Here's a picture of their sweet time together yesterday . . .
|Jam Singing Session with Sweet Sarah|
Unfortunately, as sweet as it was, I can't post the video of them singing together because it was flagged for copyright reasons on YouTube due to the song playing in the background.
So on to the update . . .
After the sleep study and very minimal sleep over Tuesday night, Hope felt very unwell the first full day here (Wednesday), but had no seizures that we were able to see. However, the next day when the doctor visited us, she said that Hope had a sub clinical seizure (means that there were no signs whatsoever to the eye that Hope was having a seizure and she herself also did not know it was happening). This sub clinical seizure lasted for a whopping 8 mins (longest one we've ever known her to have!). They know it originated or started in the right frontal lobe but then spread throughout the brain from there. The doctor said that it was both interesting but also concerning information.
Hope's second full day here (Thursday) looked totally different than the first one. She felt quite well all day after an overall good nights sleep. As wonderful as that was, it's not the plan for Operation: Bring It On, Seizures!!! So when the doctor came by later than afternoon, she said that Hope would need to stay over the weekend for further monitoring and hopes of capturing the needed seizure information. She also decreased Hope's med again. She came into the hospital on 2100 mg per day, and is now on 600 mg per day . . . a huge decrease and over a very short period of time (less than 48 hours)!
Hope was very disappointed at this news of need to stay over the weekend; we all are. . . yet we understand that it is necessary and best for the purpose of the mission to gather information about her seizures. Trev and I did share a chuckle as we recalled the statement that only 1 out of 10 kids need to stay the weekend . . . it would seem that our girlie does fall in the "out of the box" or "out of the ordinary" pretty much ALL the time! But the heartbreaking side is knowing that she is going to miss the Jr. High Spring Formal that she was so excited to attend. She had a few tears and welcomed some comforting hugs from her sweet little sissy when she arrived after school, and her grandparents that picked up Gabs for us and came to visit! It never ceases to amaze me how much God enables her to have the ability to move on quickly and find ways to turn the lemons that so often enter her life, into lemonade . . . through tears, she said to me, "Well, mom, we're gonna be able to finish that book we've been reading!" We will definitely work hard over the next few days to make the best of this and drink our "lemonade" that God's mercy, grace, goodness, and faithfulness always provides!!!
The doctor left around 4 pm, and about 2 hours later, Hope started to have myoclonic jerks. They started infrequently in her right arm, which is the most usual, but quickly built to every few seconds and occurring in both her right and left arms, and the most harsh ones being on the left side. We were asked to push the marker button on the EEG every time she had a myoclonic jerk . . . Hope has been working on her Grade 8 math homework (solving linear equations) and so since we have math on the brain . . . she had 1-2 jerks every 2-3 seconds and we ended up marking them for 4 hours straight! That is a LOT of jerks! We appreciate all the more how much it tires her out and makes her muscles so sore after we took turns trying to keep up with marking every one! Yikes . . . that was a task and a half! So thankful for these moments where God provides a greater understanding of her suffering so we can become better care givers and comforters for her!
Trev needed to get Gabsi home to bed for one last day of school this week. Poor girlie is running on fumes and we're all pretty tired . . . hospital stays always have a way of leaving you zapped (a word Hope and I are enjoying this week as we keep shocking each other . . . not sure why . . . it's super dry in here, but also maybe cause of all the wires attached to her cute little head!). They left at 9:30 pm after Trev, Hope, and I did everything that would usually push the myoclonic jerks into a seizure to no avail. So from 9:30 to 10:15 pm, I read to Hope while trying to mark the frequent jerks every couple seconds. . . she was a good sport for how she was patient with the outcome of that! Then at 10:15 pm, we received the great news that we didn't need to continue marking each jerk any more! Yeah! It was a welcome break, especially as her jerks continued until after midnight. We got a lot of unhindered reading in, which was great fun! Around midnight I took a break from reading to start getting things ready for bed, and to try to wake myself up enough to be able to read the one last chapter we had decided on before calling it a night. Hope needed to use the washroom, and so I helped her in there by myself but with the wheelchair instead of walking due to the jerks making it too uncertain and difficult for her to walk safely. We did fine . . . she's such a great helper, holding her backpack of wires and plugs! She asked to brush her teeth while there and we were about 10 seconds in to brushing her teeth when she started having a seizure. It was one of her "jerking" type seizures that usually come with the myoclonic jerks.
The good news is that the seizure was caught on the EEG monitor, however the bad news is that being in the bathroom, I was not able to mark it nor time it (out of view of the clock), and it was not captured on the video (because there is not camera in the bathroom for obvious reasons). Boo hoo! I was able to pull the bathroom call light, and it took a bit for a nurse to be able to come and assist us . . . but I was able to stay with Hope and keep her safe and comfort and reassure her through the seizure . . . these ones are quite painful for her. I was able to write out a description of the seizure for the doctors as this will have to do in lieu of the video recording, and when the nurse did come, she was able to pay attention to the time remaining, and so she figured that the seizure lasted for about 4 1/2 to 5 minutes total. So a long one! At home, these jerk seizures are typically 1 1/2 to 2 minutes long. Immediately after the seizure, the myoclonic jerks stopped, and Hope's right side was left flaccid and weak . . . she was completely unable to move her right arm. We were able to finally rinse her mouth out from the toothpaste, and then the nurse helped me to get Hopey back to bed and settled. I read her the last chapter and then put on some sweet Scripture lullaby music and she was asleep by about 1:15 am.
She had a good sleep and again this morning is feeling just fine . . . no unwellness other than the usual occasional dizziness and some nausea. So we will see what the doctor says when she comes by later this afternoon. Not sure if she will send Hope home after hearing about last night's seizure, or if she will recommend that we stay and yet try to capture the other kind of seizures that Hope has, as well as see if any more sub clinical seizures occur. She will not lower Hope's medication anymore as she said it would not be a good idea. So the next thing we may be asked to do to induce seizures is sleep deprivation, limiting Hope to only 4 hours of sleep at night.
So that's the update that we have for now! I'm sorry that I'm not very good at getting back to messages, but please know how much they do mean to us all! Thank you so much for all your encouraging notes and as always for your the blessing and sustaining grace of your sweet prayers! We trust that God will work in the way that is best for our girlie . . . in and through her . . . for her ability to be grown more like her Saviour, and to impact others for His glory's sake and Kingdom's sake! That's what we're still here for!
You are loved, dear ones!!!