in a vegetative state or even worse, dead…”

So, our faith in Christ alone is strengthened.  Our prayer is steadfast….Healing, but even more than that, God’s glory, DAILY!  For those that might be new to our journey, take a few moments to check out the following website (Foxhole Relief Project, Part 2) that has been made specifically for this time.  We are humbled again by everyone’s support and prayers.  In fact, just over the last 36 hours, M has endured through 14 seizures!

Valentine's Weekend-belated post

Here is my sweet little Valentine, with her magic wand.

Valentine's Evening, B took me to the church where we got married.  It was his plan in August when I got sick and spent the evening in the ER and the following month in the hospital!  Since I don't remember our wedding, it was special to be able to go back and have him tell me all about it!

You might have to click on this to zoom, but the information is so interesting!

The next morning, we made our Saturday stop.

Miss P loves playing with all of his puppies throughout the house.

Pretending to be asleep.

Getting her favorite hugs.

She met a new friend at church, J!  They were all over the place together!!

Sorry that it's blurry, but these are some of our favorite friends!  They joined us for our Sunday lunch at Keller's!!

P got a new teddy bear from one of her "old car guys" and loves it.

Her Valentine's gift from Mr. J!!!

Prayers

You know we don't do anything small around here.  Last week, I started having trouble taking deep breaths.  It was very weird.  Certain breaths were fine, others were excruciating.  I tried to just push through.  Then, C said she wasn't feeling well Wednesday evening.  By the time we woke up Thursday, her tonsils were so swollen they were past the midline, past the uvula.  We got her in to the doc that afternoon where he diagnosed her with severe tonsillitis.  We had her rest on Friday and B stayed home to help with P.  She doesn't seem to be improving much and so we'll probably need to get her back in to the ENT this week.

Then, we were able to get me in with a new doc in town.  She said my lungs sounded fine and sent me on my way.

Then, Pierson started to show signs of allergies & was up each night coughing like crazy.

Yesterday, I woke up having had a rough seizure, a migraine, and the pain in breathing was getting much worse.  So, the doc ordered a CT scan and started me on antibiotics.  It seems that I have more seizures on antibiotics and we have seen that this time as I was blessed to only have four seizures last week.  However, I've already had five in the last two days.  We received the results of the scan and it appears to be some type of pneumonia.

Then, Miss P decided that her allergies and drainage should kick in even more.

The final kicker is that our leader is sick.  Appears to be the flu.  Temp went from 99.9 this evening to 102.4 is about 30 minutes.  We gave him meds and it kept increasing.  We tried cold wash cloths, alcohol on the soles of his feet, etc.  Nothing was bringing it down.  So, he took a shower and it came down while in the shower and for about two minutes after he got out of the shower.  It has since spiked again.  Please pray that his body will fight this quickly.

Please pray that each one of us heals quickly!  Thank you!

Lunch

Daddy came home for lunch today and Miss P was so super excited!  She started screaming with joy and covering her face as he walked in the door.  She immediately asked him to sit down so that she could make him some pizza (Mimi & Pa got her a wooden pizza set for her birthday and she LOVES it!)!!

So, she had Daddy sit on the couch.  Then, she came back with a towel, napkin, & bib.  She put the towel under his feet (we couldn't get her to explain why), the napkin on his lap, and the bib around his neck "so tie no get dwirty."   Then, she went to get the pizza.  Once she returned she realized she needed plates and cups for both of them.

Daddy blowing on the pizza because it was so hot.

Yummy!!  This pizza sure is good!

Thanks for taking care of Daddy's lunch today!

Doesn't it look good to you?

FAST Prayers

Just a very brief and quick update!

The Lord has been AWESOME in guiding, leading, and working out our schedule this morning.  We began around 5 this morning arriving at the clinic just after 6:30 doing labs.  Thereafter we were able to getting squeezed in for another test that wasn't supposed to take place until we would already be gone.  PRAISE GOD!  Lastly, we were able to be moved up with our Neurosurgeon for our very last consult.

So, we are waiting to go back for the surgery consult.  Please pray for our communication with the Surgeon as well as our time with him.  Surgery is a very risky proposal and option for Princess and would be merely an "experiment" in hopes of reducing Princess' seizures.  Therefore, there are still a lot of unknowns and we are hoping for some insight from the Surgeon along with his expert opinion.

Other Important Prayer Request:
Please pray for one of my coworkers and his family.  We received a prayer request for his sister "L" who had surgery to have her gall bladder removed and is now facing a possible liver transplant.  During this process, she has been CareFlighted and is in the ICU.  Pray for L and her family.  Please pray for my coworker B and for answers and guidance for their entire family.

A Comprehensive Visit

Our time at Mayo is about to come to a close.  As we have previously shared, it has been an interesting visit with multiple highs and lows.  All in all, we have probably had our most comprehensive trip in four years.  We have been absolutely amazed by our busyness here at the clinic.  In the past, we have had downtime to gather our thoughts, update the blog, check emails, and check in with family and friends.  This go-round, not so much!  As mentioned earlier, it truly has been a whirlwind.

Overall, today was a good day.  We met with an Endocrinologist, Nephrologist, Internal Medicine, and lastly our Neuro Specialist that deals with Princess' dysautonomia.  Additionally, we had more testing.  Thank you for your continued prayers.  Princess has been able to keep her strength up despite the chaotic schedule and continuing to have numerous seizures.  At the time of posting this evening, she has had five seizures today.

Thank you, as well, for praying for our visits.  Progress has been made in discovering more about Princess' seizures.  Unfortunately, we are not coming home with a cure, but do feel that the direction we are heading could provide some relief in the future.  In our future we will most likely have more trips planned

Answered Prayers:
 - Communication with the Physicians both in the Hospital and the Clinic
 - Revealing and telling information regarding Princess' seizures.  We can now reasonably assume which seizures are occurring on the right side of the brain vs. the left side of the brain based upon physical manifestation.
 - Direction and Peace regarding medicine changes
 - Many of you have been praying for Miss C and we are EXTREMELY happy to announce that she has been granted permission and an extension of 6 MORE months to be with our family.
- Two of our main Physicians here have been fighting and not stopping in trying to find a solution for Princess.  It has been great to form a relationship with the doctors and just learn from them.
- Faithful friends who have journeyed well (both back home and here in Rochester)
- God's provision for us while here and the many blessings
- Healing of Critter's ear infection
- Opportunities to share Christ through our story and marriage

Lastly, if you know someone who is going through cancer or has dealt with cancer and has survived, today is World Cancer Day.  Praise The Lord for His healing in so many and Praise God for my healing just 7 years ago!

We'll look forward to posting more soon!

Cancer Survivor Day!!!

While watching the Super Bowl, we learned that today is Cancer Survivor Day!!!!

So, to each of you Cancer Survivor's out there, Praise the Lord and Happy Survivor Day to you!!!

I am especially grateful because it means that I still have B by my side, in sickness and in health!! 

We also got to celebrate and spend time with one of our Mayo friends, L, that is also a Cancer Survivor.  Same type as B, but her's was much more progressed!

Having dinner with our friend, L!!!

She is now cancer free, too!  So, everyone celebrate with us!!!  Praise the Lord for all of those cancer survivor's out there that He chose to heal!!!!

Still Cold!!!

Thank you to the many who have checked in on us from this weekend.  We are still at the Mayo Clinic undergoing more testing and more doctor appointments.  Lord permitting, we will be home by week's end.  This day has been a whirlwind while we are trying to knock out as much as possible.

We are making some progress and will look forward to posting more later this evening after we finish our day.

Be praying for our next appointment that we are about to be called for...We are meeting with the Neuro Immunologist to rediscuss possible auto-immune therapy or maybe some new findings from our time in the hospital.

By the way, I did get to experience -9 degree weather last night for about 4 minutes without a jacket.  It was AWESOME!

Update and Hospitalization

Thank you for your continued prayers.  First, thanks for praying for Critter.  She is doing better and is hopefully on her way to a full-recovery from her double ear infection.  We absolutely love the opportunity that technology has afforded us as we have been able to have multiple Skype sessions with her.  Certainly, we miss her soooooo much, but having Skype enables us to "see" her and the same for her to "see" us.  Praise the Lord!

We are in the hospital today for day 2 of monitoring.  Yesterday ended up being a very long day with us checking-in to the hospital around 7a and then getting set up, introduced to new nurses, detailing an 8 year history with the staff, and then pausing to take a breath.  Fortunately, and unfortunately, Princess did have 7 seizures yesterday.  The good news is that the unit did capture most of the seizures and so it will be interesting to learn if these seizures were any different from what has already been thoroughly documented.

We are continually grateful for our dear friends that we have made that are here in Rochester.  They have been such a blessing by getting us to the grocery store, taking us from the airport to the Clinic, from the Clinic to the hospital, and even one our newest friends braiding Princess' hair before the EEG leads were attached yesterday!  What a blessing YOU have been!  We have truly been blessed by your generosity and friendship.

While the tough cases come to Mayo, you really want to hope that every tough case gets a cure or fix.  As we mentioned earlier, it is becoming more and more apparent that there may not be a "man-made" cure for Princess.  That said, we did become frustrated this morning after our first visit with the rounding team and doctor when it was stated that Princess was having seizures and therefore, we need to increase her medicine.  That was just about the extent of our visit this morning and so it has left us fairly frustrated for a good portion of the day.  We want to feel like Mayo is fighting for Princess.  That, yes, there might not be a fix, but we are going to try to figure something out.

Over the last few years, the time and attention that has been given has set a standard in the treatment here.  So, it is hurtful when that message is not consistent.  And again, that is what happened today.  Please pray that tomorrow will be better.  We're not too sure if we'll get the chance to be out of the hospital tomorrow or not, but we do want to make sure that the information the docs are getting is going to provide further insight to Princess' situation.

We'll keep posting and in the meantime, thanks for praying!

My little P and Big Precious Hearts!

First and foremost, will you each stop and pray for Miss P?  She started feeling bad on Sunday and started running a fever.  Gamma got it down with a bath, but she's continued to feel yucky.  So, Gamma & Miss C took her to the doctor today and she has a double ear infection.  It is so hard to already feel like I don't get to be her Mommy on a daily basis, but even harder to be stuck here at the Mayo Clinic while she is sick at home.  I want to hold my baby girl and help her to feel better.  Please pray that she heals quickly.

Next, many people have commented to B about how polite he is and so he must be from the South.  It's an honor to be by his side.  However, we have seen amazing hearts in Minnesota, as well.  A precious friend that we met a few years ago picked us up from the airport, took us to the grocery store, and has checked in each day!  Another friend picked us up this evening and took us back to the grocery store.  Her husband is a radiologist and he has offered to give a second look at all of my scans.  Then, the first friend that I mentioned, went above and beyond today.  We check in to the hospital in the early morning for my epilepsy monitoring.  We have found that it works much better if my hair is in braids/corn rows.  They get cleaner readings and I'm not as big of a mess when it's all said and done.  I mentioned it to her and she has a friend that is a cosmetology school graduate.  They are going to pick us up super early tomorrow morning, take us to the hospital, and braid my hair and get it ready for the monitoring for the next 2-5 days!  Aren't they precious?  I don't want to wake up that early for my own appointments.  However, these two precious ladies are waking up super early, taking us to the hospital, and making it possible for the docs to get good reads on the EEG for someone they barely know!!!  WOW!!!

We'll try to share more about today's appointments once we get a chance tomorrow.  However, I wanted to beg for prayers for healing for Miss P and blessing for our friends L & J that are going to help us with my hair!!  Thank you for your prayers!

There WILL BE Peaks and Valleys

Most of you have most likely seen the sharp, jagged lines of the waves of a heart on a heart monitor machine.  While we did not necessarily witness this yesterday, our day for the most part, sure felt like we were those jagged lines.  Experiencing the ebbs and flows, the peaks and valleys, the frustrations and joys, one doctor and another...

We went from Urology to Endocrinology, back to Urology, to Cardiology, and then finally Hematology- just to give you a glimpse of our journey yesterday.  Most of our appointments were consults and opportunities to gain more insight into a very complex case.  We generally look forward to these types appointments and enjoy the learning that can come from them.  While a great deal of learning was done, we did have a bit of frustration this morning as we began as one of our consults proved more to be how much the doctor could prove we could be wrong as opposed to a colleague prior to the actual meeting was more than impressive in gaining insight and educating us.  While this particular appointment was frustrating, it was just one appointment of the day, and did not dictate the rest of the day for us.

Yesterday's big appointment was actually with Hematology.  From this appointment we were better able to understand Princess' iron deficiency anemia and how we would continue to treat her.  We greatly appreciated their teaching approach but more importantly, their desire to listen to the patient.  This typically is the case with most of our Mayo appointments.  I think that is one of the things that has stood out about our whole Mayo experience.

From the Mayo Clinic's Model of Care:

An unhurried examination with time to listen to the patient
At Mayo Clinic, we treat a whole person rather than an isolated disease entity. We recognize the additional time it takes to listen to patients and assess their needs in order to make sure that everything possible is done to provide quality care for our patients.

While we didn't get any "ah-ha" information or new links to Princess' seizures,  we did find great value in furthering our education and learning so much more about our complex bodies.

We have many more appointments today before we head to the hospital tomorrow.  Our prayer is that much can be accomplished today.  We are also trying to figure out the details of our hotel.  We don't know how long we'll be in the hospital and so we don't know when to tell them we'll check back in...we are praying that they might allow us to just leave our stuff in our room, since the hotel isn't full, but not charge us (wishful thinking?  Yes, but God can do big things).  Otherwise, we'll need to repack everything and put it in storage here at the hotel and then borrow their fridge for all of our food!

We are also praying that many of the scheduled appointments can be rescheduled as they are planned during the hospital admission which means we couldn't get to them.  So, many details need to be worked out today.  Please, Lord!!

Closed dooor, open window?

As B mentioned in the previous post, we were hoping for an "open window" yesterday afternoon with my neurologist, after the closed door we seemed to receive with the neuro-immunologist.  However, he basically said that he didn't really see that there was much to do but live with seizures for the rest of my life and try new meds any time they come out and see if they work better than the other 12+ meds we've already done.

We brought up the idea of any other newer choices or options.  The options seem to be bleak.  The "aha" moment that we were hoping for just doesn't seem to be happening.  He finally said we could talk to a neurosurgeon about a Vagus Nerve Stimulator.  So, they are going to try to get that set up for us.  However, that is a permanent implant that attaches to your vagus nerve and triggers something when a seizure starts to try to shorten it.  It's kind of like a bark collar for a dog.  Every time I seize, I run a magnet over it and it trains my body not to seize.  They say it could take up to a year to get it set up and they would expect a 1-2% success rate.

I think the tough part is that we walked in to these appointments with a great deal of hope that we were on the road to answers.  That it wouldn't be too long before I could just have Mommy & Miss P time where she doesn't have to be in a highchair or grocery cart strapped in....that I could be a wife to the most amazing husband ever and that I could be a daughter and any other role I'm called to be playing in life.

So, we start over today with a brand new list of docs to see if any of them see anything glaring that has been missed before...

Thank you for your precious prayers for us!

Rejoice in the Lord always. I will say it again: Rejoice!  Let your gentleness be evident to all. The Lord is near.  Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. Philippians 4:4-6

Day 1 Update.....Closed door?

A very WARM-hearted Howdy! from a very, very cold Mayo Clinic.  The air temp reads -12 degrees Fahrenheit at this present time of posting, but the windchill has it feeling closer to -42.   We have not ventured outside, but through the window, it definitely looks cold.  Even the locals are commenting on how this just isn't right!!!

We began our day very early this morning and have literally not stopped.  From mostly diagnostic testing and imaging, we did have one appointment this afternoon with our Neuro-Immunologist.  We generally welcome this appointment with this doctor as he has been the lead in focusing in on Princess' autoimmune component of her seizures.  He is a thinker and definitely educates us along the way, to that we are very appreciative.  

A) Please pray for Princess.  She has had four seizures today and is pretty exhausted due to her events.  Additionally, because we have been going non-stop since about 5 AM it has been a long day.  

B) The biggest update of the day came with the above mentioned Neuro-Immunologist.  Bottom line, he basically indicated that Princess' condition is maybe not necessarily and auto-immune condition anymore.  He indicated that since Princess has not responded more favorably to the prior auto-immune treatments that moving forward with chemo will probably not have any impact and that his concern with doing chemo was more focused on the side effects and the shot the immune system would take, over the potential for no favorable impact to Princess' seizures.  

That said, he indicated that their is really nothing more that he can do and we would be best to focus our time and attention with our Epileptologist.  This would lead to adding additional medications and/or other therapies like the vagal nerve simulator.  

This news is obviously a hit and it is not fun hearing your doctor say that your current situation is probably not going to improve (from an autoimmune approach).  So therefore, please pray for guidance and wisdom while we are here.  Please pray for our upcoming Neuro appointment that will take place in about an hour.  This next appointment will be with our Epileptologist, who is supposed to have been briefed on this previous appointment.  

Thank you to you all.  We'll continue to update along the way!

B

Mayo, Trip 4

Some of you who have been following the blog know that we have been to Mayo before to specifically work with them on Princess' case.  Due to the recent months and worsening of symptoms, we found it was necessary to make the trip once more as Chemo is possibly the next step in our journey.

So we bundled up and braced ourselves for the onslaught of cold weather and are now in Minnesota at the Mayo Clinic.  We will definitely update while we are here and will keep you posted on the latest developments.

Please pray for our time here.  First, that God would be glorified.  There is a lot of opportunity here to share Christ and love on others, so we pray that we might be able to listen to others, and share Christ's love and hope in a challenging time.  Second, that we would have great appointments and follow-ups.  During our time here, we'll accomplish lots of tests (that could trigger more seizures) and consults with various specialists. We hope that we'll get a clear direction of what is next for Princess and most importantly guidance in stopping her seizures.

Finally, pray for our warmth!!!  It's cold.  The high on Monday is supposed to be -22 degrees F with a windchill of -51.  In fact, it will be so cold that the schools in the area have already been cancelled!

Thanks for your continued support and prayers!

Dances with Wolves

One of Miss P's favorite things to do on Sunday is go see the "old cars!"  She loves them.   Well, one Sunday, she got more than she bargained for...

Driving the truck!

Checkin' out the fancy car...sorry that I don't know what any of them are called....

However, one Sunday, there was more than just old cars waiting for P.  There were wolves!!!!  Yes, you read that correctly.  One of the gentleman that comes up there has wolves.  So, we all got to play with them.

She wasn't sure at first!

This guy really started to take a likin' to her...

Then, she decided they should be best friends!!!

Let's snuggle...and boy, did they ever try to give her kisses!

One more stop in the old care before heading home!!!

Isn't that a gorgeous face?