Treatment!!

What absolutely precious friends we have...

You have each touched my heart and encouraged me so much with your comments and e-mails after my post yesterday!  WOW!!!  Thank you!

Today has continued to be a rough day as far as seizures are concerned.  I've had five so far and was pretty clueless after each one.  I had one at 2:45p and it wasn't until 3p that I asked B what had happened.  I was in a different seat in the car than the one I was in when it started and we were on the opposite side of town.  I don't really know what I did for those fifteen minutes in between the seizure & realizing I had a seizure.  Those are the ones that truly scare me and they just plain wear me out...

We also took P to the doctor today to see why she is crying so much.  The doc said colic.  We threw out the things we had read about colic that would rule colic out as a diagnosis.  She said those didn't matter and gave us some new formula to try.  Then, she gave us a printout explaining colic.  All of the things it states as reason to rule out colic were the questions that we had asked.  So, we think it's probably more gas related (please don't remind her of this post at her wedding one day) and we should just change the med we are giving her to treat it.

My phone gives a daily scripture verse.  It downloaded this morning on the way to my doc appt.:


And after you have suffered a little while, the God of all grace, who has called you to His eternal glory in Christ, will himself restore, confirm, strengthen, & establish you.
1 Peter 5:10


The good news:

We met with my neurologist today and she said we can start treatment next week (Wednesday)!!  I will be hospitalized for three days.  So, we are trying to figure out the best way to care for P during that time as B & Mom will also need to take turns at my side, as well.  There are apparently some pretty great risks to the treatment (i.e., stroke, etc.) which is why I will need to be hospitalized for the first round!  It will be three days worth of treatment.  Then, home health will come to our house once a week for the next twelve weeks to administer the remaining doses of treatment.

There are so many details.  We need to find a way to make sure that P is taken care of for the three days I am hospitalized.  Then, each weekly home treatment is 4-6 hours.  I won't be able to hold her or care for her during those treatments and so we'll need to make sure that we have consistent care for P on those days.  Our church is already so amazing and has a weekly schedule of sweet ladies that come over and help me with P.  However, those days will require even more "hands on" care with P.

This girl loves her Daddy!!

Also, when we got back home tonight, the doc had called and left a message that she had already spoken with the dietitian and pharmacy!!  Impressive!!!  The dietitian will be ready to help with all the necessary items I need for the Ketogenic Therapy (the way the seizures are currently being treated) and the pharmacy is also prepared for the challenges we face with inactive ingredients in my meds!!

The not so good news:

There are severe risks of a stroke and kidney issues.  My kidneys have always been a tad weak and so we'll need to keep a close eye on them.  They will be monitoring my kidneys throughout treatment.  However, this is still a big risk.

The message the doc left also stated that the new version of the IVIg that the hospital has in stock has glutamate as one of its main ingredients.  What does that mean?  Glutamic Acid is the problem!!!  Glutamate is a form of glutamic acid.  It would be like them giving me high doses of MSG.  So, she has put in a call to the purchasing agent for the hospital to see if they can purchase the type that does not contain glutamate.  If they are unable to get it quickly, this will delay treatment to the following week.  We are just ready to get this started...

So, our prayer is God's will be done and that HE gets to be the hero of this story!  Our hope is that HIS will is healing sooner rather than later and if it's through IVIg that we will be able to start it quickly.  As well, that we are able to find consistent, reliable care for P throughout this process.

We so appreciate all of your prayers at the feet of our amazing FATHER!!  Thank you!!!

What Is It Like to Be a Mommy?

I really want to know...

This has been a frustrating road we've been on for the last three months.  It is colored with blessings and trials.

The blessings start with her sweet smile!  They progress to the precious friends that we have that are coming over each day to help me care for her.

The trials start with my seizures.  They had improved so much during the pregnancy, but have increased dramatically since she was born.  We should get more answers tomorrow on when we can start treatment.

I had a few days this week where I wasn't having many seizures.  So, I decided it was time to get to be Mommy!  Though our sweet friends were here, I took P in my arms and held her when she was crying (typically a seizure trigger) and walked around the house (another trigger) to keep her calm.

However, last night (after trying to be Mommy all day), I had one of the big seizures that is followed by me not remembering anything or knowing who I am, what happened, etc.  I told myself it was a one time deal.  B was out of town and Mom was here.  So, I tried to put her to bed (he usually does this) and got some incredible screams out of her (again triggers for the seizures).  I called him in tears asking what in the world I could do to help get her to sleep...I just want to get to be her Mommy without it causing seizures. 

Another precious friend came over today and was so ready and willing to take her, but I told her that I really wanted to get to hold and comfort P.  I had two seizures while she was here that she had to tell me what had happened when they were finished. 

It is so frustrating to have this precious angel and not get to be her Mommy, but have to rely on others.  Mind you, we are so incredibly blessed by our friends that our helping.  I would be scared to be here alone with her because of the seizures.  However, I want to be a Mommy...yet, it seems that when I try the seizures intensify.

PLEASE join me in prayer that the Lord will perform a major miracle and rid my body of these seizures, whether through medicine or HIS healing touch right now.  Please, LORD!!!!  I need to stop because I can't see through the tears to type anymore!

Thank you, precious, faithful prayer warriors!  We love you!

Softly Call the Muster...

Before we move on to the real post of the day...

There was a special on ABC tonight about the Ketogenic Diet.  This is what I've been doing for the last two years to treat the seizures since meds, brain surgery, etc., didn't work.  I've had about an 80% decrease in seizures with this.  It's a great little news blip worth watching.

                                                                                                          

In the Beginning...
Aggies gathered together on June 26, 1883, to live over again their college days, the victories and defeats won and lost upon the drill field and in the classroom. By April 21, 1903, this annual gathering evolved into a celebration of Texas Independence on San Jacinto Day. These early meetings included field games and banquets for Aggies to reflect and celebrate their memories of Aggieland. “Let every alumni answer a roll call,” wrote the Former Students. It was not until 1922, however, that April 21 became the official day of events for all Aggies; thus, the annual tradition of Muster was born. The March 1923 Texas Aggie urged, “If there is an A&M man in one hundred miles of you, you are expected to get together, eat a little, and live over the days you spent at the A&M College of Texas.”

Since tradition tells us that we are to get together with Ags on April 21st each year, we knew this year would be quite different since we don't know any Ags in Rochester!!  Muster is also an opportunity to honor the lives of any Ag that has passed in the last year.

Softly call the Muster,
Let comrade answer, “Here!”
Their spirits hover ‘round us
As if to bring us cheer!

We found out right before we left that one of Ben's clients from Dallas, who is an Ag, would also be at the Mayo Clinic this week.  Perfect, we'll just have dinner with them and have a little Aggie Muster.  However, my amazing hubby decided that wasn't enough.  So, he sent out a message on facebook and an e-mail to every Ag he could find in Rochester!  Thus, we had an incredibly special Aggie Muster in Rochester, Minnesota, this evening.

This is Ben giving the history of Muster.

 Pics throughout the evening...

 Two future Aggies.  

This family is actually moving back to Aggieland in the near future.

Gig 'Em Ags!!

B '02, Me '01

M '86, his wife is a grad of UTD, & both their daughters are current students at A&M.

J '01 & J '06

Tonight was so much fun!  I'm so proud of my hubby.  He walked in to a brand new city, not knowing anyone, and planned a Muster event in just a couple of days.  We even had one girl there tonight that had never been to Aggie Muster all through school or since!!!

Once again, I'm so proud of my hubby!! 

Softly call the Muster....

                                                                                                   

In closing, will you say a quick prayer that we can make our schedule work tomorrow?  We are supposed to be on a flight back home at 3pm-ish.  However, they have ordered a Spinal Tap that will include tests that can only be performed here.  The test is late enough in the afternoon that we would miss our flight.  There isn't another flight out until Saturday morning.

Thus, we are going to go super early in the morning and get on the waiting list for any cancellations for the Spinal Tap.  Our prayer is that there would be a cancellation so that we can get everything done in time to get to the airport in time to check in with all of my food and catch our 3p flight.

Thank you!!

Gig 'Em!!!

Mayo Clinic: Day 3

First, we learned today and it is with great sadness that we lost a dear friend in Brennan Moore.  Please be in prayer for Brennan's family and close friends as his death was very sudden.   

His visitation will be tomorrow night at Rest Haven Funeral Home between 6 and 8 pm. Funeral is to be held on Friday, 11 AM at the First United Methodist Church of Rockwall.
                                                                               
                             
Mayo Clinic- Day 3:

Today, YES TODAY...was a supposed to be a big day.  It was one of those days that starts early and ends late.  Well, that is for the most part what happened.  


We especially were looking forward to this particular day because of what would be our last appointment for the day...our entire reason for coming.


Many of you might already know that from our previous trip here in June of last year, it was discovered that Princess has an unusually large presence of a particular antibody that is most likely triggering her seizures.  Therefore, it would seem that Princess' seizures are more auto-immune related than anything else (i.e., cancer, lesions, malformations, etc.).  So, today we had an amazing opportunity to work with one of the leading experts, if not the leading expert, in this particular antibody, GAD-65.  Now for those of you that like to do research you will find that this antibody usually is associated with Stiff-man syndrome and Type 1 Diabetes.  They are just now seeing that it can also affect the body in other ways, like seizures.


Anyway, we had a busy day.  First meeting was with our POTS specialist who was able to provide a little bit more insight and understanding that POTS and Princess' seizures are truly independent of one another.  However, he did want to defer to the Immunologist that we would be seeing this afternoon.  After seeing him we then had to get some additional blood work done and then off to more appointments.  


Finally, we were at our last appointment for the day- the Immunologist.  Bottom line, he confirmed that given all of Princess' symptoms and her level of GAD-65 present, her seizures are most likely auto-immune.  Secondly, treatment IS AN OPTION!!!  He is confident in both statements simply because of our pregnancy.  GOD IS GOOD....ALL THE TIME!!!  Recall that we felt strongly the Lord leading us to become pregnant and that we did!  In a way, the Lord ran a little test of His own to demonstrate that Princess' seizures improved and decreased throughout pregnancy.  Thus, doing immune therapy treatment would most likely help Princess get rid of her seizures.  Bottom-line, the doc seems to think that Princess would respond well to treatment because pregnancy was good (note that Princess' seizures have increased substantially since giving birth).  Oh and by the way, as many of you have joked, "maybe y'all should just be pregnant all the time..." there might be some truth in that.....NO, we are not!  


Treatment-  our slate has suddenly become even more full as we complete our week here.  Over the next two days we will be doing more diagnostic testing that has not already been completed that needs to be done for Princess' future treatment.  Once the doc submits his write-up and recommendations we can begin treatment in Dallas.  Treatment will involve at least 12 weeks of therapeutic injections of IVIg.  Then we will be back at Mayo in July for reassessment, followed by more treatments over a multiple month time frame, though not as consistent, and then most likely some sort of maintenance schedule to ensure that these seizures/antibody stays away.  


So there you have it.  We are greatly encouraged, especially by our final appointment today, but there is a little frustration in that we see treatment as now being a lifelong journey.  Please pray for that.  Pray for God's peace.  God's healing.  Wisdom for everyone involved.  Thank you and we look forward to seeing many of you soon.  Pray for our strength for tomorrow as we will be very busy and will be trying to accomplish much.

Lastly- for many of us Aggies, we will be meeting at some location or another to gather together for Aggie Muster.  Recall "On April 21st each year, on the anniversary of the Battle of San Jacinto, Aggies gather together, wherever they are, to commemorate fellow Aggies who have died during the year. The tradition was begun 21 April 1903."  Like the March 1923 Texas Aggie urged, 'If there is an A&M man in one-hundred miles of you, you are expected to get together, eat a little, and live over the days you spent at the A&M College of Texas.'  And to that we are doing the same.  If you know someone in the Rochester area please mention to them that we will be having Muster at the Mayo Clinic.  Already we have about 10 Aggies that will be joining us to relive our day of our beloved Texas A&M.