Prayer Warriors

I'm sorry that I've not updated much on me...little Miss P is so much cuter...

I haven't felt that the Lord has said I could proclaim complete healing yet.  As much as I want to, I haven't felt HIM say, "tell the world!"

²⁸ When he had gone indoors, the blind men came to him, and he asked them, “Do you believe that I am able to do this?”

   “Yes, Lord,” they replied.

 ²⁹ Then he touched their eyes and said, “According to your faith let it be done to you”; ³⁰ and their sight was restored. Jesus warned them sternly, “See that no one knows about this.” ³¹ But they went out and spread the news about him all over that region. 

Matthew 9:28-31

I have continued to have auras.  By definition, they are still seizures.  However, the Mayo Clinic said I could count them separately since I can keep my eyes open and I'm not as tired when they are over...thus, they measure auras only as a sign of improvement.

Last month, I only had 33 for the entire month (and NO "seizures").  This month, I'm already at 32 and we're only half way through...I had eight yesterday and I've already had two this morning.  Just a few auras and I still have basic energy.  A day like yesterday and I'm completely spent.

We went to see my neurologist last week and she's just as stumped as to why I stopped having seizures.  Again, we praise the LORD for that healing!!!!

However, it also leaves her not knowing how to get rid of these auras.  Obviously, prayer and complete reliance on the Father is the first step.

“Again I say to you, if two of you agree on earth about anything they ask, it will be done for them by my Father in heaven. For where two or three are gathered in my name, there am I among them.” (ESV)

Matthew 18:19-20

We are also trying to decide if I start the IVIG again.  The last time I did it, the seizures went crazy.  However, we found that it was rendering the diet useless due to the proteins in the treatment.  So, now that I am on low dose meds (lowest dose I've ever been on without the Ketogenic Diet), in theory, there is something to help with control...The doc also said that the seizures could come back if we start the treatment again.

So, we are stumped.  We are trying to hear the Lord and walk in the direction that HE leads, not what makes the most sense to us. 

The sweet lady helping us with Miss P came later yesterday which gave me a chance to hang with Miss P by myself.  I loved that special Mommy/Daughter time.  However, I had one sitting at the desk with her in my arms and I couldn't set her down in enough time.  So, I had to just lean over to make sure she didn't fall.  She cried the whole time, which made it last longer.  It is so frustrating...I just want to be healed so that I can be her Mommy with no fears attached.

Sorry for the long post...Please just continue joining us in prayer for HIS ultimate healing, HIS will to be done, and peace and direction through the process!!

You are each such precious gifts to us!  Thank you for your sacrifice of time to beseech HIM on our behalf!

First Trip to Aggieland

P got to make her first trip to Aggieland a few weeks ago!!

B had some clients to meet in College Station.  So, we made it a family trip.  We stayed with our precious friend Trey & Marci in their adorable home!  It's like a perfect little doll house!  I wish I had taken pictures, but I completely forgot...they were so wonderful to allow us to stay with them.

P & Daddy posing with Bevo!

First Trip to Freebird's!!

You expect me to eat this whole thing?!

This is where my Daddy proposed to my Mommy!!

Mommy and Daddy in the spot where Daddy proposed!  I'm glad she said, "Yes!"

Piper's business

You've got to each take the time to go to Piper's facebook page and see how talented she is...

Piper made all of Miss P's bedding and is making curtains for her so that we can take down the trash bags that we're currently using as curtains!  I have posted a few pics below that I took, but if you go to her facebook page, there are so many more fun and precious things to look at that she's made. 

She is going to start a little business and would make such precious gifts for you and your family!!

Go to Facebook:  Piper Chambers Cole: Photos:
then,
*Burp Rags & Bibs
*Miscellaneous
*Baby Bedding
*Blankets & Quilts

She is so talented and creative!!  If you want to order from her, tell her that I sent you and send an e-mail to:  mustardseeddreams@hotmail.com

P's Bedding that Piper made for her.

Have to quickly brag on my hubby...

 This was an old entertainment center that B repainted and then used to create a changing station for Miss P.  Didn't he do a wonderful job?  It matches her bedding so well.  He's so talented and amazing!  I sure love that man!!!

Brandon

This is Brandon.  He is an amazing young man that attends our church.

This is his story: Brandon's Story

What happened...
Brandon has loved on Miss P since very early on...

Snuggling with Brandon

So sweet!!!

Here are some more recent pics.  I think these were taken last month.

Mr. Brandon, what is this in your neck? Maybe I'll be a doctor someday!!

Have y'all met my friend, Brandon?

First Trip

When little Miss P was just a few weeks old, she got to take her first trip.  B has some clients in Texarkana and it was going to be an overnight trip.  So that we weren't home by ourselves, we went with Daddy to work!!!

This is the luggage cart with all of our stuff.  Prior to P, we didn't need a luggage cart, once suitcase did the trick.

Do you really need this much stuff for a kiddo?

Do you really need this much stuff for a kiddo?

As many of you know, Rotary holds a very special place in my heart.  It started with Camp RYLA, progressed to college scholarships, and even my Dad!  Yep, the director of Camp RYLA is the man that walked me down to the aisle to my hubby!!!

So, while in Texarkana, we went to their Rotary Club Meeting!

P's first Rotary Meeting!!!

Hangin'

These are old pictures, but I'm that far behind...I'm going to try to catch up on postings....

Hangin' with Aunt L & Uncle B

THE END

Not of this blog, not of this story, but of this chapter...

We have said since early on in this story that we wanted God to be the hero of this story.  It is our prayer that that has been the case.  This is the link to the post we did in October of 2008 talking about God being the hero of this story!  Scroll to the bottom, past all of the pics to get to that part of the post.

I've wondered through all of this how in the world HE could perform a miracle of healing.  I definitely wanted it, but just didn't understand how HE would do it.  I guess that's the point, huh?

Trust in the Lord with all your heart;

Lean not on your own understanding.

In all your ways acknowledge HIM,

and He will direct your paths.

Proverbs 3:5-6

So, my last seizure was last Tuesday at 7:15pm!!!!!!  That means that as I type this, I have gone more than ten days without a seizure!!  Thank you, LORD, for your miraculous healing!!

For, lo, the winter is past,

the rain is over and gone;

the flowers appear on the earth;

the time of the singing of birds is come. 

Song of Solomon 2:11-12

The short version of the story is that I was having way too many seizures on Tuesday despite having taken two rescue meds.

*The doc said to hurry and get to the hospital.

*She started me on IV meds (which have always calmed the seizures, but I've still had what I refer to as auras-according to the docs, these are still seizures).  Every time that I have switched from IV meds to oral meds, the seizures come back full speed ahead (more than 3 a day is my average on meds).  On the diet alone (no meds), I was having around 1.5/day.  She felt there were a few more risky treatments we could look at in the future, but I had to be off the diet as they would interact.

*Last seizure was Tuesday at 7:15pm.

*My wonderful and super impressive doc said that if this didn't work, she didn't have anything else she could do...we were out of options.

*The next day we asked our doc if we could all pray together about what the next decision should be...this is when she prescribed sushi (a.k.a. getting off the Ketogenic Diet).

*I couldn't go home on IV meds and so our amazing compounding pharmacist out here worked for hours with the pharmacy at Baylor to create a version of the med that he thought I might absorb...

*I was on this for a few days (the lowest dose I've ever been on of this med) with no seizures.  I even forgot a dose my first night at home.

So ALL PRAISE TO GOD who is our Great Physician!!  He truly has performed a miracle and is continuing to answer many prayers.  We have done nothing, yet HE has healed me!!  We are claiming it and rejoicing in HIS healing!!!

This past weekend I was able to get to be a Mommy to our sweet little girl.  It was amazing!!!  Having my precious baby girl snuggle up in my arms...WOW!!!  When she has cried, I've been able to comfort her...

It has truly been an unbelievable week being able to bake different items (and eat them), make meals for B, NOT weigh my food, not worry about staying away from certain foods...I had Blue Bell Ice Cream and chocolate chip cookies for the first time in almost three years!!!!  So while there was some apprehension at first, maybe even a slight wondering if God had truly healed me, each day we keep putting our trust in God that He is in ultimate control and TODAY I have been healed!  ALL Praise to HIM!!!

We are so grateful for the many faithful prayer warriors that have helped us to fight this battle that has lasted five plus years!  Your prayers, emails, letters, and calls have meant so much to us and have encouraged us so much along the way.  We continue to praise the Lord for His sustaining strength and a perseverance that could only come from Him.

May HE always get the glory and be the hero of your story, too!!

Quick Update

The doc just left my room and I should be going home tonight.  My last seizure was at 7:15p the night that we arrived.  We usually have good seizure control on IV meds, but once I switch to the pills, not so much.  Thus, I would have to stay in the hospital so that I had access to the IV meds.
Well, the doc, our wonderful compounding pharmacist in Rockwall, and the pharmacy here at Baylor have made up a liquid version of the med in hopes that I will absorb it better than the pills and have seizure control.

ALL PRAISE TO JESUS, I have taken two doses and still no seizures.  I've almost gone three days without a seizure!!  Thank you, LORD!!!!  So, we are hopeful that I'm healed and that I'll be heading home today!

For whatever reason, we find that if I go more than a day without a seizure, I tend to get a pretty bad migraine.  It arrived yesterday.  So, prayers that it goes away quickly as I want to be able to spend time with little Miss P tonight without it being so painful!

Thank you all for being such faithful prayer warriors!  I know your cries to the Lord are such a sweet sound to HIS ears.  Lord willing, we won't be begging HIM for healing anymore, but praising HIM for HIS healing!!!

One Fish, Two Fish, Red Fish, Blue Fish....SUSHI!!!!

So, many are coming for an update!  Before that, we want to provide you with some pics of Critter with her newest thing...REAL FOOD!!!  She has really become a natural at eating some solids and she really does look forward to the time of day that she gets her solids.  We first tried carrots, and then had some sweet potatoes, and this week she has had green peas...YUM!  Anyway, as you see, she really enjoys her food!

Pierson's first bite of food...carrots!!

YEA!!!!  

Update:  So, as you might know we had to put M in the hospital yesterday as she was not doing well with her seizures.  The doc decided to intervene with medication and, Praise the Lord, she has not had a seizure all day today.  Around five this evening the doc came by to follow-up and give us a plan of action.  

Ultimately, her goal while we are at the hospital is to stop the "status" seizures (M was considered to be in status on Tuesday-recurrent seizures in a 30 minutes window)...beyond that she is not too sure of what to do next.  So, together, we came up with a plan.  Long range, M will be off the diet.  Not because it hasn't worked, but because the potential treatment that could cure has somehow prevented the diet from working for the last two months.  So, it appears that we now need meds to control the seizures.  However, this has been a major dilemma in that all of the meds tried in the past, with the exception of IV meds, did not work.  So, we are working on finding a solution to that, as well.  

Bottom line, M has not had any seizures since starting the IV meds last night.  The docs original plan was to bring us back in to the hospital for a minimum of three days to begin a slow titration off the diet and an increase in meds.  Then, three weeks after M was completely off the diet and on meds alone, start the IVIG treatment again....

Obviously, we want what is best, but we were able to spend more time with the doc and go through some logical reasoning as to why we thought we might be able to safely come off the diet at this hospitalization; re-introduce meds; and not have to worry about another possible week stay at the Baylor Ritz Carlton Downtown Medical Center-  Ritz added for emphasis....

After making sure her malpractice insurance was up to date, she agreed and actually prescribed M something that we hadn't experienced or even considered in over two years....

SUSHI!!!!

That's right!!!  M got to have her very own sushi party!!!!  Wow...now before we get too excited, the doc was very concerned about the potential for seizures to come back, but she felt that if we were coming off the diet, why not go all out (this is the one thing M has said she's missed the most since starting the diet)....okay, maybe that was some of our encouraging.  Anyway, at the time of this post, all is well so far, and M is very full and satisfied with something she has greatly missed over these last two plus years!

Please continue to lift M up in your prayers as we transition to meds and pray that she would remain seizure-free whether on IV or oral meds and that we can get back on the IVIG treatment that will eventually cure M for good and most important of all....

M can continue to be a great mom to Critter, but even more, the mommy she desires to be to Critter!!!  Praise God for a good day!  To God be ALL the Glory!!!

Stay tuned for updates!

Hospital, Seizures, Veterinary Hospital

Well, we're back in the hospital!  As most of you know M's seizures have continued to increase and for the most part things have seemed out of control. Specifically, we have had a rough week where just in the last five days M has had 40 seizures...yes, an average of about 8 per day.  This morning was especially rough.  It began after midnight around 1 AM as I awoke to find M on the floor next to the bed having a seizure.  Getting her back in bed she had another around 2:30 AM.  She then received some much needed rest and awoke at 7:15 and had a third seizure, followed by another just ten minutes later. 

The treating Neuro has wanted us to take a "rescue med" to break the cycle in times like this, so we did.  We then had a wait and see attitude before we decided to call our Neuro.  After two hours of reprieve, M had her fifth seizure for today and we took the "rescue med" again.  This time a call to the doc was made and it was determined that M should be admitted into the Epilepsy Monitoring Unit for evaluation and intervention as the Neuro would begin M on and IV dose of medicine.  While certainly not anyone's desire to have medical intervention, certainly it is necessary. 

The plan of action is to monitor M through Friday at the hospital and give her IV meds to see what impact that has on her seizures.  As of right now we are holding at seven seizures for the day and should receive meds any minute.  Critter is continuing to receive great care and attention and it is very comforting to know that she is in good hands while we're back in the hospital. 

We'll continue to post and send updates as we can.  Please pray for M's physical healing, wisdom for the doc as to the direction we need to go, obedience on our part in what the Lord is telling us to do (that we would truly hear Him and His voice).

As if today wasn't enough-  Some of you know that one of our precious pups has seizures.  We are not quite sure what happened but on Monday morning around 4AM our oldest pup was panting heavily and was just not right...assuming he might have had a seizure we gave him an extra dose of his meds, he later settled but was just not right the entire day.  In addition he did not touch a drop of his food.  Yesterday evening we gave him some food and unfortunately had to give him the Heimlich maneuver promptly as he vomited up the food.  As this morning progressed, he was still the same and while we are in the hospital he is in his own hospital at the vet and will be staying overnight.  As of right now, a blockage somewhere in the digestive trac is suspect.  We'll keep you posted on him too!

Thanks for your prayers! 

Rollin'

Though she has done it for everyone else when I'm not looking for the last week plus...

I got to see Miss P roll over for the first time today!!!!!!  What an absolute joy!!!

Waiting, not fainting

Dear God, Your Word says "those who wait on the Lord shall renew their strength; they shall mount up with wings like eagles, they shall run and not be weary, they shall walk and not faint" (Isaiah 40:31). Please renew my strength; help me to run this race of life and live for you without becoming weary; help me to stand for what's right, to walk forward and not faint. Thank You for Your promises. Thank You for lifting me up and sustaining me. In Jesus' name. Amen. 

This was the prayer in one of my recent devotionals.  Boy is it ever the cry of my heart.  It has been a rough week.  I had eight seizures on Tuesday.  I finally gave in and took a "rescue" med to stop the seizures.  I didn't have any on Wednesday.  Praise the LORD!!!  

Then, they picked back up again...so, I took another rescue med (if you know me, you know it was hard to give in and take the meds since we've seen 2+ years of meds not working and I don't like to take meds unless I have to...) and it's been awful ever since.  The seizures that I have had in the last few days have been the yucky ones.  These are the ones that I come out of and don't know what is going on, but about 30 minutes after it's over, I realize I had a seizure.  This scares me as far as time alone with Miss P.  As well, we are still looking for someone full time to come and help me care for her.

Finally, I have already had four this morning and it's only 8am.  Will you please beckon the Father that these will go away?  Will you also pray for our wisdom in some changes we need to make to the diet?  Moreso, no more seizures, Lord, please!!!!!!

My First Swim

We have been at B's family reunion this weekend.  It has been so much fun watching Miss P interact with family!  She got to meet her Great Grandparents this weekend!!!  WOW, what a special time!  I'll post more on that later.

She also got to meet her new cousin, A.  He was born about five weeks after her.  I've been trying to teach her how to pet our dogs.  Well, she reached out and loved on A, just as I've taught her to do with them!!  It was very cute!

Anyway, on to the point of this post...

She went swimming for the first time today!  It was so fun to watch!!  Daddy and P went for a swim with Cousin L and Baby A.  It was so much fun to watch the two little ones experiencing their first swim!!

Talking to Baby A & cousin L.

Miss P's favorite part of the swim was learning to jump off the side of the pool.  Oh my goodness, she loved it!  In this quick video, you can see how much fun she had jumping off the side.

Sorry we are so far behind on updates.  Things have been crazy.

My doc didn't want me to stay in the hospital last week since she believes they don't get my food correct (thus, causing seizures) and she was afraid they might give me something med-wise that would be a seizure trigger.  So, we got home very early the next morning from the ER after a bag of saline and a "rescue med."  The praise is that I only had one seizure on Friday and NONE on Saturday!  Praise the LORD!!!  It was amazing to have a day with no seizures or auras.  That hasn't happened since before we started the IVIG treatment.

Saturday was wonderful because we got to take some campers to RYLA (Rotary Youth Leadership Award).  This is a camp that I went to in high school.  I later went back through college on staff at the camp.  The director of this camp is the man that walked me down the aisle to marry my Prince!!  P did very well on the trip.  She was even flirting with the young men that we took to the camp.

When we got back to town, we stopped at Target.  I noticed a bump on my leg, about the size of a half dollar, that appeared out of no where.  By the time I made it back to the car, it was red.  By the time we made it home, it looked like a big bruise.  The concern is that it might be a blood clot. 

Due to the previous issues and the fact that my doc is headed out of town for a week & B's family reunion is coming up soon (and we're driving the full 14 hours), my doc wants to skip this week's IVIG treatment.  She says that it should be fine skipping a treatment because most people undergoing IVIG are doing it bi-weekly, rather than weekly.

So, this week has been very exhausting as you can probably imagine.  I had eight seizures on Wednesday and Thursday ran a close second.  Please pray for guidance on what direction we need to take for treatment.  Pray that the doctors would be able to come up with a solution and that we would see results...NO SEIZURES. 

B finishing this post:

From M's earlier posts, you know that she so desperately wants to feel like P’s mommy and having eight seizures in a day does not allow for her to take care of P.  A great praise is that from your generous support we have been able to have the same person come over each day this last week and provide consistency in care and playtime for P.  This has really been a welcomed blessing and M has been able to at least be guaranteed some good morning time with P.  Additionally, she has been able to get some brief moments with P during the day, but yet our help has truly done an amazing job to work with P and keep her on a consistent schedule.  She won't be able to continue to help for the rest of the Summer, so we are still looking for a full time nanny.

Today was treatment #4.  The docs wanted to cancel all IVIG treatments and switch to high dose steroids since my seizures have been increasing.  The side effects to the steroids are quite frightening.  So, after much discussion with the doc, we decided against the steroids.

However, as many of you know, the therapy they have me on for my seizures requires that I weigh all of my food to the tenth of a gram and the protein, fat, & carbs in each meal have to be to a very specific ratio.  We discovered that the IVIG infusion that they are giving me has quite a bit of protein (probably more than I'm able to consume in two days) & might even have some carbs.  Thus, we spoke with the dietitian at Mayo who changed some things for today's treatment so that we might have more success...

I had eight seizures yesterday. Today has been much the same, but also we are currently now at the hospital.  M has experienced a rapid heart rate for most of the week, but today it became incredibly rapid, hovering around 140 bpm.  When B got home after work we were able to discuss how M felt and determined it was best to reach out to the Neuro.  The Neuro didn't feel comfortable with how M was feeling so she decided to admit us into the ER in Dallas.  Current plan is to do an EKG to check the heart and as well give M a bag of fluids.  M did take an anti-seizure med this evening after her 6th seizure and she has been a little better since, seizure wise, though still feeling like she is on the verge of having a seizure. 

Please pray that M will be okay and that we might be able to at least get an answer as to why she is feeling the way she is.  Additionally, we are still praying for M's seizures to go away.  Please pray that we will see results, TODAY!