Evangeline is in surgery today for her spine. It has been falling quickly as she has grown since coming home, and has fallen to 117*. She has a rare condition called diastomatemyelia, which is a deformity where the spinal column splits and is pierced by a boney spur.
Many of you know that the original plan was to remove the spur and place a veptr which can support the spine and be expanded to promote growth. She is only 4’2″. But during the surgery, she went into spinal shock and lost the use of her legs.
She did regain functioning in her legs, but she is weaker. We had to wait for the nerves to heal, and in the mean time, she was catapulted into puberty and her bones fused, therefore ruling out the veptr.
She has a very short spine and has pulmonary thoracic syndrome due to the limited space for her heart and lungs to expand.
The plan today is to support the spine as much as possible and get some improvement to the deformity, but not completely repair it. Her spinal cord is so delicate that they are afraid to move it much.
The risk of paralysis in this surgery is big for Evangeline due to the delicacy of her cord. And since she has to lie prone, there are increased risks to her brain, eyes, and heart. They’re expecting the surgery to be about 10 hours.
But God.
Here are a few pictures of her this morning.
She is so vibrant and alive and HEALTHY. You should have seen her trying to run on that weaker leg. She even learned to ride a bike a few weeks ago.
It was so hard to let her go. She can’t take the versed to relax her before surgery, so I went into the OR with her while they gave her the gas. She fought it so hard. I just kept telling her I loved her, and we’re going to get though this together. We are so thankful for her life and for the privilege of being her parents.
But God.
And little Livi is home sick with a high fever. I feel so pulled. I wish I could clone myself.
And this may seem like a small thing, but my iPad went black this am and I can’t even turn it on. For the writer that I am, that is catastrophic. Writing keeps me calm and focused. So could you please pray, too, for that simple request as well. It’s not a big deal in the grand scheme of things, but big to me.
But God.
I’m writing this post on my phone
I’ll keep you posted.
Blessings!
I am praying. Thank you for sharing the pictures. She is so brave. Diane and Mark, I cant even imagine if God had not brought you together. The thought of those girls still in the orphanage. Be strong.
praying and thinking of evangelina. my daughter also has diastomatemyelia and had a de-tethering surgery about 2 yrs. ago. she, too, is from china . . . adopted at age 10. i know what you are going through. evangelina is a strong little girl . . . your loving family is where she belongs. prayers for little livi, too!
Praying for your precious daughter as well as all of your other needs. Try holding down the power button and the home buttons simultaneously. Keep holding them down until you see the apple appear and then let go. It may reboot itself.
Thank you for your comment! It is actually working this am. I think the ribbon to the screen is lose because sometimes it works and sometimes it just crashes. But I’m thankful for the moment!
Evangeline had a restful night.
God bless you and thank you for your comments!
Diane
Dear Diane,
How hard it must have been for you to watch Evangeline go under… You were told it is going to be a long and risky surgery, yet life saving. And still, you don’t want your child that is so healthy and happy, to suffer and recover for months. That, and leaving all your other kids that need you too behind.
I remember the last surgery that Evangeline had, where you were absent from home with her. You were so courageous and bonded with Evangeline so tightly.
I know that you can do it again. Be strong for your daughter again. Help her through it, help her recover.
I’ll be thinking of you, Evangeline and the rest of your family a lot, and look forward to your first update post surgery.
Hang in there, you can all do it!
Warm regards, Claudia
Your account of Evangeline’s experience is touching. Although she struggled a bit, as you shared, her expression shows courage and happiness. Little Livi, no doubt, pulled through her illness.
Thank you for your comment, Christina. So many things pulled Evangeline through
Indeed! God did, and He most certainly used her siblings too!
Blessings!
Diane