Abi

abi-max

The other day, Max was taking a bath and Abi insisted on jumping in with him and washing his feet.
Max’s doctors say that his recovery is 10% surgery, and 90% physical therapy. So he continues to stretch and heal every day. The miracle is that his grafts have no more open wounds, which means he can do way more stretching at this phase than he could before. His donor sites, which are on his back, still give him grief. But we are grateful for the gracious gifts of life and breath!

Outpatient

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What a power week full of miracles!
*Max’s third and final surgery complete!! (So grateful to not be planning our life around hospital stays and just focusing on 2-3 1/2day trips to the hospital each week:) easy!)
*Home together by Monday night because Max did so well!
*Andy & I spent a few much needed days together to reflect, recoup, and focus on each other- love my king!!
*Our children all helped each other, got along so well, and had such a great time with their grandparents that I literally cried at the load of love I received coming home Saturday night(makes a mom so proud)!!
*Amazing elves decorated our home for Christmas so we came home to magic!
*Sweet phone calls from friends and visits from caring teachers just made it all sweeter!
*So grateful for Grandparents that retired just in time for our biggest season of need! And give of themselves fully and lovingly from doing daily Max care to countless one on ones with our precious ones!
*S good majority of us learned how to knit hats today to fit our more peaceful Christmas service needs this year!
*Soaked up the Christmasdevo# tonight and loved it! “If Jesus needed certain experiences, might we also require challenges?” Bring on the challenges! Ready for a new week!

Autonomy

Max New Cast

Max was freed from his 2-arm cast today!

Max has won the award for creativity and coping skills during this season – 1. he’s played legos with Talmage with his feet,
2. tutored Ben
3. he’s stayed on his back 90% of the time and
4. asked us to be his hands for every meal, drink, bathroom visit, nose scratch, etc.

His new cast lets him use his right hand again – 3 cheers for autonomy!! Max’s range of motion is awesome – the doctors are super happy with his progress.

Thank you Nana & Papa for your unending support! What a gift :)

Thank you all for your prayers. Max has been peaceful through all of this. Prayers are heard!

Outpatient Surgery

max

Max’s surgery went great yesterday! In fact, he was able to come home the same day!
His new cast keeps both arms straight out. He joked that the doctors had prescribed an increased rate of hugs
We managed his post-op nausea with the oils. We’re so grateful for his strength and positive attitude.
Thank you so much for your prayers and love!!

Healing Hurts

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We invite your prayers this morning as Max goes into his (hopefully) final surgery.
It never gets easy, and always feel lonely, sending him into the operating room.

“There is, in the suffering of the highest order, a point that is reached—a point of aloneness—when the individual (as did the Savior on a much grander scale) must bear it alone. Even the faithful may wonder if they can take any more or if they are in some way forsaken. Those who stand on the foot of the cross often can do so little to help absorb the pain and the anguish. It is something we must bear ourselves in order that our triumph can be complete.” – Neal A. Maxwell

I recommend this talk by Elaine Marshall on healing (skip to the section Healing Hurts): http://goo.gl/eleA0A

Together

happiness

We’re kind of quarantined while Max is healing, but we couldn’t be happier.
We’ve had 2 of the sweetest days not because anything amazing happened, just because we’re all so happy to be together. Even if Max is in half a body cast and getting soaked every 2 hours, and needs help to do almost everything, we’re so happy to be alive and together!

Home Again!

Max Home

Hallelujah! So grateful to all be home together!! Max is still down and extended out 90% of the time, but today feels like Heaven to be together at home again! A little Panda Express for dinner+ a grateful family+Max ready to hug at all times=amazing joy!!

Pray Max Home

On our way home so soon. Grateful for these two weeks of more stillness so I can hear and feel the things of greatest worth. I love the excitement and variety of life and I’m learning to love the peace and stillness of it all too! Hallelujah for freedom to start again with a great strong and flexible foundation! Pray Max home to Abi, his other sibs, friends, and life without beeps and pokes:) we are all so looking forward to a heavenly 10 day break at home till next surgery:)

Choosing Gratitude

Max & Susan

I’m so grateful for Max, for dear friends and family, for modern medicine, great Drs and therapists, and God’s hand in bringing it all together so Max could withstand peacefully the last 5 days laid out flat in a half body cast with neck and arms extended. Being near him helps me be peaceful about the little inconveniences that sometimes arrive with life. Today he made it through his first wound care with new grafts and now has a new improved more flexible cast. Max was stoked to be up and we took a long walk to the cancer center. On the way, instead of complaining about his cast with his arm out and up, he began singing “everybody needs a hug” as his arms naturally created a hug shape. Then he went on to high 5 others along our way. After his day started out with a broken cast saw, waiting mid wound care and having to receive essentially all morning in wound cares, it would have been easy for him to be frustrated, instead he chose to be grateful. Strong work Max for choosing gratitude and making miracles for everyone you touched today!

Jog

Max nearly jogged into the operating room today. His courage amazes me! There is nothing like dropping him off and standing outside the OR to remind me that I am not in charge, and God is! Controlling my life or my children’s lives in any way is an illusion! Grateful to feel the need to cry out for strength and support!! He came out of surgery a lot less coherent than last time. He is safe but in a lot of pain. They needed to put on a plaster cast from his chin to his chest and whole left arm to keep the healing placement of the skin graft just right. Please pray for his skin to heal on his back to heal quickly where they just took new skin to repair arm and neck. And please pray for right arm to heal where they had to cut through muscle for full release. Grateful for support from earthly and heavenly angels today!! Thank you for your prayers and love!