October 27, 2016 -- Update on Hope's Seizure Saga

Well, I promised an update on Hope's seizures and here we are another 2 months down the road . . . where does the time go?!?!  So I have entitled this an update on the seizure saga, and SAGA it is!  It certainly does seem to go on and on and on . . . hmmm, kinda like me!  Ha ha!  But one thing is certain, our God remains good, able, and faithful, even as the storms continue, eh!  That is always the biggest "saga" of Hope's story indeed!!!  

So let me first start with praise to whom it is due . . . our God, who has showered our girlie with so many graces in her short life already. . . the seizure saga is certainly not void of this ever present grace in her life!  Just a quick recap . . . Hope's seizures worsened last October 2015, with the worst months being between January - May 2016, as the seizures built in frequency, unpredictability, and severity.  So the first display of God's grace is that her seizure picture has definitely improved in the frequency of seizures!  Rather than weekly seizures, she is currently down to about 1-2 days of seizures per month.  Thank you Lord!

Another huge praise is regarding the frequency of the unwell symptoms that often surround seizures.  This list of symptoms is long, but some of the most common are myoclonic (involuntary) jerks, headaches, losing her ability to speak, eye jerks, dizziness, vertigo, nausea, insomnia, extreme temperature fluctuations, facial freezing, pain, as well as light and noise sensitivity.  Hope's unwell pre-seizure symptoms had progressed to a place in Jan-May, that she would either miss full days of school or at least come home early on 1-3 days per week.  It was incredibly hard for her to keep up with school work, not to mention it was so hard to see her suffer so often.  This has improved greatly!  She has missed very little school due to feeling unwell and having pre-seizure symptoms.  Some of those days have occurred on weekends in the past 5 months (June-Oct), but in general, she is feeling more well overall.  Praising God for His mercy in this!

We have started a few new approaches to stress, rest, balance, etc. in Hope's life.  Increasing available sleep time, as well as quiet time where Hope's brain and mind as well as her body can rest has been helpful.  We are trying to find more balance in her schedule of church and social activities making Sunday church and Thurs night youth group the priority and only adding in what she can handle around that.  The same approach has been helpful with school, where we are focusing on the core subjects, and options get less attention depending on her health that day or week.  We've also encouraged her to adjust her expectations for marks and the amount of studying that we do. . . in the past, we have done hours of studying with her for a test, and it was necessary for her retention but then she would get really high marks. Obviously this was not a bad thing . . . her favorite mark to remember is the 120% she got on a Social test because of getting every question correct as well as all the bonuses!  But again, we are striving for balance, and now we just consider the regular assignments and a quick review of a study guide to be sufficient studying for tests.  Her marks have gone down slightly (which she really doesn't like), but it is worth it for her mind and body to be less stressed and overwhelmed!  It still blows us away how she continues to be able to retain and learn with less and less hours of time spent studying and reviewing material!  Again, God's continued grace and faithfulness in her life is always SO evident!!!  He meets us at every corner!!!

Again, overall, Hope can handle and cope with so much more than she could in those early years, but with her continued progress, it can be tempting for Hope's very driven parents to overwhelm her with just more and more!  Recognizing that impact on her health frees us to make more wise decisions with planning, scheduling, and flexing as needed.  It remains a continual prayer request for Trevor and I to have daily wisdom and discernment in this area!

So, I actually am writing this post as I sit at her bedside watching over her.  She came home early from school this morning with pre-seizure symptoms.  She had a seizure last night, but after a good night's sleep, we were hoping for a good day today . . . still struggling though but at least not another seizure yet.  Her pre-seizure symptoms have started to exhibit much earlier in the day, often soon after waking, and this is new.  They used to come in the afternoon or evening.  This is concerning and scary for us as her seizures can start sooner in the day and then build in severity.  She only had one day of seizures in September, but she had 6 seizures that day . . . most of them were close to the parameter for administering her rescue med (3 minutes), and most of them affected her ability to breathe properly.  That is the most seizures she's had in one day, and are longer than her usual seizures.

As a result of these new concerns, Trev and I decided to go ahead and start a new seizure med.  We started her on a very low dose back in August, and have needed to make 3 increases in the dosage since.  We think that we should make a fourth increase with her evening dose tonight as a result of the last 24 hours.  This new med is in addition to the one that she's been on for nearly 4 years.  Hope had some bad side effects back in August after starting this new drug and we noticed some worsening of side effects after each increase of this new medication.  However, it does seem like her body is getting used to it very slowly as the side effects have diminished over time and only show up for a few days after an increase in dosage.  Our desire is for her to come off of the old seizure medication, to try to lessen side effects.  The doctor would like us to wait though, and said that until she is seizure free with tolerable or no side effects, that he feels it would be dangerous to decrease any medication.

Hope will see her pediatric neurologist again on November 18th.  My understanding from our last visit with him in June, is that they do not plan on doing any further seizure monitoring or testing (he cancelled the one that was ordered 4 weeks after Hope's hospital stay in May).  I'm guessing that he believes her seizures are coming from various parts of the brain and thus surgery is not an option.  As a result then,understanding more of why/where these seizures are originating from and what the pre-seizure symptoms are (since they are not full seizures), is not his concern anymore.  Rather I think he is focused on seeing if a high enough dose of seizure medication will be tolerated by her body and at the same time stop seizures.  I will be honest to say that I'm conflicted about this approach.  Drugs and Hope don't go together very well . . . and her long history right back to day one of her respiratory/cardiac arrest has attested to this over and over again.  And yet, I can't say that seizures are any less frightening.  So the conundrum and the need to continue to seek your precious prayers on her behalf, as well as for the doctor's and her parents' wisdom in the decisions made each step of the way.  Another prayer request would be for Hope's heart of fear . . . seizures really scare her now!  After some really bad ones, and apparently she is remembering them better, and is very aware of being limited in her ability to breathe.  She also has had some seizures that have affected her hearing, and even left a residual hearing loss afterwards.  This was extremely upsetting for Hope, understandably so.  She has had occasional blips of either lost or muffled hearing since that big seizure at the end of May where she completely lost her hearing for a short time during and following the seizure.  So as much as I totally understand her fear, we are striving to encourage her to continue to lean into her Saviour and trust Him, even through some of these new and disconcerting symptoms.

Even right now, I just adjusted her comforter to cover her and tuck her in right up to her chin.  She keeps saying she feels freezing cold, even though her face is beet-red and hot to touch . . . almost like a fever, but her internal temperature is normal with a thermometer.  So strange!  She is keeping her eyes closed today, which is usually quite hard for her to do, but she said that it feels like it is helping to hold off seizures.  Trev and I talked that it makes sense that with such substantial brain damage in her occipital lobe (main part of our brain that controls vision), limiting visual stimuli would help to not tire/overwhelm her brain as much . . . probably why noise and light bother her when she's feeling unwell.  With her cortical visual impairment, Hope's eyes see everything but somewhere along the transmission to her occipital lobe, those messages get lost or are not understood or computed by her brain.  So if her eyes are still seeing everything and trying to send the messages, it makes sense as to why open eyes (vision) would be overwhelming when her brain works so hard to try to see and with little success.  Some of you might even remember that light and "looking at something" was actually painful and extremely unpleasant for Hope in the early days.  Do you remember her turning her head to the side and squeezing her eyes closed tightly?  We have a lot of pictures of her like that from back then because she hated the flash of the camera.  Anyways, that reminds me that I also owe you an update on her beautiful big eyeballs!!!  : )  Next time!

Thank you so very much, dear ones, for your continued prayers and love for our girlie!  We just returned from Harvest University in Toronto, as well as a car trip down to Virginia.  We were able to take the girls this year as Hope now qualifies for a FREE companion flight thanks to her doctors telling us about the program and helping us complete all the paperwork!  The program only works for flights in Canada, but what a blessing!  The girls were able to meet some very special new friends on this trip . . . the Kim family and the Ballantyne family!  Both families have precious girls that have prayed for Hope for a very long time even though they had never met.  What an incredibly sweet time for Hope and Gabs to meet such faithful young prayer warriors, burdened to pray for someone they had never met . . . and NOW they are also dear and treasured friends!!!  We also were able to connect with a couple that used to be at Harvest Calgary, and their two little sweeties; he was our first worship director, and they are very dear to us!  God's family is so wonderful and such an incredible gift.  I pray that each one of you are able to be plugged into your local church, to both serve and be served by the beautiful body of Christ . . . may our love for fellow believers be such that speaks boldly and clearly the love of our precious Saviour to a lost and hurting world in need of Him!!!

You ARE loved, dear ones!!! 

Visiting the Kim family in Virginia!!!  We met their two sweet girls for the first time, who are close in age to Hope and Gabs.  It was so fun to hang out with such wonderful friends, even though it's been so many years since our last visit!  Sam was Trev's best man at our wedding about 15 1/2 years ago, and then we attended their wedding a couple months later as Trev was a groomsman for Sam!  They spoiled us with delicious food, kind gifts, and sweet fellowship!  As we were waving goodbye and pulling out of the driveway, Hope said, "They are so nice, mom!  I want to come back and stay with them longer next time!"  We can't wait until next time, Kim family!!!

Hope and Gabi with the Ballantyne Girls . . . fellow Harvest PK's (pastor's kids)!!!  They hung out at the Harvest U conference and had such terrific fun.  Not to mention, it was beyond cool that God blessed us to find out we were staying in the hotel room right next to them!  Hope and Gabi have some very special new friends all the way across the country in Ontario now!  Oh, and also pretty cool . . . that red Harvest Bible Fellowship hoodie that Hope is wearing . . . while standing outside in the lunch line, a Harvest Oakville staff member saw Hope and was concerned about her being cold . . . he ran all the way back inside the building and returned with this hoodie, taking off the tag, and telling Hope it was hers to keep!  She was tickled and wore it the rest of the day!  Thank you again, Mr. Ryan, for showing compassion and kindness!!!  We are so thankful for our Harvest church family around the world!!!

 

Hanging out with sweet Nevy and Libby!!!  Nevy was born when Josh and Sam lived in Calgary and she is named after Hope!  How special!  It was so great to see their dear family again!!!  We love them lots!!!

Thought you would enjoy these last few pictures from our plane trip home.  It is such a great thing to remember how far Hope has come from those early years and how different flying with her was back then!  God is so good!  Here are some more "FIRSTS!" for Hope . . . small things are actually really BIG things in the world of brain injury recovery . . . especially when we remember the really BIG God behind every single step forward! 
 

I was standing and waiting for Trev while he checked on Hope's wheelchair, when I heard from behind me, "Hey mom, look at me!"  You can imagine my surprise and glee when I turned to see this beautiful smiling face, NOT sitting behind me, but STANDING behind me!  She used the seat in front of her to stand herself up and was as pleased as a pickle with her achievement!!!

I had to get a better shot of her backpack on her back.  She insisted on wearing it the way she used to, before her brain injury.  This is the first time Hope has worn her school backpack on her back for almost 5 years now!!! 

So, I need to post an update on Hope's walking efforts.  She has a long way to go, however Miss Muffet walks onto and off the plane now while holding her daddy's hands.  It is a lot of work for her, but does that smile on her face say it all?!?!

And again, I had to grab a picture of the backpack on our delighted girlie!  The airline staff were so kind to be patient with these crazy Peacocks snapping pictures of what seems like silly things, but if they only knew all that the last 4 1/2 years has held for this miracle girl . . . not so little or silly at all, eh!  I'm sure many of you remember early days and will be blessed to see how far our faithful God continues to bring our sweet Hope!