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!

Quick prayer request

Just a quick prayer request:

Today, May 31st, M's case is supposed to go to conference at the Mayo Clinic.  As we understand right now this is mostly a surgical conference where a team of Neurologists and Neurosurgeons will be evaluating M's case and determining whether or not her case is treatable/curable via surgery.  This option had originally been off the table after our first surgery in November of 2008 since her seizures occur on both sides of her brain.  However, Mayo has determined that although they do occur on both sides, medication seems to control her right side but not the left side.  Through their thought process they are hypothesizing and trying to best determine if surgery can be performed on the left side of the brain for the seizures that occur there.  That said, it could be promising....yet.... M's dominant half of her brain is in fact the left side.  So there is great concern both on our part and Mayo's as to the benefit versus the risk associated with such a procedure.  There is concern that if they go in surgically they can potentially seriously damage M and even cause her to lose certain functions. 

So please join us as we pray that Mayo would be able to come up with a solution, that we would have wisdom, and no matter the decisions made today, we would have an overwhelming sense of peace from the Lord that would guide us. 

Since the start of this year, M's seizures have really gotten out of control.  Just in the last three days she has already had 20 plus seizures and her standard medication and rescue medication do not seem to be working. 

In case you are interested, here is a link for a possible surgical procedure that Mayo is currently conducting and there is a great chance that M would have this procedure before anything else.

Thank you again, and we'll be sure to update with Mayo's finding as soon as we know something.   

Nate Update

From Nate's Mommy:

8:47pm May 24

We came home on Tuesday, just 7 days after Nate's surgery. The surgeon cleared him to come home and the chemo he is going to be taking over the next 7 weeks is oral, so we are able to be home and have doctor visits in Ft. Worth over the next few weeks. Nate is feeling great and has actually gone to school the last two days. I have no words to describe the joy and emotion I feel as I watch him fight back again. He will be able to attend the last day of Kindergarten next week and celebrate this special day with his classmates. We cherish every milestone that Nate is allowed to reach, because we know nothing is guarenteed for any of us. He participated in field day today with lots of fun games. We are looking forward to being home together for summer break and will return to California in July to meet with his doctors and have scans. Thank you for loving Nate and praying for him with us!!!!

One Small Step for Miss P and Failure is Not An Option

Sunday was a special day for our girl!  No, she didn't take her first steps.  She's been running since November!!!

Miss P actually had the opportunity to meet a couple people that have made an impact on our nation's history and "mankind."  Anyone have a guess?  I'm trying to drop some clues.

Congressman Hall was having an event at his home and he had some special guests there to speak.  We didn't have plans to attend, but realized what an amazing opportunity this would be for Miss P.  If I knew how to scrapbook, this would make for a great page in her scrapbook and a fantastic history lesson for Daddy to teach her in years to come.  So, we decided to stop by for a quick hello.  We were quickly whisked back into a room with Congressman Hall and three gentleman!

The first man that stood up to say, "Howdy," was Gene Kranz of Apollo 13 fame!!!  P had fun flirting with him and learning all about his granddaughter.  Cgsmn Hall was sweet to ask each of them to be in prayer for my healing!
The second man was Neil Armstrong, the first man to step on the moon.  "That's one small step for man, but one giant leap for mankind!"
We didn't get a chance to meet the third gentleman as they whisked us back out as quickly as we entered.

As the men were leaving our precious friend and prayer warrior, H, made sure that Miss P could get a picture worth remembering!!!

Mr. Armstrong about to get in the limo with Cgsmn, Hall.

The "giant leap" in to the limo!

 "Mommy please don't make me go to the moon.  I promise I'll sit still while we read Goodnight Moon."

L to R: Cgsmn. Hall, Miss P, Neil Armstrong, & Gene Kranz

 So, as you can see, Miss P had a pretty special day!  Thank you to everyone that made it possible to create such a special memory for our girl!!!

Little Nate

Many of you recall praying for Little Nate over the last few years that his cancer would be healed.  Below is an update from his Dad.  As well, you can go to Facebook and search for Pray for Little Nate and "subscribe" to the updates.

From Nate's Daddy:

I want to start off by saying thank you for all the continued prayers and support all of you have shown to our family for several years now....we honestly are a very blessed family to have friends like you. Now for an update on where we are. Since the last time we posted an update lots of things have changed and were happening so quickly that we wanted it to make some sense before posting. First of all, we never made it to Duke, they decided Nate's case was too risky and bizarre for the medical center to take on...the doctor would have taken him on but the hospital said no way. When that happened we were brought back out to Los Angeles and have been here for several weeks working with Dr Finlay on what to do. After going literally from there are no more options and this is it to a few days later after Finlay emailed top researchers all over the world and collected some interesting thoughts...we now have a plan again. As has been the case now for several years, the plan is one of a kind never been done before and brings with it many risks but hopefully also a huge reward in eliminating the cancer. It is very complicated and would not make sense to explain it here but because of all the research that I have done through all off this I understand what it is and hopefully what it will do... I have to say, this would be more than huge if it works and it has a very good chance it will otherwise there is no way we would chance it. The other reason for doing this is the reality that the lesions are growing steadily in his head now and time is of the essence and when it comes to Nate there are not much choices left. The first step involves resecting one of the lesions from the brain which will be done first thing Monday morning so we need lots of prayers because brain surgery is always risky especially in areas that it has been done before. They will spend 48 hours examining all of the tissue for evidence of disease before moving into the actual procedure. If there is disease in these growing lessons, which all the doctors think, then we move on to the never been done before stuff. If there is no disease there, well, that is going to turn everything upside down also because scientifically that is impossible to have these lesions growing without cancer in them. In that case, this really is never before occurrences and we will have to figure out what to do next. The greatest thing, which also makes this the hardest thing, is that Nate is getting stronger and stronger every day even with growing lesions in his head and spine which makes no sense at all. This is what keeps us going, but makes it so hard because we don't want to mess him up now, and if it were not for the scans showing everything growing, we would not be doing any of this because he is doing so good. So that is where we are, please pray for the brain surgery Monday and for him not to be harmed and for Dr Krieger the neurosurgeon to be guided by God during the surgery. Please also pray that God will be with Nate all the way and that we as his parents are being led by Him all of the time and that we continue to thank Him for all that He has done. Thank you to all of you.

Seriously....

Well, our home town isn't so "homey" any more.  As you know, both of our cars were broken into a few weeks ago.  Then, while we were at Target today, someone keyed our car.  All the way from the front to the back...Target has video surveillance and they said they are able to release it to the police department.  So, they had us call and file a police report while we were there.  The officer met us at our house since I'm supposed to have another IV infusion today.

The back

moving forward

Front door

All the way to the front!

A good look down the side!!

The crazy thing is that last night we watched one car hit another car at Whole Foods and go inside and never leave a note.  So, we reported it to the police at Whole Foods so that the owner's could file a claim and know who did it.  We asked the management at Target if anyone had reported it...not so much.

So, the officer came over and said that she would go look at the video, but if she didn't know the person that did it, she wouldn't create a report.  Whereas, the officer that handled our cars being broken into said that they might not know the person, but they still file the report.  He said that they might not recognize the person, but they have other guys that might.  Thus, they file the report and hope they can put a name to the face.  Today's officer said she might call me to give me an update, but then made the point that I had not changed my address on my drivers' license since the move!!!  So, I'm apparently the criminal today...keeping our streets safe!!!!

Update....

Two days of rest are "over," seizures are not...

I had eight seizures the first day and three the second day.  I've already had two today.  So, this isn't going according to the doctor's plans.

When we called in to update the doc, she requested that the home health nurse come today and do an infusion of fluids to see if that would help (they believe my overall fluid volume plays a role).  My home health nurse is amazing and always does a great job of getting a line started.  However, she stuck me five times today and still couldn't get a line.  Same thing happened on Monday.  This is weird.

So, we called the doc's office to ask what she wanted us to do...

Instead of drinking 6Liters of water each day, she wants me to increase to 7 liters.  She also wants to start me on a very scary anti-seizure med.  It's very dangerous and one that each doc (including this one) has worked hard to avoid.  However, she feels that we don't have much choice in the matter.

She has ordered more IV fluids for the rest of the week and IV meds.  The kicker is that I'm not able to receive the IV meds if they can't get a line started.  So, the doc said that her next step is to order a PICC line.  She really wants to avoid this, as do we...

Please pray...

A Day of Rest...or TWO

By the seventh day God completed His work which He had done, and He rested on the seventh day from all His work which He had done. Then God blessed the seventh day and sanctified it, because in it He rested from all His work which God had created and made.
Genesis 2:2-3

GOD rested.  Yes, GOD!!!  Since He is God, do you think He really needs to rest?  No, but He did.  Wow! What an example for us.

Yet, I somehow think I can keep on doing all that needs to be done and not rest.  Do I want to rest at times?  Yes!!  Do I make it happen?  Rarely. 

So, my doctor has stepped in with orders to rest...
We've found that each time I'm placed in the hospital, I have fewer seizures.  She believes it is because I am resting.  Whereas, at home, I'm constantly trying to get things accomplished.  Even if it's just sitting up at the computer desk or making food for P or doing a load of laundry.  However, doc says that is too much!  Time to rest.

The reason that she is ordering me to be on at least two days of "official" bed rest is because my seizures have been awful this year.  First, they have increased in number, but they are also a lot worse.  When some of them are over, I don't know what's just happened, I am losing more of my memory, and they are just hitting a lot faster, etc.  I had EIGHT yesterday.  That was with two "rescue" meds.

We've found that prolonged "bed rest" (each time I'm in the hospital they won't really let me out of bed) seems to decrease the number of seizures.  If you can get seizures to stop for a little bit/calm the brain down, you have a better chance of uncovering triggers.  So, here we are on bed rest...I've only had one so far today.  So, Lord willing, no more.

The doc has also ordered an increase in my meds and daily infusions of some of my meds.  Our Rockstar nurse came yesterday to give an infusion and was never able to get a line going...so weird.  She is usually the ONLY one that can get a line going.  So, she'll be back today to try again....

We appreciate all of your prayers and asking how we're doing!!!

Quick Break

We've done a terrible job with updates and I hope to catch up soon.  My hope was that I could post in order of all that has occurred, starting with P's b-day post last week.  However, I'm going to take a quick break from posting in order to share something that happened today.

A few weeks ago, we moved to a different house.  So, we're still getting used to the neighborhood.  We've met some really sweet neighbors.

This morning, B went outside around 9am and all was good.  Then, he left for an appointment around 10:15am.  However, he came back in with a concerned look on his face.  Long story short: both of our cars were broken into...of all the things available to steal, all that was taken were some Starbucks gift cards that I had just purchased as gifts.  Thank you, Lord! 

The police came out to file a report.  I actually grew up with the officer that came to the house (so fun that the guys I grew up with are now protecting our city)!  Anyway, he took a report and was going to start investigating.  In the meantime, we reached out to Kroger (the grocery store where I purchased the cards) and they were able to get the card #s for us.  We called Starbucks and reached a precious young lady that found one of the cards had been used at a store about 20 miles away and was able to get us the time stamp, as well.  Thus, we should be able to get the video surveillance and see who was at our home this morning!

Say prayers of thanks that we were all protected and prayers that the offender will be found.

FIRST Birthday!!

Our family likes to spread out birthday celebrations...so, we're making Miss P's last an extra couple of months.  Her first b-day was the end of January and we had a small family party right before we left for the Mayo Clinic.  Everything has been crazy since we got back from Mayo...so, here is her FIRST BIRTHDAY celebration!!!

On her birthday!!  Has it already been one year?

About to open her first present!!

The fam on Miss P's day!!!

Gamma, P, & Mommy.

Mommy & P

The whole fam (brothers included)!

P loves Miss C!!!

P with Mimi!!

I love Uncle L (the tickle man)!!

My Aunt Lina!!!

About to sing Happy B-day to our girl!!

Her b-day cupcake!

Little miss was very prim & proper.  She took one little bite at a time.

Not really a mess maker...!

Sharing with Mom.  Even though I'm an only child, I love to offer to share.

Finally, one messy bite!!!

Finally

Well, this is a very long, overdue post, but it will be kept short.

Thank you, first, to the many who have continually and faithfully followed up with us through emails and phone calls due to the lack of posting. As many of you know, M's seizures have increased and intensified since being back from Mayo. We are not quite sure what to attribute it to, but it has certainly been very tough. 

Just about a year ago we were very touched and blessed by your commitment to pray and your generosity as part of The Foxhole Relief project.  While the Lord certainly blessed the works of your hands and feet, He has also used your gifts to allow us to move forward in adding a new family member, an Au Pair. Our Au Pair joined our family officially on March 23rd.  She has already made an impact and fits in perfectly as a member of the family.  "C" has been a joy and blessing for all of us!

As our family grew, our house seemed to shrink.  Thus, since our last post, we have also moved in to a new home that better accommodates our growing family and needs.  By the way, P is learning to sign more words and she's started trying to say quite a few words, as well!  She seems to almost always be full of joy and sharing it with others!

Happy Easter to you and your family.  While we continue to pray for a miraculous healing on our end, we enjoyed celebrating the miracle of Christ's resurrection!!  As our Pastor put it, "it was a Good Friday, but an even Greater Sunday."

We hope to post more updates soon!  Thank you for your faithful prayers and encouragement to M!