Callie has been doing well recently. She, of course, loves school and thoroughly enjoys her classmates, teachers and nurses. But one issue we’ve been dealing with the past couple of weeks is back pain. Callie has scoliosis (an “S”-shaped curve in her spine) and kyphosis (another curve in her spine that results in a “hunchback” look). This is nothing new, but it might be becoming more of a problem. Our back muscles hold our spine in place, and if the muscles weaken, the spine can’t remain straight.
As Callie continues to grow, the curves in her back will get worse. This affects her ability to sit, breathe and hold up her head. Callie’s back pain was so constant and severe that we took her to get X-rays last week. We were concerned that she may have fractured part of her spine, simply due to bone weakness all children with SMA have. Fortunately, the X-rays came back negative and we’ve been able to control her pain with medication.
Although we have chosen a palliative approach to Callie’s care, which focuses on comfort and quality of life over procedures that will prolong life, Callie’s pain was severe enough for me to start researching surgical options, particularly rod placement, for correcting the curve in Callie’s spine on the chance that it might add to her quality of life.
Although I had some hope, in the end I found what I expected: Surgery isn’t recommended for children Callie’s age. And although rods have been placed in children Callie’s age and even younger, the long-term effectiveness is still unproven. In addition, there are always risks for infections, respiratory, nutritional and orthopedic complications with this surgery. I also discovered that the non-invasive approach to scoliosis, a back brace, doesn’t prevent scoliosis – it doesn’t even delay the progression.
Surgery would put Callie through a major procedure that has no scientifically proven benefit, cause her tremendous pain and put her at risk for developing serious complications.
This disease is relentless. I wish we could save her from it, but we can’t. The past few weeks have provided yet another reminder that Callie will be healed someday, but it won’t be here.
Have you ever thought of trying an upper cervical specialist? There is one in Kernersville who uses a specified technique to correct the upper vertebrae, Atlas and Axis. The idea is that if you correct those, the rest of the spine will follow suit. It is non-invasive and different from any chiropractor I’ve been to. Just a suggestion. If you want more info, email me.
In the meantime we pray strength and joy for Callie and all of your precious family.
Just know that I continually keep your family in my thoughts and prayers, especially as I see Lyman and Carol, and although they seem fine, I know the thought of a grandchild that suffers so weighs on them heavily. So glad y’all are able to have family gatherings with all the “grands”!
When we lost Tucker, the pain was so great that we didn’t know how we could manage, but through support from famil
y, friends, and reliance on our faith, we take each day as it comes and lean on God for strength and comfort.
Y’all have had quite a journey, and I know how God has been your strength and rock. Pray that God will supply all your needs. Debbie
Praying for your sweet daughter!
My prayers are with Callie. She will be fine soon.
Sweet Callie is so fortunate to have you all as her family. I pray she can finish the school year with minimal pain and enjoy the time with her friends. My thoughts & prayers are with you!
Oh, how I grieve with you. You guys are awesome. I can tell from each and every picture you post that despite everything, Callie is a very happy little girl. You have given her a wonderful life. And, she has been a blessing to you. I pray so much for you guys.
I pray for healing this side of eternity, but I also pray for God’s strength for you all no matter what.
Much love,
Nina
May God bless and keep you all in His gentle care during this journey. I know it is not an easy one to make. <3
Prayers for Callie and all of you!
Dear Christy and Nathan,
We appreciate your giving this honest, painful appraisal of Callie’s condition. We pray for you and for Callie and the boys in the face of this discouraging news. You probably are learning the truth and significance of Matthew 6:34: “Therefore do not be anxious about tomorrow, for tomorrow will be anxious for itself. Let the day’s own trouble be sufficient for the day.”
God bless you all.
Lawrence and Pansy