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!!
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:)
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!
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!
11/4 Max checked into the hospital and had successful surgery, releasing his left armpit and neck. He now has full range of motion in those 2 areas. They used a product called Integra to prep for skin grafts.
11/7 All of Max’s siblings came to visit. Sam showed him some new magic tricks.
11/8 The pain from Max’s midline IV went down, allowing him to move his right arm and do physical therapy, walk around, etc.
Today, Max goes in for surgery to 1) skin graft the left armpit and neck, and 2) release the right armpit. In several days, Max will have one more surgery to skin graft that area.
We are so grateful for the experts here who have so much experience! Thank you for your continued faith and prayers, especially for today’s surgery!
Day 7 in the hospital
Today Max walked around like a champ, did some light physical therapy, received a great massage and Jin shin, and under it all his sites are prepped for 2nd skin grafts tomorrow or Thursday. We ordered these caterpillars a while back, now they’re cocoons and soon they’ll be butterflies! it’s fun to watch as they develop and the kids look on. Maybe Heaven looks on as we grow, struggle, drop into our cocoon, grow some more, and then emerge transformed. Max may this process transform you into all you can be. I know it’s transforming me. I’m clear on who’s in charge of this transformation and He is a master physician and so much more. Surrendering again.
Saturday in a hospital room with Miracle Max. There are parts of life that feel like Heaven. Most of this experience feels a lot like sucky earth life. I can see Heaven today 1)when Max tries time and time again to do the best thing for his body and doesn’t give up or go to frustration, 2)when Abi blows Max a kiss, 3)when the medical plan changes again and we remain empowered and choose to Love what is. Maybe Heaven is here.
Max is back with us after 5 hours in the operating room. Super grateful our boy is out of surgery and joking with us.(with a little help from the lingering laughing gas). The contractures (tightening from the skin grafts shrinking) have been released on his chin and left arm pit. Grateful that he’s already feeling a release of the tightening. Grateful for mesh matrix layer in place to grow for a week or so. Then ready for hopefully next to last skin graft surgery. Quite a process!! Grateful he was surrounded by a team of earthly and heavenly Angels. Miracles.
Last night we went out to Macaroni Grill as our last supper before another operation and another hospital stay. At one point I had my arm around Max and was just kind of snuggling next to him and things were quiet for a minute and he just said “don’t worry mom everything’s gonna be okay.” I was shocked at how well he sensed my trepidation and went straight to tears. Sweet to have him remind me of all the things that I already knew and challenge me to bring faith back. So grateful for max’s wisdom,sweet sensitivity, and huge heart! You are whole Maxwell!
We’ve been squeezing in every last ounce of warm weather and connection time – feeling so grateful for nature and for each family member and the unique role they play. Today we watched family video clips and did another hike. Grateful to be together. Grateful for fall leaves and fresh breezes. Grateful we live in a day where we can work with modern medicine to release Max’s tight contracted skin and allow his arms and neck to regain their full function. Feels like we’re entering another trust fall – but maybe we’re always in a trust fall, just entering into a little portion where it feels like a bigger drop. The last few weeks with Max off of pain meds and with his normal drive has been heaven to us! Falling. Trusting. Waiting with the utmost assurance that God’s hand will again be revealed. Grateful to know He’s on our right hand and our left with His angels round about us to hold Max and all of us up.