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! 

Update- Treatment 3

From M:
This is a good explanation of how we all feel...exhausted.

 
It has been a crazy week!

The Lord definitely answered your prayers in regard to P.  I have been able to hold her this week and got to feel like her Mommy for the first time this week. 

On Sunday, I was able to hold her for about twenty minutes at church.  It was so precious and something that I've longed for since the day she was born.  Each day this week, I have had an opportunity to hold her, feed her, & snuggle with her!  Praise Jesus!! 

The first time that Miss P really snuggled with Me.

Starting to discover the world around her.

Praise the Lord, we have started to see a lot more smiles from her this week!!!

We have been overwhelmed each day this week as we receive updates from the bank and our sweet friends that started The Foxhole Relief Project.  First, you are all such amazing prayer warriors!  Thank you for calling out to the Lord on our behalf...Second, you have all been so sacrificial with your financial blessings, as well.  You exceeded their goal and have blessed us beyond words.  Thank you!!

This is D.  She has been our precious contact at Lakeside National Bank that has been taking care of everything...

Miss P was getting bored laying on her play mat.  So, she got an Exersaucer!  We put her in it for the first time this morning!

I think she likes it!!

Taking in all of the sights and sounds.

                                                                                                                                                        

From B:

Thursday was our third of twelve treatments at home.  It was also the first treatment after the Foxhole Relief Project.  Again, a very heartfelt and humble THANK YOU!  We continue to be overwhelmed with your generosity in prayer and financial support.  

We began Thursday with another rough start-a couple seizures, difficulty getting M’s IV line started, and then multiple seizures during the treatment and during the rest of the day.  It has been very difficult to understand and justify what we are going through in hopes of getting to the end of this journey.  So, with even more prayer together we have discussed whether or not to continue this treatment.  We did have an opportunity to finally visit with our specialist from Mayo on Friday.  It is his recommendation that we stop treatment…As we thought, M shouldn't have more seizures after starting treatment.  They have said she might not respond immediately and have fewer seizures, but she definitely shouldn't have more. 

He proposed that we stop the current treatment, and start high dose IV steroids.  This could become problematic as there are some very serious side effects that he warned us of, even more than the current treatment.  We were able to visit with our local neurologist on Friday.  She shared the same disappointment with the lack of a positive response to treatment.  She also brought up a great idea that might point to the reasoning behind an increase in seizures.  As many of you know, M has been following the Ketogenic Diet for 2.5 years to treat her epilepsy.  To the diet’s credit, M has had the greatest seizure control with the Diet alone and no meds (better control on the diet & no meds compared to the diet & meds).

The purpose of the diet is for the body to use ketones for the necessary energy our brains need to function in the absence of Carbohydrates or Proteins.  So, the diet itself is a very carefully calculated ratio of carbs, protein, and fats, eaten at specific times throughout the day.  It is tailored for each individual (down to the tenth of a gram).  Furthermore, we have seen that many medications can interfere with the diet's success.  For example, many patients that are on the diet will titrate off of their anti-seizure medications because you can actually overdose on the medication, causing more seizures.  So, we have seen over these last few years, by experience, that meds and the diet can provide for an interesting medical situation.   

After visiting with our local neuro on Friday, she brought up that the current treatment contains proteins.  This could mean that M’s diet is now out of proportion or that the ratio is no longer accurate and she isn't burning ketones.  Thus, we would need to recalculate M’s meals on treatment days to account for the protein in the treatment. 

We are not sure if this is in fact the correct answer or solution, but it seems to make some sense and seems to be worth considering, especially given the other option that has been proposed. 

So we are asking for your prayers for guidance & wisdom at this time:

1)  Do we continue with the present course in hopes that we will see improvement? 

2)  Is there in fact a correlation with the protein in the current IV therapy and the diet and our answer lies in adjusting the diet for the treatment? 

3)  Do we try the new proposed IV therapy? 

4)  Do we stop treatment?

M is averaging 3+ seizures each day (she had 6+ today) and it is wearing her out.

Thank you in advance for your prayers.  These last few days have been fairly difficult and we just want to see and experience healing. 

Honesty

It's time to be honest...

I'm so frustrated, yet trying to trust.

The truth:  At the beginning of this prayer weekend, I didn't really expect much.  Then, I didn't have a headache after the treatment!!  I still argued with myself that it was only because they ran the infusion slower.  I still had a bunch of seizures, so it couldn't have been answered prayers.  Right?

Then, the seizures backed off...I went from six one day to only two the next, then NONE!  Hmmm...is this just a coincidence or is God really answering prayers?!?!

B and I spent some good time on Sunday talking about faith and what it really means to trust the Lord!

Isaiah 42:10, “So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.” (NIV)

Sunday was a precious day as I got to feel like a Mommy for the first time.  It was so special!  I was able to hold P for about 20 minutes in church and feed her.  So, there was an answer to your prayers!!!

This week has continued to provide me with at least one opportunity each day to be her Mommy!  I've loved it!!!  She is such a little giggle box and smiley girl!!  It brings me so much joy.  More prayers answered!!!

The migraine hit on Monday.  I still had a little bit of it this morning, but it seems to have subsided today!!!  So, Lord willing, there will be no migraine at all following this next treatment.

The seizures have increased again...I had six yesterday!!!  ; (  So, please keep those prayers coming.  I have a treatment tomorrow (Thursday).  Please pray for no more seizures and no more headaches...Your sacrificial hearts amaze me!  Thank you!!

Now faith is confidence in what we hope for and assurance about what we do not see. This is what the ancients were commended for.  By faith we understand that the universe was formed at God’s command, so that what is seen was not made out of what was visible.
By faith Abel brought God a better offering than Cain did. By faith he was commended as righteous, when God spoke well of his offerings. And by faith Abel still speaks, even though he is dead.
By faith Enoch was taken from this life, so that he did not experience death: “He could not be found, because God had taken him away.” For before he was taken, he was commended as one who pleased God.  And without faith it is impossible to please God, because anyone who comes to him must believe that he exists and that he rewards those who earnestly seek him.    Hebrews 11:1-6

Miracles, Blessings, Thank you’s…

Humbled.  Humbled beyond what we could have even anticipated or expected.  We’re not even really sure of what to say other than first, TO GOD BE ALL THE GLORY, and Thank You!  Over the last four days the Foxhole Relief Project encouraged us, carried us through, and reminded us that while the last five years is not what WE had envisioned, it is God’s plan and He SUSTAINS and CARRIES us through the GOOD and the BAD.  Moreover, talk about the body of Christ….YOU….being the hands and feet of Christ on our behalf.  

Thank you to the friends of RHS ’97 who graciously listened to the Lord and began this project.  John 15:13 says “Greater love has no man than this, that a man lay down his life for his friend.”  Was this so true?  Many of you were on your knees daily for us crying out to our Father, Savior, and HEALER for M to be restored, Critter and M to be able to bond, and for our family’s strength and needs.  Throughout this weekend we too were on our knees sipping and drinking at the FOUNTAIN that sustains.  Boy was the water ever so good! 

To those that are still reading…There is a GOD.  God created you and I to have an intimate relationship with Him.  Because of sin, which we are born with, we cannot experience that intimate relationship with God.  But the good news is that God sent His Son, JESUS CHRIST, to be a sacrifice for our sin.  More amazing is that Jesus was here on earth fully man and fully God, walked a perfect life, was crucified/put to death on a Roman cross, buried…WALKED OUT OF THE GRAVE after three days.  By choosing to put our full trust in Jesus when he said “I am the WAY, TRUTH, and LIFE- no one comes to the FATHER, but by me” John 14:6, we can experience GOD in a way that is unbelievable.  We now have a great sympathizer…We now have a teammate in life that when things get bad, we can cry out for help and we will be restored.

RESTORED…Many of you over these last few days have prayed for our RESTORATION…note that the word REST is present.  We see that in the Lord’s restoration there also comes rest.  May this be true in our lives. 

Miracle 1:  As you know M receives treatment at home each week.  The last couple of weeks the treatment has left her in severe pain with a migraine headache that will not cease and lasts for four plus days.  As you can imagine, it is very painful and at times unbearable.  Yet, during the RELIEF project, M for the first time received treatment and did not experience any such headache.  Prayer answered…Thank you, Jesus!  Please continue to lift M up as she did get a migraine today that she is fighting and she will continue to receive treatments each Thursday.

Miracle 2:  We have always counted on the scripture in Matthew 6:25-34 where Jesus talks about taking one day at a time.  What comfort to know that even the birds are provided for daily….God cares that much, and yet how much MORE He CARES for YOU and ME!  So, daily we try to focus on TODAY rather than Yesterday or tomorrow.  Many of you that have corresponded have asked “How are you doing?”  While the week or the month might not have been the best, seizure-wise, we can sometimes answer that, “Today is alright.” 

Since your prayers, M has had multiple good days. For example, Sunday, the last day of the Relief Project, M did not have a single seizure!!!  While today she did have a couple, she still seemed to be able to go about a “normal” schedule with little difficulty.  Please continue to pray that we would see a decrease and that M would no longer have any seizures.  Moreover, pray for her strength to STEP OUT in FAITH each day TRUSTING  that God has His perfect timing and plan for her in this present trial.

Sunday, after church, we had a brief discussion on faith.  The Lord brought to mind the story about Peter walking on water to meet Jesus.  You know the story.  Peter steps out of the boat, begins to walk on the water at Jesus’ word of  “Come.”  Then, the winds and waves pick up and Peter begins to sink, cries out to Jesus to save him…Jesus’ response was “why did you doubt?”  Walking through this trial for the last five years has certainly felt like we’re sinking at times.  Yes, sometimes we doubted God’s plan.  We even at times lifted up our plan as an excellent substitute.  Yet, God in all His perfect attributes, knows exactly what He is doing.  That same Peter who began to doubt when the water became rough, was the same Peter that later Jesus said, "and on you, this ROCK, will I build my church and Hades will not overcome it."  How awesome to know that a man who apparently doubted and maybe even struggled with faith, was seen as someone that would bring about the church at the day of Pentacost.  

Miracle 3:  M had a post on our blog that many of you may have read: What’s it like to be a Mommy?  One of our prayers that you faithfully lifted up was for M to be able to experience motherhood and take care of Critter.  Even more, for Critter to not be as fussy so that M could take care of her.  Well today, M had an amazing day with Critter and was blessed with many smiles, giggles, and even a snuggle from her sweet, precious daughter.  What special “mommy moments” happened today that were such an encouragement and answer to prayer.  

These are some of the first real smiles M has been able to enjoy from Critter!

Miracle 4: As you might have already seen, financially you gave above and beyond what was originally set out as a goal from those that initiated this weekend.  We really can’t even begin to thank you enough for your overwhelming generosity.  To know that there are folks out there that care that much for us is unbelievable.  As a direct result of your sacrifice and generosity, Critter will now be able to have a full-time Nanny that will greatly help M as she continues with her healing process.  So, thank you!  It truly does take a village to raise a child… or maybe Texas, the US and 20 countries around the world to raise a child!

So, where to go from here?  Again, a very heartfelt and humble THANK YOU!  To see that PRAYER does WORK.  That if we humble ourselves and cry out to our GOD, He is faithful to listen and answer.  Thank you for giving your time and resources on our behalf.  We look forward to continuing to post on The FOXHOLE and giving you updates to M’s healing. 

Eternally grateful,

B, M, and Critter