1 Week! {and a cutesy hairbow}

We officially joined the Seizure Club this month.

Our neuro suspects that Adelaide has been having seizures since the end of January, but our first documented seizure was Valentine’s Day.

Here is a stream of Facebook posts to catch you up.

I found Adelaide thrashing her head from side to side while sleeping. But her eyes were open, completely glazed over, and she wouldn’t wake when I was trying to wake her. Her eyes weren’t blinking or focused on anything. Then, she finally woke, but she was very confused and quiet.

Dave and Graham often sleep with opened eyes and Adelaide has done it on occasion. Is this self-stimulation head-thrashing with opened eyes while sleeping, or could it be a seizure? I am obviously going to call our neuro, but am looking for advice.

So blessed to spend my morning with Miss Bess {who has been awake since 5 am} and my friend in Massachusetts. God has given me some amazing women on this polymicrogyria journey. Have a blessed Sunday…and pray that God tells me what to tell the neurology office. Without a video, it is hard to explain what is going on. I am feeling a tad incompetent this morning.

Adelaide’s potential seizure activity is considered a non-emergency, so we should hear back from someone in our neuro’s office between 3:30 and 4:30. Long day to wait for news.

Our nurse says it was ‘most likely seizure activity’ and ‘typical seizure behavior’ but our neurologist will be calling this afternoon to discuss our options and get some additional details.

On a positive note {because I really need one today}, Adelaide is getting fitted for her AFO braces in just two weeks.

Our neurologist called…

Most likely a seizure, but we will need to monitor her and see if it happens again. If it does, we travel to Kansas City for an EEG.

So, I guess I need to stop sleeping, so I can watch her at night?

Sigh.

Seizure Mamas: How do you monitor when you are also asleep? Did you set up a camera? I don’t want to just leave this to chance…she could actually lose the little bit of progress we have made in the past 15 months if this happens and we don’t see it.

Last night, I told Dave it was impossible to get any further behind in the laundry department.

This morning, Adelaide vomited in her crib.

So, there you go.

Seizure Mamas: Adelaide vomited this morning. She isn’t running a fever. Do I need to call the neuro’s office? She also has dark circles under her eyes, despite supposedly getting 12 hours of sleep last night.

Adelaide will be having a sleep-deprived EEG soon, since she had a ‘suspected seizure’ on Valentine’s Day and ‘suspicious seizure activity’ early this morning. Please pray first for immediate healing. If that isn’t God’s will, we pray that Adelaide’s brain would do exactly what is needed during the monitoring time in order to get her the help she needs. We are also praying clarity and wisdom for all the professionals who will be working with Adelaide. Thanks and God Bless.

We need some serious prayer. Adelaide just had a full-blown seizure. Completely unresponsive. Vomiting. Choking on her vomit. Eyes were glazed over, but pointing up and to her left. Her eyelids were partially closed. Couldn’t be roused. It was almost 90 seconds long. Didn’t have time to grab my camera, because I heard her choking.

I am starting to feel like I am going to break. Or am already broken? I am not sure. I will just go back to keeping myself awake to watch her sleep.

I am using facebook as a bit of a notebook right now…

Dave said he heard Adelaide laughing very loudly and abruptly in her sleep last night. Is it possible that she was having a gelastic seizure?

Waiting. I have spoken to three people this morning. All very nice. Our EEG orders were placed two days ago. They are trying to fit Adelaide in earlier. Earlier than what? They didn’t know. She isn’t considered an emergency case, but they are working on it. I was given instructions about when to call an ambulance. And now I wait.

Dr. says she is having too much activity to wait for treatment. We start seizure meds this afternoon and he is ordering an emergency EEG. Thanks for your continued prayers!

Well, we didn’t hear about a time for our EEG appointment, but at least we have medication!

Graham finally fell asleep. He has been in there talking to himself for what seems like days. Adelaide is completely peaceful…for the first time in about a week. Bess is laughing in her sleep and it is adorable. I paid the bills and got the washing machine ready to start in the morning. Headed to bed so I can be ready for that phone call in the a.m. Believing we will have our EEG information before noon! They are trying to move some things around to fit us in next week. Such a busy hospital helping so many kiddos! β™₯

Well, we didn’t hear from the neurophysiology nurse. So, here’s hoping we hear on Monday.

God’s timing. In *all* things

Our ’emergency’ EEG has been scheduled for March 12th! Hahahaha! At least we have seizure meds! All joking aside, we are grateful for our neurophysiology staff!

Adele is experiencing so many of the side effects of her new medicine. It breaks my heart to see her feeling so yucky.

Keppra Rage. It’s a real thing, folks. Our sweet-tempered Adelaide now has crying and screaming fits. Several times a day. Sometimes lasting for an hour. Bess cries with her. And Graham shouts at me to stop them both. And if Bess cries first, due to her silent reflux, Adelaide will start. Sometimes, Graham joins in with the crying. And I want to cry, but I try to hold it together.

It’s a little wearying. Please pray for us.

 

I am so grateful for my online communities. I had people losing sleep in order to answer my questions, share Scripture, and just offer some encouragement.

This morning, we started our increased dose of Levetiracetam, and Adelaide’s side effects have worsened. Thank you to everyone who has been praying. Even though we have been on seizure watch for almost 18 months, it is still a difficult reality to adopt.

BUT, today we also have some joyful news! Adelaide is ONE WEEK SEIZURE FREE! And look at that hairbow…

IMG_6203

 

 

 

 

 

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3 thoughts on “1 Week! {and a cutesy hairbow}

  1. Meta says:

    wow. i don’t even have any words. thank you for sharing, as hard as it is. Our God is bigger… praying for u.

    Like

  2. […] to blow her nose. She can’t take any symptom relievers, because they will interact with her seizure meds. We know, because we accidentally gave her one back in Spring 2014 and she had a reaction. We […]

    Like

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