Hope was a rock star with her late night and early 4 am morning yesterday! We are so blessed to have a girlie that loves hanging out with her ma and pa, as well as audio books SO much! She had a great attitude as she headed to school in the am, and did fine for the couple hours she spent there. She then chose a sweet pork enchilada from Costa Vida for a pick me up lunch treat to keep her going. There was a whole lotta yawning by the time we did arrive at her EEG appointment.
Hope's last EEG was done in September 2012 . . . wow, how much have things changed since then! That appointment was very hard on her throughout and her ability to cooperate was very limited. All of this made it hard for the technicians to get very many valuable readings, also due to how upset she was. Yesterday was so different, and such a great reminder of how far our gracious God has brought our girlie since then! We praise Him first and foremost, for He is worthy of ALL praise!!!
Here is a picture of Hope getting set up with the multitude of colorful wires . . .
Once all the wires were attached, her head was wrapped with gauze to keep it all in place for the duration of the test. The technician was sweet and offered another picture with the final look, as she held up all the colorful wires . . .
The majority of the test went well. Hope was asked to do some deep breathing for 3 minutes for the test. This is hard for her to do and makes her feel unwell. However, with some coaching and support from mom, she was able to complete the task most of the time that she was required to. She was a bit upset, but I was so thankful to see how she was able to set that aside and focus on the task she was asked to do . . . this is something that she can really struggle with in a stressful situation and has been a long standing result of both her brain injury as well as just fear of all the procedures, tests, doctors, etc. that she has built up over the last 4 years! Anything new is stressful for Hope, and she does not remember any of her past EEG tests . . . but now she will! : )
I was also thankful to see another ability that God has brought improvement and growth in . . . deep breathing! This might sound funny, but for those of you newer to Hope's story, you have to remember that when she first woke up after her brain injury, she was not able to lift a finger, close her mouth, or even have a reaction to painful stimuli! She has had to relearn how to do every single tiny task one step at a time . . . I could talk about this for a while, but suffice to say that when she had her back surgery in Sept 2014, Hope was still not able to do deep breathing. She could not take a deep breath in and then blow it out quickly with force. So to watch her yesterday doing deep breathing with forceful expiration was impressive indeed! She wasn't as good as you or I might be able to do it, but it was a significant and remarkable difference from the last time I saw her try! Again, ALL praise to a worthy and awesome God who continues to wow us with the "little," which are really not so little, things here and there!
The only other part of the test that was stressful for Hope was close to the end, where they flash a strobe light over her face in a dark room. She is supposed to have her eyes open and then close them when the strobe light came on. . . this stresses the brain and can show possible seizure activity. However for Hope, with CVI (cortical visual impairment), this is not only stressful to her brain, but extremely painful to her eyes. She tried to comply but only lasted for about 10 seconds before the tears came. Crying makes the EEG readings unusable, and so the technician decided it was not worthwhile to try to continue the use of the strobe light, and it was stopped. Hope completed the rest of the test just lying quietly, which was no problem for her.
She was also stressed about falling asleep, and so I talked to her about just relaxing and seeing what happened, rather than stressing and telling herself she wouldn't fall asleep. Her daddy laid beside her and held her hand (she's such a daddy's girl. . . always has been since she was a baby . . . so sweet!). Another quirk with Hope's brain injury is that the more she TRIES to do something, the harder it is for her to do! This is across the board with any activity, but is especially intense when she is under a time constraint or just plainly stressed about it! It can be SO frustrating for her, and is painful for us to watch too!
So in answer to the big question . . . did she fall asleep???
Are you ready for the answer . . .
WE DON'T KNOW!!!
For real!!! I know, crazy Peacocks, eh!!! We do know for sure that her daddy fell asleep next to her! Bahaha!!! So we all heard "sleep-type" deep breathing during that part of the test. But the room was so dark that it was hard to tell if she was actually sleeping. She did keep moving her legs here and there, so at the most it was just for a few minutes, well maybe more like seconds at a time, but we think maybe she did for little bits like that. Hope says that she did not sleep at all, and was only lying there doing her "thinking time." But maybe she dozed off without realizing it for a 10-20 seconds here and there. The technician seemed to be happy with it. So we will see what the doctor gets from the EEG test readings, but I'm confident that it was much more informative than past tests, FOR SURE!!!
So overall, a HUGE PRAISE for all God's gracious answers to your prayers, dear ones!
The doctor appointment that followed the EEG was with Hope's newest addition to the doctor list, a gynecologist named Dr. Brain. She, along with her nurse and resident, were wonderful! The nurse was actually on of our past Unit 4 nurses and remembered Hope right away! Fun to see her again after so long! After an extensive history and discussion of options, the doctor was not convinced that Hope's seizures are connected to her menstrual cycle, but felt it was worth a try to see if hormone management would have an positive effect. We left with a prescription, but we have a phone message left with Hope's neurology nurse to discuss whether we should something new yet, or wait another month to see how the Trileptal increase continues to impact Hope's seizures. Also she has another new doctor appointment with a doctor who sees children with epilepsy. So he may have some suggestions for a different treatment. We want to keep the water "clear" so to speak, by only doing one thing at a time to make sure that we know what's doing what!
Hope was a little uncomfortable at the new doctor appointment, but again, God's grace covered her and she did a lot of her own answering of questions, and even shared some of her own stories and thoughts. My favorite was when she asked her own questions about what the doctor was saying. . . good questions that I would have asked otherwise! So incredible to see our girlie growing up and maturing, when 4 years ago we had no idea what the future held for her. We still don't know what the future holds for her, but God does! He has been so faithful to her, and I can rest in that, living each day and experiencing the joy of seeing His hand evident on her life! As well, the doctor and her staff were terrific in making Hope feel more comfortable! So thankful for these dear medical staff at the Alberta Children's Hospital who not only practice with expertise but with concern for the child's comfort and ease!
So, I am waiting to hear back from the neurology nurse, and we'll make a decision from there. As much as we trust these doctors, I can tell you that new drugs always feel scary for us! Hope has had so many bad reactions and side effects in the past, that it is hard to forget. Plus, we want to limit what drugs she takes and so our goal is always to know what's doing what, so we can best manage her health issues with the least amount of chemicals! I feel like her little body has had enough chemicals to be enough for a lifetime! This is yet another thing that I daily must submit to the Lord and His leading, as well as faithfulness, remembering how much He has already freed her from!
Well, that's my "quick" update . . . ha! Why do I ever bother even saying that, eh! Thank you for caring and asking about our girlie, and especially for praying for her! She was so blessed by the many messages she received yesterday of people praying for and encouraging her! And it sure blesses her parents hearts to see her experience the goodness and grace of God through each one of you!!! You are so loved, dear ones!!!
P.S. . . Just a quick update as of 4:30 pm this afternoon. . . Hope's speech started becoming very slow and slurred. It has become worse to the point she can barely speak and is now also having big eye "jerks." This is highly indicative that she will have a seizure. We have moved her where we can keep a constant eye on her. We so covet your prayers for her! Thank you dear ones!!!
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