Sunday, July 18, 2010
CT - A View of the Inside!
On Thursday this week Emma had a CT scan that her surgeon had ordered after he cancelled her surgery. It was uneventful, though Emma and I had the opportunity to view her pictures and to learn how a CT scan works. Interesting! We will be having a follow up with her Dr. on August 24th to discuss the results. We are enjoing our summer neck brace free and one little thing I am personally thankful for is that I am not trying to wash Emma's hair with her laying on the kitchen counter on her back for the next few weeks! So, so greatful for God's blessing!
Tuesday, June 29, 2010
Healing, an unexpected gift!
Psalm 145:8 The LORD is gracious and full of compassion, Slow to anger and great in mercy.
This has been an amazing day! This verse has been running through my mind for the past few hours. This morning Emma and I headed out for an 11am. Pre-op appointment where they prepare her for her upcoming surgery scheduled for next Friday July 9th. We checked in and went to our usual first stop, X-rays. We waited there as usual and after a while Emma was called in for her turn. We then proceeded to the ortho waiting room where we waited to see Emma's surgeon. Dr. M. came to see us, chatted a bit, examined Emma and took a look at her X-Rays. As he was looking them over he said, "You know, this doesn't look as bad as it did. If this has improved the way that it appears that it has, we won't be doing this surgery! I would like a couple of different views of her spine and then we'll decide." Well, this sent Emma off the deep end! she was so excited that she might not have to have this surgery. I was cautious and telling her not to get too excited just in case. We went back to radiology and had the other X-rays, then back to see the Dr. This time, another surgeon who has seen Emma as well came in with a student to examine her case and X-rays. They were not at this time aware that Dr. M was looking at not doing the surgery. I brought them up to date and they chatted it over. Dr. M was still busy with another patient. After a few minutes, they left the room and we could hear them chatting about Emma out of our sight. We couldn't quite hear, or understand for that matter exactly what they were saying. Another few minutes passed and Dr.M, the student Dr. and the ortho nurse all came into the room. Dr.M. calmly stated, "We are not doing the surgery." And then he went on to expain and show us why. I'll try to recap in my uneducated language here. The reason Emma was having the surgery is due to something I affectionately call "the hinge". Below her last fusion (C1 to C4) she also has a natural (or unnatural, however you want to look at it...she was born with it.) fusion which joins C5 to C6. This left motion between C4 and C5. Motion is good, however in her case she was hyper extending which the Dr.'s called "unstable". This meant that she was at great risk of injury and also that over use could damage her spinal chord because of the unusual extention of her vertebra. The Dr. showed me on the X-ray a disk at C5 that is worn down because she has apparently had the hyper-extention since birth and it was exasperated by the last surgery. Today however, this "hinge" fell within the "normal" range. Enough so that they said that she has gone from unstable to stable. The last scan she had was in April, and that is the one that made the Dr's say, "it's time, we have waited long enough, we have to do something about this." Today, there was no cause for concern and she no longer needs the surgery. Amazed? I am dumbfounded to say the least, it gave me shivers. I asked Dr. M before we left, "Have you ever seen something like this happen before?" He asked me, "You mean vertebra going from this kind of unstabilty to stable? No, I've never seen this before." He then asked me if I had any questions. I was speachless. I just kept saying to Emma, "This is crazy!" I still am processing all of this and feel a little like I'm in shock.
After calling Keith, I spoke to my sister-in-law Megan. She said, "what an answer to prayer." And I said to her, "We never even asked for this!" It is more that an answer to prayer. We were praying for Emma's safety before, during and after her surgery. Not for healing. It just shows how we don't know what we need and God does. How, He gives us gifts that we don't deserve just because He loves us. It reminds that we are always in His sight and that He is actively involved in each of our lives. His hand has touched Emma's body. He has taken what he created and changed it for the better with greater craftmanship than even the best surgeon in the world could have. For Emma, for our family, for our church family, for friends, for the Dr's, and all those who hear this story.
Psalm 103
Praise the LORD, O my soul;
all my inmost being, praise his holy name.
Praise the LORD, O my soul,
and forget not all his benefits---
who forgives all you sins
and heals all your diseases,
who redeems your life from the pit
and crowns you with love and compassion,
who satisfies your desires with good things
so that your youth is renewed like the eagle's.
The LORD works righteousness
and justice for all the oppressed.
He made known his ways to Moses,
his deeds to the people of Israel:
The LORD is compassionate and gracious,
He will not always accuse,
nor will he harbor his anger forever;
he does not treat us as our sins deserve
or repay us according to our iniquities.
For as high as the heavens are above the earth
so great is his love for those who fear him;
as far as the east is from the west,
so far has he removed our transgressions from us.
As a father has compassion on his children,
so the LORD has compassion on those who fear
him;
for he knows how we are formed,
he remembers that we are dust,
As for man, his days are like grass,
he flourishes like a flower of the field;
the wind blows over it and it is gone,
and it's place remembers it no more.
But from everlasting to everlasting
the LORD's love is with those who fear him.
and his righteousness with their children's children--
with those who keep his covenant
and rememver to obey his precepts.
The LORD has established his throne in heaven,
and his kingdom rules over all.
Praise the LORD, you his angels,
you mighty ones who do his bidding,
who obey his word.
Praise the LORD, all his heavenly hosts,
you servants who do his will.
Praise the LORD, all his works
everywhere in his dominion.
Praise the LORD, O my soul.
I will post a short update soon. There is a little more to what happened today and what the future holds for Emma....but hey, who knows, after today, I am reminded that God's ways are not our ways. Anything is possible.
Thank you Lord!
And, thanks to all of you for your many prayers!
We love you!
Corinna and family.
This has been an amazing day! This verse has been running through my mind for the past few hours. This morning Emma and I headed out for an 11am. Pre-op appointment where they prepare her for her upcoming surgery scheduled for next Friday July 9th. We checked in and went to our usual first stop, X-rays. We waited there as usual and after a while Emma was called in for her turn. We then proceeded to the ortho waiting room where we waited to see Emma's surgeon. Dr. M. came to see us, chatted a bit, examined Emma and took a look at her X-Rays. As he was looking them over he said, "You know, this doesn't look as bad as it did. If this has improved the way that it appears that it has, we won't be doing this surgery! I would like a couple of different views of her spine and then we'll decide." Well, this sent Emma off the deep end! she was so excited that she might not have to have this surgery. I was cautious and telling her not to get too excited just in case. We went back to radiology and had the other X-rays, then back to see the Dr. This time, another surgeon who has seen Emma as well came in with a student to examine her case and X-rays. They were not at this time aware that Dr. M was looking at not doing the surgery. I brought them up to date and they chatted it over. Dr. M was still busy with another patient. After a few minutes, they left the room and we could hear them chatting about Emma out of our sight. We couldn't quite hear, or understand for that matter exactly what they were saying. Another few minutes passed and Dr.M, the student Dr. and the ortho nurse all came into the room. Dr.M. calmly stated, "We are not doing the surgery." And then he went on to expain and show us why. I'll try to recap in my uneducated language here. The reason Emma was having the surgery is due to something I affectionately call "the hinge". Below her last fusion (C1 to C4) she also has a natural (or unnatural, however you want to look at it...she was born with it.) fusion which joins C5 to C6. This left motion between C4 and C5. Motion is good, however in her case she was hyper extending which the Dr.'s called "unstable". This meant that she was at great risk of injury and also that over use could damage her spinal chord because of the unusual extention of her vertebra. The Dr. showed me on the X-ray a disk at C5 that is worn down because she has apparently had the hyper-extention since birth and it was exasperated by the last surgery. Today however, this "hinge" fell within the "normal" range. Enough so that they said that she has gone from unstable to stable. The last scan she had was in April, and that is the one that made the Dr's say, "it's time, we have waited long enough, we have to do something about this." Today, there was no cause for concern and she no longer needs the surgery. Amazed? I am dumbfounded to say the least, it gave me shivers. I asked Dr. M before we left, "Have you ever seen something like this happen before?" He asked me, "You mean vertebra going from this kind of unstabilty to stable? No, I've never seen this before." He then asked me if I had any questions. I was speachless. I just kept saying to Emma, "This is crazy!" I still am processing all of this and feel a little like I'm in shock.
After calling Keith, I spoke to my sister-in-law Megan. She said, "what an answer to prayer." And I said to her, "We never even asked for this!" It is more that an answer to prayer. We were praying for Emma's safety before, during and after her surgery. Not for healing. It just shows how we don't know what we need and God does. How, He gives us gifts that we don't deserve just because He loves us. It reminds that we are always in His sight and that He is actively involved in each of our lives. His hand has touched Emma's body. He has taken what he created and changed it for the better with greater craftmanship than even the best surgeon in the world could have. For Emma, for our family, for our church family, for friends, for the Dr's, and all those who hear this story.
Psalm 103
Praise the LORD, O my soul;
all my inmost being, praise his holy name.
Praise the LORD, O my soul,
and forget not all his benefits---
who forgives all you sins
and heals all your diseases,
who redeems your life from the pit
and crowns you with love and compassion,
who satisfies your desires with good things
so that your youth is renewed like the eagle's.
The LORD works righteousness
and justice for all the oppressed.
He made known his ways to Moses,
his deeds to the people of Israel:
The LORD is compassionate and gracious,
He will not always accuse,
nor will he harbor his anger forever;
he does not treat us as our sins deserve
or repay us according to our iniquities.
For as high as the heavens are above the earth
so great is his love for those who fear him;
as far as the east is from the west,
so far has he removed our transgressions from us.
As a father has compassion on his children,
so the LORD has compassion on those who fear
him;
for he knows how we are formed,
he remembers that we are dust,
As for man, his days are like grass,
he flourishes like a flower of the field;
the wind blows over it and it is gone,
and it's place remembers it no more.
But from everlasting to everlasting
the LORD's love is with those who fear him.
and his righteousness with their children's children--
with those who keep his covenant
and rememver to obey his precepts.
The LORD has established his throne in heaven,
and his kingdom rules over all.
Praise the LORD, you his angels,
you mighty ones who do his bidding,
who obey his word.
Praise the LORD, all his heavenly hosts,
you servants who do his will.
Praise the LORD, all his works
everywhere in his dominion.
Praise the LORD, O my soul.
I will post a short update soon. There is a little more to what happened today and what the future holds for Emma....but hey, who knows, after today, I am reminded that God's ways are not our ways. Anything is possible.
Thank you Lord!
And, thanks to all of you for your many prayers!
We love you!
Corinna and family.
Friday, June 25, 2010
Upcoming Surgery
Well, the day is drawing near. We are starting to think about and prepare for Emma's next spine surgery. She is scheduled for July 9th and will be attending her pre-op this coming Tues. June 29th. We are on our way.
Wednesday, February 3, 2010
A New Chapter in Emma's Spine Story
Wow! I haven't had anything to add to Emma's blog since April of last year. I guess that is a good thing as the Lord and kept and preserved Emma as she has enjoyed life being 11 and has been actively training her new dog for agility! She loves her puppy Penny and she has been a source of activity and pleasure for Emma.
The last time we saw Emma's Dr. was in July and he said that things were steady and holding so I didn't really have any new news to share.
Yesterday was Emma's 6 month check up with the surgeon. When we arrived she had her normal xrays and then we waited to see the surgeon. We weren't really sure which of the two Dr's she would see but the surgeon who actully did her surgery came in to see her. Emma was happy about that because she likes him better than the other Dr. He just seems to have a nicer bed side manner which makes him a little easier to talk to. (I think Emma has a little crush on him too)
He carefully examined her xrays as ususal and was taking longer than he regularly does comparing xrays from April, July and now. (Emma and I both knew what was coming) He said then that her upper scoliosis curve is now 57 degrees and the lower curve is 37. This progression is not untypical (is that a word?) and they were expecting it to continue to worsen. He told that us that she is now within the surgical range for her scoliosis but they still want to wait a while before doing anything because she is still so short and they want to give her more opportunity to grow. He is quite confident that he can straighten out her top curve almost completly the way it is now but doesn't want to wait until her last growth spurt because he thinks she will be so crooked then. However, he is still concerned about Emma's "hinge" as we affectionately call it. There is way too much motion in her vertebra between the fusion that they did in Nov. of 08 from C1 to C4 and a natural fusion that she has at between C5 and C6. So, there is a "hinge" between C4 and C5. That hinge has put her spinal chord at risk since her last surgery which we did know. The Dr. however feels that we have waited long enough on this and no longer thinks that we should wait to combine it with her scoliosis surgery. He is still concerned about her losing function in her arms or legs due to injury caused by the motion there. It does look quite misaligned on the xray. So he wants to add to her previous fusion by extending it now to C7 which I believe is her whole cervical spine. He did say that the surgery sould be less involved and her stay in hospital should be a little shorter and she will wear an E coller like before and not a halo. He said, "How does May look for you?" I said "That soon?" He told us that it is not an emergent case but he doesn't want to wait too long and will expedite her for whenever we think is good. I asked if we could do it in June so that she can finish school and participate in the school play. He said that he thought it should be okay but gently reminded us that he cannot guarentee that she will not have adverse affects from waiting. But, he also said that she has been stable since her last surgery so they have no reason to think that will change. So, June it is. I just have to call with the date when when Emma is finished the school play which I didn't have with me at the hospital.
He did ask me if we should go ahead or something like that once he said that he thought maybe he should extend the fusion. I told he that I didn't know and that he is the Dr. I told him that we were still doubting the last surgery while she was in the OR and didn't feel sure that we should have done it until we got the report after surgery. So, I was the wrong person to ask if we should go ahead. I asked him, "Do YOU think we should?" He said yes but, he also shared that he'll probably be driving home from work later wondering if he's made the right decision. Even the Dr.'s are human.
But, having said all that, we are trusting just as before that all things are in the hands of our great God and that he works all things out for his glory and our good. What peace and comfort that brings. Even to Emma. ( She was remarkably accepting of the information she received. She just said she knew it would come sooner or later.) I think that how she handled the news is a blessing also from God. God has kept her in a remarkable way all of her life when we didn't even know what was going on in her body. We are so thankful. So, for those of you who would like to know how you could pray, I'm sure it obvious but please pray for her continued safety over the coming months before her surgery. That her spine will remain stable and that she would not loose any function. We praise and that God for friends and family who support us in this way. Thank you all so much! I will post again when we receive a surgery date.
Love and Blessings,
The Grooms
The last time we saw Emma's Dr. was in July and he said that things were steady and holding so I didn't really have any new news to share.
Yesterday was Emma's 6 month check up with the surgeon. When we arrived she had her normal xrays and then we waited to see the surgeon. We weren't really sure which of the two Dr's she would see but the surgeon who actully did her surgery came in to see her. Emma was happy about that because she likes him better than the other Dr. He just seems to have a nicer bed side manner which makes him a little easier to talk to. (I think Emma has a little crush on him too)
He carefully examined her xrays as ususal and was taking longer than he regularly does comparing xrays from April, July and now. (Emma and I both knew what was coming) He said then that her upper scoliosis curve is now 57 degrees and the lower curve is 37. This progression is not untypical (is that a word?) and they were expecting it to continue to worsen. He told that us that she is now within the surgical range for her scoliosis but they still want to wait a while before doing anything because she is still so short and they want to give her more opportunity to grow. He is quite confident that he can straighten out her top curve almost completly the way it is now but doesn't want to wait until her last growth spurt because he thinks she will be so crooked then. However, he is still concerned about Emma's "hinge" as we affectionately call it. There is way too much motion in her vertebra between the fusion that they did in Nov. of 08 from C1 to C4 and a natural fusion that she has at between C5 and C6. So, there is a "hinge" between C4 and C5. That hinge has put her spinal chord at risk since her last surgery which we did know. The Dr. however feels that we have waited long enough on this and no longer thinks that we should wait to combine it with her scoliosis surgery. He is still concerned about her losing function in her arms or legs due to injury caused by the motion there. It does look quite misaligned on the xray. So he wants to add to her previous fusion by extending it now to C7 which I believe is her whole cervical spine. He did say that the surgery sould be less involved and her stay in hospital should be a little shorter and she will wear an E coller like before and not a halo. He said, "How does May look for you?" I said "That soon?" He told us that it is not an emergent case but he doesn't want to wait too long and will expedite her for whenever we think is good. I asked if we could do it in June so that she can finish school and participate in the school play. He said that he thought it should be okay but gently reminded us that he cannot guarentee that she will not have adverse affects from waiting. But, he also said that she has been stable since her last surgery so they have no reason to think that will change. So, June it is. I just have to call with the date when when Emma is finished the school play which I didn't have with me at the hospital.
He did ask me if we should go ahead or something like that once he said that he thought maybe he should extend the fusion. I told he that I didn't know and that he is the Dr. I told him that we were still doubting the last surgery while she was in the OR and didn't feel sure that we should have done it until we got the report after surgery. So, I was the wrong person to ask if we should go ahead. I asked him, "Do YOU think we should?" He said yes but, he also shared that he'll probably be driving home from work later wondering if he's made the right decision. Even the Dr.'s are human.
But, having said all that, we are trusting just as before that all things are in the hands of our great God and that he works all things out for his glory and our good. What peace and comfort that brings. Even to Emma. ( She was remarkably accepting of the information she received. She just said she knew it would come sooner or later.) I think that how she handled the news is a blessing also from God. God has kept her in a remarkable way all of her life when we didn't even know what was going on in her body. We are so thankful. So, for those of you who would like to know how you could pray, I'm sure it obvious but please pray for her continued safety over the coming months before her surgery. That her spine will remain stable and that she would not loose any function. We praise and that God for friends and family who support us in this way. Thank you all so much! I will post again when we receive a surgery date.
Love and Blessings,
The Grooms
Wednesday, April 15, 2009
A Bend in the Road....So to Speak.
April 14, 2009
We were off to Children's on Tuesday to see Emma's the spine surgeon. Emma had her traditional xray of her neck and spine. While we waited to see the Dr.'s we played with Karys and read her a story. It was a long morning because there was such a long wait in radiology this time but it always interesting to meet and talk to other kids who are there for various forms of scoliosis. Tuesday in ortho is always scoliosis day so all the kids that come that day have scoliosis or some sping issues.
Anyway, we got to see the surgeon that actually did Emma's surgery this time and he was satisfied that the "hinge" has not gotten any worse so we will continue to wait before they correct that problem with surgery. The vertebra that is between her surgical fusion and her congenital one is quite abnormal. Being one vertebra on one side and two on the other. Which he said contributed to the decision to stop her fusion where they did because they are not exactly sure how to tackle that yet in regard to adding that in to a fusion.
An xray was also taken of Emma's whole spine which has not been done for quite some time and he told us that her 34 degree curve is now 51 degrees. He told us before that he expected that it would continue to worsen as she grows but they want to wait as long as possible before they fix it and they will combine that and the neck "hinge" surgery so that it only has to be done once if possible. At any rate, Emma has not really suffered in regards to her worsening curve and is comfortable so far. And, that is a reason to rejoice! So we will see the Dr. again in July to double check her "hinge" and probably ever three months to moniter the situaiton and that is fine with us. Emma asked the Dr. if she can ride her bike now and he said he thought that would be fine! Great! Lots of summer riding for the Groom family! Thank to all for your thoughts and prayers.
We were off to Children's on Tuesday to see Emma's the spine surgeon. Emma had her traditional xray of her neck and spine. While we waited to see the Dr.'s we played with Karys and read her a story. It was a long morning because there was such a long wait in radiology this time but it always interesting to meet and talk to other kids who are there for various forms of scoliosis. Tuesday in ortho is always scoliosis day so all the kids that come that day have scoliosis or some sping issues.
Anyway, we got to see the surgeon that actually did Emma's surgery this time and he was satisfied that the "hinge" has not gotten any worse so we will continue to wait before they correct that problem with surgery. The vertebra that is between her surgical fusion and her congenital one is quite abnormal. Being one vertebra on one side and two on the other. Which he said contributed to the decision to stop her fusion where they did because they are not exactly sure how to tackle that yet in regard to adding that in to a fusion.
An xray was also taken of Emma's whole spine which has not been done for quite some time and he told us that her 34 degree curve is now 51 degrees. He told us before that he expected that it would continue to worsen as she grows but they want to wait as long as possible before they fix it and they will combine that and the neck "hinge" surgery so that it only has to be done once if possible. At any rate, Emma has not really suffered in regards to her worsening curve and is comfortable so far. And, that is a reason to rejoice! So we will see the Dr. again in July to double check her "hinge" and probably ever three months to moniter the situaiton and that is fine with us. Emma asked the Dr. if she can ride her bike now and he said he thought that would be fine! Great! Lots of summer riding for the Groom family! Thank to all for your thoughts and prayers.
Tuesday, January 20, 2009
Jan.20/09 Stepping Forward
Today we were back to see Emma's surgeons after seeing them only one month ago on Dec.16th. They were at that time concerned about the misalignment of the fused part of her spine with the rest of it. We didn't know it at the time but the degree of misalignment in December was 50 degrees which is quite significant putting her spinal chord again in a compromised position. The Dr's were hoping that after a month out of her brace that they would see some improvement in her alignment as her muscles strengthened.
When we arrived today Emma had some more xrays to see if there was any progress. Karys was with us today (Isaiah and Naomi were both at their day program today.) and provided plenty of entertainment for us and the staff as we waited to see the Surgeons. After looking at her xrays they determined that her alignment problem has improved some...from 50 to 32 degrees. This was promising news but not quite enough for the Dr. He explained that her spine is still at risk of injury as before and that she may not resume any sports or the like. (the surgeon who actually did the surgery was not there but there are only 2 pediatric spine surgeons in all of BC and it was his partner that we spoke to today and at our last visit. He is also the one who originally saw Emma. ) As we were looking at her xray he explained that the 3 or 4 vertebra under the fusion are naturally as part of Emma's congenital deformity fused to each other and that left a "hinge" of motion between her surgical fusion and her natural one which is contributing to her alignment issue. I had been thinking after our last visit that they should have maybe fused all of these parts together during her surgery eliminating the "hinge" so I asked the surgeon today about why they didn't do that. He told me that this is one of those things that the two of them (the surgeons) argue about before a surgery like this. They were not really in agreement it seemed but went with the chance that she would be able to keep some mobility in her neck hoping that the problem that developed would not occur. He also said that there isn't another Emma by which to judge these things but in retrospect.....he also said that is why Dr.'s from around the world (Emma's assisting surgeon is from Australia and has been at all her appointments since the surgery.He is a wonderful dr. and will make a fantastic pediatric spine surgeon. Great bedside manner.) come to watch and learn from the two of them. To hopefully do something different should this occur in their practice back home.
The surgeon that we saw today would like to fix this problem with surgery but has said that he would like to wait a little longer due to the twisting that is progressing a little further down. He said the options were to operate in like 3 months and then again in a year for her upper thorasic spine curve and then operate likely one more time a year or two later to fix a lower problem. He suspects that her curves will continue to progress to a point that won't be comfortable at all for Emma as she goes through puberty. Or........the preferable option is that he put it off as long as possible so that she has done some more of her growing so that they can combine all of these corrections at once. He said that her chest deformity will be corrected as well with this surgery and once it is done she will be much straighter afterward including her head. (it is kind of cocked to one side.) She will however then be completely fused and will lose most of her motion in these areas. She is ok with this and truly could care less about the motion already lost. This is the least of her worries. She has just adatped.
We left today feeling hopeful and encouraged. No tears this time and before our customary trip to the hospital Starbucks we went to visit a friend Sofia, from church who is at Children's for a while. It was great to have a little visit with her.
Emma will see one of the surgeons again in two months for another assessment to make sure that she can keep waiting. We should have an update then.
We continue to rest in the fact that God made Emma just as she is and that nothing happens by accident apart from God's purposes and that He has a reason for all that He has done if no other than to glorify Himself. This gives us great comfort.
Psalm 139:13-16
"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 make 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."
God has a plan here with Emma and with each of us. Not one day comes to pass apart from God's purposes including the knitting together of Emma's unique anatamy in my womb.God made her as she is for a purpose and that is the most comforting truth.
Isaiah 46:9-11
"Remember the former things, those of long ago; I am God, and there is no other;I am God , and there is none like me. I make known the end from the beginning, from ancient times , what is still to come. I say: My purpose will stand, and I will do all that I please. From the east I summon a bird of prey; from a far-off land , a man to fulfill my purpose. What I have said, that will I bring about; what I have planned, that will I do.
We are trusting that God is God and He will do what he has purposed to do. For our good and His glory.
Thank you all so much for your prayers and love for Emma and our family. May God bless you.
When we arrived today Emma had some more xrays to see if there was any progress. Karys was with us today (Isaiah and Naomi were both at their day program today.) and provided plenty of entertainment for us and the staff as we waited to see the Surgeons. After looking at her xrays they determined that her alignment problem has improved some...from 50 to 32 degrees. This was promising news but not quite enough for the Dr. He explained that her spine is still at risk of injury as before and that she may not resume any sports or the like. (the surgeon who actually did the surgery was not there but there are only 2 pediatric spine surgeons in all of BC and it was his partner that we spoke to today and at our last visit. He is also the one who originally saw Emma. ) As we were looking at her xray he explained that the 3 or 4 vertebra under the fusion are naturally as part of Emma's congenital deformity fused to each other and that left a "hinge" of motion between her surgical fusion and her natural one which is contributing to her alignment issue. I had been thinking after our last visit that they should have maybe fused all of these parts together during her surgery eliminating the "hinge" so I asked the surgeon today about why they didn't do that. He told me that this is one of those things that the two of them (the surgeons) argue about before a surgery like this. They were not really in agreement it seemed but went with the chance that she would be able to keep some mobility in her neck hoping that the problem that developed would not occur. He also said that there isn't another Emma by which to judge these things but in retrospect.....he also said that is why Dr.'s from around the world (Emma's assisting surgeon is from Australia and has been at all her appointments since the surgery.He is a wonderful dr. and will make a fantastic pediatric spine surgeon. Great bedside manner.) come to watch and learn from the two of them. To hopefully do something different should this occur in their practice back home.
The surgeon that we saw today would like to fix this problem with surgery but has said that he would like to wait a little longer due to the twisting that is progressing a little further down. He said the options were to operate in like 3 months and then again in a year for her upper thorasic spine curve and then operate likely one more time a year or two later to fix a lower problem. He suspects that her curves will continue to progress to a point that won't be comfortable at all for Emma as she goes through puberty. Or........the preferable option is that he put it off as long as possible so that she has done some more of her growing so that they can combine all of these corrections at once. He said that her chest deformity will be corrected as well with this surgery and once it is done she will be much straighter afterward including her head. (it is kind of cocked to one side.) She will however then be completely fused and will lose most of her motion in these areas. She is ok with this and truly could care less about the motion already lost. This is the least of her worries. She has just adatped.
We left today feeling hopeful and encouraged. No tears this time and before our customary trip to the hospital Starbucks we went to visit a friend Sofia, from church who is at Children's for a while. It was great to have a little visit with her.
Emma will see one of the surgeons again in two months for another assessment to make sure that she can keep waiting. We should have an update then.
We continue to rest in the fact that God made Emma just as she is and that nothing happens by accident apart from God's purposes and that He has a reason for all that He has done if no other than to glorify Himself. This gives us great comfort.
Psalm 139:13-16
"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 make 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."
God has a plan here with Emma and with each of us. Not one day comes to pass apart from God's purposes including the knitting together of Emma's unique anatamy in my womb.God made her as she is for a purpose and that is the most comforting truth.
Isaiah 46:9-11
"Remember the former things, those of long ago; I am God, and there is no other;I am God , and there is none like me. I make known the end from the beginning, from ancient times , what is still to come. I say: My purpose will stand, and I will do all that I please. From the east I summon a bird of prey; from a far-off land , a man to fulfill my purpose. What I have said, that will I bring about; what I have planned, that will I do.
We are trusting that God is God and He will do what he has purposed to do. For our good and His glory.
Thank you all so much for your prayers and love for Emma and our family. May God bless you.
Tuesday, December 16, 2008
The Brace Comes Off........News for the Future.
Today we went back to Children's for Emma's post operation 6 week follow up. She was so ready to take off her brace and was nervous and excitied to see the Doctor in anticipation of her freedom.
When we arrived there, she had her usual x-ray and then we waited to see the surgeon. While we were waiting in the room the assisting physician from Emma's surgery came in to see Emma and asked her a few questions while he viewed her X-rays. He said that the surgery site looked good and that her fusion seemed to be healing well. He pointed out though that he would like Emma's surgeon to have a look at the region where the fusion joins the next section of spine because there seemed to be a lack of alignment there. It was to my eye evidant on the X-ray. The Surgeon did confirm that her c1-c4 vertebra where they did the fusion looked great and he was really happy with the safety in that region now. He did say.."I am however, concerned about the part below the fusion." He went on to examine Emma and said that the brace has maybe been a bit of a problem causing Emma to lean forward from the base of the fusion up, causing a misalignment with the c5 and following. He said that she must no longer wear the brace and even said that he was going to keep it but Emma said she wanted to keep it. So, he let her with the promise that she would not put it back on again. He is hopeful that the misalignment will correct itself if she is careful to sit and stand straight with her chin up to strengthen her neck muscles which he hopes in turn will pull the fused part of her spine back. She is to go back to see him Feb.3rd in hopes that taking the brace off and strengthening those muscles will work, otherwise the prognosis looks like she will be heading back to the OR to fix this additional problem. The concern is that her spinal chord is again squished (only lower but as a result of what was already done.) While Emma was sad to hear of this possibility we are optimistic that it will work and glad to know that the critical part of her spine is safe. The Dr. explained today that had Emma suffered an injury to her neck at the base of her skull where her severe stenosis was....she would have died as it was above her breathing centre.
If you have seen Emma since her surgery you probably have noticed that she appears more crooked than she was before and this sadly is the case. She will remain this way. I also asked about Physio but the surgeon said that he doesn't want Physio touching her neck. In one of my Pre-OP posts I mentioned that is was thought that Emma would lose 50% motion up and down and side to side in her neck. This in fact has not really been the case. Her loss here is far greater. She may have lost only 50% up and down but has lost 100% to the right and I'm guessing 65-75% on the left. She has to turn her whole body to look left and right.
The Surgeon also indicated today that we may have some other issues to deal with in the future. He suspects that she will become more twisted as she grows. She has a scoliosis curve in her lower neck that connects to an opposite curve just below where the neck and chest meet and should these get worse as she grows they may need to be repaired. It seems that our spine journey continues but we are thankful to have such a fragile and vital part of Emma's spine repaired.
So,.......Today was bitter sweet for Emma. She was dying to fling that brace off, take a shower by herself, and I told her that she could choose our celebratory dinner tonight. But , she also had a good cry on the way home knowing that she may have to head back to surgery sometime in the near future. I reminded her about what God says in the Bible about not worrying about tomorrow, for each day has enough trouble of it' s own. ( Corinna' s paraphrase.)I know how hard that is to do though. For now, we will enjoy the joy of Christmas as we celebrate the birth of our Lord and Savior! We will continue to entrust Emma to the care of that same Lord for we know that all good and perfect gifts come from Him. He truly has kept her until this time. We feel incredibly blessed!
On another note..... Emma went straight from the hospital to her home school school where she found out that she had all A's and 2B's. Not bad for a kid who had a major cervical spine surgery this term. Amazing!
Thank you all again for your prayers for Emma and our family. Please pray that her not wearing the brace and strengthening those neck muscles helps to put her neck back in place.
We are so greatful for our friends and family and all of your support and prayers.
Blessings, C.
When we arrived there, she had her usual x-ray and then we waited to see the surgeon. While we were waiting in the room the assisting physician from Emma's surgery came in to see Emma and asked her a few questions while he viewed her X-rays. He said that the surgery site looked good and that her fusion seemed to be healing well. He pointed out though that he would like Emma's surgeon to have a look at the region where the fusion joins the next section of spine because there seemed to be a lack of alignment there. It was to my eye evidant on the X-ray. The Surgeon did confirm that her c1-c4 vertebra where they did the fusion looked great and he was really happy with the safety in that region now. He did say.."I am however, concerned about the part below the fusion." He went on to examine Emma and said that the brace has maybe been a bit of a problem causing Emma to lean forward from the base of the fusion up, causing a misalignment with the c5 and following. He said that she must no longer wear the brace and even said that he was going to keep it but Emma said she wanted to keep it. So, he let her with the promise that she would not put it back on again. He is hopeful that the misalignment will correct itself if she is careful to sit and stand straight with her chin up to strengthen her neck muscles which he hopes in turn will pull the fused part of her spine back. She is to go back to see him Feb.3rd in hopes that taking the brace off and strengthening those muscles will work, otherwise the prognosis looks like she will be heading back to the OR to fix this additional problem. The concern is that her spinal chord is again squished (only lower but as a result of what was already done.) While Emma was sad to hear of this possibility we are optimistic that it will work and glad to know that the critical part of her spine is safe. The Dr. explained today that had Emma suffered an injury to her neck at the base of her skull where her severe stenosis was....she would have died as it was above her breathing centre.
If you have seen Emma since her surgery you probably have noticed that she appears more crooked than she was before and this sadly is the case. She will remain this way. I also asked about Physio but the surgeon said that he doesn't want Physio touching her neck. In one of my Pre-OP posts I mentioned that is was thought that Emma would lose 50% motion up and down and side to side in her neck. This in fact has not really been the case. Her loss here is far greater. She may have lost only 50% up and down but has lost 100% to the right and I'm guessing 65-75% on the left. She has to turn her whole body to look left and right.
The Surgeon also indicated today that we may have some other issues to deal with in the future. He suspects that she will become more twisted as she grows. She has a scoliosis curve in her lower neck that connects to an opposite curve just below where the neck and chest meet and should these get worse as she grows they may need to be repaired. It seems that our spine journey continues but we are thankful to have such a fragile and vital part of Emma's spine repaired.
So,.......Today was bitter sweet for Emma. She was dying to fling that brace off, take a shower by herself, and I told her that she could choose our celebratory dinner tonight. But , she also had a good cry on the way home knowing that she may have to head back to surgery sometime in the near future. I reminded her about what God says in the Bible about not worrying about tomorrow, for each day has enough trouble of it' s own. ( Corinna' s paraphrase.)I know how hard that is to do though. For now, we will enjoy the joy of Christmas as we celebrate the birth of our Lord and Savior! We will continue to entrust Emma to the care of that same Lord for we know that all good and perfect gifts come from Him. He truly has kept her until this time. We feel incredibly blessed!
On another note..... Emma went straight from the hospital to her home school school where she found out that she had all A's and 2B's. Not bad for a kid who had a major cervical spine surgery this term. Amazing!
Thank you all again for your prayers for Emma and our family. Please pray that her not wearing the brace and strengthening those neck muscles helps to put her neck back in place.
We are so greatful for our friends and family and all of your support and prayers.
Blessings, C.
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