Pictures!

P & Miss Cathy playing in B's parents' backyard!!

Mimi got Miss P a pair of Hello Kitty snow boots!  No snow here, but she loves the boots!!!!

This smile melts my heart!!!!

Saying, "bye," to Pa before he left for Africa!!!

Wearing Miss C's boots!!

                                                                                                                                           

Getting all of the leads placed on my head when we arrived at the hospital.

HOWDY!!!

All finished!

Little Miss P visiting Mommy's room!

Snuggles with Mommy!!!  I love this sweet girl!!  She brought such joy to her Mommy's heart with her visit yesterday!!!!  She also put smiles on the faces of the docs & nurses!!!

We had a special visitor today, too.  This is Visa, she is a service dog that stopped by to visit because they told the Service Dog team that we are dog lovers!!!  She was a little sweetie!!!

The City of Brotherly Love

Another hospital, another stay in the Epilepsy Monitoring Unit (EMU).  Usually, we go to the hospital to stop M's seizures.  This particular trip is much different.  The goal?  Seizures and lots of them.  Not what we necessarily want, but Lord willing what is needed to help provide better insight towards a possible surgical solution for M.  We ARE only in the beginning stages and still have a lot to learn. 

We checked into the Hospital yesterday afternoon and today has been a productive day...As of the time of this posting M is at 9 seizures so far for the day.  The good news is that our lead doctor feels that enough information has been collected and we will be visiting with him next week to get his interpretation.  A few more tests need to be conducted before we can officially leave, but this trip is for the most part going as expected. 

What a journey.  I don't think we quite realized our accumulation of EMU visits but we have spent months and months in several EMU's, including Memorial Hermann in Houston, Baylor Dallas, the Mayo Clinic, and now Jefferson Hospital.  Our trips have also included consults with the Cleveland Clinc and Johns Hopkins.  It really has been something to share our story with others.  But, God is still the hero and He alone is due all the glory and credit for this journey. 

We did have a special visitor today!  Our little Critter came up today to the EMU!  SSSSHHHHH!  What a sweet Mimi she has that was willing to make the drive with Critter and have the opportunity to love on her while here in the hospital.  It was such a special time and obviously great to still love on our little girl while in a different environment. 

So, we'll post more later.  Please pray for the wisdom of all those involved and that there will be clarity in exactly what is supposed to happen from our time here.  Today has been very exhausting with all the visits and consults and the seizures.  May the Lord continue to proctect M and provide wisdom, understanding, and answers. 

Sweet Memories

Some of my most precious memoriesas a child are of sitting with my Grandaddy and watching football!  I learned to love football because of him and all of the time we spent watching the Dallas Cowboys together.


Tonight we were able to capture a precious moment like that with Miss P and her Pa.  I hope she creates many more special memories like this.

Miss P watching football with Pa!

Then she moved in to watch the Amazing Race with Mimi & Pa.

Such sweet memories! 

                                                                                                                                           

Miss P did very well on the plane yesterday!  We were in the bulkhead and so she got to sit on the floor and play!!

She thought she was such a big girl!

 

Then she ate lunch in my lap!!

You can see she was having fun and Mommy was exhuasted!!

She loved looking out the window!!!

This is a girl after her Daddy's Own Heart (lovin' planes as much as she does)!!!

 

 

Then it was time to take a nap, but it's sure hard to get comfortable on a plane!

So, I'll stand in Daddy's lap and wave at everyone behind me!

She met a sweet friend from Canada and tried to snuggle with her, too. 

Miss P tried so hard to sleep on the plane, but just couldn't get comfortable.  Within about two minutes of us pulling out of the parking lot at the airport, she was asleep in her car seat and slept almost the entire way to B's parents house!!!  Please pray for her to adapt well to a schedule while here.  She has a great schedule at home that she does so well with...however, she is very thrown off with the time difference.

B's Nana is having a heart catheterization tomorrow.  So, please send up some extra special prayers for her protection and the doctor's wisdom! 

A picture is worth...

There really aren't adequate words for what we experienced last night!

Yesterday was B's birthday!  His favorite spot is Pappasito's.  So, Mom took us all for dinner.

B loves their salsa.  He goes through so many bowls it's amazing!  They never quite believe him that he'll go through it as quickly as he does.  Well, we called ahead  last night and they believed us!  His spot was ready, tons of bowls of salsa waiting to be devoured by him.  However, what we weren't expecting was....

Yes, you are seeing our 21 month old eat just about as much salsa as her Daddy!  She could have cared less about the chips, she just wanted the salsa.  She was grabbing huge scoops and eating them off the chip.  Then, we pulled out her fork so that she could eat her meat.  She could have cared less about the meat.  She scooped up the salsa with her fork!!!!

Did I mention that the bites that I took had my mouth burning?  It was spicy salsa.  My Mom coughed/choked with a few of her bites it was so spicy.  However, our little angel LOVED IT!!!

Not being able to get out and drive, I was worried that the gifts I found for B weren't exactly what he would have wanted for his b-day!  If you had seen the smile on his face and the pride beaming from this father, you would have seen that this was the greatest gift ever for him...his very own salsa eating buddy!!!!!

Really?  chicken?  That's it?

Here!  Dip it in this and it's worth it!!!

How about some more?

She never really touched her milk at dinner.  Ummmm...this is spicy, the milk should help.  Would you like your milk, Miss P?

"No thank you!  Salsa will be fine!!!"

I think she almost finished two bowls of salsa!!!

Finally, his b-day dessert arrived.  He's coaching her on how to help him blow out the candle.  Can you see the pride and astonishment in his eyes, though?  He's still overwhelmed with joy that his little girl loves salsa as much as he does!!!!

Happy Birthday, B!  We love you!!!

FOUR MORE YEARS

Well, it is almost election day...Praise God!  But this time it is different.  Four years ago today Princess went into SURGERY.  While America had an important decision at hand we here at the Foxhole had an additional weighty decision on hand.  I still remember the day very well.  We had just slept off a fun night with friends and family as we did a hair cutting party and Princess and I both shaved our heads in preparation for this day while at Memorial Hermann Hospital. 

We weren't expecting her surgery to be until a little later but very early we were awoken as the staff came to take Meredith back to surgery... Here is the post from this time...

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Wednesday, November 5, 2008

Surgery

Well it was quite a wake-up today. About 5:30 this morning, we heard from the surgeon's resident that surgery would be at 9:30. However, we we whisked away at 6:30 and headed in to the surgical unit. Please pray over these next four to five hours as M is undergoing surgery. We will continue to post and update as events unfold. Also, I will be posting pictures later this morning of our "Buzzfest" to benefit Children With Hair Loss.

PS- Two friends that were with us last night at the Buzzfest are about to deliver their first kiddo. Please lift A and L up in your prayers. She was not due till Nov 16. Ironically, it was M's nurse Mary that told them to get to the hospital immediately to see about delivering. So...they have been at the hospital since last night. I know M will be very excited to hear of the days events when she is back with us later today.

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So today, is eerily similar.  This time we are facing an important decision for America and tomorrow we will learn what direction America has chosen to follow again.  Additionally, while we are not waking with Physicians coming into our room, we do have luggage packed and we are on our way to Pennsylvania to determine if we can move forward with surgery again, but this time going further trying to eliminate Princess' seizures. 

So please be prayerful for our trip that our time in the hospital will be fruitful.  That the new team of doctors and physicians we will be meeting will be able to bring this 6.5 year journey to a close.  As some of you have been following, just in the last two months, Princess has experienced a dramatic increase in her seizures is upwardly approaching an average of 5 to 6 seizures per day.  Additionally, we are beginning to see even more some of the seizures devastating effects.  

Be looking for more in the coming days!

Au Pair

Webster defines au pair as:
 
a usually young foreign person who cares for children and does domestic work for a family in return for room and board and the opportunity to learn the family's language 

We define an au pair as:

A BLESSING!!!!

As most of you know, our community stepped up after Miss P was born and took two shifts each day to help care for her.  It has always been risky for me to be left alone with her due to the seizures and her crying was always a huge seizure trigger.  Well, many of you prayed and the Lord answered your prayer that her crying does not seem to be too much of a trigger anymore.  Many sounds are triggers, but the Lord has allowed me to hold my sweet angel when she needs her Mommy.  Thank you, Jesus!

So, we had so many amazing people come and take shifts the first six plus months of P's life and love on our sweet girl and help me care for her.  Then, after the Foxhole Relief weekend, we were able to bring in a few nanny/babysitters that were wonderful!!!  We loved them so much.  However, if they worked 9-5, B couldn't go to work until they arrived and had to be home before they left (since, again, we couldn't risk me being alone with her).  This allowed B more of an opportunity to work, but he wasn't able to do much of what was needed for the business.

So, in walks my cousin.  She tells me that we have to consider an au pair.  They had one for their family and loved her.  However, I just made the assumption that there was no way that we could afford such an option.  We were struggling to afford a nanny/babysitter and so how could we afford something that had a french name?  Doesn't that make it more expensive?  Surely we can't afford that...As well, they live with you.  So, now I have to buy more food, utilities increase, etc.  It just didn't seem feasible.  Then, she pushed some more for us to consider it.

Once we did the math, we found, among many things, that we would actually pay less to have an au pair than we would for a nanny and she could work longer hours.  We started to truly see the benefits.  My cousin continued to tell me amazing stories that kept softening our hearts to the idea.

Then, came our trip to the Mayo Clinic in February.  It was a rough trip, but while we were there, we had the opportunity to have a Skype interview with a possible candidate from Brazil.  To keep the story short, we loved her and now that she's been living with us, in America, for seven months, we still love her!  She is an amazing blessing!!!  Miss P is crazy about her and so are we!!!

So, without further ado, meet Ms. C...a gift FROM the Lord THROUGH each of you that participated in the Foxhole Relief Project. 

Ms. C with J & her kiddos.  J is one of the two that created the Foxhole Relief Project.

Again, Ms. C is such a blessing and we love having her as a member of our family!!!

 

Critter Update

For those who have been following and faithfully praying, you will recall Critter was diagnosed back in June with Juvenile Arthritis.  We have been blessed to work with Scottish Rite hospital for her diagnosis and treatments.  Today was our third visit and all signs point to continued improvement and progress in her toes!  The inflammation and swelling have gone down and her toes still seem to be doing exactly what the doc wants them to do.  Great news!  We will still continue her medicine, thus putting off chemo.  So we'll keep with our current follow-up schedule to be evaluated very 3-4 months.

PS-please lift Princess up in prayer.  Her seizures have continued to increase over the last two months and we have no answers.  We are still making plans to be at Jefferson Hospital soon for evaluation, but would obviously would like to see a decrease in her seizures.

Thank you!

We've received a few e-mails requesting that we share some quick updates.

First, thank you all for your prayers!!

Second, thank you each so much for your sweet birthday wishes!  Wow!  My inbox is going crazy with blessings from each of you!  What a precious gift!

Finally, the update:

We came home from the hospital that Thursday evening (two weeks ago).  I had two decent days.  Then, they started up again....That Sunday was incredibly rough.  We had home health out to do some IVs and I have no real recollection of the nurse being here.  That was the beginning of four rough days where I averaged close to three seizures per day.  So, needless to say I was exhausted!!!  Then, I had a bit of a break for a day or so, only having one each day.

Then, came Saturday.  I had two seizures within 20 minutes of each other and another one a few hours later.  So, I had to take the "rescue med" before 6am.  I didn't have any more seizures Saturday or Sunday, but most of the days were "erased" and I was asleep.

Then, came Monday.  The day that so many of you remembered, my birthday!!!!  Thank you!!  I only had one on Monday and one on Tuesday.  So, the break was great.  Thank you, Lord!

Wednesday hit with a bang, literally.  I already had too many by 7am and had to take a rescue med which only lasted about five hours.  A dear friend from college was coming over to "play" that day.  She has two little ones.  This was our first ever playdate.  I had no idea what to do.  No seizures while the kids were here!  Thank you, Lord!  However, soon after they left, chaos.  I had four seizures in less than eight hours.  So, B had me take another rescue med.

Here we are, today, Thursday.  I've had four seizures today.  So, more rescue meds and pleas for prayers for some days with rest included!  Our pup also had a seizure tonight.  Thus, it's been a bit crazy around here.  Thank you all for your prayers!!

Here are some cute pics of P with the Halloween present she received from her grandmother tonight:

She absolutely loved it and walked all over the place with it...it's a little pumpkin bag with a pumpkin flashlight that she can shine all over the walls!!! ; )

Nate

We received this update on Monday in regard to Nate:

Nate and I just landed in Los Angeles and are on our way to the hospital for several days full of scans and tests. Nate is feeling great and very spunky. Please pray for great scan results. His MRIs are this afternoon. Last scans six weeks ago were horrible and the doctors thought he didn't have much time left, but he looks and feels great. Our God is awesome and we know HE is watching over us and HIS mercies have been great toward Nate. Thanks for all the prayers.

  

We received this update this evening in regard to Nate: 

Well, the scans show the brain to be much improved with the tumors greatly reduced and the spine clear now of tumor. Praise God and thank you for all the prayers. The doctors are very pleased with the results and are developing plans right now on the next steps. This is truly amazing and we are very grateful. With God nothing is impossible. Heading back home with a plan and renewed spirit in the morning. Thanks again everyone.

 

Post Hospital Update and What's Next

Howdy to all!  First, many and many thanks goes out to you for your constant prayers and emails.  We had an extremely difficult week (see previous post) and are relieved to be back at home.  Princess was discharged from the hospital on Thursday evening as the seizures had for the moment calmed.  There are, and were not, any answers for what happened over the weekend or at the start of the week other than maybe a possible reaction to a new medication that was added to our regimen.  That said, we were able to determine that particular medication is not an option for Princess. 

Other than that it is back home and rely SOLELY on GOD for His strength that is becoming so evident in Princess' life each day.  Truly, she is the most incredible woman in the world to get up each day and take care of our family.  Her strength to endure and yet even just be part of life is amazing.  While along this 6.5 year journey so far, God has continually blessed Princess with an amazing attitude and life.  We truly don't know what today has...will Princess have no seizures?  will she only have one? or could today be a day like we just experienced and will she have 15 seizures in a day?  We don't know...As frustrating as the unpredicatablity can be we are still learning how to balance.

Balance...

While our balancing act can be somewhat challenging, both Princess and myself will first and foremost tell you that it is not anything we can do.  But first things first, it is because of our foundation in Christ Jesus!  We do, and have to start each and everyday with Him.  He is the source of our strength.  He is the Master Architect of our days.  Princess and I do constantly tell ourselves that it is not a surprise to God about what we are enduring.  And in addition, it is truly awe inspiring to witness Princess daily and see God's provision in her life. 

But there's more.  God is unfolding His plan to do great and mighty things in Princess' life and in yours and mine. While our trip to the hospital this week may not have been eye opening in providing  a cure, it more or less confirmed the direction we are heading.  This week our Neuro mapped out a plan of action that would lead us down a path to Philadelphia to start the initial steps for brain surgery.  While surgery is not a desirable option, it appears that it is the only option that man can provide.  What does this mean? 

Next month we will be headed to Philadelphia to one of the leading Epilepsy Surgery centers in the nation.  We will be somewhat starting from scratch with new sets of eyes, different EEG recording devices, different MRI scanners, and much more.  We will have the advantage of bringing in all previously collected data and comparing it to what will be collected in this trip.  Depending upon the results obtained, the physicians and specialist will make a recommendation to move forward or not with brain surgery.  Should they want to go further with surgery, we'll most likely return in January of 2013 to begin again Princess' surgery we did in November of 2008 with the hopes of placing electrodes deeper in the brain and more of them covering the surface to potentially locate the seizures.  Thereafter, assuming the seizures are located, our team would then "map" Princess' brain and determine how to remove the tissue where the seizure(s) is/are located.  If January were to happen, we will have much more praying to do and will really have to weigh our options due to the potential cognitive, and who knows what else, impact this will certainly have. 

Bottom line, God is and will be the hero.  Princess has for years now said that God is the hero in this story.  The stage is set again that as doctor's have said there really is nothing more that can be done.  Our own Neuro reminded us again that we have to stop the seizures.  The impact they are having is detrimental and there is grave concern for what Princess will be like should these continue for 5 or 10 more years. 

So pray.  Prayer comes first.  God is Holy. God is God and He is the only answer for all of us.  In Him, eternal life is found.  He provides the strength for today and our time here on earth.  We turn to Him and ask for healing and peace for Princess.  We ask for wisdom and peace in the midst of this storm.  We ask for guidance as we venture on this journey.  We pray for the doctors in the path ahead.  AND MOST IMPORTANTLY- that Christ would be communicated in ALL that we do.  May God be glorified!

Thanks for sticking with us! 

The day that would not end...

After Princess' trip to the hospital through the ER, we were finally on the floor of the hospital around midnight.  Followed by another hour of getting settled in with the staff and getting Princess hooked up to her EEG.  Soon it was 2 AM and we were just now able to think about falling asleep.  Then around 3 AM we were moved to the EMU (Epilepsy Monitoring Unit) where we had to do more adjustments and introductions and it was now close to 4 AM and time for us to get some much needed rest. 

Thereafter, Princess, by far, had one of her worst days in the last six years and actually had 15 seizures before going to bed last night.  So, it was a rough day altogether.  We are not really sure of what happeed yesterday with seizures but we were very thankful that the day was eventually over. 

 As for Princess, the talk most of yesterday was to figure out what was going on that got us into the hospital and what was going on that she was having more seizures.  It was later in the afternoon that most of our conversation, now with Princess' Nuero, centered on adding another medication and getting ourselves to Philadelphia to Jefferson Hospital's Epilepsy Center.  The thought with Jefferson is to eventually look toward another surgery....our most likely answer to getting Princess better, next to a miraculous healing from the Lord. 

So as it is already late, we wanted to provide just a brief update and will be sure to post more very soon!

ER, PRAYERS- JEHOVAH RAPHA

THE LORD THAT HEALS YOU...

Lord, I pray for healing today!  Please take away this awful illness from Princess.  Lord, it is my heart, mind and soul's desire to trust you and yet at times the journey is so difficult.  You know all our fears, all our concerns, our frustrations, and our desires...Please bring healing into Princess' life right now.  She is tired.  She is weak.  She is frustrated.  Lord, I don't ask as in a request hoping you can heal her....What I know is that you are ABLE.  YOU ARE ABLE!  Father, You alone have sustained Princess for the last 6.5 years.  You have protected her when docs have no answers.  Lord, in continued and steadfast faithfulness we continue to seek You for your guidance, provision, and healing.  Please Lord...let today be the day that you end this chapter.  Father, I trust You.  You have told me....You have told us...that you know our plans, our days... YOU, who has ordered the stars to their places and knows us so personally....our lives are held in the cup of your hands.  So today, as long as it is called today, we turn to You and GLORIFY your HOLY name.  Please Lord, bring rest and restoration to Princess today.  Take away this illness.  Thank you for providing Your strength.  Please bring some calm and rest today. 

Selah.

Amen.

Update:  For a second weekend, Princess has not felt well.  We have recently made some changes with our physician in hopes that we can stop these seizures.  And what all of the changes have turned into is something very wrong for Princess.  After another very difficult weekend we were finally able to reach our Neuro and Princess has been ADMITTED back into the hospital through the Pysician Referral ER.  While not desired, the situation at hand warranted and necisitated the visit.  Princess' mom graciously was able to be on call to start the process and I myself will be reunited with Princess shortly.  At this present time we don't understand nor really know exactly what Princess is experiencing.  All we can say is that something is not right...We hope that we can have answers soon.  These recent events are all trailing our most recent doctor visit where our Nuero is presently trying to get Princess to Jefferson Hospital in Philadelphia to be monitored eventually for surgery in January of 2013.  So we are prayerful today about all that has been laid before us and even what new medications we should consider, if we were to venture down that road, too. 

Please pray for Princess.

Snuggles

Hopefully, there will be time to catch up on the overdue updates.  However, I had to share that I just received precious snuggles from my beautiful little girl!  Wow!  She usually gives a quick hug to Mommy and is off to Daddy's arms.  Tonight was different, she wrapped her sweet arms around my neck, laid her head down, and even played with my pony tail.  What a difference!!  Wow!!  What a precious gift!  This Mommy loved it and is still swallowing the lumps in her throat!!!!