About Us

My Photo
Shawn, originally New Yorker, transported to Tennessee for a few years, chased the love of his life in Iowa, only to move her back to Tennessee. Rachael, small town Iowa girl that traveled the globe to find her love in Tennessee. Little did we know how much our lives would change when Little Miss Magdalyn Joy entered the world. Join our journey through the unknown of Maggie's medical issues, known truths of God, and the nuts and bolts of life.

2.11.2014

3 months in and 30% reduction!!!

As promised....we take a break from medical marijuana advocacy to bring you the not so regularly scheduled Maggie updates.
We have one tough little cookie.  Ironically, early last week I was bragging to my grandma that Maggie and my immune systems were going strong and we had avoided the nasty bug Daddy had the previous couple of weeks.  Then bang...the next day she was struck down with a cold and fever.  She was feeling kinda puny.  But, I felt like it passed fairly quickly and wasn't all that bad.  Two things....definitely prayer, because she took a turn for the better once we rallied the troops to start praying.  And....her cannabis oil!!  The one night she was really feverish and doing this weird shaking.  I was having trouble discerning if it was seizure activity or just the chills really bad.  We decided to go ahead and give her a little booster dose of CBD.  Then Mags and I went to bed on the couch.  She woke up a couple of hours later...fever had broke and she was much more chipper.  We still have a lagging cough that we'd like to see go away, but overall, she was quite the little trooper with that cold.
Seizure counting...On Sunday, we took the clicker and counted every spasm and myoclonic jerk to get an assessment of her seizure activity.  She has been on Charlotte's Web for 3 months now and we knew we were seeing a reduction.  Before now, we just didn't think it was worth the time to take the clicker and watch and even feel her every move.  However, we did want the data to be able to quantify and share her progress.
Before I go any further let me remind you of the last time we did this. It was while we were back in Tennessee, just shortly before we moved.  At that time,we got to over 500 (combination of the Infantile spasms, which are generalized seizures, and then the myoclonic jerks).  It was so discouraging, but confirmed our decision to move.  When we got to 500 Shawn threw the clicker on the counter that evening and we stopped counting.
This time around, I realized quite a few things.  Maggie is much more active than she was previously.  When we counted before, nearly any movement she had was some form of seizure activity.  This time I had trouble discerning intentional rigid muscle movement from seizure activity.  I also realized how difficult it is to be objective with this.  Of course I want to know she's having less, but I really tried to err on the side of...if I was in question, I counted it as seizure stuff.  We also were coming and going much more than last time, but I added extras in for the assumption that I missed a few while in the car, etc.  If anything, I over-counted this time.
So the final total for the whole day was just over 350.  Yes, a little depressing still, but she's had a solid 30% reduction in her seizures, all while eliminating a seizure med, getting over a cold, and teething (these stinkin incisors have been working their way in for the past 6 months...grrr)  We are ecstatic with her progress.  One other thing to note is that the intensity of the spasms have clearly decreased as well. And we still have quite a bit of room to increase the CBD and have 2 more seizure meds to get out of the system.  I looked at Shawn the other day and said..."she is one tough little cookie.  When you think what all her body is going through, it's pretty amazing how strong she is!!"
And then tonight, she worked hard to try and mimic my clicking.  We know she's in there...just waiting and working on coming out!!  As Shawn said while admiring this little sweetie...It's a hard knock life!!

5 comments:

  1. we are cheering you on little one !

    ReplyDelete
  2. We're thrilled with the encouraging news! Love and miss you guys.

    Beth Anne

    ReplyDelete
  3. YEAH!!!!! God is good and Maggie is a tough little soldier! :-)

    ReplyDelete
  4. YEAH!!!!! God is good and Maggie is a tough little soldier! :-)

    ReplyDelete
  5. Keep posting Rachael. It keeps us close. All my love - Donna Salter

    ReplyDelete