A little history

Over the past week I have had a lot of questions about Kasi and her surgery that is coming up. I am hoping this will answer some of those questions for all of you.

Kasi was born with a coarctation of her aorta, which means there was a narrowing in her aorta. Although there are many babies born with this, Kasi's was rare in the place in which this coarctation was and the collaterals that had grown around it. She ended up having her aorta rebuilt when she was about 3 months old. We were in the hospital for a total of about 60 days and she had 3 surgeries in that time. She was a very sick little baby for a long time.

At this time her aorta is now re-narrowing and the vessels that feed into her major lower extremities are also narrowed. This means that her blood pressure in her upper body is higher than in her lower body. This includes her spine. That brings me to her back and the challenges she has with it.

When Kasi was about 4 I noticed she had a "hump" on her back and took her into the Dr. right away. She was sent to a specialist and we discovered that she had scoliosis. Of course Kasi couldn't have the normal scoliosis, she had to have something very rare in which she would get scoliosis when she was very young. So, at the age of 5 she started wearing a brace 23 hours a day. This has been a long haul with bracing since she is now 12. She currently wears a night brace and a day brace. This has held her to a minimal curve up until a few months ago. Her back has now progressed to a severe curve in which surgery is necessary.

This surgery will be about 5-6 hours long in which she will have 2 rods put into her back. She will have her back fused first and the rods are to hold the fusion in place. With everything that is going on with her heart this might be more challenging than the normal spine surgery. She will gain about 2 inches during surgery, in which she is very excited about, but we are not sure what will happen to her aorta. Since most patience that have this surgery don't have aorta problems there is no way to know what happens when someone is straighten out. Maybe nothing at all will be affected by this, but it still is a concern. Also, the blood supply to her spinal cord because of the narrowing in her aorta makes this a little more difficult as well.

Kasi is having this surgery this coming Friday, Dec. 12, at 7:30 am. She will be in the PICU for 24-48 hours and from there she will go to the floor. She will most-likely have about a 7 day stay in the hospital and the rest of her recovery at home. Kasi will not be attending school for a few months because her back will take about 3-6 months for the fusion to heal. At first she will be able to sit for about 20 minutes and then have to walk or lie down. She will have a few months for recovery and about 6 mos to 1 year for full recovery.

I hope this updates you all a little bit about this path we are on and can help you in your prayers for her. This is a very stressful time for us, but we know and hold on to the fact that God is in control. Nothing that happens will change the fact that He loves us and that He is the Lord!

Please pray for peace in the coming days and weeks. As her mom, and having walked a long road with her before, I already anticipate what is to come. "Be still and know that I am God"....that is what we know, and we cling to this! Kasi's has three verses that are her favorite verses that I would love to share with you. It helps you know a little about who she is as well.



Ps 73:26 My flesh and my heart may fail, but God is my strength of my heart and my portion forever.

Jer. 29:11 "For I know the plans I have for you, "declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future."

Romans 8:37-39 in all these things we are more than conquerors through him who loved us. For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord.



She is strong and is holding on to these things she knows to be true. She has experienced them in the past and will continue to hold on to these truths.