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.
Tuesday, December 16, 2008
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
Friday, November 7, 2008
Nov.7th
Well, today has been a fairly good day. Emma has walked a little and is hoping to wash her hair and take a bath soon. She has had many visitors which is nice because she has been a little down and that helps to take her mind off her current condition. We are still waiting to see the Dr. today because physio and the nurses have cleared her to go but it sounds like the surgeons would like her to stay until tomorrow. Which is fine with us because we think it is a little too soon to go home. I'll keep you posted. C.
Thursday, November 6, 2008
Emma Nov.6th
Sorry to everyone who was checking the blog yesterday. By the time I had a chance to do an update the kiosk was closed. Yesterday went pretty well. Emma was taken off her morphine and had her drain and catheter removed. She was able to sit up and actually got into a chair for about 15min with the pysiotherapist. She did however have a rough night as she couldn't get comfortable and was having enough pain to have trouble sleeping. (She is still on oral meds for pain.) I think what was contributing to her tears in the night was frustration. Just tired of everything.
Today is looking up a little though and she went for a walk with the pysiotherapist and even did 2 flights of stairs. I am a little concerned that she has not had any appetite today and basically has eaten nothing. Her fever seems to have come down and she is off all of her lines today. The surgeon and several other Dr's came in this morning to take a look at her and ask her some questions. He did say that he would be back to talk to us later so I hope we get a chance to chat with him.
I can't say thank you enough for all of your prayers for Emma. God has truly blessed us with all that we asked for in this surgery and she couldn't be making a better recovery. I will try to update again tomorrow.
C.
Today is looking up a little though and she went for a walk with the pysiotherapist and even did 2 flights of stairs. I am a little concerned that she has not had any appetite today and basically has eaten nothing. Her fever seems to have come down and she is off all of her lines today. The surgeon and several other Dr's came in this morning to take a look at her and ask her some questions. He did say that he would be back to talk to us later so I hope we get a chance to chat with him.
I can't say thank you enough for all of your prayers for Emma. God has truly blessed us with all that we asked for in this surgery and she couldn't be making a better recovery. I will try to update again tomorrow.
C.
Tuesday, November 4, 2008
Another Day
Today we have been with Emma all day and she has done very well. She is still a little groggy with the morphine but she is making her requests known and is already requesting a movie. She is recovering well and she was moved to the ward and out of ICU this morning. She does have a bit of a fever and a slightly elevated white blood cell count and is on atibiotics to ward off any infection. Many different hospital workers have been in to see her today for various reasons so she is pretty tired now. I will update again soon. Thanks again for all of your prayers and well wishes. We love you all.
Keith and Corinna
Keith and Corinna
Monday, November 3, 2008
Our Brave Little Girl
Psalm 4:8 In peace I will both lie down and sleep, for Thou alone, O Lord, dost make me to dwell in safety.
This is a special verse that was given to us by two different people yesterday and I will remember it always as it couldn't have been more appropriate for this day. And,today this is what the Lord has done. Emma has come out of her surgery and all is well. We arrived this morning after a bit of a tearful start at Children's at 6:30am. Emma was a little nervous but really, all things considered, she did really well. We were checked in and then the nurses and neuro monitoring people got to work , perparing Emma for her surgey and applying electrodes to her head to moniter her neuro pathways during surgery. They gave her some Ativan to help her relax and she did relax.
I went with Emma into the OR and stayed with her until she was asleep. She was so brave and did really with the IV and all. I placed a kiss in her hand and told her to keep it with her. It was so hard to leave her there even though I knew that God was in control and that she was in the hands of some of the worlds best pediatric spine surgeons. Keith and I had a few tears and then decided to go have some breakfast in the cafeteria to kill some time as we weren't quite ready to leave the hospital grounds.We then left and went to a near by mall to buy a special gift for Emma and try to pass the hours. We were a bit jumpy each time one of cell phones rang because we kept thinking it might be the hospital. And, all day praying that we had done the right thing by putting her through a surgery of this magnitude when she ultimately had no symtoms.
We arrived back at Children's at about 2pm, hoping that we had spent away most of the surgery time but we were wrong. At 2pm they told us that it would be at least 2 more hours. (They had previously anticipated a 6 hour surgery.) Finally, at about 5:15 the nurse said that the OR was just finishing and that the Dr.'s would be in to speak to us soon. They came and talked to us at about 5:30 or so.
They said that everything went really well but that they took their time. They also told us that this was a very complicated surgery. "with out a doubt, one of the most complicated surgeries I've ever done." He continued to explain that her spinal chord was very tight. Tighter than they had thought. And, there had been a big chunck of bone that had been squishing her spinal chord. Who knows how long she would have remained symptom free. When we heard this news it was a relief to us because then we knew that Emma really did need that surgery. What they did to her is called a decompression and fusion of the C1 to C4 vertebra.(with a rib bone graft and 2 rods and screws.)
After the Dr's left us, we had to wait a while before we could see Emma. When we went in to see her she was still really asleep and did not even stir. She was still intibated and the nurse thought that she would struggle to take that tube out when she was waking up. Keith and I decided that we didn't really want to observe that stuggle and went to have some dinner.
When we came back about 30min later she was still asleep, but when I said to her, "Emma, it's mommy." she opened her eyes and looked at me. She was still intibated and was trying to talk so the nurse took out the tube. She was very tired but laboured to ask us a few quesitons over the next 30min or so. She asked if she was in the ICU, if she had a halo, (she does not! Only a hard plastic neck brace. For that we are so thankful.)She said she wanted to get up and I explained why that was not a good idea. She also asked if there was something on her face(oxygen) and when I told just to relax and breathe deeply. She said "it's kind of hard with this thing on my face." so the nurse took it off and her oxygen levels stayed up on their own. After a little while we decided to leave her to come to Keith's moms because she was doing so well but also because she was labouring to stay awake for us and we wanted her to relax and sleep. Not to mention that we need a good nights sleep too. Again though, I cried, finding it dificult to leave my baby again even though I know she is in great hands with 1 on 1 care.
We will call a little later tonight to check on her and in the morning when we wake up too. ( and maybe even in the middle of the night if I can't sleep.)
All in all, we feel tremendously blessed as everything couldn't have gone more smoothly and we know that so many of you have been praying all day for Emma. We are so greatful for that and I know she is too. So, thank you all so much and may God bless each of you.
Please continue to pray:
1.for Emma to remain infection free.
2. for Emma's fusions to take well.
3 for her adjustment to her new life and body.
4. for our other children (Isaiah, Naomi and Karys) as they are without Emma and their parents right now.
5. Praise for the many prayers God has answered thus far. So far everything has gone so well. Praise God.
This is a special verse that was given to us by two different people yesterday and I will remember it always as it couldn't have been more appropriate for this day. And,today this is what the Lord has done. Emma has come out of her surgery and all is well. We arrived this morning after a bit of a tearful start at Children's at 6:30am. Emma was a little nervous but really, all things considered, she did really well. We were checked in and then the nurses and neuro monitoring people got to work , perparing Emma for her surgey and applying electrodes to her head to moniter her neuro pathways during surgery. They gave her some Ativan to help her relax and she did relax.
I went with Emma into the OR and stayed with her until she was asleep. She was so brave and did really with the IV and all. I placed a kiss in her hand and told her to keep it with her. It was so hard to leave her there even though I knew that God was in control and that she was in the hands of some of the worlds best pediatric spine surgeons. Keith and I had a few tears and then decided to go have some breakfast in the cafeteria to kill some time as we weren't quite ready to leave the hospital grounds.We then left and went to a near by mall to buy a special gift for Emma and try to pass the hours. We were a bit jumpy each time one of cell phones rang because we kept thinking it might be the hospital. And, all day praying that we had done the right thing by putting her through a surgery of this magnitude when she ultimately had no symtoms.
We arrived back at Children's at about 2pm, hoping that we had spent away most of the surgery time but we were wrong. At 2pm they told us that it would be at least 2 more hours. (They had previously anticipated a 6 hour surgery.) Finally, at about 5:15 the nurse said that the OR was just finishing and that the Dr.'s would be in to speak to us soon. They came and talked to us at about 5:30 or so.
They said that everything went really well but that they took their time. They also told us that this was a very complicated surgery. "with out a doubt, one of the most complicated surgeries I've ever done." He continued to explain that her spinal chord was very tight. Tighter than they had thought. And, there had been a big chunck of bone that had been squishing her spinal chord. Who knows how long she would have remained symptom free. When we heard this news it was a relief to us because then we knew that Emma really did need that surgery. What they did to her is called a decompression and fusion of the C1 to C4 vertebra.(with a rib bone graft and 2 rods and screws.)
After the Dr's left us, we had to wait a while before we could see Emma. When we went in to see her she was still really asleep and did not even stir. She was still intibated and the nurse thought that she would struggle to take that tube out when she was waking up. Keith and I decided that we didn't really want to observe that stuggle and went to have some dinner.
When we came back about 30min later she was still asleep, but when I said to her, "Emma, it's mommy." she opened her eyes and looked at me. She was still intibated and was trying to talk so the nurse took out the tube. She was very tired but laboured to ask us a few quesitons over the next 30min or so. She asked if she was in the ICU, if she had a halo, (she does not! Only a hard plastic neck brace. For that we are so thankful.)She said she wanted to get up and I explained why that was not a good idea. She also asked if there was something on her face(oxygen) and when I told just to relax and breathe deeply. She said "it's kind of hard with this thing on my face." so the nurse took it off and her oxygen levels stayed up on their own. After a little while we decided to leave her to come to Keith's moms because she was doing so well but also because she was labouring to stay awake for us and we wanted her to relax and sleep. Not to mention that we need a good nights sleep too. Again though, I cried, finding it dificult to leave my baby again even though I know she is in great hands with 1 on 1 care.
We will call a little later tonight to check on her and in the morning when we wake up too. ( and maybe even in the middle of the night if I can't sleep.)
All in all, we feel tremendously blessed as everything couldn't have gone more smoothly and we know that so many of you have been praying all day for Emma. We are so greatful for that and I know she is too. So, thank you all so much and may God bless each of you.
Please continue to pray:
1.for Emma to remain infection free.
2. for Emma's fusions to take well.
3 for her adjustment to her new life and body.
4. for our other children (Isaiah, Naomi and Karys) as they are without Emma and their parents right now.
5. Praise for the many prayers God has answered thus far. So far everything has gone so well. Praise God.
Thursday, October 30, 2008
God's Special Blessings
Wow! Today was exhausting yet amazing at the same time. We left our home this morning at about 6:30am. Emma was dreading our day at Children's and we tried to assure her that the fear is more of the unknown than anything else and that maybe today's information might help her to relax. We arrived at the hospital at 8am and we were greeting by a nurse who kind of helped us through our day. She began by taking some history from us and giving us info on the practical preparations for the surgery day. After a quick consultation with Dr. M she informed us that he is planning NOT to use the halo for stabilization after the surgery. Emma will be fitted with a brace instead. (as long as he can get adequate stabilization in the neck itself) This is an amazing answer to prayer for us. A really special blessing. Emma was glowing after she heard that news.
After this we headed xray for some additional pictures of Emma's neck.
From there we went to the pre-op clinic where we met with the anesthetist(I should look up how to spell this....later). He was really great and answered a bunch of questions we had. Emma has had some anxiety about the I.V. and he put her at ease by promising that they would make her comfortable no matter what. He was quite funny too.
Next she met her physiotherapist. Emma really liked him(although I don't know if she'll feel the same when he is trying to get her to do something uncomfortable) and he explained that he will work with her on her breathing and leg exercises as well rolling, sitting, walking etc. after surgery.
Our next appointment was at the repiratory clinic. Emma had to do some breathing tests.
After this we went to see the surgeons. We met with Dr.M and another Dr. who would be assisting him in the O.R. He answered many questions about the surgery itself. It is expected to take about 6 hours. Emma will have both an incision on her neck and on her side.(for the rib graft) She is expected to stay in hospital at least until the weekend. Both Dr.'s were amazing and so kind and generous with their time. They also stressed that Monday is Emma's day and they have not scheduled anything else for that day. Emma had been told that she could not do anymore horseback riding due the risk of injury to her but she came armed today with a compromise(after the suggestion by good friends). She asked Dr. M if she might be able to do therapeudic riding. Emma had the information sheet with her and presented it to him. And, to Emma's great joy he agreed that she could do this. Maybe by next summer. Another special blessing from the Lord for Emma. She was so happy and said that this whole day was worth it for that little piece of info. After signing waivers etc. we went and had a bite to eat.
Next was our tour of the ICU. We couldn't believe how busy and loud it was in there. Crazy! We also had the opportunity to see the ward where she will be after the ICU. This helped to make us all feel better I think.
We then went to the lab for some blood work etc. Had a quick visit to the hospital library and finally were done for the day.
We were so encouraged by the prayers that were answered today and thank you all for praying them on our behalf. Amazing!
Please continue to pray: for peace for all of us.
for Emma's health.
for a safe and successful procedure on Monday.
for our other children who will be without us for a few days.
for God to be glorified.
Thank you all so much. We love you.
Keith, Corinna, Emma, and family.
After this we headed xray for some additional pictures of Emma's neck.
From there we went to the pre-op clinic where we met with the anesthetist(I should look up how to spell this....later). He was really great and answered a bunch of questions we had. Emma has had some anxiety about the I.V. and he put her at ease by promising that they would make her comfortable no matter what. He was quite funny too.
Next she met her physiotherapist. Emma really liked him(although I don't know if she'll feel the same when he is trying to get her to do something uncomfortable) and he explained that he will work with her on her breathing and leg exercises as well rolling, sitting, walking etc. after surgery.
Our next appointment was at the repiratory clinic. Emma had to do some breathing tests.
After this we went to see the surgeons. We met with Dr.M and another Dr. who would be assisting him in the O.R. He answered many questions about the surgery itself. It is expected to take about 6 hours. Emma will have both an incision on her neck and on her side.(for the rib graft) She is expected to stay in hospital at least until the weekend. Both Dr.'s were amazing and so kind and generous with their time. They also stressed that Monday is Emma's day and they have not scheduled anything else for that day. Emma had been told that she could not do anymore horseback riding due the risk of injury to her but she came armed today with a compromise(after the suggestion by good friends). She asked Dr. M if she might be able to do therapeudic riding. Emma had the information sheet with her and presented it to him. And, to Emma's great joy he agreed that she could do this. Maybe by next summer. Another special blessing from the Lord for Emma. She was so happy and said that this whole day was worth it for that little piece of info. After signing waivers etc. we went and had a bite to eat.
Next was our tour of the ICU. We couldn't believe how busy and loud it was in there. Crazy! We also had the opportunity to see the ward where she will be after the ICU. This helped to make us all feel better I think.
We then went to the lab for some blood work etc. Had a quick visit to the hospital library and finally were done for the day.
We were so encouraged by the prayers that were answered today and thank you all for praying them on our behalf. Amazing!
Please continue to pray: for peace for all of us.
for Emma's health.
for a safe and successful procedure on Monday.
for our other children who will be without us for a few days.
for God to be glorified.
Thank you all so much. We love you.
Keith, Corinna, Emma, and family.
Tuesday, October 28, 2008
Six Days and Counting
Well, here we are only six days from Emma's surgery. The Lord seems to be asking me if I trust him. I mean really trust him. I have been under the weather for a week now and today Isaiah came home early from school sick. Emma needs to be healthy in order to have her surgery and right now she is. So, we are praying that she will stay that way until surgery day. But even if she doesn't, I have peace that the Lord is in control of all of this and if her sugery is delayed for any reason, this is all part of His plan too. I do feel that I can rest in this fact and it has given me much peace.
On Thursday this week we are to spend the whole dy at Children's to prepare for the surgery. Emma will be seeing her two surgeons,the anestitist(sp) , and her ICU nurse. She will have blood work done, and several other tests. We will be taken on a tour of the ICU, and the ward where she will be afterwards. They said to expect a full day there. I hope that my voice is back by then so that I can do some advocating on Emma's behalf. This is our chance to ask a lot of questions.
I'm sure it will be an exhausting but informative day.
I will probably make another post after Thursday's adventure and then I will try to keep this blog updated daily once Emma has her surgery. So, you'll probably get the greatest amount of info here. Also, many of you have asked if Emma is able to have visitors. I think she can after she is out of ICU.(Maybe by Wednesday) But, I am suggesting that people call the hospital to ask if she is able to have visitors or else check the blog. I don't know if Keith or I will be available to take calls.
We so appreciate having such good friends and family. Especially during a time like this. Thank you so much for your prayers, help, support and love. God bless each of you.
On Thursday this week we are to spend the whole dy at Children's to prepare for the surgery. Emma will be seeing her two surgeons,the anestitist(sp) , and her ICU nurse. She will have blood work done, and several other tests. We will be taken on a tour of the ICU, and the ward where she will be afterwards. They said to expect a full day there. I hope that my voice is back by then so that I can do some advocating on Emma's behalf. This is our chance to ask a lot of questions.
I'm sure it will be an exhausting but informative day.
I will probably make another post after Thursday's adventure and then I will try to keep this blog updated daily once Emma has her surgery. So, you'll probably get the greatest amount of info here. Also, many of you have asked if Emma is able to have visitors. I think she can after she is out of ICU.(Maybe by Wednesday) But, I am suggesting that people call the hospital to ask if she is able to have visitors or else check the blog. I don't know if Keith or I will be available to take calls.
We so appreciate having such good friends and family. Especially during a time like this. Thank you so much for your prayers, help, support and love. God bless each of you.
Thursday, September 25, 2008
Early this week we received a package in the mail from children's containing Emma's surgery date and information. She is scheduled for her spine surgery on Monday Nov. 3. We were shocked at the early date she has been given even though that is what we had been praying for. Somehow having a date that is only 5 weeks away makes it more real. For now we are trying to get prepared in terms of our work, activities, Emma's school work, arranging a place to stay in Vancouver etc. It seems like there isn't much time and I know the 5 weeks will go by so quickly.
Emma is a bit nervous but anxious to get it over with and she still has a sense of humour about it all. She said the other day...."too bad my surgery is after Halloween.... I could dress up as Frankenstein!" It seems in bad taste as I write it now but boy we all had a good belly laugh about painting her face green with the halo and all.
Please pray for our family's health over the next few weeks. Emma has to be healthy to have the surgery. Also, pray for Emma's Dr.s and wisdom for them both as they study exactly how to proceed. Please pray for Emma's safety in surgery. And, for the rest of our family that we will know God's peace,strength and comfort.
Thank you all so much for your support and prayers.
Much love, Corinna and family
Emma is a bit nervous but anxious to get it over with and she still has a sense of humour about it all. She said the other day...."too bad my surgery is after Halloween.... I could dress up as Frankenstein!" It seems in bad taste as I write it now but boy we all had a good belly laugh about painting her face green with the halo and all.
Please pray for our family's health over the next few weeks. Emma has to be healthy to have the surgery. Also, pray for Emma's Dr.s and wisdom for them both as they study exactly how to proceed. Please pray for Emma's safety in surgery. And, for the rest of our family that we will know God's peace,strength and comfort.
Thank you all so much for your support and prayers.
Much love, Corinna and family
Thursday, August 21, 2008
Surgery in Motion
Well, we were all a bit nervous to see Dr. M today. It is always hard to hear the difficult details when it pertains to your child. I had prayed for courage and peace for us and for Emma too and God did answer that prayer. I, in particular felt very calm at our meeting.
Emma only joined us for a few minutes at the beginning to ask a few of her own questions. Can I play water polo? "no" (but she will be able to after her surgery has healed.) Do I already have limited motion in my neck? After some examination Dr.M said "yes, you may not find your loss of motion too noticable." Emma then left the room as she requested to not be a part of our discussions. Although, we do fill her in and she is quite aware of the details of her condition.
Dr.M reminded us again of the risks of the surgery and we discussed the procedure in a bit more detail. We advocated for Emma in regards to the "halo" that he said she would likely have to wear for 6 to 10 weeks after by trying to empress upon him that she would be complient to wear a brace instead. (which he had mentioned before might be a slim possibility). Her surgery will likely take place late fall or around Christmas time. We will have to wait a few weeks for a date. Dr.M told us to be sure to call and check if we didn't hear in a timely fashion.
I asked Dr.M if he and the other Dr. that we had seen prior to the last appointment would be working together on Emma's surgery and found out that he actually is more qualified to deal with Emma's case. His specialty is pediatric genetic spine defects and although this surgery is quite rare, this is what he does. This was when I had to hold back the tears. We had kind of been lost in the shuffle at Children's a few times in the past year but I can see now that it was all part of God's plan. Dr.M is fairly new to Children's and seems to be a good fit for Emma's particular problem. I know that the Lord is taking care of us and knows what we do not.
Emma may still need to see a nerosurgeon to consult before her surgery but that's still to be determined.
For now, we just wait.... The Lord is good. Emma is strong and courageous.
Emma only joined us for a few minutes at the beginning to ask a few of her own questions. Can I play water polo? "no" (but she will be able to after her surgery has healed.) Do I already have limited motion in my neck? After some examination Dr.M said "yes, you may not find your loss of motion too noticable." Emma then left the room as she requested to not be a part of our discussions. Although, we do fill her in and she is quite aware of the details of her condition.
Dr.M reminded us again of the risks of the surgery and we discussed the procedure in a bit more detail. We advocated for Emma in regards to the "halo" that he said she would likely have to wear for 6 to 10 weeks after by trying to empress upon him that she would be complient to wear a brace instead. (which he had mentioned before might be a slim possibility). Her surgery will likely take place late fall or around Christmas time. We will have to wait a few weeks for a date. Dr.M told us to be sure to call and check if we didn't hear in a timely fashion.
I asked Dr.M if he and the other Dr. that we had seen prior to the last appointment would be working together on Emma's surgery and found out that he actually is more qualified to deal with Emma's case. His specialty is pediatric genetic spine defects and although this surgery is quite rare, this is what he does. This was when I had to hold back the tears. We had kind of been lost in the shuffle at Children's a few times in the past year but I can see now that it was all part of God's plan. Dr.M is fairly new to Children's and seems to be a good fit for Emma's particular problem. I know that the Lord is taking care of us and knows what we do not.
Emma may still need to see a nerosurgeon to consult before her surgery but that's still to be determined.
For now, we just wait.... The Lord is good. Emma is strong and courageous.
Thursday, August 7, 2008
Waiting.....
We have an appointment to see one of the spine surgeons on August 21 to discuss Emma's surgery and the Dr. will put in a date request at that time. I have called this week to confirm that the two surgeons have had a chance to review Emma's scans and reports and they have. So... now we wait until Aug. 21. Thank you all for your love and prayers.
Tuesday, July 29, 2008
Fast Forward to July08
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.
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.
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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