Sunday, February 24, 2013


Hello dear praying friends and family! I am going to try to give a overall update on our Hope that I have been trying to get to for a while. : ) It is long as there is always lots going on with Hope, up and down, so here goes:

--Hope's communication is SO much better! Thank you for your prayers for this specific area. . . God has truly answered in a miraculous way! Hope has not had any speech therapy for months and nothing different occurred, she just started talking and progressing dramatically in January. Where we used to understand about 25% of what Hope said, we now understand the majority of what Hope says. Exceptions would be only during her unwell bouts and after seizures her speech is limited and more garbled or difficult to understand. This is an awesome praise and has given Hope and Gabi more ability to interact, as well as allowed us to better understand puzzling areas and how to better care for her physically, emotionally and spiritually! SOOOOO EXCITING!!!

--Hope's internal Baclofen pump has continued to be decreased by Hope's neurologist. She was expected to need 1000 mcg/24 hrs to control her severity of dystonia last February. We were so thankful when they found that 800 mcg/24 hours was enough to control her dystonic storms. In September she started having some small decreases, after we asked them to, due to some symptoms we felt were showing side effects of too much muscle relaxant. All along we have been told that Hope will never be able to go without this Baclofen pump without life threatening consequences. I had the neuro surgeon back in Feb of 2012 look me in the eye squarely and say, "That will NEVER happen!" after I asked him what we would see if the pump needed to be decreased. Anyone want to guess where Hope is at right now??? : ) She is currently at 250 mcg/24 hrs, and the plan is to continue to decrease her pump as she is having no dystonia and the concern is that it may actually be causing some issues she is chronically struggling with. They have even come up with the plan that if she gets down to 100 mcg, then they will look at removing the Baclofen medication from the pump (because it would not longer be of any therapeutic value at that point) and replacing it with normal saline and run at the minimum pump rate of 12 mcg to keep the pump functional and patent. There is no explanation for Hope's improvement nor understanding of why. . . theories are being thought up to try to perhaps explain what this is. . . nothing short of a miracle!!! Brings to mind the verse, Ephesians 3:20-21. . . "Now to Him who is able to do far more abundantly beyond all that we ask or think, according to the power that works within us, to Him be the glory in the church and in Christ Jesus to all generations forever and ever. Amen!" Our God is GREAT in power!!!

Prayer Requests
--Hope's sight. Hope has been assessed and declared as legally blind back in October 2012. Her diagnosis is called cortical blindness, which can describe a wide range of partial to full blindness. Hope has told us that she can see light and she can see colors but she cannot see any shapes at all, including our faces when close and right in front of her. Hope does not track or follow with her eyes any visual stimuli, although she does seem to respond to movement right in front of her by fluttering her eyes. Hope's blindness is full to the point that they believe that she is not only not able to see, but she is also starting to dump her visual memories from the first 9 years of her life. If this continues, without other senses committing objects, places, people, etc. to memory in a different part of her brain, Hope will actually cease to even recognize the existence of these things. For example, in order for her to remember that a dog exists, she must hear it bark, smell it or touch it. . . if we solely rely on talking about it, we are only accessing her visual memory and she would thus forget that a dog even existed as her visual memory continues to disappear. So we have been adjusting our approach by encouraging her to hear things, smell them or touch them. We are realizing that these senses have become very heightened for Hope. . . she can tell what we are eating by the smell and sound of us eating it. It's amazing! She can hear the bath water running and knows about how long it takes for the amount that she wants in the tub. Trevor tried whispering something to me the other day to keep it a secret from Hope and Gabi who were sitting together. . . immediately after Trev whispered it to me, Hope said exactly what he had whispered out loud! Gabi laughed and said, "Thanks for telling me the secret, Hope!" : ) We are very thankful for the compensation of these other senses to help Hope engage and understand her surroundings, however, knowing our God is able, we want to continue to ask that He would also restore her sight! It would be a huge help to her and give her SO much more ability to interact, be more independent, and even use her hands more. Can you imagine trying to learn to gain control of your hand's coordination, for example to reach your mouth, when you can't see where they are. . . or to learn to stand or walk again when you can't see around you to help with balance and such? Sight would be a HUGE gain for Hope that would affect MANY areas of her recovery in a positive way!

--Hope's unwell bouts! We really don't know what to call these. . . this is what we use at home for lack of any explanation to what is going on. We have shared about these before, but I'll quickly review. . . since August, Hope has been struggling through these. Symptoms during these unwell bouts include: insomnia, temperature regulation issues, severely decreased eating/drinking, emotional issues, mood swings, communication issues, elimination issues, neck pain, increased propensity for myoclonic jerks and seizures. So far, there is no understanding of what causes this same grouping of symptoms every time. These bouts can be as short as one evening and have lasted as long as 10 days. The only treatment Hope has had is symptom management and so the bouts continue to plague her. . . and recently have gotten worse. Please pray for Alan and Cindy Warnock, close dear friends, who are looking into the Barrow Institute in Phoenix, AZ. It is a facility specializing in neurosciences and the Warnocks are going to see if they feel that they may be able to help or shed light on the cause and treatment of the cause of these unwell bouts. These bouts can be extremely debilitating as well as unpleasant for Hope, limiting her ability to go to school, interact with people, express her needs, and obviously the concern of no eating/drinking/sleeping is huge.

--Hope's seizure control! Hope continues to have seizures. She started a new seizure medication in December. We have made several increases in this med and will likely continue as she continues to have seizures. She is past the mid point of dosing and now will require some blood monitoring. If she continues to have seizures, eventually they will have to look into a different medication. The good news about this medication is that it "seems" to have little side effects. . . although we are starting to question that and wonder if the increasingly higher doses are linked to her worsening unwell bouts. Hope's seizures have NEVER been able to be captured on EEG monitoring, so there is no information as to where they are originating from in the brain. We know that they affect either or both sides of the brain, which indicates more serious seizures. Hope is most often aware throughout her seizures and they are very painful and distressing to her. She will cry and call for help and ask why you're not helping her when it doesn't stop. They can last for anywhere from 45 seconds to 4 mins long. Hope has also had 2 seizures in the last 2 months where her breathing was affected and were considered life threatening. These lasted for about 8 minutes. We now have an emergency medication to administer to her when needed. After any of these seizures, Hope displays stroke-like symptoms. . . one-sided weakness, numbness/tingling in the mouth and facial area, one-sided facial droop to the mouth, garbled unclear speech, and exhaustion. These symptoms usually last about 30 mins, sometimes a little longer. Hope is scheduled to have a repeat MRI of her brain done in May.

--Hope's transition back to Bearspaw Christian School (BCS)! This is also a huge praise! Hope graduated from the Gordon Townsend Rehab school at the hospital on Feb 13th! She is now attending BCS as a part time student. Her time there will continue to increase as she tolerates. She has an Educational Aide that is with Hope at all times and she is absolutely precious! Hope loves her and she has been an amazing fit for Hope, the school and our family! God is over every detail and always shows Himself faithful and full of grace! BCS has not had a special needs program before and so this is new to them, however, the Independent School Liason following Hope's case said that he felt BCS was the BEST place for Hope and that BCS would do an amazing job in figuring all the logistics out. And they HAVE!!! There are many more things to continue to tweak, especially as Hope is still changing so much, but the love and heart that this wonderful school has for our sweet girls (both of them!) is AMAZING and yet another testament of God's grace and care for our family! So please praise the Lord along with us as we celebrate this milestone and the provision God has made for Hope's continued schooling. It is so wonderful having BOTH our girls in the SAME school again!!! Hope is "HOME" again there! And please also pray for Hope's adjustment in this transition. Transition is always harder on someone with brain injury. Even though Hope is generally happy and much more engaged in her time at BCS, she is quite nervous before going each day and expresses it in saying she doesn't want to go. Hope will do about 7 more sessions of outpatient physical and occupational therapy at the hospital and then will be done with all therapy there. This was quite distressing to us a few months ago in considering, but we have come to a place of letting it go and trusting the Lord with what is best for Hope, including Hope's therapy. She will be seen on more of a consulting basis once a week by some therapies visiting BCS, so we are praying for these new people as they begin developing relationships with Hope. Changing therapists for a brain injured person is very stressful and has caused set backs for Hope in the past, which is common. However, we are praying that instead the Lord will use a fresh perspective and approach to be a new catalyst in her motivation to particpate in therapy. Her therapy now will be more of a "life is therapy" approach, as she attends school and at home. Trev and I need prayer and wisdom on how best to be maximizing her opportunities for this, always remembering that God is the ultimate THERAPIST for Hope, working according to His extraordinary plan for her life, all to His glory!

Okay, this has gotten to "book" status, so I will end with that. I'll have some further posts coming soon as I continue to play catch up! : ) We cannot say how much we SO appreciate and are encouraged by your prayers! We know that God is at work in our Hope's life, in our family's life, and in other's lives through this journey He has set before us. We praise Him for that and seek His glory in it. We seek to be submitted to His plan and praise and trust Him in EVERY circumstance! More each day, we are growing in our understanding and awareness of God's presence ALWAYS with us! I can honestly say that we are finding amazing JOY in some days as we are SO aware of His presence with us and His work all around us. And there are other days where we are struggling, hurting and just trying to survive. . . those are the days we must walk by faith and not by sight. . . taking our eyes off the circumstances around us and instead placing them on our Creator and Sustainer, our Author and Perfector of the faith He is growing in us! It is truly a race. . . Hebrews 12:1-2. . . and the prize at the end is beyond the the value of the greatest treasure on earth! Amazing what Christ has done for us! What Christ is preparing for us! Life is hard, but we have a refuge, a strong tower through it all, every step of every day, minute by minute! And that is why at the end of every post, I cannot but proclaim the Saviour that has given me everything good when I deserved nothing but wrath and shame! Hallelujah, what a Saviour!!! 

Psalm 62:5-6 "Find rest, O my soul, in God alone; my hope comes from Him. He alone is my rock and my salvation; He is my fortress, I will not be shaken."

You are SO loved, dear ones!!!

Just a quick tag on to the big post update I just made. . . Hope had another seizure on Friday although shorter than last round! Very thankful for that! She also started another unwell bout on Friday and has eaten/drank nothing since. Today is day three. . . Please pray that this bout will end quickly and she can begin eating/drinking again. She has a lot of catch up to do on weight lost over last few months. Thank you dear prayer warriors! You are so loved!!!

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