Hope Update--June 17, 2013

Hello dear praying friends and family!  It has been a bit since I've put on an update.  Although life stays very full, things move very slowly with Hope and so I often feel I don't have much new to tell you.  But after a couple weeks have gone by, or for sure after a month, we see the culmination of those little things into bigger areas of change, which is very encouraging for sure.  I'd love to share some of those things with you.  We've also had a couple discouraging days where Hope has had some setbacks. . . these are always hard to take in and hard to watch our girlie continue to experience the roller coaster of ups and downs throughout this long recovery journey, especially as she is increasingly aware of these setbacks.  To be honest, each setback feels like a punch in the stomach and makes you realize how little we are able to control and how utterly weak we are on our own strength.  It reminds us how much we yearn for the return of our Saviour and the joy and release of Heaven!  The stinging pain of these setbacks are not a place we enjoy being, for sure, but our gracious God uses these times to continue to grow our faith and trust in Him, and especially our dependence on Him to continue persevering for His glory and by His grace!  John 16:33 says, "I have told you these things, so that in me you may have peace.  In this world you will have trouble.  But take heart!  I have overcome the world."  And 2 Corinthians 4:17 says, "Our light and momentary troubles are achieving for us an eternal glory that far outweighs them all."  Praise God for the most awesome hope of the gospel of Jesus Christ!!!

So, a few updates to share:

Hope continues to make small bits of progress that over time sure adds up and we are so very thankful for God's obvious faithful hand of healing over her. Boy it stretches our patience some days, but He is always accomplishing His good and perfect plan and we need to stay content and thankful!

Probably most notable improvements are those in her continued growth in communication, and her desire and ability to interact with others, even those outside of her usual comfort zone!  Hope surprises us daily with everything from deep spiritual thoughts or insights, funny little poems or rhymes, witty comments, and amazing memory of past details!  Having her ability to communicate back and seeing it continue to improve is so very huge for Hope, and a massive answer to prayer.  How we praise God for His mercy in this area of Hope's life!  We have also noticed that Hope is more willing to interact with others and even carry on conversations.  Hope's Educational Assistant at school has also noticed Hope interacting with other students more.  She is still shy and reserved in many situations, but it is gradually improving.  This past Sunday, she was eagerly raising her hand in Children's Ministry and answering questions during the bible teaching time.  And she was great at sharing what she had learned that morning with us after church!

Hope's cognitive function is also improving little by little.  She is starting to do some math facts, spelling, and Scripture memory work!  Her favourite new thing to do with Gabs at home is to play "school!"  I've always laughed that my two sweeties who are not always so eager to go to school, come home and then want to "play" school!  It is great to see them doing something that they used to do.  It takes a lot of work and effort on Gabs part to make it happen though and so it can be hard on her, but she is usually such a great little sister to Hope and will spend hours trying to help Hope play in her new dynamic, in spite of her obvious obstacles.

Hope's eyesight has also shown some improvement!  This is beyond exciting to us!  It is very minimal at this point, for sure, and basically is just recognizing and seeing a handful of colours most of the time. . . but it's something!  The REACH consultant was able to conduct a thorough functional sight assessment with Hope just over a week ago and it was very exciting not only to see what Hope is seeing, but also to see how well Hope participated in the assessment (these used to be absolutely wretched experiences for her and she refused to participate whatsoever).  Here is a quick summary of the REACH consultant's findings. . .

--Hope sees light and can distinguish increasing or decreasing brightness.  Most children with CVI (cortical visual impairment) prefer bright light, but Hope is among the minority who actually seem to see better in less light.

--Hope sees colours.  Although typically red and yellow are the most easily seen colours with CVI, Hope seems to see best red, pink, purple and blue!  She also can sometimes identify green, yellow, orange, black and white.

--Hope sees movement better than things that are still.  She also sees things better when close to her.  Also her right eye vision appears better than her left eye vision, especially with her peripheral vision.

--Hope sees colours best when they are solid and not multi-coloured.  She also see colours best when they are against a black background.

--Hope appears to have a blind spot (or area that her vision is not good) of looking down.  She is able to track a flashing light from right to left and even up, but loses it when you move it down.  This is helpful to know so that we can try elevating her tray so she may be able to take in more of what is going on when doing an activity on her tray.

The REACH consultant will be instituting a plan beginning in the fall at school, that will attempt to start "re-training" her eyes/brain to see again.  They do not think she will ever see well. . . for instance, she will never read again. . . but they think she may be able to improve somewhat. . . only time will tell what that may look like.

The girls finish school at the end of this week, and we are very much looking forward to summer break, as a family!  We have a lot of work to do in getting ready to move when the house being built to accommodate Hope's special needs will be ready (currently predicted as the end of August).  We have a couple of shorter family road trips planned as Hope's health and the success of our packing/purging efforts allow!

Hope has all her annual and semi-annual follow up appointments starting this month and continuing spread out through September.  This Wednesday, we have three. . . another intratheccal Baclofen pump refill, and will also turn it down again!. . . a urology consult. . . and an endocrinology follow up appointment.  

Hope has had a couple more unwell bouts this last couple weeks, with some returning symptoms of old such as insomnia, lack of appetite, feeing unwell, temperature dysregulation, elimination issues and just a general "off" kinda sense about her.  However, she has been able to still communicate through these times, and in general are still far better than they used to be for her.  

Hope has not had any serious seizures since early May.  She has had some little "blips," such as tonight where she started to cry out in pain, and when Trev looked at her, her eyes were spinning around in circles.  She said right after, "I do not like it when the world is spinning around and around!  It makes me dizzy and my eyes hurt!"  Not sure if this is a seizure or something else.  Hope does complain of dizziness quite often, perhaps a side effect of her seizure medication.  We will continue to observe her for now.

Hope in general is much more joyful, interactive, cognitively engaged, and driven to do things.  She continues to be bored if not continually assisted by someone!  Her ability to use her sense of hearing and smell to deduce things is uncanny at times. . . you feel like waving your hands in front of her eyes like somehow she's tricking us!  We call it her "party trick!"  She loves her bionic ears and nose, and delights to "show off" what she can do with them!  Hope is so sensitive to the things of The Lord, and for this we are by far, MOST thankful!  We are often convicted and challenged by her perspective and motivation in things!  She has started actively pursuing her own prayer life, which is precious!  She is currently burdened to pray for two children in Africa that she recently learned about from her past Grade 4 teacher, who spent the last year teaching in Niger.  She shared about Timothy who's father passed away a few months ago, and Manzi who is open to learning about Jesus but still is bound by her Hindu beliefs.  She is faithful to pray for them EVERY meal and at bedtime EVERY night!  It is precious, and it makes me think often of how many children we have heard about who have been that faithful to pray for our sweet Hope!

Hope is waiting on receiving a standing frame and a walker!  These items will likely not arrive until July sometime, but we are excited to see how Hope may be able to use them, or at least start practicing to use them.

So, we have much to praise and thank The Lord for and also several things to continue to pray for!  I'll sum up the prayer requests below for you. . .

Prayer Requests

*For Trevor and I. . . constant need for wisdom, strength, patience, creativity and godly priority setting.  I know that God always provides what we need, but I know without Him, we would be in so much trouble, so I recognize the grace that resides in people continuing to pray for those things in our daily life!  As this long trial continues, Trev and I are also trying to start being more intentional again in our marriage relationship that has taken a necessary backseat for the last year and a half. . . so prayer for us in getting back to a better routine again, including some date nights!  Prayer for godly priority setting with our time. . . always more things to fill our time, than actual time to fill. . . so it requires being intentional daily to practice godly priorities and remain flexible when The Lord gives us a different agenda than what we had planned!  And always for wisdom in parenting our two sweet girlies!

*For Gabi. . . for continued growth in her ability to serve and interact with Hope.  It requires a lot of other centred focus which can be hard on such a constant ongoing basis.  For opportunities to enjoy some of the "normal" activities as a healthy child. . . this can be pretty tough when trying to also consider being sensitive to Hope and her feelings.  For creativity and intentional effort to be connecting more with her and pouring into her life, as her parents!

*For Hope. . . for her sight and her scoliosis to be healed!  For The Lord to continue to work in her heart. . . we have been so encouraged as of late to see how she continues to grasp deeper biblical truths and is so sensitive to the things of The Lord.  Her major brain injury related struggles are with decision making and seeing other's perspectives (including trusting things that others tell her that she doesn't believe or agree with).  She is particularly focused on things being "fair" right now and obviously this is next to impossible to satisfy, nor should it be our endeavour as believers.  We are praising The Lord for the fruit of His work in her heart in this area, but can still be a struggle at times.  For Hope's upcoming doctor appointments.  For Hope's unwell bouts, dizziness and her seizure blips to go away completely.  For a group of people that can spend time with Hope to help fill the extreme boredom that she faces daily, and to give Gabs opportunities to have some "free time" to do some activities that her big sister is not able to do at present.  We are very thankful for Isylla who has been spending time with Hope, as well as a couple other sweet girls, Maddie and Valerie, that will start to spend time with Hope. . . but with summer, this need will increase even more!

*For family. . . We are all very exhausted, have been battling illness for the last couple weeks, and feeling in need of some rest time, but also some family time, and some extra time at home to continue to work on getting ready to move sometime at the end of the summer when the new house will be done and ready for us.  Please pray that we would be able to fit these things in this summer, being intentional to have some quality time with the girls and continuing to find ways to help Hope to not just be there, but to be a part of what we are doing!  Also finding time for both some time of rest and time to work hard on preparing for Trevor's church fall ministry and our family's move.  We are needing to go through a lot of stuff and downsize to fit comfortably into our new home and this is a great thing to be doing, as less stuff means less taking care of stuff!  But there is a lot of time needed to invest in this effort!

I very likely have forgotten something, but this is plenty long enough of a read already, so I will end it there.  I have a couple videos and pictures to share with you as well.  I'll post them separately when I get a chance.  I hope you enjoy seeing some of what I've been able to share with you.  We look forward to continuing to share our hearts and life with you, dear ones!  What a blessing and encouragement to us, each of you are!  I was busy today going through piles of cards, notes, posters, etc. from the hospital and taking pictures of everything for a memory book that we want to create for Hope at some point. . . praying that she'll be able to SEE it some day!  I was given hug after hug by reading your precious words of encouragement, sharing of treasured Scriptures, and being reminded of how God has lovingly cared for our family and sustained us through this horrific past year and a half, through the precious body of Christ. . . so many different people. . . friends, family, acquaintances, and even strangers. . . young and old. . . far and near. . . each one of YOU!!!  Thank you for loving on our family, caring for us, and continuing to lift us up in prayer!  Thank you for sharing in our joys and in our sufferings!  Please continue to pray for us. . . how we need it!  And please, most of all, continue to praise our God who is so worthy of ALL PRAISE AND THANKS!!!  You are so very loved, dear ones!!!