Rhian's Spinal Cord Surgery

Rhian Grace is having surgery on her spinal cord Wednesday, December 16th.

This summer, Rhian's back surgeon found an abnormality on her MRI. Good news--he may have found what is continuing to make her spine curve. Bad news--it requires a nerve surgery to release the tethered cord. This involves taking off the back of one of her vertebrae, cutting open the spinal cord, and cutting the nerves loose. It is a rather risky surgery, but it must be done, and she is one tough little cookie! She has proven that time and time again…

But to tell you the truth, I am terrified--but I know that God is in control. And I would never let Rhian know that I am scared. I keep telling her, "they do this all the time...God has blessed these doctors with the talent and the knowledge to heal...God will help you to heal...you are special for a reason." But its still hard to put your child through a surgery like this...

For more explaination: http://www.seattlechildrens.org/medical-conditions/chromosomal-genetic-conditions/tethered-spinal-cord/

Dr. Mapstone, the neurosurgeon doing the surgery, says that this should be the miracle that we have been looking for to straighten her spine. In fact, Dr. Puffinbarger, her back surgeon, was thrilled to find the cause of the curve. However, he says he will give her six months after this surgery to start seeing marked improvement—and if she doesn’t then he is going to insert growing rods in her back. He says that it will be necessary for her torso to be long enough for her to have enough lung capacity to support her as an adult. Scary, scary…But I am firm in my belief that this is the miracle that we have been waiting for!

So—on Tuesday, Dec 15th, we will head to OKC to get her checked in to The Children’s Hospital at the OU Medical Center (near the Capital and Bricktown). Her surgery will be Wednesday, Dec 16th at 7:15 am. It will last about two hours, and then she will be in PICU for two days. In the PICU she will have to lay perfectly flat in order to prevent her spinal fluid from leaking from the incision.

Her hospital stay will be 4-6 days (returning home right before Christmas!), and she will not be able to return to school for four weeks. So—we would love to have anyone willing to make the trip to OKC or to the house come to see her! She will be bored, I am sure, and David and I could use the company!

A lot of people have asked how to help. We need activities for Rhian to do while sedentary. She will have to be very still for a very long time. So any puzzles, board games, or DVDs that you would be willing to lend, we would appreciate. Please mark everything with your name, and we will return them when Rhian returns to school mid-January. (I promise everything will be kept out of the little girls’ hands—and therefore unharmed!) Also, Rhian loves to do crafts, to be read to, and she would appreciate visits from friends and family. She will be doing schoolwork at home—so anyone willing to teach math will also be appreciated!! :) jk

I would also love for Rhian to be showered with cards, artwork, photos, etc. from friends and family. She loves cards and would treasure your encouraging words!

The little girls will be cared for while we are in OKC by David’s mom and our friend, Amy. David’s parents and my parents will be down in OKC helping us care for Rhian. David will be coming back and forth, feeding cattle, and therefore, anyone willing to feed my handsome hubby some dinner would get a gold star for being a great friend!!!

I will try to keep everyone updated via Facebook and this blog.

Please pray for the surgeons and for Rhian. We are confident that God has his hand on this situation, and that the surgery will go well, she will heal quickly, and she will grow straight and tall! But Rhian is beginning to get very nervous, and asks some pretty tough questions. Please pray for me to be calm, to have insight, and the right words to say to alleviate her concerns.

Someone recently asked me how I keep from being angry--I'm not sure whether she meant angry at God or for Rhian's life being so difficult. I went through that, but you know, really I have nothing to be angry about. Rhian is a blessing--a blessing that David and I chose to take on. She is wonderful, she makes our lives more full, and my job is to encourage her. My job is to make sure that Rhian is not angry. My job is to make sure that I approach her challenges with a positive perspective so that she will grow into a strong, confident young woman. I am proud of the young lady she has grown into. I am proud of how "normal" she is. I am proud that unless I tell someone, they think that she is my daughter--not my niece--but my daughter...and I love that. She is MY daughter...

Your prayers are appreciated.