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

Wednesday, February 29, 2012

Little Miss

Well, the Lord has blessed us with thirteen months of our little sweetie being healthy as can be...


She seemed to be getting a bit warm the other night, but acted fine.  However, she fought her bottles & her food today.  She woke up with a face covered in, "my nose was running all night!"  She just kept crying and crying.  Then her little eye got as red as could be and puffy.  So, we called the doctor and stopped everything to go make sure that everything was okay.  Sure enough, she has a low grade temp & a little viral infection.

So, say a prayer for our sweet girl that she gets better quickly.


Lesson Learned...or at least trying...

A week or so ago, my doc here "laid down the law" and said that I need to be on bed rest.  She said that if I have a day that I feel good, I can accomplish one goal (typically, I go crazy on the days that I feel good and try to do everything that hasn't happened), not two or three or four or more...ONE!!  This is tough for me.  I struggle to feel like I'm contributing to the world around me.  Not being able to care for my daughter, my hubby, etc., is tough.  Therefore, I try to do anything and everything else that I am able to do, if I feel well. 

So, after the craziness of last week (twenty seizures in just three days and a trip to the ER), it was a welcomed relief to have fewer seizures each day.  Starting last Thursday through Monday of this week, I was averaging close to one seizure a day!  This was such a gift!  I was "minding" the doc and making myself rest.  Also, most of the seizures I was having were as I was falling asleep or they were in my sleep.  Thus, I felt much like myself throughout the day.

However, we had a precious friend from B's office that came over to help yesterday!  She was so sweet and it was her first time with P.  So, I spent a lot of time with her and P throughout the day.  I did a lot more than I'm supposed to do during the day!  I felt good and wanted to take advantage of it.  After she left, we all went to run an errand that had me standing for quite a while, too.

So, here's where the lesson learned comes in to play:
When we got back home and started making dinner, I had a really bad seizure.  B even thought I had fallen asleep it lasted so long and I was so non-responsive.  I had another one on the way to bed.  Then, I had a really bad one in my sleep that I wasn't able to write down, but B remembered it happening and told me about it this morning.  Thus, three seizures in 12 hours.

It's just so hard to not be out there with my little angel and lovin' on her!!!  Or, just getting things done around the house that need to get done...

Wednesday, February 22, 2012

Update from Home



Well, as you know we are now home! It truly was a special sight watching Critter give out her hugs at church. More importantly, we are so grateful to be reunited with her after two very LONG weeks at the Mayo Clinic.

As a recap, we originally were supposed to have come home after a week. However, we were not able to complete all of our testing, so we elected to stay through the weekend to complete our tests on the following Monday. We woke Monday, but rather than heading to the clinic for M's test, we actually headed to the ER as M got a nasty stomach bug and needed medical intervention.  After receiving treatment, we were discharged from the hospital late Monday night and figured that we would try to complete her tests on Tuesday- still desiring to get home!

Tuesday seemed to go well as we were able to complete one of our two tests first thing in the morning. Around 2 o'clock that afternoon, while waiting for the second test, M experienced a short moment where she could not breathe...which was followed by perhaps her worst seizure in 6 years.  The docs were very concerned and elected to immediately admit her and begin one of the proposed treatments as opposed to waiting to start once we were home.

The docs had to give M an injectable dose of the rescue med because her seizures wouldn't stop at this point.  She ended up having ten for the day before the rescue meds took affect.  Then, the docs started M on heavy duty IV steroids daily to suppress her immune system.  We experienced favorable results (no seizures for three days) and were finally discharged late Friday afternoon.  We immediately caught a flight home that night to get to our girl.  Likewise, Saturday was great (at home with Critter).

However, things changed Sunday afternoon as M had a small seizure. Trying to put the seizure aside and not allow it to be a distraction we went into the start of this week ready to be working on a cure.  However, Monday was filled with eight seizures by the time we turned the lights out and called it a night!
_________________________________________________________________________________


YESTERDAY...Heading into this week back at home, we scheduled to have a follow-up visit with our neurologist to discuss Mayo and treatments going forward.  But, starting out yesterday morning, M felt that something was not right.  She did not feel well.  She did not feel like herself.  Our appointment was in the late morning and by the time we arrived at the doc's office, Meredith could barely walk, could not talk, and was very lethargic.  As she put it, existing was quite a chore.  For the second time, M's situation became very, very scary and intense.  The doc was not too sure what was going on and M was not responsive to the doc's questions or neuro test.  It was at that point that the doc wanted to admit M into the ER, run labs, and start fluids.

Upon arriving in the ER, M had an indescribable experience that was by far, the scariest moment for us in the last 6 years.  M later was back to herself and we were discharged and sent back home.  She had four seizures yesterday.

SO, today we are settling in at home trying to get organized (that's for you Grandpa) and caught up on life from the last two and a half weeks.  M is still not feeling well (she's already had four seizures).  We began our day with God, spending time in His Word, prayer, and Rest.  Putting one foot in front of the other and walking in FAITH.   

Lord, we pray for STRENGTH, PHYSICAL PROTECTION, and continued HEALING.

Sunday, February 19, 2012

Home Sweet Home!!

There is much to write, but I'll try to keep it short and share the details this week.
                                                                                                          


First, thank you to everyone that made it possible for us to be at the Mayo Clinic for so long!  We had Grandmothers, Grandfathers, friends, aunts, etc.  Little Miss P was so blessed.
                                                                                                           

More than anything, I want to share about some special time today at church.  Little Miss P loves worship.  So, B usually checks her in to the nursery to save her spot.  Then, we all go worship and he takes her to the nursery when the service is starting.  However, we got in trouble for that a few weeks ago since that means a baby is checked in, but isn't really there...

This morning, we just wanted more time with her since it's been two weeks.  So, we decided to take her to worship and hope there was still some room in the nursery when worship was over...there wasn't.  That meant she had to sit still for an hour long message from Pastor Evans!!

Yeah, Right!!!  Little Miss was excited to be moving!!  When we left for Mayo, she was doing some walking, but she didn't mind crawling when walking took too long.  Now, little Miss is running all over the place!  So, we had to just sit at the back of the church and in the foyer today with her so that she could expel all of her energy.  She ran up and down the hallways, not seeming to get tired at all!

B had been running all over the place with her and was missing most of the service.  So, I tried to take over.  She was running everywhere!!!  Then, she saw two little girls.  She walked up to one of them and just wrapped her arms around her waist so tightly!  She gave the sweetest hug!!!  She kept on hugging her.  Miss P had her momma starting to tear up a bit...

My sweet little girl that has never really been a cuddler just walked straight up to a stranger and started sharing hugs!!!  After some time of huggin' on her new friend, she turned to her friend's sister and started hugging her, too!  She was just sharing all the lovin' she could with her new friends! 

As they left, we went back over to Daddy!  He had witnessed the sweetness, as well!!  About that time, a lady stepped in to the hallway with her 18 mos. old son.  P reached out and started trying to hug him, too!!  It was a special morning for Mommy and Daddy to watch our little one lovin' on others.  Sorry if this was a braggin' post, but we had to share!!!


Thursday, February 16, 2012

Spam...sorry!

Just wanted to send a quick apology if any of you received the lovely spam that took over my e-mail account this morning.  This must be the beauty of being on your computer in a hospital for two weeks straight.  So, please forgive the spam e-mail that you might have received from our account.  Just delete any weird e-mails that you've received from me this morning and please accept my apology.

Wednesday, February 15, 2012

ERRRRR...G!!!!

Sorry to have been idle for the last two days. As most of you know, we were not able to get the final two tests completed on Friday and so we elected to stay through the weekend to complete our tests on Monday.  While this was a good plan, which also included us getting back home to Critter, M woke Monday morning to a horrible stomach virus that had her in the bathroom for about two hours unable to keep anything from coming up or coming out of her.  We waited to see if this was just bad food from the night before and were able to postpone our test for later in the morning, but her situation became much more severe and it was off the the ER at St. Mary's hospital.  Thanks to Rochester Transportation Services, we literally took the local shuttle service directly to the hospital from our hotel.  Quite humorous to the ER staff seeing a shuttle bus pull into the Ambulance bay with a drop-off patient.  However, this approach got M back to the ER quickly where they were able to start some much needed fluids and assess her situation. 

After some time, M's stomach quieted down, and she was now able to rest more comfortably than before. But she still was experiencing some cramping with her stomach and couldn't tolerate much more than a few sips of water.  So unfortunately, not only were we in the ER not able to complete our tests, but 12 hours later we were leaving the ER headed back to the hotel, and not the airport for home.  Turns out that she most likely picked up the Norovirus, which does lead to the the Stomach Flu, something that has apparently been going around. 

Feeling a little better the next morning/yesterday, we woke ready to take on the day completing our tests and ready to get back home.  For the most part, we started the day okay, packed up our items in the hotel room, headed to the Clinic to be on standby for our tests.  Thankfully, we were able to get called in quickly to complete test #1 and then waited on the afternoon to come to complete test #2 and try our trip home again.  But things became difficult again as M by 2PM was at seizure number 5 and.....

M grabbed my attention to inform me that she could not breathe!  Being very short of breath, unable to breathe a normal breath something was not right.  She indicated that she felt horrible and did not know what was going on.  I was able to wheel her to a nurse to get help.  At that time M started to have a seizure that lasted a little bit longer than normal, and the nurse moved us back to a room to be evaluated. 

Bottom line, this seizure was NOT GOOD!  It was unlike anything we have yet to experience in the last 6 years and it was concerning enough that we were able to visit and meet with our team of doctors who determined that we needed to take quick action.  Her recovery was much slower than normal, and she did have a cluster of seizures with the doctor.  So with the doctor we decided to go with his recommendation of beginning treatment now, and not waiting any longer.   So we did not get a chance to come home, but rather took an Ambulance this time to the hospital and were admitted to begin treatment. 

Due to the her seizures being auto-immune, our Immunologist wanted us to come back home and begin Plasmapheresis.  But with this latest seizure, he recommended that we do high-dose steroids for the next 3 to 5 days, and then possibly move forward with the Plasma Exchange process which would be done over a course of 14 days.  So we are back at St. Mary's receiving meds and praying we'll get some good results and seizure freedom soon. 

Please send your comments and prayers! 

Sunday, February 12, 2012

Some quick pics from our visit at Mayo

The day they released me from the hospital, we had to hurry over to the clinic to see if we could get some of the additional tests run...so, instead of me showering as soon as they removed the electrodes, they gave me a smiley-face doo rag.  Yes, I felt so cool and classsy!!!  The tech encouraged me that it would make others smile since it had smiley-faces on it.

With my nurse and B about to leave the EMU!!
 There was an event called Ice Fest or something to that effect going on this weekend.  All of the local vendors have an ice block carved in to something representing their business and they are all placed in front of the mall area.  You can even order a drink served out of a cup made of ice!  Pretty fun to see, but it was so cold that it seems ludicrous to drink something cold out of something cold.  We were looking for the warmest drink possible!!  Those guys were tough!

We weren't tough enough to be outside in the cold.  So, we had dinner in a restaurant that looked out over this area and took pictures from inside.

This was a ring made out of ice that everyone was taking their pic in front of that night.


We decided to eat out again this evening and went back to the area where they held Ice Fest.  All of the ice sculptures were still on display.  So, here are some better pictures.

This is a set of benches for people to sit on while at the event.

This was the bar, made out of ice, for people to order their drinks.
Something fun that we got to celebrate while we were here is that nine years ago, this past Thursday, B proposed to me.  So, we had to have fun in front of the ice engagement ring!!

Ben proposing again, nine years later!!  Yes, forever!!!
 Mayo has a very impressive underground/Subway tunnel system so that you do not have to walk outside when the weather is super cold!!  So each night as we came back from dinner, we passed though the hallway of one of the hospitals.  We were met with this sign each evening.



Our prayer is that we are able to get in for both of the tests that I need to have run first thing in the morning.  Then, we will try to catch the earliest flight out of town that we can...Please pray that we are able to get immediate appointments.  We also pray that these tests will help point the docs in the right direction....

Saturday, February 11, 2012

Staying

We were able to speak with the doc from the hospital and the airlines and we will be staying to complete the tests on Monday.  Thank you all for praying!

We've got to give a "shout out" to Delta!  Wow!!  They are not charging a single change fee since we are here for medical purposes.  They even asked if I would be up for flying on Monday if I would be going through so much testing.  So thoughtful!

The hotel has been so kind, as well!  One of Mom's dear friends gifted us with points to cover the room.  Since I was hospitalized, we didn't want to waste his points those nights and so we checked out of the hotel and B stayed at the hospital with me.  When we checked back in the hotel, Mom's friend immediately called and had the room waiting for us.  Amazing.  The hotel had been storing all of our luggage and they had it waiting in the room for us!  When we went down this morning to tell them we would be staying through Monday, they had already confirmed the points certificate and had it handled.  WOW!  The Lord has just showered us with precious people as reminders that HE is looking out for us on this trip.  Thank you, Jesus, and thank you to those of you that are being His hands and feet.

Our prayer now is that we are doing our part to complete all of the pieces of this puzzle by getting this testing done on Monday.  We don't want to leave Mayo without having done all that is necessary to get to the bottom of this...

Headed Home, but needing prayer

There were two more tests that one of the docs ordered that the hospital doc said weren't that important.  We tried to get them done yesterday, but they couldn't be done until next week.  We miss our girl so much.  So, we decided not to extend our time here and to keep our scheduled flight home today.

While in the EMU, you are not allowed to get out of bed without a nurse present.  Thus, not much movement at all and nothing like being at home with a one year old.  So, we kept asking/begging if we could move more.  They finally said yes on the last day and allowed me to move around the room with B present, not a nurse.  Well, they came in at 10am to tell me I was going to get to go home and they removed the EEG.  There wasn't much movement during all of that.  We finally got back to our hotel room and I stood in the shower for over 30 minutes trying to get the glue out of my hair (this was the longest I had stood the entire time in the hospital).  Soon after getting out of the shower, my headache was a full blown migraine.  I took the meds for it and then had a seizure that knocked me out pretty good...

The migraine continued throughout the evening.  B rubbed my shoulders because I was so locked up...I had another seizure on the way to bed.  I had another one last night in my sleep.  So, the argument we were making from day one in the hospital just seems to be proven that when my blood flow or heart rate is increasing, so are the seizures.

We are trying to quickly decide if we need to stay through Monday and finish the tests.  We are on the phone with the airlines seeing if the tickets can be changed with no fees.  We tried to go home yesterday and it was a $500+ change fee on each ticket.  So, we're seeing if it's even possible to stay through Monday.

Lots of prayers, please!

Friday, February 10, 2012

Day 5- FRIDAY

Praise the Lord!  While we did not have the amount of seizures we were hoping for in the EMU, we did have a follow-up with the Neurologist that we spoke of yesterday.  Today's meeting was a lot better and gave us back our confidence in Mayo.  Truly, it was a night and day difference and we felt like we were able to get clear direction moving forward.  Additionally, the Neurologist was able to confirm everything that we have done so far and is truly wanting to get M better.

Gameplan-
Our Neurology team at Mayo consists of multiple physicians that each specialize in a sub-specialty of neurology.  Epilpesy, Immunology, and Autonomic Dysfunction.  Our team, and the Neurologist that worked with us in the EMU all agree that we need to focus on the Immunologist's recommendations first.  Long-term, if none of the proposed treatments work, we will do invasive measures like brain surgery.  Yes, the surgery is intimidating, but even more so because a)surgery will not provide a complete cure, b) M's seizures are bilateral and while the right hemisphere is being controlled by medication, the left side is still seizing and this is M's dominant side of her brain; therefore, there is a much greater risk to her cognitive and physical capabilities if we did a surgical approach.

So what to do?  Again the EMU confirmed that the seizures coming from the right hemisphere of her brain are controlled.  So the seizures that she is still having are coming from the left.  The Immunologist's treatment plan is to do 2 weeks of Plasmapheresis.  We are not sure yet if this is something we elect to do at Mayo or close to home...still praying for that decision.  After plasmapheresis we will evaluate M's progress.  If we still need to do treatment we will then do heavy steroid treatments using Solu-Medrol.  Thereafter, we will look to more invasive options such as a Vagal Nerve Stimulator (VNS) and then brain surgery doing a resection. 

It was good to feel that there is a pro-active approach and we had multiple conversations and confirmation today that the docs here are intrigued and really want to come up with a solution.  The next step for the docs is to take M's case to "conference" and have a meeting of the minds to get insight and feedback to make sure that the current plan is in fact the direction we need to be heading. 

We are very excited and look forward to many phone conversations with our docs as we get back home and move forward with treatment.  More importantly we are extremely excited to be reunited with Critter (she thinks we live in Mimi's computer due to our Skype conversations)!

Day 4

Howdy from the EMU!!

First point of the day: nine years ago today, the best looking and most amazing ever, asked me to be his wife for life!!!  I don't know if he knew what he was getting in to, but I'm blessed beyond measure that he is my hubby!!!!  Thank you, Lord, for B!!

Next, we had truthfully hoped to be out of the EMU at this point.  At the rate I was having seizures (since December), I should have had plenty by this point.  I had EIGHT on Monday alone!!  However, I have only had three since I was admitted yesterday morning!  Typically, we would be rejoicing in so few seizures.  Yet, here we are trying to trigger them.

We were told that the doc would review all of my records yesterday and this morning.  Then, we would see him for rounds around 10am.  Well, he arrived in the room this morning a little after 11am.  We were also prepped that he was one of the best docs on the floor and was definitely the one to see.  They told us how funny he was and that he likes to crack all kinds of jokes.  Well, we barely saw a smile come across his face.

The doc saw B's Corps sweatshirt and asked about Texas A&M.  He's Korean and so we talked about our potential adoption someday.  This was all completed in about two minutes.

Then, he got down to business.  He basically said he still needed to look at my chart (thought he was supposed to do that yesterday), but that he didn't have much to say right now.  What?  We intended to only be here for two days in the EMU and not have to stay another night...this would allow us to be home this weekend to be with our girl.

He wants to see some more seizures because they are all appearing to be on the left side of my brain.  Whereas, the brain surgery (more accurate/detailed view) showed they were on both sides.  If they are all on one side, they want to consider removing that part of my brain.  However, after the testing yesterday, they said it could be too much of a risk with loss of brain/verbal function.  Yes, I know there are many that would love it if I stopped talking, but I would love to still be able to talk to my hubby and precious baby girl.  You know?

He basically left telling me to be patient.  With this being our third trip to Mayo and seizures are continuing to increase (except for the days they actually need me to have them), patience is not a virtue that I display well.  We came to Mayo with the idea that we were going to throw everything at this and try any new ideas they had, yet they are bringing up ideas on treatments we've already done, that didn't work, or treatments that have been ruled out as not worth trying...So, we're a tad frustrated.  We keep reminding ourselves that we leave each visit to Mayo frustrated and then they call us a few weeks later with ideas.

So, they are trying to gather as much as they can diagnostically and then my case will "go to conference" in a few weeks to determine the treatment plan.  They were trying today to push for brain surgery, but I didn't think it was an option since the seizures have been bilateral.  However, we spoke with our neuro in Dallas today and she explained that it could be a choice since the ones I'm having now are only on the Left side and they believe the meds are controlling the ones on the right...

That's all we know today!  Thank you for checking in and praying!!

Wednesday, February 8, 2012

Update Day 2 and Day 3


Sorry for no updates yesterday.  It's continuing to be a whirlwind tour, but we are grateful for the physicians here as they seem to be taking a proactive approach to test, uncover, and truly get to the bottom of M's diagnosis.  Yesterday, Tuesday, was a very long day for M as she began the morning doing a 4 hour IQ exam to determine what damage, if any has taken place.  Praise the Lord!!!!  M's results indicate that from an IQ point of view she is still just as brilliant as her original IQ exam found in 2008.  While that indeed is good news, it was not able to answer or provide insight as to why M can be forgetful with certain words, important life events, or even names as you have possibly heard us explain or been witness to...After the IQ Exam, we went off to do an EMG (Electromyography) Test.  This was another 2 hour test and then finally we did a test that we had never heard of....a Thermoregulatory Test or "Sweat Test."  This was another 2 hour test that as you see by the pic, left my Princess looking...well, pretty purple... and of course I couldn't help but to immediately start singing upon first sight The Flying Purple People Eater.  Although, I do need to clarify that it should be perceived that we see it that M needed to watch out for a monster in Rochester that ate Purple People...Rim Shot, please.....
Mayo Turned her Purple!!!
Then it was off to a really long shower and done for the day.  Before our day was officially over we did dine at a fine Italian Ristorante where the Lord provided for two awesome encounters and two new friends.  The folks in the area are so friendly.  Please pray for our new friend, L, who has a tough decision as to moving forward on her treatment with Hodgkin's Lymphoma.

We had an early start today, day 3.  M was admitted into a detached Mayo hospital, Saint Mary's.  She was admitted into the Epilepsy Monitoring Unit (EMU) for evaluation.  This is the fourth EMU to monitor M. The goal for our time here is to have a lot of seizures for Mayo to observe and use in their diagnosis/treatment plan.  Please pray that the docs will get the information they need because M has only had one seizure so far today (which was caught in the study), but has not had anymore since then, which is odd because she had 8 on Monday.  The doc said he wants to create the worst case scenario.  Thus, the goal is to record as many seizures as possible while she's in the EMU and then do a couple more tests back at Mayo.  Then, she will have follow-ups with the physicians and hopefully determine a treatment plan.

As of right now, we aren't sure as to how long we will be in the EMU, but our hope is to be out by tomorrow or early Friday allowing us to come home sooner and be with Critter. M has to have a lot of seizures in the next 12+ hours for that to happen, though.

Please pray again for our new friend L and her treatment decision for her cancer.

Please pray for M and her strength.

Please pray for the docs and staff that they truly can find out what is happening and that a treatment option, that will be successful, will present itself. 


Tuesday, February 7, 2012

1st Day Update

I'll try to make this quick as the most amazing man on earth is super sleepy and I'm supposed to be getting quite a few hours of sleep tonight before one of my tests tomorrow.  As far as progress, today was good.  As far as seizures, today was bad. 

First, the Lord blessed me with a great Saturday.  I only had two seizures, which allowed us to have a super fun family b-day party focused on our sweet little one!!!  As you know, yesterday was a little crazy with lost luggage and not arriving at the hotel until after midnight...

So, this morning started with an MRI.  I had a seizure while in there.  So, we had to repeat one of the scans.  I have started to "tense up"/get a bit more tonic or shake in a few of my seizures.  This one caused a bit of a tonic reaction.  Then, we had a very uneventful blood draw.  We got to have some good morning hellos and we love yous with our precious little one.  We already miss her so much.

Next, I went for my EEG.  The glue that they have to use to attach the electrodes is a seizure trigger for me.  So, soon after we started the EEG, I had a seizure.  In the past, we've found that if someone speaks to me during a seizure, it seems to last longer.  So, each time I've had EEGs, they've left me alone.  As many of you read, my last visit to the Epilepsy Monitoring Unit (EMU) showed that my seizures are actually starting before I feel the physical manifestation.  Well, they found that again today.  All of the previous hospitals have said they don't want to intensify anything.  Mayo says, "we want to see the worst case scenario."  So, they don't mind triggering more seizures or making them last longer if they get to see the full manifestation.  So, as soon as they saw it on their screen (before I felt it) they came running in asking questions and trying to get me to open my eyes.  I have always thought I could open my eyes during a seizure if I wanted to, but that the lights, etc., were too bright and so I keep them closed until it's over.  Not so much.  I could not force my eyes open, but I was eventually able to remember the phrases they asked me to repeat back to them.

My sweet, sweet hubby made lunch for me and had it waiting for me as soon as the test was complete.  Next was a quick run back to the room to wash the glue out of my hair.  When we arrived, we found online that they had found both of our bags and they should be arriving this afternoon.  Yippee!!!! 

We made it back over to the Clinic to meet with the Epileptologist.  Today was the only day he could see me and he was apparently the one that would have to do the hospital admit.  As of our last visit, they had adopted two little girls from China.  Since then, they've adopted another little one- a boy!  He confirmed the need for retesting in the Mayo EMU.  This appointment was interesting because he seems to be deferring to the Neuro-Immunologist.  However, I had a seizure while in his office.  We think this is the first one he's ever seen.  He tried to run all of the Neuro Function tests that they want to do during a seizure.  I couldn't remember most of what he said (that I'm supposed to repeat back) and it seemed like he was screaming at me.  Ben later played back a recording of the seizure and the doc didn't raise his voice at all.  My hearing is just so sensitive during the seizures.

Next was an appointment with the neuro-immunologist.  He spent an exceptional amount of time with us.  What we heard from him is that he's willing to keep trying treatments, but that he doesn't really see that any of them are promising.  Since I've already had a seizure increase with the immuno-therapy-that should have helped, he doesn't really think the other types will make a difference.  He seems to believe that the autoimmune component caused the damage to my brain, but that it is not the current trigger.  Meaning the damage has been done.  His example was someone that grew up playing football and constantly injured their knee.  Now they are 60 years old and have arthritis and a super bad knee.  This doesn't mean they need to stop playing football and all will be healed.  They haven't played football since they were young, but the damage was done.  However, he's willing to run all of the necessary tests to see if there is a chance that the immunotherapy could work.

He stayed late with us and even gave us some good sushi recommendations.  As we were leaving, I had a pretty yucky seizure in his office.  Ben grabbed him and he came in to walk me through it.  So all in all while we did feel like we were making progress and will definitely know more by tomorrow what sort of game plan is being setup.  It sure was an exhausting day.  We'll continue to post more tomorrow.

Monday, February 6, 2012

It's a beautiful morning...

Welcome to Rochester, MN. Home to the renowned Mayo Clinic. The Foxhole had a good start getting here, but were thrown a curve ball when deplaned at the airport around 10:30 PM to no luggage...fortunately, Delta was able to accommodate us with a trip to Wal-Mart before going to our hotel that supplied us with necessary items for the next day or so until our luggage was found. Praise the Lord, while this morning's wake up came rather early, our email inbox showered us with a blessing that at least one of our pieces of luggage was found! So, today...we find ourselves at Mayo and begin this morning at 6:15AM with an MRI followed by other testing that accompany us as we visit without Neurologist and Neuro-Immunologist this afternoon. Please pray that the docs will have wisdom and will aggressively pursue M's case. We like Mayo, but it would be great if this were our last trip. Please also pray that time will pass quickly as we miss Critter (although she is getting some extra special time with her grandparents). We will continue to update the Foxhole throughout our time. Thank you for your prayers. If you think of it, please also pray for a fellow colleague of mine, Mr. M, whose wife, P, underwent brain surgery to remove a tumor. Pray the results of the tumor biopsy will be favorable and that P will continue to show great signs of progress as she heals.