The latest shorter Spica cast (now above the knee on both legs vs down to the ankle on the problem side) has made a huge difference for Arden. For Avery too. The Anchorage heatwave notwithstanding, they’ve loved playing together outdoors.
Now that Arden is semi-vertical, the girls have also made the happy discovery that they can hug each other again! (See video below.)
This week marks a crucial point in Arden’s recovery. She and Allison return to Seattle Children’s Hospital (SCH) this Thursday, July 11 for the removal of Arden’s Spica cast on Friday, July 12. Since her severe hip dysplasia diagnosis, she’s had 2 major surgeries plus 3 Spicas altogether for a total of 12 weeks!
It’s not exaggerating to describe Arden’s ordeal as a marathon.
If X-rays reveal her hip to be in good shape, she’ll have seen the last of the Spica casts. Dr. Blumberg will fit her for a brace which she’ll still wear 24/7 as she moves into full recovery mode and gets back on her feet again.
Needless to say, we are praying and hoping all goes well.
I hear constantly from friends and family who are praying for Arden and her family and checking for updates as she continues her marathon to recover the full use of her hip and leg. It means the world to us that you are following Arden’s story and are holding her up in prayer until she’s up and running again.
Please join us in praying for a successful visit to SCH this week!
Warm summer days in Anchorage (yes, even in Alaska) are giving Arden and Avery plenty of opportunities to play outdoors, and they are making the most of it. Arden is pressing the limits of the extra mobility her new Spica cast allows. She continues to surprise us all with her readiness to push herself to the next level and to regain her independence.
Nothing passive about this little ezer-warrior!
We are thanking God each day for the fight in her and for her incredibly positive attitude. It’s hard to imagine what she’s endured and is still enduring with such a resilient spirit!
July 12, Arden will be back at Seattle Children’s Hospital for the fourth time when Dr. Blumberg will remove her cast and fit her for a brace. We’re all looking forward to that big moment for her. Who knows what she’ll attempt to do once she’s free of her cast?!
Please do continue to pray for her and for her complete healing as she moves through this final Spica cast stage. And thank you again for your interest, prayers, encouraging messages, and generous support.
Far be it from me to turn down an invitation to a MLB baseball game. Below is the invitation to a Phillies game that Frank sent out to Missio Seminary community, families, and friends. I’m definitely going to this one!
If you live in the Philadelphia area, consider yourself invited.
To all PHANATICS, high and low, near and far, current students, board members, alums, faculty, staff and friends—join the MISSIO family for a Phillies game and tailgate party on 30 July.
The game starts at 7 PM but the tailgate party begins at 5pm. What a great way to enjoy the summer together. This has been a big year in the history of MISSIO Seminary and we need to celebrate together. Let’s have some fun in the sun.
Tuesday, July 30th! 7:00pm Phillies vs San Francisco Giants Citizens Bank Park Plus 5:00pm Tailgate Party
We will all meet at the tailgate party (location TBD) with food, drink and loud music in the parking lot and to get your tickets.
The deadline to purchase tickets is JUNE 25.The cost is only $20 per ticket so please feel free to bring friends, family and neighbors.
As I see it, coming to the game is a MISSIONAL calling!
The Phillies will have a secret weapon this year—my wife, Carolyn Custis James. Why is she a secret weapon?—because wherever Carolyn lives, she sprinkles star dust on the local team and they win the World Series! I am not kidding. When we lived in Southern California, the Dodgers won. When we lived in Florida, the Marlins won. When we lived in Boston, the Red Sox won. And when we lived Philadelphia for grad school, the Phillies won, so her magic works in Philadelphia too. Join us on 30 July and see Carolyn work her magic.
For more information contact: Paul Zazzo Missio Director of Church and Alumni Relations pzazzo@missio.edu
For the record, everything Frank said about me is true. I was even in Chicago when the tide turned for the Cubs in 2016. Still, you need to know that my so-called “star dust” doesn’t work over night. That said, I’m looking forward to a fun evening with Missio family and friends—and a big win for the Phillies. Come join us!
Dr. Blumberg’s progress report following Arden’s recasting on Tuesday, June 11, could not have been better!
He said “her hip looks great” and he is “pleased.” He also said the care of Arden’s cast and skin was “some of the best he’s seen.” Kudos to Alli for that!
Arden has a new pink Spica cast and the freedom to bend both knees, as the cast is from chest to above the knee on both sides. That said, it is still a Spica, and her independent movements remain highly and at times frustratingly limited.
The best part for Arden was that Dr. Blumberg’s team emblazoned a My Little Pony character on the front of her cast (see photo of her cast below). How cool is that!? I’m no My Little Pony expert, although Arden and Avery tried to educate me while I was in Anchorage. Still, if I were to venture a guess, I’d say we’re looking at “Big Blue.” (Somebody correct me if I’m wrong.) At any rate, Arden loves it, and that is all that matters!
On July 12, Arden returns to SCH for the 4th time when Dr. Blumberg will remove this latest and final Spica and fit her for a brace. So four more weeks in a Spica as her healing continues.
Our little one faces a long road to recovery, but we are encouraged by her progress, by her strong and vibrant spirit (she is an ezer-warrior, after all), and by the love, prayers, and support of so many friends and family members. We are thanking God for superb medical care and trusting him for complete healing.
After an unexpected delay of two-weeks, Arden’s recasting is rescheduled for Tuesday, June 11. Seattle Children’s Hospital (SCH) has resolved the air quality problems that forced the closure of their operating rooms and delayed Arden’s recasting. Once again they are open for business.
On Tuesday, Dr. Todd Blumberg will remove the Spica cast Arden has worn with remarkable patience and incredibly good spirits for nearly seven weeks. He plans to replace it with another sightly less restrictive Spica cast (above the knee on both legs). X-rays and a CT scan in the interim show her recovery to be progressing normally.
Any progress is welcome news. But I can tell you Arden won’t like going under again. The fact that SCH lets her choose which flavor (bubble gum, strawberry, etc.) she want to breathe is little compensation for blacking out for the third time. The good news is that her mommy will be right beside her when that happens.
I’ve just returned from two weeks in Anchorage helping out with Arden and her little sister Avery. Three-year-old Avery gave me an enthusiastic report of Arden’s graduation from preschool.
“She got a balloon, a necklace,” [Class of 2019 medal] “a graduation bear, and a ‘terrificate’!”
Arden’s “terrificate” is now prominently displayed on their bedroom wall.
This week, the girls’ other grandmother Hilda Rodriguez (a.k.a. Tata) is in Anchorage from Orlando to help out.
Priceless as my time with Arden and Avery was, it doesn’t remove the seriousness of the battle we’re in for Arden. Every stage comes with apprehension and challenges and demands her resilience. We’ve reached a significant midpoint, but she still faces weeks more of Spica cast, then a brace and physical therapy. Hopefully when we arrive at the finish line, she’ll be up, literally running, and better than ever. But it’s a lot to ask of someone so young. And as I’ve said before, it is a crisis from which any of us who love her would do anything to spare her.
We are grateful for so many who are praying, tracking with us, and who have given so generously to Arden’s GoFundMe. Please pray for safe travels, wisdom and skill for Dr. Blumberg and his team, for Arden’s endurance and healing, and for a positive outcome for Arden.
The month of May brought two significant milestones for Arden.
On May 17 she reached the eagerly-awaited glorious milestone of her 5th birthday! That same day, she graduated from preschool—Class of 2019! She is continuing to do well, despite the limitations of her Spica cast. She even scoots herself around on the floor and remains pretty chipper, considering. So we have a lot to celebrate.
Preschool Graduation–Class of 2019!
But a third May milestone has been eventful in a way we didn’t expect.
We were moving steadily forward to May 28 and the removal of Arden’s Spica cast and recasting in a less restrictive Spica cast. Then late last Friday, Arden’s surgeon phoned to say they were postponing her recasting. Seattle Children’s Hospital has temporarily closed their operating rooms due to air quality problems. Thankfully, just days earlier, a relative who lives in the Seattle area alerted us that this might happen. See “Fungus Scare Closes Operating Rooms at Seattle Children’s Hospital.” Still, we hoped.
Now we are waiting to hear when Arden’s recasting is rescheduled—could be as early as next week or as late as the second week in June. Three more weeks in this first Spica may change the game plan in other ways if everything looks good with the reconstruction and healing of her hip.
I arrived in Anchorage the day after Arden’s birthday (thanks to two days of cancelled flights out of Philly) to celebrate her birthday again and help support Alli with Arden’s care. The plan was for me to remain in Anchorage with Avery while Alli and Arden traveled to Seattle for the recasting. Obviously, those plans are changing too, and other family members will pick up where I leave off. Good thing we have teamwork going.
We can’t thank you enough for your support, words of encouragement, and for praying for Arden. We hope and pray we’re on the home stretch!
We’ll keep you posted. Please keep her in your prayers.
Sometimes Twitter delivers. This twitter thread written by Jonathan Martin (@theboyonthebike) connected with me this past Sunday morning. I’m in Alaska helping my daughter with Arden’s care. Jonathan’s words touched a deep chord with me. They were all I got for church that day. I been reading and re-reading it ever since and sharing it with others. He just returned from South Africa. Perspective helps.
He gave me permission to reprint it here:
“On my way back to OKC in time for The Table tonight (5pm), & both my head & heart are full. It’s funny how sometimes you have to go halfway around the world—just to reconnect with your self.
All the optimism has been slowly beat out of me, which is a way of saying I’m finally learning what it is to be hopeful. Less contingent on particular outcomes, less certain that anything works out okay—more content just bearing witness to the beauty I’ve seen…
…for no other reasons than that I can’t unsee it, & because grace is the only truth that is left to tell. Tender, green, fragile, defiant…the shoot springs up from the stump.
That’s not even something I’ve chosen—life on the other side of dying isn’t something that you choose, just something that is. I don’t think much anymore about what to call what it is I’m doing, or what I want to do. I don’t think that it matters, because adjectives don’t matter.
What I know is that Jesus is the hole at the bottom of the sink that’s always got me swirling, dragging me toward the drain. I don’t try to resist the pull, because Christ is still where the wildness is for me.
We taught a wonderful group how to read Scripture for 5 days this week, & I laughed more than once at just how subversive the content was. The people I was with—folks like @jarrodmckenna, @steve_schallert, Rev. Rene August—are more dangerous than the so-called rebels are.
You can have your evangelicalism, your ex-evangelicalism, your garden variety new age, your right wing fear-mongering & your neoliberalism (or anything else that stops short of the kind of radical economic, political critique that threatens the foundations of everything that is).
To put it more simply: I’ve had the weight of the world on my shoulders long enough to crave some kind of shelter, to wish I could get out of the noise. I’m coming back ready to make noise again. The mischief is back in me. Or in other words—the Spirit.
I want to be where the flames of Pentecost burn the old world down, & with the people that light the matches. I don’t claim to be such a person yet—but I do know such people, & for this I am grateful.”
Saturday morning my iPhone alarm woke me up at 6am–exactly as it did the day before. I was at home in Sellersville, and my life was eerily on repeat…
I went through the same morning ritual. Showered, put on the same outfit, and ate the same breakfast cereal. The same husband was making coffee in the kitchen. He put my same bags in the car, drove the same route to the Philadelphia International Airport, kissed me goodbye, and waved the same sad good-bye as I entered the terminal . . . for the second time in 24 hours.
This crazy repeat was happening to him too.
I went through the same TSA check point. My ticket listed the exact same American Airline flight number. I went through the same wait for my turn to board. The same hassle finding a bin to store my carry-on. The same buckled up and ready for take-off . . .
Then came the same captain’s announcement of “a mechanical problem,” along with the same reassurance that “it shouldn’t take long.” But it did.
There was the same loooong silence while the clock ticked away and the same worried look on passenger faces, including mine. Then came the same follow-up announcement: “They’re looking for a part. Thank you for your patience.”
And for me, the same “Oh no! There’s no way I’ll make my connecting flight.” Same grabbing my bags and exiting the plane.
It’s all pretty surreal.
Friday Frank drove back to the airport to take me home. Today, Delta came to my rescue. But even Delta faced a slight delay when a fuel truck broke down, temporarily blocking the plane from backing out of the gate.
I arrived in Anchorage past bedtime and was glad to call it a day, although I missed seeing our two little grand-ezers, Arden and Avery, who were already sound asleep..
Sunday marks the start my two week stay in Anchorage to help Alli as Arden continues the first phase of her recovery with the Spica cast. She’s is schedule for recasting on May 28. Please keep Arden and the rest of us in your prayers as Arden’s ordeal continues. Pray especially for complete healing!
So for the time being, I’m in beautiful Alaska with our girls. That is, unless my alarm goes off again at 6am tomorrow, and I’m waking up back in Sellersville again, smelling the coffee.
Keep watch dear Lord, with those who work, or watch, or weep this night, and give your angels charge over those who sleep. Tend the sick, Lord Christ; give rest to the weary, bless the dying, sooth the suffering, pity the afflicted, shield the joyous; and all for your love’s sake. Amen.
One of the most beautifully soothing prayers in the Anglican Book of Common Prayer has been on my heart of late. It blankets with prayer the many kinds of things that keep people awake at night. We’ve all known those restless nights when in the silent darkness the mind begins racing and there are no distractions to mute the anxieties and struggles that rob a person of the rest and sleep they desperately need.
While Arden is in this long first recovery phase in a Spica body cast, daytime is her friend. She has things to do, a sister for playtime, family outings (she’s been out a lot), and movies to watch. She’s been a remarkably good sport. But everything changes for our little champ in the night, after she’s snuggly tucked in and the lights go out.
During the night, her Spica cast confinement becomes a battle.
She sleeps, but then when the rest of us would toss and turn, she’s helpless to change her position. Frustration with the power of the cast (much easier to ignore in the daytime) overwhelms in the night. It wakes her up in misery. She’s in the dark and crying for someone—anyone!—to let her out.
At this stage in the healing process, Alli is up multiple times in the night—calming, comforting, reassuring, and helping Arden get back to sleep—deprived of much needed sleep herself.
Daniel Lipsi’s story puts an adult perspective on Arden’s ordeal.
Mercifully, Arden’s not in pain as he was, but he is candid about the terrible discomfort and limitations that the Spica enforced. A nurse’s intervention, imploring the doctors “to ‘have a heart’ and not put [him] in the double spica” spared him of what Arden is experiencing. His single Spica encased only one leg. Even so, he called it a “plaster prison” and speaks of “the long battle to negotiate a bed angle that was the least offensive” to his body.
Arden’s double Spica goes from her chest down to her ankle on the left leg and above the knee on the right. She isn’t negotiating anything. She’s stuck!
So for those who are praying for Arden, please pray for nights of true calm and quiet rest—both for Arden and her mommy.
I’m traveling to Anchorage on Friday, May 17 to help out and will stay with Avery while Arden and Alli return to Seattle Children’s Hospital for Arden’s recasting (May 27-29). Her next Spica body cast will be above the knee on both legs and so slightly less confining.
Thank you! Many thanks to everyone who donated to Arden’s GoFundMe. With some donations made outside of GFM, we are thrilled to report that we’ve reached our goal.
Please keep our little one and her family in your prayers. She has a long way to go before she’s back in action and needs the healing hand of Jesus.
Just received the good news that Arden’s follow-up X-rays taken last Thursday in Anchorage show everything looks great! Dr. Blumberg, Arden’s surgeon at Seattle Children’s Hospital, told Alli to “Keep doing what you’re doing.”
We are thanking God for this wonderful news and grateful for family and friends who are praying for Arden’s healing.
Carolyn Custis James 