May 9, 2016 -- Operation: Bring on the Seizures is Finished!

Monday, May 9, 2016
We're home!!!  Hope was discharged home from the hospital today.  Here's an update on the results of the long term monitoring for seizure activity that we know for now . . . 

Interestingly, Facebook posted a memory reminder from a photo that I posted exactly 3 years ago . . . we had also returned from the hospital that day!  

Caption on the photo from Facebook, May 9, 2013 . . .
Our sweet girlie fast asleep in Mommy's arms after returning from the hospital this afternoon.  It was a long day!!!


How time flies!  I was still able to hold and snuggle her in my arms back then!

So the long term monitoring for seizures mission ended this morning.  Hope's stay was extended over the weekend in the hopes of trying to capture more seizures, especially different kinds of seizures that Hope has been known to have.  However, Hope felt better and better as the weekend continued!  We even tried sleep deprivation, which has been thought to lead to seizures at times. . . Gabs spent the night with Hope and I at the hospital on Saturday night and we had a late night game of Horseopoly (Monopoly but with Horses . . . it's very fun!) before we had Gabs call it a night, and then Hope and I continued to read her book until 5 am.  I woke her up about 4 1/2 hours later and thought we had a good chance of causing a seizure or at least some of the pre-seizure type symptoms that we see at home!  But although our girlie was very tired, she had absolutely no seizure activity or pre-seizure symptoms yesterday.  

Here are some picture of our fun and the sleepy follow through . . . 

Mom/Daughter fun in the hospital while Daddy worked on his sermon at home!
Sorry!  I'm not the best selfie-taker!!!

Love these two precious sisters and the closeness they are blessed to share!

So the long term monitoring for the week was only able to capture an 8 minute sub clinical seizure (not seen by us or felt by Hope) on Wednesday, and about 6 hours of her myoclonic jerks followed by a 3 minute jerking seizure on Thursday night (the nurse had estimated about 5 minutes for this seizure, but the monitor later revealed it was only 3 minutes long).  That's it!  Even with her med decreased from 2100 mg per day to 600 mg per day!  So the neurologist following Hope this week decided that it would be prudent to have a follow up ambulatory EEG in one month.  This means that Hope will go back to the hospital for her to have the EEG leads put back on but then will be able to come home for 3 night, 4 days before returning to have the information downloaded and EEG leads removed.  This will happen in June sometime.  The doctor was especially interested in doing this follow up ambulatory EEG because of the longer sub clinical seizure that was seen on Wednesday shortly after the medication dose was greatly decreased, but then not again the rest of the week.  She would like to make sure that Hope is not having sub clinical seizures.  We will also follow up with the new pediatric epilepsy doctor we met in March, but not for 3 months.  So no information regarding the data gathered for a while yet.  Feels like a long time away, but trusting the Lord's timing in all of this!

We did have a chat with the doctor yesterday about Hope's surprising lack of seizure activity with such a huge drop in the seizure medication, and also how the seizures didn't start becoming a more frequent and concerning issue until after a large increase in the medication last summer (simply to adjust to a certain mg/kg since Hope had grown so much over the last 2 years and had no med increases in that time).  She said that was interesting also and would need to be further discussed.  She also agreed that it would be a good idea to try her back on a lower dose of her seizure medication, and chose to send her home on 1500 mg per day instead.  

Hope can be so sensitive to medications, as well as sensitive to changes in medications, that we are really unsure of what this week ahead will hold, or the month ahead until the next EEG, especially at this lower dose of seizure medication.  However, we are thankful for the opportunity to try a lower dose, as we had concerns that this medication may not be the best fit for her.  We are praying that the Lord would protect her from any severe seizures, especially the ones that affect her breathing quality!  And we are praying for wisdom for the doctors as they sort through a lot of information and try to discern the best treatment for Hope's seizures.  All the while praying that God would also heal her, as we know He can do!  We trust in His plan for our sweet girlie . . . He is always good and always working for the good of those who love Him and are called according to His purpose!  Romans 8:28

So, that's our update!  Hope has had her second bath of the day, and I'm off to start tackling some more combing through the globs of matted hair and glue residue that is still present.  It is pretty miserable for her, but armed with lots of leave in conditioner (stuff that some of you compassionately gave us when we dealt with horribly matted hair 4 years ago in the hospital), and a couple of special brushes (also given to us by dear people who wanted to help Hope with her struggle with easily and severely matted hair), we WILL win this battle . . . at least eventually!!!

Before, Mid, and After Photos . . .

After the shampoo cap was removed at the hospital, right before bath #1!
THIS IS WAR!!!




This is after one shampoo cap and two baths!  It's hard to see just how bad all the huge matted chunks of hair are, filled with globs of glue residue throughout!

Some of the hair that lost the battle!  Hope is one tough cookie and this was very unpleasant. . . was about a 2 hour process with breaks here and there for a total of about 1 hour combing time.


Finally, VICTORY!!!  Well, mostly . . . she was exhausted as you can see in the picture and there was still a fair amount of glue residue, but the matted chunks were gone.  Another bath tomorrow will hopefully deal with the majority of the remainder of the glue now that the matted hair has been tackled and survived!  Little sister definitely provided lots of hugs and comfort!!!

Our girlie also has several sore spots on her forehead, temples, and in her hair from where the leads rubbed the skin right off and left red weeping abrasions. . . she's a tough cookie and not complaining, but prayer for all those to heal without infection would be grand as well!  Also adds another dimension of pain as we try to brush her hair, and we can't see where they are (plus there's tons of them) with all that beautiful hair!  Here's a picture of the ones on her forehead . . .



Thank you so much, dear ones, for all your prayers, love, notes of encouragement and continued heart to follow the story God is writing for our Hope!  You are so loved!!!

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