It's been one of those days . . . the ones where you eventually just wish it would end and you could start fresh tomorrow, or hit a rewind button and have a "do-over!" Either way, the day doesn't go as planned . . . I'm sure everyone relates to those days, eh! In the big picture, we've had much harder days than today, but today is just that . . .TODAY! It's the day that we're in now, and the troubles of today feel big, frustrating, disappointing, and outside of our understanding!
I had not even had the chance to tell you that in response to Hope's newest doctor's desire to deal with her seizures urgently, we got two calls last week from the hospital. The first was to schedule Hope's MRI of her brain for Tuesday, April 12th. The second was to schedule her long term monitoring (EEG and video) in hospital for 3-5 days . . . they had made an opening for her next week (April 5th)! We were torn at first from the news about dates of the long term monitoring (LTM) . . . disappointed because the girls are on their last week of spring break that week and we had several plans and appointments in place that needed to now be rescheduled. However, we were also thankful for how quickly they were getting her in, and that it meant that Hope would not miss a significant amount of school and fall behind on school work. So we went through all the work of cancelling plans, rescheduling appointments, and getting our heads around being in the hospital next week. I had even started prepping meals in advance for next week, so we could avoid the more expensive alternative of eating out.
One thing that we were starting to wonder about was if they were going to catch any seizure activity next week, as Hope has not had a seizure for 3 weeks now!!! Praising the Lord for His grace in that! But although no seizures, Hope has had several days of feeling unwell over the last 3 weeks. . . unwell symptoms that they think could be sub-clinical seizure activity, which means that it's seizure activity you don't necessarily know is there. She has missed a couple days of school and several half days as result of not feeling well. Her unwell symptoms vary but include "wonky eyes" as she calls it (usually means that they have difficulty focusing and cause dizziness, blurry vision, and double vision), sensitivity to noise, leading to really bad headaches, drowsiness yet insomnia (inability to fall asleep), and some reports of what she calls her "face freezing." She said that the "face freezing" makes her feel at risk of having a seizure that affects her ability to speak and breath, and makes her fearful. She will usually talk more to us when she is having these, so that we will notice if she stops being able to talk. Smart girlie!!! : ) Knowing the LTM was coming up soon was a comfort! To know whether all these unwell symptoms are actually sub-clinical seizure activity would be so helpful to knowing how best to treat our girlie. Missing so much school puts her behind and under more pressure. We are so thankful for the opportunity to get to the bottom of some of Hope's puzzling symptoms!
We are away for a few days this week, visiting Trevor's parents. I noticed yesterday that the hospital had been trying to call us, and so I tried to return their call but was only able to leave a message. So back to today . . . the hospital called this morning and said that they needed to reschedule Hope's LTM hospital admission next week due to another child scheduled for the OR needing to take her spot. At first they wanted to reschedule for the following week, but Trevor is away that week and I'm on my own with the girls. We were discussing how we could make this work, although Trevor was not wanting to be away for the test. We also reminded the hospital that Hope has already been booked for her brain MRI that week, as well. We discussed the logistics of connecting Hope to all the EEG monitoring wires, only to remove them for her to have the brain MRI, and then by the time she is done the MRI, all the EEG clinic technicians will be gone for the day and unable to reconnect her to the wires. So without attempting to reschedule the brain MRI, which would potentially take months (it took 3 months for this one to be scheduled), that week was not possible. So Hope has been rescheduled for her LTM to May 3rd. This date will potentially conflict with Hope's Jr High Spring Formal, which she was looking forward to attending, especially after last year didn't go so well . . . she was hoping to try again and improve upon last year's experience. There is a good chance that she will be released from the hospital on the Friday morning in time for the spring formal later that evening . . . in fact the lady at the hospital said that 9 out of 10 kids are released on the Friday morning. Only 1 out of 10 kids will need to stay for the weekend as well, due to needing to gather more information. Let's just say that the skeptic in me, or realist as I like to call it (ha ha!), is used to Hope being on the "1 out of 10" side of the fence! So we will try to prepare Hope and our hearts/minds for this possibility, while still staying hopeful and prayerful that maybe Hope would be able to complete the test by Friday.
After all the work of rescheduling our plans and appointments, as well as preparing meals in advance, it was hard to be told that it's off again, and we'll need to do that with a new week all over again, as well as deal with all the missed school for Hope. And probably even harder is the effort of dealing with adjusting your head and heart around another shift in the circumstances. Hope really dislikes being in the hospital and getting yourself and her mentally prepared for that only to then find out it's being postponed, just plain bites! Your initial response feels ripped off, that yet again we are jerked to and fro by the circumstances of life. Trev is such a blessing in how much he shepherds our family to trust the Lord in His sovereignty over ALL circumstances, even the ones we don't expect or want! Adjusting our plans to God's plans . . . trusting Him to work and lead through unexpected and unwanted circumstances . . . Proverbs 3:5-6 "Trust in the Lord with all your heart, lean not on your own understanding. In all your ways acknowledge Him and He will direct your paths."
As I called the nurse for our new doctor to let her know that the LTM hospital admission was being postponed for another month, I told her that at least Hope has not had any seizures for the last 3 weeks, and that we could rest a little more easy with the wait for the testing. . . within the hour, Hope started having involuntary jerks and has slowly declined throughout the day. Her speech is pretty affected and she is having all the pre-seizure symptoms that she is known to have. She is afraid; we are concerned. She has had two small seizures in her hands. We are staying at her bedside watching her constantly as in the past couple months her seizures have taken away her ability to communicate with us and tell us what's going on.
As I was typing the last sentence, she called me for her first bigger seizure today . . . a jerking seizure that lasted for about 60 seconds. She is still recovering from the seizure with right arm weakness and numbness, as well as saying that she is having twitching sensations and facial freezing again. Her speech remains slurred and difficult still, as well. There's nothing like feeling like you "spoke too soon!" "Leaning not on your own understanding" is very difficult to do in the face of concern for your child's well being. I have to remind myself continually of the verse that we have on Hope's blog, Romans 15:13 "May the God of hope fill you with all joy and peace in believing, so that by the power of the Holy Spirit you may abound in hope." The God who created Hope and knows her most intimately, also loves her and holds her in His all-knowing, all-powerful hands, and He will do what He knows to be best for her according to Romans 8:28, "And we know that for those who love God all things work together for good, for those who are called according to His purpose." My job is to believe and hope in the God of hope that fills us with all joy and peace, and even enables us to abound in hope through the power of the Holy Spirit at work within us!
Today that feels really hard to do, cause I don't understand the timing of all this. Today Hope is hurting and disappointed . . . it's the last day at Grandma and Grandpa Peacock's and she just asked me why this had to happen on her last day of fun here, so she has to miss out on special time with them. Today we need to adjust our plans to God's plans . . . again. Today we must not lean on our own understanding and instead trust, believe, and hope in the God of hope, the God over our Hope! Today, and days like today, I'm the most thankful for our God who does not leave us to our own strength and understanding, but equips us for what we are called to walk through today by the power of the Holy Spirit at work in us . . . today, I have the grace for today! And tomorrow, I'll have the grace for tomorrow. And so on . . . as Matthew 6:33-34 says, "But seek first the kingdom of God and His righteousness, and all these things will be added to you. Therefore do not be anxious about tomorrow, for tomorrow will be anxious for itself. Sufficient for the day is its own trouble." How these words bring both wisdom and comfort for me. . . today! And I'll look forward to His mercies new every morning . . . tomorrow . . . the grace to walk tomorrow will be there tomorrow! Lamentations 3:22-23 "The steadfast love of the Lord never ceases; His mercies never come to an end; they are new every morning; great is your faithfulness."
As Hope lies here recovering from her seizure, she is blessing me with her sweet humor, even in the face of disappointment and not feeling well . . . she just told me that she wished she had a "Personal Health Companion" like Baymax . . . if you've seen the movie "Big Hero 6," then you'll know exactly what she's talking about! Then she asked her dad if now would be a good time to ask for a service dog! And now she's telling me that she does have a Personal Health Companion, in fact two of them . . . here's a video of her telling me who that could be . . .
A sweet friend shared this joke with me a few weeks ago. . .
Is that me or what?!?! I laugh at this and yet it truly pains me how many times I finally come into obedience to God and His plan, after being drug . . . as I wallow in my disappointment and lack of understanding . . . as though somehow His plan could ever possibly be less than BEST! As Trev put it bluntly earlier today, that's just plain arrogant and ugly! I love his honesty with me when I need it . . . well, more on this side of the needed heart change than when he first spoke them to me . . . ha ha! But on this side, it makes his love for me and heart to shepherd me in both truth and love, so very precious . . . he is so very precious to me!
Well, I oughta end this . . . thanks for being my journal . . . a place where I often come and share my heart, even the real struggles and ugly sin that resides there, as I turn to God's Word and His truth for the wisdom and help that I need to trust, believe, and hope in Him, adjusting my plans to His plans! My heart is in such a different place than I was earlier today, and talking it out with you, was part of how God does a changing work in me. Thanks for walking this journey with us! We so treasure each of you, and the blessing and encouragement of your continued prayers and concern! You are loved, dear ones!!!
P.S. One final addition before posting . . . Hope has had another seizure . . . another jerking type seizure that was about 2 minutes long. Her speech is still affected and so we're not sure if she's done for the night or still at risk of more seizures. We're staying at her side continually. We would be so thankful for your prayers as we make a couple decisions regarding medication . . . whether we should give her the rescue med or hope she'll settle for the night, as well as whether to start the new medication prescribed by Dr. Brain now that we will be waiting for another month for the LTM testing. We were trying to limit the number of new variables. Also, we have video taped all the pre/post seizure symptoms, as well as the two seizures that she has had today. We've never done this before, but now using the seizure tracker that we document everything on will also link to YouTube videos of her seizures so that the doctor can use all that information in his assessment/treatment of her seizures. Thank you again for your prayers, dear ones!