Scottish Rite Follow Up

Natalie had her follow up at Scottish Rite yesterday in Dallas. She had a great doctors visit, but for me a little frustrating.

I know I can't plan, that is up to God. I just wish I did have so much uncertainty and waiting with Natalie. I know we have about two more years or so before her next heart surgery and then there is always a possibility of little maintenance surgeries in her future and the possibility of a heart transplant. I guess, I have just been dealing with heart a lot longer then her spine now.

We really do not know any more than what already knew about her spine. She has scoliosis and is missing a few ribs. She is developing great, so that is not holding her back in any way. The problem is they can not get an xray of her standing up yet, so they are not fully sure the degree of the curve. The first xray was a few weeks after her last heart surgery and Natalie was not a wiggly, the xray shows about a 28 degree curve at the time. This time was a little worse, but no much, however Natalie would not stop moving so they had to take 3 xrays before getting a good one. Dr. Richards told us that is hard to really tell at this age and without her standing up right. We go back in 8 months for a follow up.

Dr. Richards said, he really can't tell us what Natalie's future holds. We pray her spine stays the same and the curve does not progress. However if her curve gets worse, they will have to do surgery. Natalie is not a good candidate for a brace or casting. The casting puts a lot of pressure on her chest and she would not be able to handle it. Also, the brace or casting does not work for her type of scoliosis. The surgery would be a spinal fusion where they would put rods in her back. I did learn if she ends up having to have the surgery, if they do it while she is very young, it is not a one time surgery. The main surgery is placing the rods in, then they go back every 8 months to lengthen them. However, they can only lengthen them twice before having to go back in and replacing the rods.

I had a lot of questions for the doctor, but he stopped me after a few and said we just can't answer everything right now and that I was getting way ahead of myself. He was really nice and right. For now, we just have to wait and watch as she grows. I do know that she is in the best place possible she could. Scottish Rite has been fantastic!

I know God has a plan for her, she is so special to us and a little miracle in our eyes. I not going to lie, it is hard for me with all the uncertainty that seems to always be around her and will always be around her. I hate as a mom not being able to protect her more. I just have to keep looking to our good Lord and Savior.

I ask everyone to pray her spine stays the same and the curve not to get worse.