February 24, 2015 -- Tired Girlie!!!

Just a quick update and asking for prayer for our tired girlie. . . 

A quick update first. . . Hope's significant med increase occurred over three steps.  The first step caused significant vertigo and dizziness throughout the day and she was pretty miserable.  But with each following step the vertigo subsided, and just dizziness persisted.  Once the increases were finished, the dizziness also seemed to settle back to her usual of occasional dizziness but not debilitating dizziness. . . this is a huge praise!!!  Thank you Lord for your grace in the management of side effects!!!

Hope did not have any seizures the week of her cycle, which made us feel like the med increase was effective!  She did have a very severe day of myoclonic jerks in both arms.  The jerks lasted all day and were so frequent and violent that she pulled muscles in her back, rib, and chest area.

However, Hope did have a seizure the week after her cycle.  It was a stroke like seizure where she was not able to speak during it and lasted for about 2 mins.  We were thankful that this seizure happened about 15 minutes after Trevor and I had just returned home from a trip away to a pastor's/wives conference, while my sister stayed with the girls!  What a praise that we made it home just in time, by God's amazing grace indeed!!!

She also has had several days over the last 3 weeks where she has felt very unwell with the following symptoms. . . bad headache, very sensitive to light and noise, flushed skin and warm to touch while feeling like she has the chills, vertigo, dizziness, "sticky" or funky eyes, and insomnia.  This has affected her attendance at school, and her ability to do homework after school because of not feeling well.

She now has several appointments over the next few weeks.  Tomorrow though will be the hardest for her.  I am currently up with her as she is having an EEG tomorrow afternoon (brain activity monitoring).  In order to try to get a reading of her brain activity when she is stressed and tired, they want her sleep deprived.  So she needs to stay up until midnight, then be woken at 4 am and stay awake until the test at 12:30 pm.  They will have her do a few things that are meant to potentially induce a seizure, and they will also see if they can get her to fall asleep then to monitor brain activity while sleeping.  If she is not able to fall asleep, then she will need to come back for a 24 hr EEG.

So, we're hoping our tired girlie will be able to fall asleep tomorrow in the test . . . if any of you know how hard it is for Hope to fall asleep, you know that this is a pretty big ask, and so I wanted to share it as a prayer request.  We trust that the Lord knows what is best and so if the 24 hr EEG is needed, I look forward to what information that may pick up on that tomorrow's shorter test could miss.  So we'll just take it one day at a time.  

Following the EEG, Hope will go and meet Dr. Brain!  For real!!!  I joked with her that it's about time in her "brain" recovery that she is finally meeting, Dr. Brain!  Ha ha!  Love the ability to laugh at life!  Dr. Brain is a gynecologist and will see if she has anything to suggest with the link of seizures to her cycle.  We'd also like to ask her about all these unwell symptoms that Hope is having and if they could have a hormonal cause.

If you could pray for Hope tomorrow, (or today for most of you as you will read this!) that would be fantastic!  Being sleep deprived certainly makes her more at risk for seizures and just general feeling unwell.  Meeting new doctors is stressful for her.  EEG tests are stressful for her.  So it won't be a very fun day.  She was pretty upset when she first learned of it all, but after talking it through with her and making a plan of lemons into lemonade, she has been a trooper!  Our lemonade plan is mom, the night owl like Hope, is staying awake with her until midnight and having some fun time together . . . she's currently finishing off her night with some story time.  How this kid loves audio books!!!  Then dad, who does mornings best in the family, will get her up at 4 am and spend some special time with her . . . I think they are going to start reading another book together.  She's going to try to do the first two hours of school, just to try to stay awake and out of her bed!  Then we'll pick her up and take her for a quick lunch before the test.  Thanking the Lord for a sleep deprived girlie that is comforted by a lemonade plan of spending special 1:1 time with her mom and dad!  How she blesses our hearts!

Okay, it a few minutes after midnight, so I gotta get this tired girlie to bed!  Thank you so much for your prayers, dear ones!  What a blessing that we can continue to share our needs with you faithful prayer warriors!!!  It is such a comfort in these difficulties!  You are so loved and appreciated!!!