It’s been a while since our last post about Callie’s medical condition. Nathan and I have recently realized that the palliative course of treatment is our long-term plan for Callie. Palliative care focuses on quality of life, even if that means life will be shortened. This is not the only route for SMA, but it’s the one we feel Callie wants.
When Callie saw her pulmonologist a month ago, her pulmonary function values had decreased slightly. That’s not necessarily good but it’s also not of great concern.
Her pulmonologist also did an abdominal X-ray to assess a gastrointestinal issue which has since resolved. It was noted on the X-ray that Callie’s right hip is starting to come out of joint. Callie’s going this Friday for orthopedic X-rays to help map out the problem.
We don’t know what this means for Callie. Our instinct, after having listened to SMA orthopedic experts, is that this hip subluxation is unlikely to be fixed. We’re hoping there will be a non-invasive way to slow this problem which could eventually result in a dislocated hip.
We also recently found out that Callie will no longer have aquatic therapy every week. Callie has reached her peak with water therapy and unfortunately water therapy cannot be done to simply maintain abilities. Plus Callie’s annual evaluation showed that after over a year of therapy, her abilities have declined.
Callie with her frog and hippo, working hard with Katherine.
We will miss seeing Katherine, Callie’s aquatic therapist, every week. Katherine has been a key member of Callie’s health care team. The day before Callie’s first birthday, when we had no idea what was causing Callie’s significant delays, Katherine did Callie’s initial physical evaluation. She urged us to see a neurologist, and she refused to give us a timeline for when Callie would get better — something we were later thankful for.
Katherine was the first to recommend aquatic therapy and she was encouraging after Callie’s devastating diagnosis. Thank you, Katherine, for setting attainable goals — and helping Callie reach them — to keep her in water therapy for as long as possible. And thanks for giving Callie her favorite pool toys, a small frog and a funny-looking hippo, on her last day of therapy.
We plan to gain access to a pool since being out of water therapy will allow her weakness to progress more quickly, and Callie will continue to receive physical therapy at home where her goals will be more short-term.
We believe in being hopeful yet realistic about Callie’s prognosis. We try to concentrate on the positives and not worry about the future.
But every now and then we get this kind of news–that system upon system is buckling under SMA.
It’s always a hard hit because it’s true.
We will continue to pray for Callie and also my Sunday School class of kids will pray for her. The Owen Family
Thank you for sharing your journey so candidly. May God richly bless you all…
Prayers are with Little Callie & Family
My prayers for Callie and for all of you. God bless this wonderful little girl.
Praying for y’all daily! Sending love up to NC for all of you. Let us know if we can do anything & stay strong. Sweet Callie has already touched so many lives with her sweet smile & I can’t go anywhere without being stopped & asked how she is doing! I’m seeing first hand with Daniel’s mom that quality of life is very important– and I really respect you & Nathan for being able to come to that decision. It is not easy to put the selfish urges of wanting someone here longer aside & focus on what will make their life happy & enjoyable.
<3 <3 <3
“So we keep our eyes fixed not on what is seen but on what is unseen. For what is seen is temporal, but what is unseen is eternal.” Praying that the Lord will continue to infuse you with His strength and hope, and that He will allow your eyes to adjust to the “unseen” more and more. Your tenacity through all of this is inspiring, to say the least. Will continue to pray for beautiful Callie, and your whole family as well.
I am glad to hear that you all, when it’s necessary, are thinking about palliative care as a long term plan. Good idea too about going to a pool which can help Callie, one day at a time. I appreciate these blogs which helps me understand the challenges and decisions that are coming your way in what seems to be more frequent now. I pray that you continue to receive strength and encouragement from those who love all of you.
Blessings all around,
Peggy
Peggy
Christy I have been telling all of my co-workers & facebook friends about Callie.. and the run in November!
I would love to take some family pictures of ya’ll… FREE of charge.. while Callie is capable…
Thinking & praying for all of you!
You all are in my prayers and thoughts daily.