Friday, January 22, 2016

January 21, 2016 -- Sister Knows Seizures

Another update on Hope and her continued seizures (today was another rough day for her), but I'll tip you off . . . there is a "sweet ending" . . . 

Hope had two more seizures yesterday evening, Wednesday.  These seizures were the jerking seizures. Her first seizure was in the van as we were pulling into the driveway returning home from an appointment for Hope.  She had lots of myocolonic jerks leading up to the first seizure, but they continued afterwards.  She then had a second seizure later that evening at home.  An early bedtime and getting some sleep seemed to end it.  

And then, two more seizures today!  This morning, she was a bit slow and thick-tongued with her speech, but that can happen when she's tired. She went to school and a few hours later, her EA let us know that her speech had become much more slurred, and she was having difficulty pronouncing words/sounds per her usual.  Shortly later she started having myocolonic jerks as well, so we picked her up early from school and brought her home.  Her speech stayed slurred and her eyes were "off," so I stayed sitting at her bedside.  She had her first seizure just before 4 pm and the return of Trev and Gabs.  This seizure was like the seizure last Wednesday (the "typewriter seizure").  It lasted around 2 1/2 - 3 minutes and was very upsetting for her, as she cried throughout it.  Her head really hurt afterwards and her speech worsened too.  I took a few videos throughout the day to have as a record for her doctors. . . here is the one taken about 5-10 mins after the first seizure and when her sweet little sissy came home. . .

You probably noticed Hope's eyes kinda jerking around every now and then. . . this is what we mean by her eyes "not being right."  Also you heard Hope saying, "scary" as she expressed her feelings about the seizure.  When she said "I don't know what I am saying," I wasn't sure what she meant.  She explained later to me what she was referring toAnother new thing she has never described before. . . she said that after the first seizure that although she could make sounds and somewhat get words out, she was not able to hear any of the words that she was speaking!  She said that she knew that she was saying something, but she couldn't hear it.  Our brains are amazing things, and only when things go wrong, can we really appreciate how amazing God's creation is in what all our brains do for us!  We think only of our eyes seeing and our ears hearing. . . and they do! . . . but without our brains also seeing and hearing, it doesn't matter how well the eyes and ears work, you won't see or hear . . . and that describes Hope's impaired vision (cortical visual impairment or CVI) and this strange after effect of the seizure today that lasted for about 20-30 mins.

We kept her home from youth group tonight.  Her second seizure was shortly after her dad returned from taking Gabi to youth group.  Both Trev and I didn't even realize she was having a seizure at first, as she was unable to make a sound or talk.  Thankfully, because her arms were up, she was able to get her hands over to tap me, as I sat by her bedside.  When I looked up, she was in full seizure mode. . . this one was a "stroke-like seizure," but also had some new symptoms that we haven't seen before.  Although she didn't stop breathing, her lips did get a little blue by the end, as it affected her ability to breath, she told me later.  Her breathing sounded like snoring towards the end of this seizure.  She said she could not breath out.  The seizure caused the muscles on the right side of her face and neck to contract and pull back which kinda flattened her neck and pulled the right side of her cheek and mouth back . . . I'm wondering if it was also pulling her tongue back and blocking her airway off/on as it contracted during the seizure, and thus the snoring type of sound coming from the back of her mouth as she tried to breathe.  

Hope had a long cry after this seizure and was quite upset and scared.  This is probably one of the hardest parts of seizures for Hope now. . . she is aware and remembers and responds like you would expect (vs the past where she was less aware and doesn't remember as much).  It was also very scary after this seizure as she was completely unable to move her mouth or make a sound for over 30 minutes as she recovered from the seizure.  This made me so sad remembering how long our girlie lived like that, being unable to communicate . . . the first year and a half following her brain injury!  Her head hurt quite bad afterwards again, but I think that being completely unable to speak afterwards was the most upsetting for her.

The rest of the evening, her speech was still slurred and she was very difficult to understand.  However, it did somewhat improve very gradually.  We stayed with her until she was well on her way to sleep, and Trev just checked on her and she is fast asleep now (at 11:30 pm).  So we are praying that she will have a good night sleep and tomorrow can be a different day for her.

We almost took her into the hospital tonight . . . we went back and forth on what was best for Hope and how concerned to be. . . we're concerned for sure, but just whether it was prudent to rush her to the ER was a harder decision to make.  It's easy to think, "better safe than sorry."  However, a hospital ER trip means lots of assessing and testing and not resting and sleeping which is the best way for her to settle her seizures.  That in and of itself could make her have more seizures.  The ER is also not aware of Hope's LONG history and so it is really difficult for them to treat her issues safely . . . so we really only have used that medical entry point when she was truly acutely ill and waiting was just not an option.  There's a lot more I could share with you that we talk about as we go back and forth in this decision, but I'll stop there, and instead just ask for your prayer for wisdom for us as we face these decisions.  I would be terrified but for the knowledge that I can trust God to work through us and give us leading of how best to care for Hope.  Even when the outcome is unwanted, we can trust that He's working for her best.  Not always easy in my mama's heart concern for her, but now 4 years into this journey, God is faithfully growing fruit in our hearts to seek Him and then trust Him, and I'm so thankful for that!!!  And I'm also thankful that God always leads us in a unified way . . . it is so good in those stressful moments to be on the same page with what you feel is best!

She is at a total of 9 seizures now in the last 8 days, two of which affected her breathing.  This so far beyond any seizure activity that Hope has had in the past.  If tomorrow continues with seizure activity, we will be taking her in to the hospital.  We will also be picking up a new bottle of Ativan for an emergency.  We're pretty sure that we'll keep Hope home from school tomorrow, and we'll see how she's feeling in the morning (which is usually the best she'll feel all day if she is going to have seizures) as to whether we should take her to her scheduled orthodontic appointment.

We are so thankful for everyone who continues to remind us that they are praying for our precious Hopey girl, and for wisdom for her parents!  Hope has an appointment with her neurologist next Tuesday, January 26th in the afternoon.  I will keep you posted on what comes from that, as well as if Hope's seizures continue or begin to let up for this month. . . that would be most fantastic! 

I've saved the best for last. . . I'm sure you noticed the sweet sister love at the very end of the video above.  Right after I turned the video off, Hope said so sweetly and adoringly, "I love you, Gabi" and they hugged again.  It sure blesses this mama's heart!!!  So I'll close this post with a "sweet ending" . . . a little story about our sweet Gabi . . . aka Little Sister Extraordinaire!  I already shared that Trev and I didn't recognize Hope's second seizure right away . . . well, on the way home when Trev picked her up from youth group tonight, he was telling her about Hope's second seizure.  After listening, Gabi said so matter-of-fact, "Dad, Hope holds her hands up when she's about to have a seizure."  He was pretty impressed with his baby girl and her keen observation skills, as he shared the story with me when he got home.  It reminded us of a gift Hope gave Gabi for Christmas just this last month.  Hope and I were at a shop and I was reading a bunch of different magnets.  As soon as she heard me read this one, she insisted that she wanted to get this for Gabi as a gift.  Here is a picture of the magnet Hope thought described her "Little Sister Extraordinaire" . . .

Sister love is a really special treasure!  Thank you for continuing to pray for Hope and our family!  You are a really special treasure in our lives, too!!!  God is faithful!!!


  1. Thankyou for sharing yet again about your beautiful Hope. I love reading your blog and hate it at the same time because it stirs up so much emotion in me. With that said, I see God in all you write, your family inspires me. The strength you all have because of your faith is what we all hope for in times of trials. Thankyou for sharing and opening up your life to give others strength. God Bless!

  2. Continuing to keep all of you in prayer - especially Hope right now, that God will bring an end to this increased seizure activity. We trust Him for the wisdom and guidance you and Trevor and all her medical team need in order to care for her in the best possible manner and we are SO thankful for Gabi and the special relationship the girls share and Gabi's keep sense of observation. May the Lord continue to bless you and especially to fill you with His wisdom, guidance, and peace.