Thursday, June 2, 2016

June 2nd, 2016 -- Quick Update

Hope is super excited to be attending the Umbrella Conference beginning tomorrow!  Joni Eareckson Tada will be speaking at the conference and she is really hoping she can meet her.  

She listened to her entire biography this week in preparation and said she only wished it was longer . . . that she didn't rush through some parts of her story.  We have loved seeing her get excited about this wonderful opportunity and pray it will be something the Lord would use to encourage her to see a life lived to the glory of God in the midst of suffering.

Just a quick update on Hope's seizures . . . Hope has been having 2 seizures per week for the last three weeks.  Last week was a very scary one where Hope had a 3 minute seizure that affected her breathing again and left her unresponsive and choking on her saliva, among other concerning symptoms.  She also required a dose of her rescue med.  We have been taking a lot of notes for her seizure tracker and video to document what is happening.  The doctor would like to see her sooner than the original plan of 3 months.  Hope will see him on June 15th now, so just a couple weeks away.  Please be in prayer for Hope as Trev and I leave for a pastor's conference this weekend.  Trevor will also be preaching at Harvest Durham this weekend and sharing about our journey with our sweet girl over the last 4 1/2 years.  It has been a long while since he has done this, so I'm excited to hear how the Lord leads him to share some of what we have learned.

As much as we look forward to these conference/preaching opportunities and the people we will be blessed to connect with, we are concerned about our girlie.  We are praying that she does not have any seizures while we are away, and especially any that affect her breathing so severely.  A praise since we've left the hospital on this lower seizure med dose, is that Hope in general is feeling much better . . . way less nausea, dizziness, double vision, vertigo, and irritability.   She's been a happy girl, which has been encouraging and makes us wonder if this current seizure medication is maybe just not the right fit for her anymore.  We look forward to discussing this all with the doctor and seeing how the Lord leads and works through him to help Hope.  She has definitely been afraid with the intensity of the recent seizures, and the nature of some where her breathing is affected and she is unaware or unresponsive during them.  She has also lost her hearing during and after these seizures which was very upsetting to her.

Sorry this is so short and sweet . . . I know not very typical of something that came from Heather and I have lots more I could share, but it is late and I will be leaving early in the morning for the Umbrella conference with Hopey, so my pillow is calling.  So thankful for your prayers to cover our girlie!  You are loved, dear ones!

3 comments:

  1. How did the conference go? Did Hope get to meet Joni? How did the doctor's appointment go earlier today? Think of you all, often and remember to pray for you.

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  2. I hope that she was able to speak to Joni Erickerson Tada. I hope that the Lord used her (Hope's) speech to touch the lives of those who are suffering and trying to find balance and more substance to their faith. I also hope that the words spoken during the conference will encourage her to perceive the blessing in living a life to the glory of God. #alwayspraying #alwayshoping #totalrestorationisworthasking4 #enjoylifenowismostimportant

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  3. Hope, Heather and Pastor Trevor, it was amazing to meet you all. Pastor Trevor, I was profoundly moved to hearing you share your family and Hope's story preached on June 12th. Hope, I loved your acrostic poem "Wheechair". Keep writing. You have a gift! Thank you for your loving and welcoming smile as you greeted me that day. Heather, I loved talking with you after service. I have been praying for your family since. May God continue to bless and strengthen each of you!
    Sheri Solley

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