Hello dear ones! I'm finally getting a chance to sit down and let you know what the doctor ordered!!!
Well, I have to start this post update with a bit of a story. . . yes, I do love a good story! This however did not "feel" like a good story when we were going through it, but I remember saying at one point in the morning that it would be one to look back and laugh at . . . at some point . . . well I think this post is a great opportunity to be, "some point!" Mostly because God is gracious and has the amazing ability to turn lemons into lemonade. . . and this is definitely a lemons into lemonade story!!! He is so faithful and I desire to continue to grow in my heart discipline to trust Him "right away, all the way, and with a happy heart!!!" (This is a definition for obedience that we've been teaching the girls for many many years that I learned long ago from reading the book, "Don't Make Me Count to Three" by Ginger Plowman).
So the story begins yesterday, Tuesday morning, around 8:00 am as our family was all headed out the door to load into the wheelchair van and make our way to the girl's school. Gabi was super excited to have Trev and I watch her drama performance in her class' chapel presentation. Trev and Gabs were attaching all the tie downs to Hope's wheelchair as I went to crawl up into the van, and as I did . . . R-I-I-I-P!!! Yep, I ripped the leg of my jeans! I told the family I was so sorry but I had to change, and ran back into the house to do so. I returned to a very frustrated poor hubby . . . the van side door opposite the ramp side (so the door Hope sits right next to) would not close completely. I joined him in the search for what was wrong and tried to be helpful, but didn't have much to offer in the area of mechanics, even door mechanics! After checking every possible problem area we could think of. . . several times over! . . . now TWO very frustrated and stressed parents were trying to figure out what to do. We did try driving as taking the vehicle out of park will lock the side doors, however, a couple minutes down the road (thankfully the residential road and not the highway!), the door slid open, and left poor Hope freezing and terrified, as we turned around and headed back home. Poor Trev was trying his best to reach behind and hold the door from sliding all the way open, while also driving us back home! Yikes . . . we would make the greatest reality TV show for all the crazy moments we have in our household! I can only imagine the sight of our comedy of errors!!!
The time was ticking by and it was now very close to 8:20 am and if we did not leave immediately, Gabs would be late for her chapel start. Hope had a room booked for 10 am to take her Science midterm test, and so we felt it was best for me to just go ahead and take Gabs, stay and watch her performance, and then rush back to try to figure out how to get Hope to school . . . or maybe Trev would have figured out how to solve the door problem by then . . . maybe even in time to catch Gabi's performance?!?!
The drive to the school with Gabs was stressful as I was trying to get her there on time, while trying NOT to be too "heavy-footed," and there were high winds and snow drifts on the road. We chatted about the frustrating events of the morning thus far, and I was so blessed and challenged by her sweet comment that we could trust God because He was over everything! Amen, little girl!!! She prayed for our morning, and our hearts! How I love the gift of our Gabi girl!!! I was starting to de-stress until I realized that I didn't have a way to tape Gabi's performance so her daddy could see it later. Oh I was soooo bummed! More for Gabi as she just loves for us to see her performances, and in the craziness of the last 4 years of Hope's health problems, we are striving to make sure that Gabs gets some needed attention from her mama and papa, now and then. She had a great attitude, but that really only made me more disappointed . . . isn't it so humbling and wretched how quickly the notorious phrase creeps into our hearts. . . "It's not fair, Lord . . . why THIS morning?!?!"
It truly breaks my heart to know and admit that after a couple weeks of watching Hope suffer with seizures and being helpless to do much other than comfort her, I can trust the Lord explicitly with that "BIG stuff!" But when it comes to the "LITTLE stuff," I stress out, pout, whine, complain, get angry and frustrated, and plain out, SIN!!! Now when you're going through those frustrating circumstances, they don't FEEL "little," do they!?!? They feel monstrous! But the reality, the pull back and see it from an eternal godly perspective, is the big stuff (like Hope's health) reminds me how out of control I am, and so I depend on the only One I know IS in control. . . God! But the little stuff . . . I act like I'm in control and get my nose outta shape when things don't go the way I think they should, and then have the nerve to think or act like God has done me wrong! Just . . . plain . . . ugly, when it come down to it, isn't it!!!
Having a child in a wheelchair presents A LOT of opportunities for things to go wrong . . . and we've experienced that many many times, I will admit. How I desire to see those frustrating circumstances as OPPORTUNITIES to glorify God, in the midst of suffering or uncertainty or minor frustrating circumstances (non life threatening should pretty much always define minor, and for believers, even death has no hold or fear over us . . . eh!), there is . . . an OPPORTUNITY to have a peace that passes understanding (Philippians 4:6-7), an OPPORTUNITY to humble myself, cast my cares upon Him, knowing that He cares for me (1 Peter 5:6-7), an OPPORTUNITY to trust Him even when I don't understand (Proverbs 3:5-6), an OPPORTUNITY to be precious in the sight of God with a gentle and quiet spirit that trusts fully in the Lord (1 Peter 3:4), an OPPORTUNITY to suffer a little for the sake of my Saviour who suffered a lot for me (Romans 5:1-11), and many more OPPORTUNITIES to turn lemons into lemonade, by the enabling grace of God to transform this sinner's heart, all to His glory!
Okay, so this is where I take great joy in finishing the story . . . a repentant, forgiven, and changed heart . . . it's a beautiful thing, isn't it . . . it's such an awesome reminder that the amazing news of the gospel is for me, EVERY DAY!!! I had the blessing of watching our sweet Gabi perform. I had the blessing of a sweet sister-in-Christ, after hearing a short recap of our morning and my resulting troubled heart, challenge me by saying, "We know He's in control! Maybe God was making you miss being in an accident this morning!" (Knowing Gabs had already challenged me with this truth on the way to school. . . I "kinda" sense that God was trying to get my attention and teach me something . . . ugh to what a slow learner I can be at times!) I had the blessing of another sweet sister-in-Christ that knows me well, Hope's EA, as I let her know why Hope wasn't at school yet, text me words of encouragement and humor, including a reminder to breathe along with a counting system for those calm self-controlled breaths! SMILE . . . SO love her . . . what a gift, she is!!! I had the blessing of kissing my little Gabi goodbye after telling her what a great job she did, AND I was even able to video a portion of her performance before my phone was too full to continue. I had the blessing, while rushing back home, of an offer from Hope's EA to just give Hope her Science midterm at home, to save us the work of trying to figure out how to get her to the school! I had the blessing of arriving home to find a dear friend from our Harvest church already there trying to help Trev figure out the problem with the door! Are you sensing a theme here?!!? I am blessed! We are blessed! In the midst of frustrating circumstances, we are blessed simply to know and belong to Jesus!!! Got a formula for ya. . . eyes off the circumstances + eyes on to the One over the circumstances = JOY and BLESSING! Also we have the joy and blessing of being surrounded by so many fantastic people who are so patient and gracious with us and our constant chaos, in fact they offer to come and join us in it! WOW!
Okay so let me skip ahead a couple hours now . . . Hope has finished her midterm, and is resting in bed (sorry, no word on her mark yet, but I think she rocked it from the little I heard, and it was a hard test!) . . . Trev has given up on fixing the van door, and we have decided to disassemble Hope's wheelchair and try to fit it into the car trunk (it barely fit but Trev did finally manage it after some diligent effort . . . love our awesome daddio!!!) . . . we are now rushing out the door and using our little car to get Hope to the hospital for her appointment with her neurologist! None of us have eaten yet, including our poor Hopey, but I grabbed the lunch that she had planned to take to school on our way out the door, and a bag of chips . . . how health flies out the window in the face of "outta time, and starving hungry hubby!"
And this brings us to Hope's neurologist appointment . . . by the way, kudos to you for sticking it out to make it through all the above to get to the answer to the question at the beginning . . . what you've all been waiting for . . . "What are the Doctor's orders?" Our busy neurologist was super gracious with us as we showed up 10 mins late for Hope's appointment. We arrived on time to the hospital, but it took us so long to put the wheelchair back together, and we forgot our handicap placard in the van, so we had to park in a regular parking spot . . . which by the way, in a busy busy hospital lot, we again were blessed to find a spot that was right next to an empty handicap spot and gave us enough room to lift Hope out of the car and get her into her reassembled wheelchair . . . again, thank You, gracious God!
Hope's neurologist is so great about including, even focusing, on Hope in our appointments (rather than speaking over or about her). . . I LOVE this! After a short conversation with the neurologist, Hope decided she would take a break and asked mom and dad to do the talking for her. We then proceeded to give information about the seizures Hope has been having, ask the questions we had, share our concerns, and answer the doctor's questions. We were so thankful for how she not only listened, but was on the same page as us in her concerns for Hope, and approach to moving carefully in treatment. This hugely made her decision of where to start, sit better with us, even though it wasn't exactly what we were hoping for, for sure. She decided that from all the clinical evidence, Hope was most likely experiencing increased seizure activity as a result of puberty and perhaps even a growing tolerance of her seizure medication. So she ordered for her current seizure medication to be increased again significantly, including higher doses morning and night, as well as an extra dose in the afternoon. She based her decision also on the timing of Hope's seizures all being in the late afternoon and evening. She feels that Hope is probably having a lot more seizure activity than we are even seeing, and wants to get on top of this as quickly as we can.
However, we were so thankful that her approach was in line to our long-time approach with our puzzling sensitive girlie, to make ONE CHANGE AT A TIME! So the only thing we are doing immediately is the three step increase in her seizure medication. We discussed other options of where we can go from here if this is not successful in controlling her seizures or if Hope has adverse side effects from the increased medication dosing. We were also thankful for her desire to back up her clinical judgement, with some objective information. She will be sending Hope for an MRI of her brain (she hasn't had one since May of 2012) to check for heavily scarred areas or anything else concerning or helpful in determining treatment. She reassured Hope that she does not expect any differences in this MRI or results that would change her clinical assessment, but just wanted to be thorough. And a fun note . . . Hope remembered and told her doctor that her last MRI (of her spine almost 2 years ago) was done without general anesthetic, while her parents had forgotten about that! Ha! I'm wondering who actually needs the MRI, because I feel like I'm the one losing my mind! ; )
She is also going to have Hope complete two kinds of EEG monitoring (brain activity). One will be just a regular EEG, and the other will be an overnight test. We brought up her history of severe sleep apnea after her brain injury, and whether that could be resurfacing, so she wants to use this overnight test to check on her breathing while asleep, as well.
Just a few other decisions made at the appointment . . . Hope is not going to be referred to the vertigo clinic at this time (the neurologist felt it was too invasive and unpleasant for her and not worth it). Hope has been referred to a gynecologist for the connection of her seizures to the week of her menstrual cycle, and they actually called to set the appointment while we were with the neurologist. So that appointment will be towards the end of February, which will give us time to see how this first change will affect Hope. As well, there is a doctor at the Alberta Children's Hospital that sees only children with epilepsy. He would like to see Hope. So Hope will be receiving an appointment with him at some point, but he is pretty booked up, so it may take a while. However, we were given instructions to call right away if Hope continues to have serious seizures, and they will fast track her appointment with him. The neurologist, who we've know since just a few weeks after Hope's brain injury, joked that Hope is continuing to add to her LONG list of doctors! She also gave us new parameters for using the break through seizure medication (Ativan). . . basically we are to give it sooner now, and call them whenever we need to use it (after two seizures, we are to give it, and also immediately if her seizures affect her breathing at all).
So those are the doctor's orders for now! Hungry Hope got to chow down on her yummy left over Greek salad while we waited for all the new prescriptions and directions. We scooted off as quick as we could to go pick up our Gabi from school. We were again blessed by more precious people, dear friends from our church, that also work at the girls' school, had kept Gabi with them in the office after school waiting for us to get there. She was happily playing Bejeweled on a giant projector screen when Trev got to her . . . what a blessed girlie to be so lavishly entertained while she waited! We then headed straight to Olds, to be yet again blessed to have a delicious home-cooked supper and long overdue visit with Trev's parents . . . we haven't seen them since before Christmas. This is a couple pictures of the girls on the drive there . . .
As I took these pictures over my shoulder, it dawned on me how a very frustrating morning had ended with a sweet time for our family . . . a time that wouldn't have happened without all those "lemons" earlier that morning! Sobering on this side of the circumstances, eh! By God's grace, I will grow to have that sweet release from the burdens of this world and the sour taste of the "lemon" circumstances, all the sooner, and instead have the full and abundant enjoyment of God's most fantastic "lemonade!" "Right away, all the way, and with a happy heart!"
Okay, that covers Tuesday! Would you like one more little (I promise) update on today, Wednesday? If you're outta time, feel free to say adios, and catch ya later, but if you have a couple more minutes . . .
This morning, a mechanically talented dear friend of many years, also from our Harvest Calgary church family, generously gave of his time to come by our house and take a look at the van door. It is a wiring problem and so a new wire will need to be ordered and replaced to fix the door to its original working condition. However, Mike was able to disengage/pull the wire that was seized and preventing the door from closing. So now the door, although not powered anymore, can at least be closed manually! Yeah! The van is drive-able again, just in time for me to get Hope to her dentist appointment tomorrow morning!!! A huge praise! We can also wait now and replace the wire when it works and we can afford it. Yet another huge blessing in all of this . . . Mike saved us a $1600.00 fix at a shop!
Finally, a prayer request . . . we started Hope's first step of the increase of her seizure medication today. The neurologist is first increasing her morning dose to try to get a boost in the medication levels in her blood before she tends to have the seizures later in the day. However about 1 hour after her increased morning dose, Hope told us she was feeling very dizzy. This continued all morning. Throughout the day we noticed she was not feeling well, flushed and warm to touch, but Hope expressed feeling cold. She also had several bouts of vertigo, all while lying in her bed, right up until 11:20 pm this evening. She also felt her eyes sticking again, and even described a burning feeling in her eyes. And her speech was definitely slower today, a bit slurred and stuttered. But, she didn't have a full seizure. So I am keeping a detailed health journal, including times when the med is given and when symptoms are reported, and for how long. Prayerfully this will be helpful for the neurologist in her clinical assessment and treatment decisions. And prayerfully, Hope will wake feeling better tomorrow morning.
Okay that's it for real, this time! Thank you for sticking with me all the way to the end of yet another long post! You all amaze me that you are still burdened for our girlie, and our family, by sacrificing your time to read this blog, and pray for our Hope! Thank you for your compassion and your faithfulness! You are truly loved, dear ones!!!