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!!!!

Update on My Man

Hey Prayer Warriors!

We went to the doc yesterday for B & Me and received some updates.

In regard to B, he is a Rockstar!!!   When we left his test the doc that performed it said that he is "brilliant!"   Our neuro yesterday said the same thing!  They said he is truly above average and performed off the charts.  That's my man!

The doc performing the test & the neuro also stated that they did see "deficits" that made him normal!  Thus, he didn't score as high on certain areas of the test.  Those areas are indicative of the damage that they are seeing on the MRI.  However, they said that his "low" scores were actually normal!  Meaning that he scored in those areas what most "smart" people would score.  That was considered a deficit since he's brilliant!!!

So, the end result is that our neuro wants to run a few labs, looking for other things, and she wants to do an EEG (the test that I have done all the time with the electrodes attached to your head).  Otherwise, we have a follow-up appt next week with the doc that performed the test.  At that appt. she will be able to give us the entire report and then some "exercises."

Exercises-as we understand it, he will meet with this doc frequently to do mental exercises to help strengthen what has started to atrophy.  So, call it brain rehab maybe...Imagine if you broke your finger and had to do exercises to get it back in shape.  Then, imagine if you had to have your finger amputated and learn to use the other four to do what five were doing.  As I understand it, this is as if he lost a finger.  So, we're having to let the other four learn how to do the work of five. 

We'll tell you more once we understand it.  However, those are the basics as we understand them!

What Makes Today Special?

Many look back on this day eleven years ago and remember so many innocent lives lost.
In our family, there is a secondary reminder, one of life!  Yes, on this day, September 11th, 2006 (the five year anniversary of lives lost), a special man that I love, went in to surgery.  While he was still waking up from his anesthetic, his doctor told me that he had cancer.  To most of us, that is a bad word and it means death because we've lost someone to the yucky disease.  A few minutes later, my amazing husband woke up from his anesthetic and wanted to know about his surgery.  The doctor had not made it back in to the room and so I had to tell my hubby that he had cancer.  September 11th no longer meant death or fear.  The first words out of B's mouth were, "Cool, that means I get to be a cancer survivor!"  Yes, you can blame it on the anesthetic, but I blame it on a man that is completely sold out to his Savior, Jesus Christ.  He trusted and still trusts fully in the Lord and HIS healing power over B's life.

You can read more about that day here: Survivor
You can read more about the journey here: Psalm112-survivor.blogspot.com.

In the meantime, we both head to the doctor on Thursday.  The neurologist has told us to expect a long appointment.  We will be getting a preliminary update on B's test from last week.  That doc told us (what his wife already knew) that he is brilliant, but she can also see in the test scores the areas of weakness where the scans pointed to damage to the brain.  So, in the next few weeks, we will begin to learn what type of "rehab" will be required to strengthen those areas. 

We will also learn the next step that they want to take with me.  Last we were told, the next choice was chemo, but there was one other option that she was trying to look into...So, please say some extra prayers for wisdom for all docs involved and for us.  Please pray for P's protection amidst all of this chaos.  Please pray for B's job that he is able to continue working and serving others while still taking care of himself and the rest of us!  We love him SO MUCH and PRAISE THE LORD that HE chose to make September 11th a celebration of life for our family!!!

We love you, B & Daddy!!!

Psalm 112

¹ Praise the Lord.^[b]

Blessed are those who fear the Lord,
    who find great delight in his commands.

⁷ They will have no fear of bad news;
    their hearts are steadfast, trusting in the Lord.
⁸ Their hearts are secure, they will have no fear;
    in the end they will look in triumph on their foes.

Thanks and Update

Many, many thanks to all of you for praying for M yesterday.  These last few days have truly been difficult as it seems the seizures just won't stop.  We did have home health come in and do IV medication yesterday morning as we will sometimes see good results administering M's anti-seizure medicine this way.  While not a sure thing in stopping the seizures, we can usually get some reprieve.

M was able to get some rest throughout the day and some much needed reprieve for most of the day after getting the IV.  PRAISE THE LORD! While the day did progress better than it started, the seizures unfortunately returned by bedtime with M having a few around going to bed and during the night.

Pleas be in continued prayer and, in addition, pray for our Neuro, Dr. S.  We have an appointment later this week to go over some additional thoughts and possible future treatment.  We too are very much prayerful about our upcoming appointment.

Thoughts:  Since we were not able to get out to church yesterday due to the chaos that ensued, we had our own little church last night.  Our time had us in a familiar passage, James 1:2-8.

Consider it all joy when you face trials of of many kinds....

A very good point that I don't think we really considered is that JOY does not necessarily mean happiness.  Unfortunately, circumstances that are not always in our favor do happen.  BUT God can make good from our trials.  Our focus should not be on the trial or tribulations, but rather we are to look through the circumstance.

Your thoughts?  For more insight we would encourage you to also listen in to the message we listened to.  Look through the trial and trust : Message by Pastor Brian Fisher, Grace Bible Church, College Station, TX 09/02/2012

Emergency Prayers

Prayer Warriors!  Please continue to pray for M.  It is just the early morning here today, but already M is at 4 seizures since midnight and 5 in just the last 12 hours.  Please pray for her healing and rest as she is incredibly tired and we all are just floored by how bad the seizures have become this month alone.  M is averaging nearly 4 seizures per day right now.

Since this morning has been crazy, we will be doing medicine with home health and trying to make sense of things and hopefully get in contact with her doc.

Thank you for your continued prayers!

Quick Update/Prayer

We've held off on posting about this for a while. 

Many of you know what an amazing and "soft" heart B has...

We found out a few weeks ago that his brain seems to be softening, too.  He was starting to behave a bit differently and I just told myself it was my seizures and I was seeing something wrong.  Well, Mom finally asked one night at dinner what was different about him.

I brought it up to him that night.  He had noticed some minor things.  He then became a patient with me at my next neuro appt.  She ordered an MRI.  The MRI showed a really big word that means softening/atrophy of the brain usually following an NFL concussion.  We're still waiting on the NFL disability payout!!!  Right?

Anyway, doc has ordered a test that looks at overall brain performance.  It is an all day test.  So, we are down in the hospital world today.  As far as we know, we won't have any real results until next week.  We just wanted to get those prayers headed to the Lord for B's healing!

B with his girl!!

FIRST Day of Preschool

It's so hard to imagine that our little angel is growing up so quickly.  Today was her first day of preschool!

Sitting down to pose as soon as I saw the camera!!!

Showing off the dress that Gamma bought for the first day of school!

Snuggling with Daddy before school!

Daddy made Mommy pose even though she didn't have on any make-up!!!

Getting out of the car to go meet my friends at school!

Good Morning to the squirrel!

Already starting to play!

 Pray that it's a great day!  She seemed to enjoy it when she arrived!!!  We hope she loves the entire day!

Important Business with Winnie the Pooh

We would love ideas from all of you experienced parents on the next car seat for our girl!!

P is about to need to get out of the infant car seat...what is the best seat that could be forward or backward facing?  She's still a skinny little thing and so she's supposed to be backward facing for now.  However, she's getting a bit too tall for the infant carrier.

This is serious business, folks!  I have to sit in this seat while I take care of important phone calls with Pooh!!!

 

Just kidding!!!!  Will you come sit with me, too?  We could have fun playing with my Pooh phone!

Mommy and Daddy sure would love help on picking the right car seat, though!!!!  We had great advice on the infant carrier and have loved it.  Now we need to find something new for our growing girl!!!

Y'all were incredible with the advice on the diapers at bedtime.  We switched to night time diapers and we've only had one morning that required new sheets!!  Thank you!!!

105!!!

Wow!  Our day was crazy.  Started with our trip to Scottish Rite with Miss P.  They first needed lab work.  Last time was easy and she didn't even flinch.  This time she screamed like crazy and it took two sticks to finally get what they needed. 

She seemed to realize where she was and she did not want to sit still in a room.  So, she and I walked the halls together and let Daddy come tell us when we needed to be in the room.  We were in the hallway, and saw a gentleman that looked so familiar, but he didn't say anything and so I thought I must be wrong.  Then, I heard him say his wife's name and our city to the gentleman he was speaking to and got excited that we had a friend there.  Turns out he is the "man in charge" over the entire area that P is being treated!  He used to teach our Sunday School.  So fun!

Since it is a teaching hospital, you might not get the same doc each time and they send in the resident before the doc.  We asked the nurse how a different doc would know if there was substantial improvement or not since no pics were taken at the previous visit.  She said they have #s they apply to it and that would help.  We still beg for our original doc, though.  The resident came in and he was very kind, but many of the concerns that we had just stated to the nurse were starting to be proven true.  He asked us what it looked like before and if there was any improvement!  Grrrr!  He then left by telling us that they might stick with the meds she was on, but it was time to add the chemotherapy.  He said he would go get the doc on call and let her know.

P and Mommy walked the halls for a little bit while Mommy cried and prayed with Miss P.  Daddy called us back in that the doc was ready to see us.  Praise the Lord, the doc that saw P today is the one that saw her last time and is considered to be the #1 doc in the nation for this condition!!!  Thank you, Lord!!  So, she did a full exam and said that she felt there was enough improvement to stick with the current course of treatment/no chemo (Mommy teared up and let out a, "Praise Jesus." at this point)!!

She said that P couldn't have picked a better spot to have Juvenile Arthritis if she was going to have it.  Just about any other joint probably would require the chemo, but she felt the toes were okay to watch a little longer.  We also found out that her's does not seem to be rheumatoid, but more Psoriatic.  So, we go back for our next check in October!!  The doc was also incredibly sweet this time and asked how my health was progressing!

So, after she left we started to notice that P felt a little warm.  They brought the prescription for P's meds and we were about to leave.  Then, the doc came in the room and said that P's urinalysis came back pretty indicative of a UTI and that we should contact her pediatrician.  We got in the car and tried to feed P her lunch.  She wanted nothing to do with it.  She basically refused to eat it which isn't like her.

We have a sweet friend that we can't wait to tell you about, but things have been so crazy.  Anyway, we needed to take our friend to a doc appt, as well.  So, we went to her appt.  P slept on the way and then came in the doc office and walked around for a while though she still felt a bit warm!

When we got back in the car, she wanted to finish all of her lunch.  She also ate her afternoon snack and drink.  So, we thought we were on the road to being better.  She slept on the way home.  We put her down for a nap as soon as we arrived. 

She woke up screaming and was super hot.  We made it to the doc's office in no time to find that sweet little Miss P had a fever of 105!!  The doc's office immediately sprung into action with Motrin, cooling rags, flu & strep tests, etc.  I pray that it never has to happen again, but despite having two seizures today, the Lord gave me the ability to be her Mommy!  I got to hold my precious girl as she screamed and cried (no seizures).  She also allowed me to sing to her and just hold her and comfort her!  Wow!!  What a gift to get to be her Mommy!  Again, I pray this never ever happens, but I am so grateful that the Lord allowed me to be her Mommy today!  Thank you, Jesus! 

They kept trying to get a urine collection so that they could give her an antibiotic shot.  However, she just would not share.  So, once her fever had dropped to about 102 they allowed us to head home.  Had she not responded to the meds, they were about to send us to Children's, but she did respond and so we are at home with our girl tonight.

We have to wake her up multiple times throughout the night, take temps (we don't have a good thermometer for a kiddo and so this should be fun), give her meds, etc.  B has a full day at work tomorrow since he had to take all of today off for all of our appts.  He has to cancel a few morning appts. to get us to the doc in the morning, but then has to get to his appointments.  So, please pray that she is feeling well in the morning.

There are many of you that received requests to pray for her through B's work, etc.  Thank you all for selflessly stopping to lift our girl up to our Savior.  May she continue to heal and may HE be glorified!!  Praise Jesus that our girl is feeling better!!!

Quick Prayers

I had lofty intentions of doing a few posts to update all that has gone on in the last few days...hasn't happened.

So, I want to quickly hit the most important and we'll see if I can get to the others soon.

Playing Follow the Leader!!

Tomorrow (Monday) P will have her follow-up appointment at Scottish Rite.  This is the appointment where they will determine the next step in her treatment.  As we understand it, if they believe the current meds are working well enough, no change.  If they don't feel like they are making enough of a difference, then they will start chemo.  That is my understanding.  Obviously, we will learn more in the morning!

Thank you for all of your faithful prayers!!!!

Do you see what IC?

We are spending the weekend/early week at B's Annual Meeting for work!  There is absolutely no hint, whatsoever ; ) as to what hotel we were supposed to be staying in while here.

I know you're not supposed to share when you are out of town, but we have some incredibly vicious pups that would kiss someone to death if they tried to break in...plus, we've had so many weird things in our neighborhood we have almost constant police supervision.  So, if someone isn't scared of puppy kisses; hopefully, our police department is tough enough!!!

Anyway, thought we'd share about our trip so far!  It's been crazy!  As we were packing our bags and trying to get to the airport, we received a call from my benefits administrator stating that the clarification we received in writing a few weeks ago was "wrong" and so it doesn't stand!  What??  It basically means that I would lose all health coverage (smart choice when someone is on disability-great chance of them improving if they aren't able to get medical coverage) and depending on who you speak with, B & P might lose all coverage, as well!  This situation has already taken over 24 hours of time on the phone and many seizures following as being on the phone is a trigger for my seizures.  Anyway, I was bawling as we were trying to leave.

Then, on the way to the airport, the sky let loose and started hailing on our car.  We finally got checked in for our flight and they told us it would be a while before they could find seats for us because they had a previous flight that was cancelled and they were having to address all of those passengers first.

Our plane was over an hour late to the gate (we were supposed to leave at 8:10p and arrive around 10:15p) which meant we didn't land until close to midnight.  I may be a bit of a hotel snob, but these rooms are priced at a premium because every Northwestern Mutual Rep and their families descend upon this city and take over.  Thus, they can charge way too much.  So, it was my opinion that if we were having to pay this much, we should have a super nice room.  We got to our room and found this.

Yucky, anyone?

You think they cleaned before we arrived?

We were supposed to have a fridge in the room for all of my food.  They knew is was for a medical condition.  While a fridge was provided, we could barely fit two chicken breasts in because it was so small.  They told us they couldn't help us until the next morning because Engineering wasn't there. 

If it tells you anything, I wasn't comfortable walking around the room without my house shoes on my feet.  However, when they were kind enough to move us to the next room, I didn't want to put my slippers back in my bag in case anything else got floor cooties!! ; )  It was truly so gross!

This was the soap tray.  Your hand would feel super clean after this, right?

Anyway, they were kind and moved us to another room.  Now, it's long after midnight and we are past exhausted.  They agreed to switch us to another room.  Here is the fun we found in the next room!

Hard to see, but food on the chair.

Huge, grody (is that a word) stains all over the carpet.

The best part might have been that this well respected hotel sells an "intimacy kit" at the "mini bar."  Really?  B asked where the spot was to put the quarter in the bed. 

It is super hard to see in these pics, but the shower curtain was covered in mold!  Yucky!!!

Can you see a little bit of it here?

 Anyway, we called other hotels in town to no avail.  So, B had to take most of my food down to the employee fridge for the night. Now, it's 2:45am.  We didn't unpack at all in hopes that we would find something else as soon as we woke up the next morning.

It was a tad difficult to fall asleep because the down mattress pad (which most people would love) was a little odd.  Literally, every time we rolled over, we had something sharp stick our skin.  Each time, we could pull a feather out of the bed.

Oh yeah and there was a police investigation going on down the hall from one of the rooms due to "unruly behavior" from one of the guests.  Lovely!!

Anyway, this was just a super weird experience as this is a very well respected hotel.  We found a room at the hotel that we usually choose and were seeing how fast we could get there.  We called down to the front desk to check out and the manager said that he didn't believe that we could have had two dirty rooms and that he would charge us the full amount for the full stay.  We called the amazing woman at B's office that organizes all of the hotel rooms and she was about to "attack!"  In the meantime, the event manager for the not so clean hotel called us, apologized, and had a taxi sent to take us to our new hotel!  Super impressive!  Once we arrived at this hotel, it was completely different experience.  It has just seemed clean from moment #1.  We also have a rather large fridge!!  Then, we received a fruit tray and some fun different waters from the previous hotel.  Again, impressive!!

So, that was the first twelve hours of our trip!!!

Anyone else out there a hotel snob?
Anyone else had a similar experience?

All the Mommies Out There

This could be a TMI kind of post.  However, I'm hoping that the sweet mommies that read this can help.

Little Miss P always gets a bottle before bed, always has...we see it as keeping her "full" so that she can sleep through the night (typically 11-12 hours)!!  Yes, we love it!

However, our little cutie pie, who clearly has us wrapped around her fingers (see below), has been waking with diapers so full that the sheets would need changing every day if not for sheet savers!  Her little diaper is about to explode and her PJs are sopping wet. 

So, what do we do?  Is that normal?  Do we start giving her less?  If we give it any earlier it would be at dinner...

As you can see, the girl loves to swing!!!

Resist the devil...

and he will flea from you!  James 4:7

Misspelled word intentional!

Yes, we had fleas in our house on Monday.  Of the 30+ years that I have had animals, I don't recall this ever happening.  Anyway, we spent the morning trying to figure out how to safely get rid of fleas.  That meant lots of laundry.  A cleaning crew working so hard since I'm not allowed to clean, vacuum, etc.  That afternoon we had the house treated for fleas...Wow!  Unbelievable.  We are all covered in bites and praying for the day that they are all gone!!!

We'll take any secrets that y'all want to share!!!

A picture...

...is worth a thousand words!

As you can see, it has been a long day!
Hopefully, the picture will do the talking and I'll use less than a thousand words (not likely, though ; ) )

This is Miss P about three minutes after B put her in her car seat.  He was still loading the car and making lots of noise and she was out...We are all exhausted.  B carried everything, pushed the stroller, held her during blood work, was an amazing daddy & husband, etc.  I've already had seven seizures for the day.  P had blood drawn and has been in doc appointments since early this morning and she was diagnosed with Juvenile Arthritis.

This is considered an autoimmune condition and can have some genetic background to it.  They said it's rare for a parent or any family member to have any type of autoimmune arthritis.  However, it is very common to find many other autoimmune related conditions in the family.  We have a lot...My thyroid and seizures are both blamed on autoimmune conditions; B's cancer was an autoimmune type of cancer; we have other family members that have been diagnosed with alopecia, shingles, ulcerative colitis, etc.  They said the ulcerative colitis is the most likely genetic chain.  Though she should never experience any of those symptoms.

The blessing is that we were able to see the doc that our pedi & the specialist at Children's both wanted us to see.  Both of them prepped us that she is the best of the best!  She has even been named as such (i.e., top 10 docs in America).  It is a teaching hospital and so she was quick to educate as she spoke.  First words to her resident, nurse, etc., upon entering the room, "what do you see?  That's right blonde hair, blue eyes,  This is a predisposing factor for an autoimmune condition.  Isn't this what most of our patients look like?"  She later explained that blonde hair and blue eyes doesn't mean you will have a condition as such.  However, when these kids go to the Scottish Rite summer camp, somewhere upwards of 70+% are blonde hair, blue eyed kiddos!

The doctor then told us that most kiddos with this diagnosis go on to be the cutest and smartest kids in their class.  Obviously, as her parents, we loved that statement!

We had a sonogram done of her foot.  They were looking to see if any of the inflammation was caused by fluid around the tendons (this would make the diagnosis even more specific).  The first time they did it, they couldn't see anything.  So, they called in the head of radiology.  He was fun and a Hodgkin's survivor like B!!!  They didn't find any fluid and so they believe it is just a standard case of Juvenile Arthritis.

P was so tough, as in strong, all day.  We had to wake her up early to get to the appointment on time.  She ate breakfast in the car.  She got a late lunch due to all of the testing, but still worked very hard to finish her lunch.  While PT was in the room telling us what we need to be doing with her (lots of swimming, squatting, standing, playing with sand with her toes), she was finally able to finish her meal.  Then, Momma had her 3rd seizure while at the clinic.  After that, P wanted to come sit in my lap.  She had just managed to sit down and started to snuggle as I was writing down my seizure when all of a sudden...I don't know the polite way to write this....so, here goes....she projectile vomited her entire lunch all over just about everything in the room!  This has never happened before, so we were scrambling.

Right now, they have her on a very expensive NSAID that they want to keep her on for at least five more weeks.  Then we will go back and see how well it has worked and repeat blood tests.  In the meantime, we need to look for an absolutely wonderful pediatric ophthalmologist that is excellent/skilled at doing slit lamp studies.  She will have to have this study done every three months for quite a few more years.  One of the silent attacks of this diagnosis is that it effects their eyes (uveitis).  By the time we notice it, she would be close to blind.  So, this study apparently watches for it and catches it very early so that she can start getting treatment and avoid blindness.

Our prayer is that she is much better when we return at the end of next month because the next course of action or treatment would be methotrexate (chemo).  They said it is a very low dose.  Still, no one wants to know they are giving their little girl chemo.  The irony in this situation is that we are at the same point with my doctors.  They want to try a few more things and then they want to start me on chemo (Rituximab).

Here are a few pics of her toes so that you can see why we were concerned.

From a little too faraway, but you can still see the 4th & 2nd toe are larger than their buddies!

Much better view!!

They said the ANA test that came back last week as positive and very elevated is pretty non-specific.  Most kids are going to have theirs elevated as well, but your #s can be high and not have this condition.  We ended with her having bloodwork!!!  She was such a trooper.  They took 5-6 vials.  We were so proud of the great job that she did!!!  She cried a little bit once the needle was in her arm, but then she was smiling again and she gave the phlebotomist a big hug goodbye!!!

In the end, the doc said this is a very serious condition that needs to be monitored very closely.  However, on a scale of serious conditions she could be dealing with (1-10), it's a two.

We are so proud of our girl and ask that you would continue to pray for God to provide wisdom to the docs and burden their hearts over any changes that need to be made or directions we might need to take or not take.

Thank you all so much for your prayers.!!!

The Greatest Father EVER!!

Well, the greatest father ever is our Heavenly Father! 

Next in line would be P's Daddy, my husband, and gift from my Heavenly Father!  Wow!!!  B is the most amazing man!!  P is one blessed little lady to have such a wonderful Dad!  Growing up without an earthly Daddy means that I get to experience B's love for P in a completely different light.  I don't really have any expectations for him.  However, he has exceeded what any of them might have been if I tried to create expectations!!

I love the idea of celebrating B!!  He isn't that into gifts and celebration, but that doesn't mean we don't celebrate him!!  Last night at dinner, P leaned over to her Daddy and started giving him the most amazing hug!!  I've never seen her hug with such intensity!  It brought me to tears.  This precious little girl has an amazing God fearing Daddy that she can hug any time she wants...WOW!!!

This was the very end of the hug.  I couldn't get my camera out fast enough!  She sure loves her Daddy, though.  She kept pulling him back over to her to hug him one more time.  It was precious!!

One quick family shot as we were leaving. 
Praise the Lord for B, a man that fears the Lord, loves the Lord, and loves his family!
We love you so much!!!!

double

We heard from the pediatrician that P's ANA-looking for an autoimmune condition-is positive/elevated.  So, we are hoping to get in with the rheumatologist early this next week.  In the meantime, their recommendation is Naproxen (Aleve).  A. we can't find any that doesn't have all kinds of nasty ingredients (i.e., food colors and known carcinogens) B. we can't seem to find any made for kiddos.

We met with my doc at the beginning of the week to try to figure out why my seizures keep increasing.  She changed a bunch of things and they've continued to increase.  I had eight on Wednesday and 7 yesterday and 7 today.  The seizures that I had today all happened before noon.  So, it was rough.  Then, I took the rescue med which puts me to sleep and I woke up at 6p to my sweet hubby having brought home Freebird's for all of us.  Yummy!!

P's toes

Update on P:

• Since our appointment with Children's couldn't be until next week, our Pediatrician had us come in yesterday to do some lab work.  P made us all very proud!!  I guess she's watched her Mommy get enough needles in her arm and realized it wasn't a big deal.  We took all kinds of things to distract her and keep her entertained.  However, she never even winced!  They had to stick her twice to get all the blood they needed and she was such a trooper!!!!!  Yeah for P!!!! 
• Yesterday we picked up all of the films from each X-ray that she's had since this started.  We looked at the first one and couldn't find a fracture on any of the images.  So, we read the report and it said there is inflammation and so it's "possible" there is a fracture.  The next two scans showed no fractures.  Thus, the imaging center probably gave our doctor's office an incorrect report and there was not a fracture to begin with...
• We got a call first thing this morning that Children's had an available appointment this afternoon.  So, B cancelled all of his appointments and we headed off to Children's.
• After getting checked in, doing family history, etc., we were sent to another waiting room.  After sitting there for an hour and forty five minutes, we asked why the long wait?  They said it's first come first served, no matter what time your appointment is scheduled!!   Huh?  P had fun, though.  She was walking up to everyone and waving.  She tried to hold a little boy's hand...good thing her Daddy didn't see that one.
• Back to the waiting, we begged and pleaded and a precious lady at the front desk worked hard to get us back to see the doc sooner.
• The doc had a bracelet on that reminded me of the Connor's Prayer Warrior bracelets that we all wore for many years.  So, I asked him about it.  He said it's for his son who has Neuroblastoma (the same type of Cancer that Connor fought).  We asked if he knew about Team Connor (As many of you know, Connor's Dad is B's managing partner!) and it turns out that he is actually friends with the family.  His son's name is Alex.  Let's all stop right now and pray for Alex's healing and encouragement for his parents as they walk this tough road!!!!!
• Once he looked at P's toes, he agreed there is a problem and there never was a fracture.  
• While in the appointment, the pediatrician's office called with the lab work.  It was all fine for the most part except the few things that said, something in her body must be swollen (tests measuring for inflammation)!!  We are still waiting on a few other tests.
• The doc was amazing!  We were very impressed.  He was willing to say, "I don't know, but I will speak with a Rheumatologist tomorrow and my partners."  He also took some pictures of P's toes to share with each of his colleagues.  He agreed that this is a very odd presentation.
• When we were giving our family history, we realized what a strong family history we have for autoimmune conditions (my seizures & thyroid, B's cancer, B's dad, & B's brother to name a few).  So, the chances are much greater that there is an autoimmune component.
• Our pediatrician called tonight to follow up from the lab results.  B asked her how worried/concerned we needed to be or could we rest easy knowing all would be okay.  She is always incredibly calming.  However, tonight she calmly told us that we do need to be concerned.  So, we're praying that we can get in to see this rheumatologist quickly and that they can find answers for Miss P quickly! 

Thank you all for being such amazing prayer warriors for our family (and for Alex)!!

A quick smile for the road!

Somewhat of an Update

A quick update on our girl:

Almost three months ago, we noticed that she had a toe that was swollen.  So, we took her to the doc's office and they did an x-ray to tell us her 4th toe is broken.  Four weeks later, just as swollen.  The great thing is that she didn't seem to be showing any signs of pain. So, the ortho says he can x-ray it.  Everything looks great and healed (under the skin).  On the outside she is just as red & swollen as can be...so, he tells us that we need to go sit in the waiting room at Children's ER all night.  We took her back to our pediatrician that took another look and said stick with getting an appt. because if you go to the ER they will do an x-ray and tell you to come back next week.  However, we are noticing other toes on that same foot starting to swell.  So, we called back today to see if we could get her appt moved up...

As of right now, it's not an option, but they are waiting for cancellations!
*************************************************

Next, I'll start by apologizing for this not making any sense.  I've had to take some medicine this morning that pretty much takes me out of the game.  However, I'm trying to keep fighting through.

First part of the update relates to Mayo.  We spoke with the docs in charge of my case and they are all a bit up in the air.  The neurologist says that the surgical conference determined that I needed immunotherapy because surgery is too risky.  The neuroimmunologist said that we've tried most everything, but there is one more choice.  My doc at home thinks that there is one more surgical option.  So, here's the scoop:

• There is inflammation in my amygdala which leads them to believe that it is an autoimmune encephalitis causing this...this is the first time this has ever been mentioned, but they say they found it in 2010 & 2012.
• The surgery they would want to do would be in the temporal lobe, but they are afraid that I would lose too much cognitive function.
• On the other hand, the docs agree that my seizures do not present as temporal lobe seizures, but more like insular seizures.  Thus, they could be starting in the insula and progressing to the temporal lobe.  So, if we remove part of my temporal lobe, it won't do any good if the problem is in the insula.
• The neuroimmunoligist is recommending chemotherapy called Rituximab.  Thus, completely kill the immune system (all the B cells?) and see how it wants to "restart."  He says that it's highly likely that it won't work, but he doesn't feel that there is another choice that has any greater projected outcome.
• We spoke with my neurologist here and she sees that there are a few more avenues.  She agrees with the chemo, but wants to consider trying a few more meds.  She wants to take me off the med I've been on since day one and switch it to an old school drug.  However, we have to find out if we can get our hands on it since it is so old school and swimming in all of the artificial colors that are triggers for my seizures.  
• Doc is trying to reach out to some colleagues at Jefferson to see if they would consider my case for the surgery.  She said she would even travel with us and go see all her old buddies!!
• We are trying to get our hands on the videos from the original brain surgery.  They were supposed to be at the Mayo surgical conference, but it doesn't appear that they made it.  These could also be sent to Jefferson to see how willing they are to consider surgery. 

After having 40+ seizures in the past week (one of the worst weeks I've had since being diagnosed), the Lord blessed me with some reprieve and I didn't have any seizures on Sunday and I just had one going to bed on Monday and Tuesday.  However, today I had already had 6 seizures by 11am.  Thus, I've had to take rescue meds.which typically remove me from the world.  They are so tough...

So, hopefully, we'll be back soon, but it's harder to see what I'm writing and to know if I'm really awake..

God is Good...

ALL THE TIME!!!

All the time...GOD IS GOOD!!

We haven't heard back from the Mayo Clinic yet.  However, I signed in to my patient account this morning to find a dictation from yesterday's meeting.  The gist of it all is that even though they have new technology that didn't exist during the first brain surgery, they still feel as if there is too much proof that my seizures are bilateral (originating on both sides of my brain).  They said this keeps me from being a surgical candidate.

Their recommendation was immunotherapy and to speak with my immunologist.  However, while at Mayo in February my immunologist placed me on what he referred to as the "nuclear bomb" of immunotherapy.  If it worked, it told them that something would work and they would find the correct type of treatment.  If it didn't wipe it all out, nothing else would...A few days after we returned I had so many seizures and what appeared to be an allergic reaction (that we now think is a new type of seizure that I'm having).  Thus, my immunologist said surgery was my only option.  This is why it was sent to surgical conference. So, there must have been a bit of a lack of communication somewhere. 

This leaves us feeling like our hands are truly tied, though.  What do we do if both docs say there is not an option?  In the last week, I've already had 37 seizures.  This is a huge increase.  It's as if the seizures are becoming more frequent and more intense.  B and I discussed a million different options today.  We just don't understand.  What do we do?  Do we trust that the Lord has a plan in this that we just can't see and how do we live that out on a daily basis?  Are we still supposed to try new treatments?  Do we stop searching and just go back to the lowest dose of meds (that gave me the same control that I have now on a super high dose of meds) and try to learn how to live life with seizures?  Do we go down some other crazy path for a treatment? 

Then, I looked at my cell phone a few minutes ago.  I get a message each day with a Bible Verse for the Day.  When I opened it, my jaw dropped.  This is B's grandparent's verse, B's parents' verse, and they had it framed for us for our wedding and it hangs above our mantle for every person to see that walks in our door:

Trust in the Lord with all your heart,
and do not lean on your own understanding.
In all your ways acknowledge Him,
and he will make straight your paths.
Proverbs 3:5-6

So, we trust in HIM. 
Even though we don't understand.
We give HIM glory because HE is the only true God and the only true Healer!
We are reaching out to hold HIS hand and follow HIS path for my health and healing!

Thank you all for praying!