And He said unto me, "My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me."
2 Corinthians 12:9

Thursday, September 19, 2013


To Live Is Christ

Phillipians 1:21-23

21 For to me, to live is Christ and to die is gain. 22 But if I am to live on in the flesh, this will mean fruitful labor for me; and I do not know which to choose. 23 But I am hard-pressed from both directions, having the desire to depart and be with Christ, for that is very much better...

What a day!  Whew.......

The morning began in the usual raucous fashion with labs being drawn at 6:00 AM, followed by residents and med students coming in at 7:00 AM and thereafter more up and down and the day has begun.  Today was PLEX #5.  As we have shared previously Princess' seizures have gone out of control this week during the entire PLEX process.  In our disappointment and frustration we spent a lot of time last night pouring through our 7.5 years of collected data and Princess' seizures trying to best extrapolate ways to communicate to the doctors that this week has not been a good week and we aren't sure that PLEX is working.  While given the opportunity to share first thing this morning, our time was severely limited as the resident was quickly paged to get to a phone call; thereafter, we were left frustrated in not being able to share our finding for the resident's report to the attending physician that would guide and direct Princess' care for the day and the rest of the week.

PLEX this morning started early and took us through most of the morning.  We had a wonderful surprise and gift as Critter, Princess' Mom, and Miss C, came up to the hospital and joined us for lunch.  What a delight to see Critter and get some much needed hang-time with her.  She is such a delight and did such a great job at the hospital today.  We miss her desperately and cannot wait to be back home.  It is so good to get her hugs and kisses.  A sweet moment was when she grabbed her toy cell phone, dialed the doctor and said, "Hi doctor, make mommy better and send her home.  Mommy go night, night."  Wow, how precious and sweet.

Another precious part of the day was surprise visits from some of our friends.  The G family came, along with Mr. H, and another one of our precious prayer warriors and friends from college.  The G family was gracious to come up and share their time as the residents and attending physician made their afternoon rounds.  However, before they left, they took the time to pray over Princess.  How precious when the Lord hears the voices of his children?  It was so sweet hearing the children pray for Princess.  I then closed us out in prayer and wouldn't you know, lil' Critter joined in and began praying for Mommy.  WOW!!!

Shortly after everyone departed our lead Neuro did come to visit.  I'm not quite sure if he saw that he would stay with us for the next two hours or even where our conversation would go, but we are grateful for the extended visit and for his ear.  It was somewhat frustrating because he wants to keep going with treatment.  However, Princess has already had 2.5 times as many seizures as she had last month.  So, it's hard to see the progress.  We did share with him where we place our trust and that we trust HIM to guide his hands, mind, etc.  He shared with us that he does not know the Lord personally.  So, will each one of you lift him up this evening that he will come to know our Savior, Lord, and Ultimate Healer?

We finished the 5th Exchange today.  The original goal was Five Plasma Exchanges and then it was determined that seven might need to take place.  Obviously, having the week we've had, we definitely want to stop at five.  Our numbers and data would support this decision.  The Plasma Exchange team agreed with this decision.  However, the Neuro wasn't exactly as thrilled or supportive of this thought.  He really would like for Princess to move forward with the seven exchanges.  Obviously, there is now some back and forth that needs to take place.  Bottom line, he does feel that the five exchanges that have been completed is the minimum.  While most folks that are receiving PLEX due to an auto immune condition will begin seeing results as soon as the third or fourth exchange, he is not so much convinced in Princess' case.  Rather, he feels that it may be a week or even a month before we'll know if this particular treatment even worked.

On a side note, we are looking for some good places to eat around here.  Princess has had a seizure each time she's eaten the food they bring from the hospital.  Her Mom has brought us chicken and pork chops and veggies from home to reheat, but we need a little change! ; )  

Please pray for all of the decisions that will need to be made Thursday.
  • Do we continue and complete a full seven rounds?
  • Are we willing to consider starting chemo?
  • Are the docs willing to think outside of the box?
Please pray for our docs heart!
Please pray that we would have an overwhelming peace about the decisions that need to be made and that we could share those well with the docs.
Please pray that we all get some restored energy.
Please pray for continued provision as Princess' hospital stay is approaching three weeks.

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