When Kasidi Joy came home at 18 months there was a lot we did not know. We didn't have a base line for the effects of her diagnoses of spina bifida and hydrocephalus. There were no images of her brain or spine.
There was a lot we did know! We knew, sadly, she had a dark beginning and someone did not intend for her to survive. But her life was redeemed! She was taken to one of the best orphanages in China and had repair surgery immediately! When she was placed in my arms I received a journal of her life which included photos of her in physical therapy.
We knew her meningocele was in the thoracic (upper) region, and it was predicted that she would not walk or have bladder or bowel continence.
We knew we loved her with all our hearts and would do everything we could to give her the best quality of life, no matter what. And so the exams began, to establish a base line.
We found out whoever performed her surgery did an amazing job. We found out her hips were in alignment. We found out her spinal cord was tethered in the lumbar region, and we had that surgery done last summer. We found out she does have fluid-filled ventricles in her brain so the neurosurgeon referred us to an ophthalmologist to test for pressure on the optic nerve and the full gamut of vision tests.
On Monday we found out her vision is perfect, there is no pressure and she has no indication of hydrocephalus!
Approximately 95% of patients with SB also have hydrocephalus, and it is manageable in most cases, praise the Lord!
Many also deal with continence issues. At this time we are praising God that Kasidi does not have hydrocephalus, and she is fully continent!
They said she wouldn't walk...
but they don't know our GOD.
yahooo!!!! praising God with y'all!!!
ReplyDeletePraise God! Praise God, Praise God!!
ReplyDeleteWe too said yes to a little sweetie with a Spina Bifida diagnosis. The unknowns were concerning but our God was reassuring!
We said YES by faith and he has been SO FAITHFUL! Our sweet girl has learned to walk on her own and needs no therapy and we have faith that she will be continent as well. She is turning 17 months, so not sure at this time.
She is AMAZING and we serve an AMAZING God.
Thank you sweet friend for encouraging me way back when we said "yes!" You are such an inspiration!
I love you sweet sister and your heart for the Lord and his calling for your family!
Hugs!!!
LOVE!!! Go Kasidi Joy...Go God!!
ReplyDeleteOur little guy (home in May) also has SB and we didn't know what to expect, we just knew God told us to adopt him. His Neurosurgeon shakes his head in wonder everytime he sees him and is completely amazed that there are no issues. Silas has been given the go ahead to do whatever he wants in life. God is good.
ReplyDeleteWhat great news! God is so good!!
ReplyDeleteIn the conversations I've had with pediatric SB clinic providers, their networks know of hundreds of little ones with SB adopted from China since 2004, but virtually none have hydrocephalus at the rate of children born with SB here in the US, and while they usually require CIC (clean intermittent catheterization) to be rendered continent (similar to children born in the US), they usually have superior outcomes for sensation, function, and mobility. An adoptive mom to two little girls with SB from China speculated to me that the very involved/more severe spina bifida cases likely aren't repaired after birth at all in China. The appearance of hydrocephalus is unique and I've seen it in Africa, India, and Europe, but these children just aren't seen in any orphanages or care facilities in China. It's too much for my heart to comprehend. The rate of hydrocephalus with SB here in the US used to be closer to 95% and is now closer to about 80% partially due to many more terminations of SB-affected pregnancy and partially due to medical advancements and folic acid awareness. I'm encouraged that the international community is addressing the problem of termination and they are working with young adults from across the globe on creating a positive public perception of SB in a way that the community here in the US is not. It's such a hard issue.
That is what makes me so mad when Dr's suggest you can abort your child due to a medical condition. How do they really know? They don't! Our son is the most amazing child and I am so happy we trusted in the Lord. So happy your daughter is doing amazingly.
ReplyDeleteWow! Unbelievable! What a precious little thing she is!!!
ReplyDeletePraise The Lord!!!!