Sara Hendren Updates
November 1, 2022
KCS is continuing to share the link that the Bridge Church has set up to provide financial help for the Hendren family. Thank you for your generosity!
From Amber
3 months since I've heard her sweet words and felt her tight hug.
Doctors say it's not likely we will ever have these things again. But I think she was working on 'Hi' the other day so hanging onto Hope.
3 months plus a day we were on Savary Island, watching her live life to the fullest. Full of kindness, full of fun, full of activity, full of song and full of determination.
When you try to picture what it's like, and it feels too excruciating — well… you get the idea.
While we would love to share an amazing recovery story with you, we don't have that yet …it is actually very challenging to write updates or answer 'How is Sara?' How to describe? I wish I saw more. Thankful for small wins.
She is definitely more calm and comfortable- thank God that her muscle tone is much better controlled now and causing way less discomfort. She is sleeping pretty well most nights and her teeth grinding has also improved quite a bit (without the Botox that is still being considered for other muscles). Her thrush (tongue) is finally improving and she is more awake during the daytime hours, often having only one short nap. She has been successful on the commode lots (or we are in timing it and trying to read her cues) 😉.
She had a successful G tube surgery and has tolerated increased feed rates fairly well. She now has 4 meals a day fed through her tube. She has no other attachments and usually manages her secretions fairly well though some parts of the day have more drool than others (side effects of med partly). I need ideas for cool bib type fashion 😉. She has ankle, wrist and elbow splints to help protect her range of motion and so far her ankles and one arm are doing fairly well, relatively speaking, for maintaining flexibility and are less tight. Her other arm is quite tight and the wrist and one ankle have less range of motion.
She works hard to move her tongue around a bit more and does some neck movement - maybe moves one arm very slightly? But otherwise can not move herself. They use FES (stimulation to trigger her quad muscles for example) with the bike (it moves the pedals for her) and the stander but so far she hasn't really pushed those muscles herself much. It is heartbreaking to see all the rehab equipment and tools and cool technology they have here and her interact so little with it. There are also lots of fun programming that RMH does and it's so hard to see so many things she would have loved to do before…
She is often not engaging or responsive very much to her environment. We work hard to be silly and playful and this brings smiles and chuckles each day at various points but is quite the effort all day. Trying to read, storytell, joke, sing, use various sensory things (Amber had quite a meltdown about her lack or responsiveness to slime. One of her all time favourite things. Heartbreaking. Weird what causes meltdowns but you know, grief. Weird like that), other forms of music and stuffies or whatever we can find to try and get a response or stimulate is exhausting all day (especially hard for mom and Jaden when this comes more easily to Dad and Joel and they get more of the laughs, but tiring for them too). We see short times that seem connected (even some emotional tear filled times that break your heart again) but also a lot of sort of semi conscious stuff. They have tried some medicine to stimulate but it's a low dose so we might increase. So far it seems to help her be a bit more alert maybe? She doesn't cry with actual tears very often and doesn't cry out with a complaining tone too frequently either. She is quiet a lot. This is very hard for us considering her past personality. She doesn't seem to have a consistent way (sound) of giving us affirmative vs negative responses yet and the eye gaze stuff is inconsistent still, though her eye control is definitely improving and she is vocalizing a bit more. We are thankful to see more eye tracking sometimes. We are hoping it will become easier to understand what she wants.
The eye doctor saw her and thought for now her vision would be similar to looking through waxed paper and that one eye is stronger than the other and that she prefers to move them both to one direction and it's easier to look down than other directions. They will reassess soon as this is one thing they do see changes in over time often and we already have noticed positive changes.
And then there are all the other things…. The house, the vehicle, The quotes, the applications, the therapists to find, the forms, the programs and organizations and acronyms, the equipment to order and the equipment to request to borrow while we wait for the actual order while it awaits approval for each item from the program we already got overall approved for… it's a process and the daily things are enough to overwhelm even without the onslaught of sadness we feel as we miss our little chatterbox's sweet voice and wonder what she understands about where she's at and what she's lost. I can hardly type the word 'lost' because I am so hoping for more things for her. But we know there are things she can never lose. God himself, and our love are always with her. We trust she has peace from that and that He whispers hope and comfort to her. We have seen much more joy - praise God.
We know God promised to walk with us and he has good ahead for her. It's not looking like how I pictured but that is part of this human existence. I wish I could take her limitations as my own instead. So many things we can't control and don't understand. But I do know that God loves us all and that he is not done with Sara yet. But oh Lord, give us strength because it is mighty hard. We refuse to give into despair though it hovers closely. Jay prayed for her on FaceTime last night with 'if she's limited in the day, Lord, may she be free to explore and enjoy in her dreams.' We love a God who is the author of Hope and creativity and we continue to pray. We know ultimately eternity promises a new body and no tears.
We are incredibly grateful for all the people that have prayed for her, loved on our family, fed us, clothed us, stuffy-ed us, appliance-d us, vehicle gifted us, offered to do respite for us, donated and supported us - we are so thankful. Your kindness has lightened an extremely heavy load. We have had connections sometimes 'out of nowhere' help us with various aspects all along the way. You have shown us what true community and compassion look like and it will never be forgotten. I'm sorry that all we can muster up is 'thank you' - seems highly insufficient but it's all we've got for now.
They expect to discharge later in November - it's really the timing of the air transport & equipment stuff. You know, she can't come home unless her wheelchair is ready - that sort of thing 😉 we are learning all the care, feed, med stuff….Jay has jumped in more quickly - though he had less opportunity here, so kind of necessary - Amber has been a bit pouty about it (Ironically as she had the MD aspirations once). We just don't want to need any of this stuff.
It is very scary and sad to come home but also very good to reunite our family. It will be hard to figure out new schedules and dynamics and how much stimulation she can handle, etc, not to mention guarding her health and continuing to pursue more recovery. And then finally deciding what to do about our house…
It is devastating to watch and the sadness (or anger or tiredness or frustration or whatever other roller coaster emotion of the hour) is so heavy sometimes, but we have 3 kids we need to ensure have as thriving, service-oriented, purpose-driven, positive, adventurous and fun-filled lives as possible and we need to figure out this new normal. Ah, I can't even believe I typed that. I hate that expression. Try not to use it with me. 😉. Life has forever changed. We are needing those Aaron arms. We will need our village more than ever.
Thanks for being here. God bless you.
Ps. We would be remiss for not mentioning our gratitude to the staff and volunteers at BCCH - ARU, PICU, t7 and RMH (not to mention the lifeguards and EMTs and KGH staff in Kelowna) that provide compassionate care to families in such hard circumstances all day every day. It's 24/7 here and people keep showing up to gently love on Sara and provide for us all... Including the government programs and charities and things I never knew existed and wish we didn't need.
September 8, 2022
Below is an update from Jay and Amber Hendren regarding their beloved daughter Sara.
Sara, we are hopeful that you will be able to play in the Gordon Campus alleyway this school year.
If you would like to support the Hendren family financially during this difficult time, you can do so through the following link: https://www.canadahelps.org/en/dn/m/74556/donation
From Jay & Amber
We are feeling the love of intentional community and are SO grateful for the support and generosity to our family. Our workplaces, church, family, friends, community groups (shout out to the amazing Pur-Kids Foundation and Cops for Kids) and strangers have encouraged and helped us in many ways. We love messages to us and audio recordings we can play for Sara. You are helping carry us.
Thank you for continuing to pray. We know there are many needs in this human life and we are honoured if you'd continue bringing Sara and our family to the Lord in your conversations with Him. We trust He is holding her and whispering His love to her and we are thankful He walks with us through these deep waters. It is incredibly gut-wrenching hard. It is hard.
Sara continues to be medically stable. We have been at the Sunnyhill Acute Rehab unit for over 3 weeks now and Sara has daily (weekdays) therapies with PT, OT, SLP, Rec, and music Therapy when she is not too upset or sleepy. Every 2 weeks new small goals are set as her brain is in the process of building new pathways - but the area damaged is usually the main connector of said pathways …. It is a pretty heart-wrenching process as there is much frustration for her and it's so hard to tell what she needs or how she is feeling as she can't talk or really move herself and she seems mostly unaware. Overall, there is some improvement, but slow gains and we ache for more.
The genetic testing for Sara came back and it confirmed one of the earlier theories about the cause of this event at the end of July - turns out she has a rare heart condition that can cause an arrhythmia leading to cardiac arrest. The condition is called CPVT and is difficult to diagnose (ECGs are often typical at rest and sometimes even when stressed) and was complicated by her previous history of seizure/abnormal EEG (they think she had outgrown this and they don't think this was due to the heart condition as the condition doesn't cause irregular EEGs -- our precious, rare girl). She is now on medicine to protect her heart.
Her irritable periods have decreased some, her calm periods have increased some and her sleep is mostly during the night (please pray for her to have better longer nighttime periods of sleep).
However, there are many episodes each day of tensing, arching, crying out and unaware, twitching muscles and she can get drenched in sweat from so much movement and this can also affect her sleeping. Figuring out the right medication balance to control tone is incredibly frustrating and hard for us to endure - our heart breaks for Sara's discomfort, and what works best is different for every child with a brain injury with dystonia and it's uncertain whether things will improve very much with her own control. We are sometimes able to console her or figure out the cause of the discomfort, but other times she is still upset. It is very hard to see her struggling in those times. The unpredictability also means we need to be right there at her side most of the time. Nursing staff come frequently (meds, etc) and are around to assist at the touch of a button (and are lovely!) and can sometimes spell off during a meltdown (Amber's or Sara's but parents do the majority of observing and supporting Sara on the daily. It is exhausting but she knows we are here and is calmed by us often.
Currently - She is working on her sitting and standing tolerance (assisted with people or apparatuses - she can't do this by herself - she has a slick wheelchair we can push her in as well as a stander thing to put weight on her legs) to get time out of bed. She is starting to taste/use her tongue a bit and swallow a bit of flavour (a tiny bit of ice cream was her favourite). Did you know there are over 2 dozen muscles in swallowing well? Ah, the things I have taken for granted….
She will likely have surgery in a while (they guessed around 6 weeks) to have a gtube button (into her tummy) so she doesn't have to have a tube down her nose anymore for feeds/meds. We are working on finding a way for her to communicate yes and no (blinking eyes) or with eye tracking on a device to make choices. She has not been consistent yet.
She has started vocalizing a bit differently (albeit still sounding frustrated, but different than crying out, which is a good sign of her intentionality to communicate but not sure if she will be able to control/formulate much). She is often responsive (calms or smiles) to voices and music and stories and we occasionally see her personality shine through when she chuckles at silly jokes or at the playful banter with familiar and some with newer voices, too (she has some favourite nurses). She loves to listen to worship music, the Greatest Showman soundtrack, and, of course, the soundtrack to High School Musical is a fav.
They don't like to predict too specifically yet about what she will and won't be able to do over time, as we know brains of children have more neuroplasticity, however, they do project (and currently clinically see) serious impairments (MRI shows massive damage in deep gray matter in the basal ganglia and thalmus regions, for example). We have to move her entire body, including her neck (and this is very hard when she gets stiff). Her team is committed to challenging her cognitively and physically where they can as her brain changes but it's unclear how much improvement we will see….we know Sara is a hard-working, determined girl and we see it still, but it's so hard not to see her doing all the 'regular' things and heading off to school with her friends…she was so excited to 'go in the alley' this year!
We are hopeful for good things ahead for her. We keep praying for more gains and progress in Sara's abilities and we pray she is able to sense God's deep love for her (and ours too). There are many regular tears and times that feel unbearable and overwhelming. We know God can handle all our emotions so we bring them to him, and appreciate how the Psalms (for example) cover the range of emotions, too. We ache to see him work miraculously in her in the ways we want . We try to just lean on Him for each day's strength (psalm 145:14). It is heart-wrenching to look back and overwhelming to look forward too much but He has been faithful each day to help us. His words have given us Hope regularly and His comfort has been felt.
Their current guess is that we would likely be here in Sunnyhill for 8-12 more weeks (leaning closer to 12, they say). We still have a room at the Ronald McDonald house (kindly sponsored by the Cops for Kids charity) - an amazing facility that Jaden and Joel have been thankful for, too. Google it and check it out. Impressive. Save-on is a big sponsor for it, as well as many different businesses and individuals (ex: volunteers do fresh baking in their kitchens every week as well as serve meals weekly, too. Side note: I had to laugh this week, though, after a few weeks of super yummy homemade stuff…. This week's meal was literally McDonalds! Like piles of Big Macs and nuggets like I've never seen before!). What an amazing gift to families in BC and Yukon with difficult medical situations.
We (Jay and Amber) both had a chance to have a little stint at home with the boys in the last few weeks and we are so grateful for good friends, family, and KCS for helping make that happen (Amber was so touched by the outpouring of love for Sara and had awesome transportation home!)….It is also hard to be home, with Sara's room empty of her singing and tea parties and all family interactions feeling differently. It is a process different for each family member and we are praying God would help us to draw nearer to Him and each other as we walk this road - Thanks for reaching out to our boys and loving them, too. They worry about their sister, as well as their parents, and what the future looks like for us all.
It will be a challenging time for everyone to have the family divided but we are glad the boys can get back to the fun activities they love at this time of year. As mentioned, Ronald McDonald House and Sunnyhill are amazing facilities with many of the comforts of home (great kitchen spaces, laundry, etc) but mostly the parent with Sara needs to be at the bedside so they are long days without much for breaks or fresh air.
Please continue to pray for:
*more of Sara's personality to shine - for her to have more comfort and increase in calm, alert, aware, happy periods where she interacts more with her environment and experiences more joy*more intentional movement (more tongue and swallowing strength for trying more food, for example, or more movement of her hands for grasping or touching)
*more clear positive communication (could pray for clear eye responses and some more sounds for example)
*comfort and strength for Sara as the therapies are a lot of work for her and there have also been some tummy troubles of late that aren't quite figured out
*her vision - they aren't sure yet how much she is able to see (will test a bit later - scans show some damage to occipital lobes)
*improvement of the management of her tone (decrease twitching and arching and tensing)
*for peace and hope and wisdom to be regularly whispered by the Holy Spirit to us all
*for her brothers as they begin school - that they would be intentional with each other and make good choices while they process their sister's challenges and the changes in our family life - that they would remember they are part of God's hands and feet to others, too and they would sense His comfort
*for Jay and Amber as they hold each other up from a distance (Jay will mostly be home with the boys on working days, and Amber will mostly stay in Vancouver)
Sorry for the long-winded message but that's a snapshot of where things are at. If you know me, you know I'm not great at Reader Digest versions. Jay said it's too long for people to read....so if you're still reading all the way to here, you're awesome (you're still awesome if you skipped parts, but maybe slightly less informed now). Haha. Feel free to send messages that make us laugh. Humour is good medicine. Thanks again for caring for us… Blessings on you all.
August 18, 2022
Many people in our KCS community have asked for ways to support the Hendren family. The Hendren's church, "The Bridge," has permitted us to share their giving link. All donations are tax-deductible and will go directly to the Hendren family. The family is adjusting their work schedules for this next season, and we are partnering with the various Hendren communities to help support them through Christmas. If you are interested in giving, you can follow the link.
In the past three weeks, so many people have been sharing photos they have of them with Sara. It is clear that Sara is "one of a kind," and God uses her to connect and bring joy to almost everyone who crosses her path. Recently, Amber said that a significant prayer she has is for Sara to continue bringing others joy while finding joy in her environment. Please join KCS in praying for this. The family cannot provide constant updates to so many people, so the most current update is below.
Sara has begun a new phase in her recovery. She suffered a severe hypoxic brain injury but - Praise the Lord - she is more stable and has been moved to the Sunnyhill Acute Rehab Centre as part of BC Children's hospital. Sara and her family expect to be here from several weeks to a few months (this is still unknown). Various professionals will be involved in daily therapy sessions to help Sara and teach her parents how to use various equipment, etc.
Sara sleeps a lot and has had many episodes of hypertonic tension and irritability. Sara also shows more awareness of her environment, sometimes smiling at the family and other voices and chuckling and giggling at her Dad's silly jokes. Sara and her family are taking short walks in a special chair, as, thankfully, her only attachment is the feeding tube (no more IVs or anything!).
Prayer Requests From The Hendren Family
- More comfort and calmness during her awake periods with more interaction and joy expressed (decreased tone and less uncomfortable tension)
- Sleep-filled nights
- Purposeful movement
- No seizures
- Peace and strength for us all
- Wisdom for her team
- The boys as they spend more time away from mom and dad and go back and forth to Vancouver
Sara's family is incredibly grateful for how people have shown them love. They love messages (phones are off so the timing doesn't matter) but are sorry if responses are slow. They are so grateful to be a part of such a caring community. Your prayers are precious to them. They rely on the Lord to carry them through these deep waters every hour. They so appreciate you continuing to pray. To quote Amber, "It is powerful!". Because the family cannot provide updates to so many people, KCS will give an update every two weeks through our website. We will share a link to this on our first post in two weeks. Messages to the family are coveted but count on receiving updates through our school blog. For now, please continue to pray for this beautiful girl who loves all of you dearly.
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