Just last week we took Emma back in to see the specialist at Children's. Turns out her regular Dr. was away and she saw "the other surgeon" that her Dr. kept saying he would consult with. When we met the new Dr. he told us that he was very sorry but he had never seen Emma's file before and felt that this was a pretty complicated case to have thrown on his desk without warning. He apologized a few times for having not reviewed Emma's scans before that appointment. He did take a few moments right then though to look at them and noticed right away the problem with her neck and spinal chord. He talked to me in great detail about the risks to Emma if she does not have the surgery.(I gave Emma the option to leave the room, and she took it. I hardly blame her. My heart was pounding and I kept wishing that I could leave the room too.) Including slow loss of function, which cannot be regained, a spinal attack, similar to a heart attack, and slow deterioration of her spinal chord aka sick spine. She is also a greater risk of serious injury and cannot do many of the things she loves ever again. (trampoline, horseback riding etc.) This right now is her greatest upset and sense of loss. Please pray that she will find other interests to take the place of these activities.
He also told us the surgery risks. Besides the normal risks of surgery she will loose 50% of her head motion up and down and 50% of her head motion side to side. He said she had a 1 in 250 chance of some tingling/numbness in her extremities and a 1 in I think he said 1100 chance of paralasis. (I didn't find these statistics very comforting.) I asked him if he was recommending the surgery and he said yes. He also told me that the wait time for this surgery would normally be about 18-24 months but under the circumstances he would like to do it in 4-6 months. This surgery will provide Emma with a reasonable amount of safety in her neck but will still not make it safe enough for her to do the activities that she would like to do. We both had a good cry about this in the parking lot at the hospital. This surgery also most likely requires a halo (which will I think provide the greatest challenge for Emma) for 6-10 weeks.
Keith and I will be seeing the surgeons on August 21 for another consultation and her surgery will be booked at that time.
Please pray:
1. For wisdom for both us and the Dr.'s on how to proceed.
2.That Emma would remain in good health until the pressure can be removed from her spine.We are amazed and so thankful that she has been well thus far.
3.For Emma's and our family's emotional and spiritual health.
4. For peace that passes all understanding.
We trust that God will ultimately use this for Emma's and our good and for His glory and we have seen time and time again His care and faithfulness to our family. Our great God is in control of all these things and He loves us and Emma and He made her just as she is. This brings us much comfort.
Tuesday, July 29, 2008
Psalm 139:14-16
For you created my inmost being; you knit me together in my mother's womb.
I praise you because I am fearfully and wonderfully made; your works are wonderful. I know that full well.
My frame was not hidden from you when I was made in the secret place. When I was woven together in the depths of the earth your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be.
Back in March 07 we discovered that Emma has scoliosis and numerous other congenital birth defects in her spine. Since then she has been monitored at Children's by the orthopedic spine surgeon. Back in Oct. 07 Emma had an MRI and we did not have a follow up appointment until this past Jan. 08. The results of that MRI were quite concerning. The Dr. informed us that Emma's top vertebra is fused to her scull not leaving enough room for her brain stem which is at this time taking an unnatural curve. The Dr. said that she will need surgery "in the coming months" to correct this problem. He said it would most likely involve removing some of the bone in her neck and adding other bone to give her back some stability (grafted from a rib - most likely) She had a CT sacn about a month later which was quite traumatic because she didn't know that they would be doing a contrast scan which required an I.V.
On March 8/08 we had the follow up appointment from the CT and the Dr, told us that he would be consulting with the other surgeon about Emma's case due to it's extremely compicated nature (which he had also told us at other visits but it never seemed as though he had consulted with the other surgeon.) and we were to see him again this July 08.
For you created my inmost being; you knit me together in my mother's womb.
I praise you because I am fearfully and wonderfully made; your works are wonderful. I know that full well.
My frame was not hidden from you when I was made in the secret place. When I was woven together in the depths of the earth your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be.
Back in March 07 we discovered that Emma has scoliosis and numerous other congenital birth defects in her spine. Since then she has been monitored at Children's by the orthopedic spine surgeon. Back in Oct. 07 Emma had an MRI and we did not have a follow up appointment until this past Jan. 08. The results of that MRI were quite concerning. The Dr. informed us that Emma's top vertebra is fused to her scull not leaving enough room for her brain stem which is at this time taking an unnatural curve. The Dr. said that she will need surgery "in the coming months" to correct this problem. He said it would most likely involve removing some of the bone in her neck and adding other bone to give her back some stability (grafted from a rib - most likely) She had a CT sacn about a month later which was quite traumatic because she didn't know that they would be doing a contrast scan which required an I.V.
On March 8/08 we had the follow up appointment from the CT and the Dr, told us that he would be consulting with the other surgeon about Emma's case due to it's extremely compicated nature (which he had also told us at other visits but it never seemed as though he had consulted with the other surgeon.) and we were to see him again this July 08.
Emma - Those beautiful Lips
Isaiah 44:24
Thus says the Lord, your redeemer; And He who formed you from the womb: "I am the Lord, who makes all things, who stretches out the heavens all alone. Who spreads abroad the earth by myself."
Keith's mom (Emma's Nana) Gloria has chosen a special verse for each of her grandchildren when they were born. This was Emma's verse. An accident? Concidence? I don't think so. The Lord knew exactly how Emma was made and gave this verse to Gloria for her.
I have a distinct memory of each of my children when they were born. Each as beautiful as the other and they are ingrained upon my heart forever. When I first laid eyes upon Emma I was struck by her beauty. She had the biggest brown eyes and the most full red lips I had ever seen and she still does. It turns out that her beauty was not only on the outside but more importantly on the inside. I remember thinking when she was still a baby how much joy she had brought to our home and that is still true today.
Emma has always been an easy complient child. (with the exception of a few times where we had to dig in our heels and cross her will-I said conplient, not perfect) She is competative and smart, always trying to keep up (usually successfully) to her big brother and best friend Isaiah. She is a very helpful and loving person and takes great care of her siblings and friends and doesn't fail to notice if mom and dad need a break too. It is a joy to parent her. She is a great piano player, loves horses, soccer, swimming, reading and doing all things that 10 year old girls do. A well rounded kid.
I write all of this info about Emma because this blog in primarily about her spine and up coming surgery and I want to always remember that she is more than her crooked spine and neck! She is all that I have described and so much more. Her spine abnormalities are not who she is though I have no doubt that they will be used by God to make her into the woman that He has designed her to be.
Thus says the Lord, your redeemer; And He who formed you from the womb: "I am the Lord, who makes all things, who stretches out the heavens all alone. Who spreads abroad the earth by myself."
Keith's mom (Emma's Nana) Gloria has chosen a special verse for each of her grandchildren when they were born. This was Emma's verse. An accident? Concidence? I don't think so. The Lord knew exactly how Emma was made and gave this verse to Gloria for her.
I have a distinct memory of each of my children when they were born. Each as beautiful as the other and they are ingrained upon my heart forever. When I first laid eyes upon Emma I was struck by her beauty. She had the biggest brown eyes and the most full red lips I had ever seen and she still does. It turns out that her beauty was not only on the outside but more importantly on the inside. I remember thinking when she was still a baby how much joy she had brought to our home and that is still true today.
Emma has always been an easy complient child. (with the exception of a few times where we had to dig in our heels and cross her will-I said conplient, not perfect) She is competative and smart, always trying to keep up (usually successfully) to her big brother and best friend Isaiah. She is a very helpful and loving person and takes great care of her siblings and friends and doesn't fail to notice if mom and dad need a break too. It is a joy to parent her. She is a great piano player, loves horses, soccer, swimming, reading and doing all things that 10 year old girls do. A well rounded kid.
I write all of this info about Emma because this blog in primarily about her spine and up coming surgery and I want to always remember that she is more than her crooked spine and neck! She is all that I have described and so much more. Her spine abnormalities are not who she is though I have no doubt that they will be used by God to make her into the woman that He has designed her to be.
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