Update on Hope

Hello dear ones!  I am finally getting a chance to send out an update on our Hopey Bear!  First, thank you sooo very much for such a outpouring of prayer and encouragement last week as our family went through one of the tougher weeks we've had for a while.  What a blessing the Lord has made EACH one of you in our lives!!!

Hope is doing much better this week and we are praising the Lord for His grace in this!  Last week was a good reminder of how far God has brought Hope as we continue this journey.  Hope started to eat last Friday and it was a massive relief to our hearts.  She started with eating very small amounts only, but by Monday afternoon, she was eating more average again.  She is definitely feeling better now and is back to surprising us daily with her little progressing achievements!  Her speech is right back on track.  Her memory is continuing to growingly impress us as she recalls details, stories and people from the past, as well as memorizes verses and even remembers things I forget!  I'm back to asking her to remind me to do things. . . it's GREAT!!!  Trevor did a little game of "Guess the Movie" from listening to songs from various kid's animated movies.  Hope and Gabs were neck and neck in the game, and we were amazed to see what she is starting to remember!

Hope finished her last day of outpatient therapy at the Children's Hospital this week.  It was a sad goodbye to some very special therapists, Logan and Fiona, that have poured their hearts into working with our Hopey.  Fiona has been the longest therapy relationship that Hope has had, and was the first therapist's name that Hope learned to say!  We love those dear girls and praise God for how He has used them in Hope's life.  Please keep each of them in prayer as they are both making transitions in their jobs as well.

Hope was able to attend the Grade 4-6 Activity Day at Cardel Place with her school this week!  It was a great adventure for her dad and I to assist her with rock climbing and finally getting back into the pool again.  Hope has had a fear of pools since last year.  Both activities were preceded with many tears and refusal to participate, but thanking the Lord for the intuition that He gives parents about their children. . . we got her to just "try it" and before you knew it, she was LOVING it and didn't want to stop!!!  I'll attach two photos. . . one of her rock climbing (harness and all!) and one of her in the pool with daddy!  She had a blast and was able to conquer some fear that only holds her back.  We thank the Lord for helping her to be brave and see what she can still do and look forward to having more options of activities for Hope to be able to particpate in!  Family pool time will be a great joy to little sister, Gabs, too!  : )

Another praise and new joy for Hope was the jogging stroller that was given to us by the Woolsey family.  We have been using it this week with the nicer weather and Hope is loving the opportunity to be outside again!  We went for an almost 2 hour walk together this week. . . she loved it!  And we have also put her in the back yard in the stroller with Gabs to have some play time outside!  Gabs is great with her and today they spent almost 6 hours outside playing. . . catching ladybugs, building forts, eating snacks, etc..  Hope was even bossing some of the neighbor kids to get down off the fence before they got hurt or broke it!  It was pretty humorous!!!  : )

Prayer Requests

Here are some of the things that you can be keeping in prayer as you continue to think of us:

*Please continue to pray for Hope's eyesight to be restored.  There is no change in this and we just humbly continue to bring this request before our able God, waiting on Him and trusting in Him no matter what He deems best for Hope's life!

*Please pray for all the new therapists that will be starting to treat Hope at Bearspaw Christian School.  Building rapport and relationship with these therapists is important for both Hope and our family as we continue forward.  Please also keep us in prayer, as a vast majority of her "therapy" is done at home in what we do with her.  Logan and Fiona have been great resources for us and we apply all that we learn from them in the things we do with Hope at home, both in play as well as in intentional "therapy" time with daddio!  We are also looking at getting some equipment to help Hope continue to progress as the Lord continues to heal her.  One is a walker that will be trialed next week. . . please pray that this walker will have the right attachments to suit Hope's needs as it is the only one covered by the AADL funding program.  If it doesn't work, we may need to look at purchasing one which would be a few thousand dollars.  We are also waiting on a standing frame which would allow Hope to be stood upright at home.

*Hope continues to have little seizures or almost seizures.  Her anti-seizure medication has been increased twice over the past couple weeks.  We will just continue to watch and monitor her for now.  She is starting to let us know when one is about to happen, and she has responded well with keeping calm and asking to go to a quiter cooler place to avoid going into a full seizure.  She is also able to communicate better how she is feeling during her seizures.  We are still waiting to hear back from all the blood work and tests that were done last week.

*Hope's intratheccal Baclofen pump was turned down last week.  It is getting closer and closer to the lowest possible dose or rate that can be infused.  We are praising the Lord for this miracle!  We'll see the neurosurgeon in July and are sure looking forward to showing him the amazing things that God is doing in healing Hope's broken body.  Please keep this process in prayer, as it is driven by Trev and I now. . . making the decisions when to decrease the pump.  And please pray that Hope will continue to have no issues with dystonia (too much tone or tightness in her muscles).  She still has some but nothing that is harmful, painful, or limits her functions.  Please pray that her motor control of her muscles would continue to improve, as well as the severe scoliosis in her back.

*Please keep Gabi in prayer to continue to grow in her ability to connect with her sister, and especially to practice other-centeredness in her play and interaction with her.  With all the beautiful weather, it is hard for Gabs to not want to just go outside and play and do the things that she is able to do, but Hope is now not.  It is so hard on Hope, who is very aware of the fact that Gabs is outside playing and doing things she cannot.  Hope will often say things like, "Gabs don't go outside or you'll break my heart!"  We are trying hard to find some balance in allowing Gabi to still be the healthy little girl that God has made her, but also considering the heartache of her big sister who remembers the past and knows what she now can no longer do.  So we are trying to make times for them to be outside together, time for Gabs to go out and do some of her past normal activities like riding a bike while someone else is entertaining Hope, and time where Gabi can practice other-centeredness and stay inside to be with her big sister and engage with her.

*For Trev and I, we would so appreciate your prayers for wisdom (always!), strength (daily!), and the Lord's leading in how we use our time.  There is always more things to be done than time available to do it and so we need His guidance in using our time wisely and for the purposes that God would have, always being flexible to what He may allow to change our plans. . . this happens quite often.

I think that's it for now.  As always, we are so thankful for your heart to lift our Hopey and our family up to the Lord in prayer.  What a compassionate God we serve that desires us to bring all our cares to Him, as He continues His faithful work in our lives.  His yoke is truly easy. . . not because life or circumstances are easy or because our strength never wanes. . . but rather because He is faithful and loving as we put our trust in Him and live lives dependent on Him.  Our God never EVER fails!!!  In a world where everything fails at some point or another, that is an AMAZING TRUTH!!!  May God hear our grateful hearts pour out praise to His worthy name today and forever more!!!  You are so very loved, dear ones!!!