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.
Wednesday, April 15, 2009
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.
Monday, December 1, 2008
Dec.1, 2008
We are now 1 month post surgery and Emma is doing really well. She is sick of her brace and ready to be free of it. She is back to most of her regular activities but still gets a little fatigued from time to time. Especially in the evening after a long day. She is struggling with some muscle pain that she did not have before the surgery both in her right arm and left shoulder. She appears quite crooked and cannot at this time straighten out her head which tilts toward her left side. When we look back at photos from before the surgery we can see that this tilt was slight, but is now quite pronounced.We are hoping that there may be some change in this after the brace is removed and she can begin to gain some strenght in her neck muscles. We are anticipating seeing the surgeon on Dec. 16th when we are hopful that she will have the brace removed. However, it appears that we will be unable to see the surgeon that actually did the surgery because he will be away and that we will be doing Emma's "post-op" visit with her original surgeon. For this we are a little disappointed because we had wanted to ask some more details about Emma and feel that our questions would be better suited to the Dr. that actually perfomed the operation. We'll see how it all goes. For now, we are praying that her xrays that day show that the surgery has been successful and that she has healed well enough to have that collar off by Christmas.
Sunday, November 16, 2008
Nov.16th
Tomorrow marks the 2 week anniversary of Emma's surgery and she is doing wonderfully well. She is up and about and even went to church today. She does get tired if she is up too long. Tomorrow is a half day on school in our homeschool program and she will go for the first time since her surgery. I will go with her both to protect her from bumps and injury and also in case she gets too tired and needs to come home early.
On Friday we made a treck to Children's and Emma had her staples removed. She did really well. She blew bubbles, which may sound like a babyish thing to do but it gives her something to concentrate on and help to take deep breaths which helps her relax. It's a great strategy that I recommend for any undesirable procedures. I will use it next time one of my children needs a sliver removed. Her wounds are healing and looking better each day. I can't believe how brave she has been. All the grace of God, I know. We got to have a look at her xray while we were there and I have to say that she has some pretty incredible hardwear in there. She will not be going back to see the surgeon again until Dec.16 if all continues to go well. Thanks again to everyone who has been praying for Emma and our family.
On Friday we made a treck to Children's and Emma had her staples removed. She did really well. She blew bubbles, which may sound like a babyish thing to do but it gives her something to concentrate on and help to take deep breaths which helps her relax. It's a great strategy that I recommend for any undesirable procedures. I will use it next time one of my children needs a sliver removed. Her wounds are healing and looking better each day. I can't believe how brave she has been. All the grace of God, I know. We got to have a look at her xray while we were there and I have to say that she has some pretty incredible hardwear in there. She will not be going back to see the surgeon again until Dec.16 if all continues to go well. Thanks again to everyone who has been praying for Emma and our family.
Tuesday, November 11, 2008
Nov. 11th
Here we are a week and a day out from Emma's surgery and she is doing great! She has made a remarkable recovery. She has hardly taken any pain meds and has been up and about all day today. She has had many visitor and they have lifted her spirits. She is a bit uncomfortable with her neck brace and finds it to make her sore and itchy. We were able to accomplish a hair wash at home last night and that always helps to make a person feel better. I don't want to rush things but I think that Emma might be able to get back to a few of her regular activities next week. She will also be going in to Children's next week to have her 40 something staples removed. Emma is a bit nervous about that but I think she will be more comefortable when they are gone and she should be able to have a real shower once the staples are out. We continue to be amazed at the way things have gone for her. No complications and that all of her functions remained in tact all of these years. I will never forget these last couple of weeks and I hope that this time also becomes a time for Emma that she can look back on and see the hand of God on her life. Amazing!
Saturday, November 8, 2008
Saturday Nov. 8th Home Again.
Wow, it feels so good to be in my own home this afternoon. Emma made the transition to home quite well and is relaxing on the couch watching figure skating. She is glad to be home too but very tired.
Yesterday the assisting surgeon came by to see us and we had a little chat about Emma's surgery. He told us that with the compression that she had had on her spinal chord that there was closer to 100% than 50% chance that Emma would have devloped something called myopathy.(a condition that makes walking unstable and loss of fine motor skills ie: inability to pick up a coin off a table) This surgery to decompress her spinal chord was in fact neccesary and we feel so blessed that she never did develop any of those symptoms. Amazing really. God has truly done all of this in His perfect time and we feel confident of that. I really am at a loss for words at the miracle he has done here.
Emma does appear to be a little more crooked than before but her surgeon says that we'll have to watch it as she grows. We will be heading back to Children's sometime next week or after next weekend to have Emma's staples removed. For now we just try to keep her comfortable and expect that she should be able to do a little more each day.
We are so glad to be home and so thankful for the smooth way that everything has gone. We couldn't hav asked for a better surgery and recovery for Emma. Thanks again for all of your prayers for God surely heard and answered all that we asked. We know that God could have easily seen fit to answer in another way.
Also, thank you to everyone who has brought a meal, or treats for our family. To each of you who have looked after our children or offered to. To everyone who came to see Emma in hospital and for all of the lovely gifts for her. She has been quite down and it has lifted her spirits to see you.
Blessings, C
Yesterday the assisting surgeon came by to see us and we had a little chat about Emma's surgery. He told us that with the compression that she had had on her spinal chord that there was closer to 100% than 50% chance that Emma would have devloped something called myopathy.(a condition that makes walking unstable and loss of fine motor skills ie: inability to pick up a coin off a table) This surgery to decompress her spinal chord was in fact neccesary and we feel so blessed that she never did develop any of those symptoms. Amazing really. God has truly done all of this in His perfect time and we feel confident of that. I really am at a loss for words at the miracle he has done here.
Emma does appear to be a little more crooked than before but her surgeon says that we'll have to watch it as she grows. We will be heading back to Children's sometime next week or after next weekend to have Emma's staples removed. For now we just try to keep her comfortable and expect that she should be able to do a little more each day.
We are so glad to be home and so thankful for the smooth way that everything has gone. We couldn't hav asked for a better surgery and recovery for Emma. Thanks again for all of your prayers for God surely heard and answered all that we asked. We know that God could have easily seen fit to answer in another way.
Also, thank you to everyone who has brought a meal, or treats for our family. To each of you who have looked after our children or offered to. To everyone who came to see Emma in hospital and for all of the lovely gifts for her. She has been quite down and it has lifted her spirits to see you.
Blessings, C
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