I have been wanting to write this post for a week now but seem to have been faced with so many things that stopped me from doing so. Important, urgent things like my dad having a heart attack and finding out that he will be having bypass surgery in the next couple of weeks. But, things have settled down a bit at the moment and I so want to share here the news of Emma's six week check!
Emma and I headed down to Children's last week to see her surgeon for her first post op appointment. I was looking forward to seeing (on the inside) how things were healing for Emma. There was a long wait today to get through the normal wait, xray, wait, wait in a different room, and then to see the Dr. Emma and I were laughing a lot and making funny jokes. Our family is known to remember and repeat funny lines from shows, you tube, etc. and we kept finding things to say them to while we were waiting. When Emma's Dr.came in he said, "I heard you two were getting pretty rowdy in here!" So funny! That just made us laugh more. He was totally joking but that made it funnier.
Anyhow, he chatted with Emma about how she has been feeling, examined her and discussed that she should just keep to walking for now and not to add any other activities yet. He also decided to send her for Phsyio to help loosen her shoulder and neck muscles. He is happy so far with how everything looks.
I was curious, as were some of our friends who have asked me, where exactly do they put the bone that they hope will fuse her spine together. So I asked him. I think he misunderstood what I was asking about because he brought up an xray that they took while Emma was still in surgery. It had to do with the top 87 degree curve and where they removed that whole vertebral column. They actually did remove that whole thing. probably 3 or 4 verteba worth leaving only her spinal chord during they surgery. The xray he showed us was during that time and showed two small temporary rods that held her spine in that area until he was able to build the bone back in around her spinal chord. Crazy! He told us that usally during surgery, there is musc playing, people are chatting a bit etc. but they have a special code when everything has to be completely quiet except for communication about the surgery. Emma was one of those times. After telling us this, he leaned back in his chair and let out a sigh and said, " I don't know what you were all doing on a spiritual level but, it worked." He told us again how it was amazing how she didn't have any bleeding while they were doing all that bone cutting. The anisthetist (sp) even asked during the surgery. "Are you expecting to loose any blood?" They were, but it never happened! Emma's Dr. relayed to us how even Emma's recovery was remarkable. The staff at the hospital couldn't believe how little pain she had after all that he had done and even asked the Dr. if he had her mixed up with another patient. He also said, "I can tell you this now that the surgery is over but for 4 or so days leading up to Emma's surgery, I was sweating." He said how he knew that there was a huge element of trust for us to hand over our child to him for him to batter them in the OR for 10 hours. ( He had been worried about the surgery but little did he know that we have a great God who was taking care of all the details) I repsponded with something lame and he said, "It's good, it keeps me humble." I told him how for us, we were not worried. That we trusted him (and God) and that we were atually quite peaceful leading up to the surgery. Even up until that day. He told us that he thought we were really casual and relaxed the morning of the surgery and he found that to be a little weird for him at the time.
"Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God , which transcends all understanding, will guard your hearts and your minds in Christ Jesus." Phil. 4:7
Anyhow, Emma is doing remarkably well and will see her Dr. in another six weeks. We share this with you because we want to bring Glory to God, to share with you how God has answered your and our prayers, to encourage you that God still moves in remarkable ways. It is so easy to get bogged down with all the trials of life but I know that I and our family will be able to look back on these days and remember that God sees us and hears our prayers and is quietly orchestrating all things for our good and His glory even in the body of a young girl, using the hands of a gifted surgeon who knew and could see that God's hands were guiding his hands and all the events around this surgery. Praise the Lord!
Wednesday, September 19, 2012
Saturday, July 28, 2012
Day 8 and 9
Well, I think we've turned a corner. Emma is no longer on the antibiotics and her tummy troubles have subsided some. This is a huge relief! She slept half of each of the last 2 nights in her own bed. She seems to wake up in the middle of the night to take some meds and move to the couch in the living room to give her body a break and assume a new position. She had been slightly tilted to one side due to all the short muscles in her body that were shortened because of her curve and those are very slowly stretching out and she is slowing looking a bit straighter each day.
She was able to take a bath of sorts today and this helps to feel so much better. Tomorrow I will wash her hair again. Also, I made her get up and go outside for a walk down to the "round about" and back this evening. I think this did her a world of good. Tomorrow she will walk there again in the morning with her dad while I take the other kiddos to church. (The treck to Vancouver and back is still a bit much for her.)
Thank you so much to everyone who has visited Emma, brought her some goodies, brought our family a meal while I was with Emma in hospital, or since we've been home (I've been so tired so this has been a blessing to me. ), sent encouraging words, prayed, and cared for our family. We have been blessed.
She was able to take a bath of sorts today and this helps to feel so much better. Tomorrow I will wash her hair again. Also, I made her get up and go outside for a walk down to the "round about" and back this evening. I think this did her a world of good. Tomorrow she will walk there again in the morning with her dad while I take the other kiddos to church. (The treck to Vancouver and back is still a bit much for her.)
Thank you so much to everyone who has visited Emma, brought her some goodies, brought our family a meal while I was with Emma in hospital, or since we've been home (I've been so tired so this has been a blessing to me. ), sent encouraging words, prayed, and cared for our family. We have been blessed.
Thursday, July 26, 2012
Day 6 and 7
Well, we are home and being home has had it's ups and downs for Emma. I can tell that generally she is happier here and that she clearly missed her sibs as much as they missed her. She was thrilled last night to have a home cooked meal and she laughed out loud at something her brother said that frankly wasn't really all that funny but the two of them are so close they are a little lost without each other.
The last two plus days at the hospital Emma has been having tummy troubles. She is having to get up to the bathroom with tummy cramps very often. Last night she was up at least 12 times. As you can imagine, this is quite upsetting to her and disturbs her sleep so much so that she (nor I ) got very much of it. I had mentioned this issue again yesterday to the ortho nurse and she said to call her back today if there was no change. So, I called her this morning. We decided hesitantly that we would take her off the anitbiotics for now until her surgeon is in tomorrow to see if that helps at all. Hopefully this will give her some relief.
The reason that the nurse(and I ) were both hesitant to stop the antibiotics is because Emma has some irritation near the top of her incision and they usually aggressivly treat anything like that to prevent deeper infection. They did ALOT of bone cutting and don't want a bone infection!
So, if anyone is still reading this, please pray that Emma does not develop any infection, that her tummy trouble will ease off as this will make her much more comfortable. Thank you so much!
Blessings,
Corinna
The last two plus days at the hospital Emma has been having tummy troubles. She is having to get up to the bathroom with tummy cramps very often. Last night she was up at least 12 times. As you can imagine, this is quite upsetting to her and disturbs her sleep so much so that she (nor I ) got very much of it. I had mentioned this issue again yesterday to the ortho nurse and she said to call her back today if there was no change. So, I called her this morning. We decided hesitantly that we would take her off the anitbiotics for now until her surgeon is in tomorrow to see if that helps at all. Hopefully this will give her some relief.
The reason that the nurse(and I ) were both hesitant to stop the antibiotics is because Emma has some irritation near the top of her incision and they usually aggressivly treat anything like that to prevent deeper infection. They did ALOT of bone cutting and don't want a bone infection!
So, if anyone is still reading this, please pray that Emma does not develop any infection, that her tummy trouble will ease off as this will make her much more comfortable. Thank you so much!
Blessings,
Corinna
Tuesday, July 24, 2012
Day 5 and Diaper Hair :)
So, when I made today's post I forgot a few details. Part of the reason I write this blog is so that Emma will have these memories of this time and that she will see God's love and care for her and how he has so faithfully answered our prayers.
Today we asked Emma's nurse if whe could have her hair washed. She agreed and said that she would come back later to do it. When she came back Emma's friend "Cupcake Shorts" had come to visit but we went ahead with the hairwash anyways. So, the way we thought it would take place is on a tray that is fairly flat and Emma stays lying down on her back for the hair wash but when the nurse came in with the supplies she had a huge package of adult diapers plus (yes, I did say adult diapers!) all the regular hair washing stuff. She proceeded to put some of them under Emma's head since she couldn't find the tray and washed her hair over adult diapers....it's pretty remarkable how much liquid those can hold! Anyway, diaper head....I mean Emma has nice clean hair now and Cupcake Shorts, Emma, her mom and I had a few good laughs about the whole thing. She also got her hair trimmed today since they had spa day here at the hospital!
On a more serious note: The top of Emma's incision is not looking so hot right now. Earlier today they had taken out her IV's and were preparing her for tomorrow's departure but tonight the Dr's wanted her IV reinserted and they put her back on IV antibiotics. They will come and assess it again tomorrow morning. There is a chance that we will not be going home tomorrow....she's pretty upset about that. Please pray that it will get better. Thanks so much!
Today we asked Emma's nurse if whe could have her hair washed. She agreed and said that she would come back later to do it. When she came back Emma's friend "Cupcake Shorts" had come to visit but we went ahead with the hairwash anyways. So, the way we thought it would take place is on a tray that is fairly flat and Emma stays lying down on her back for the hair wash but when the nurse came in with the supplies she had a huge package of adult diapers plus (yes, I did say adult diapers!) all the regular hair washing stuff. She proceeded to put some of them under Emma's head since she couldn't find the tray and washed her hair over adult diapers....it's pretty remarkable how much liquid those can hold! Anyway, diaper head....I mean Emma has nice clean hair now and Cupcake Shorts, Emma, her mom and I had a few good laughs about the whole thing. She also got her hair trimmed today since they had spa day here at the hospital!
On a more serious note: The top of Emma's incision is not looking so hot right now. Earlier today they had taken out her IV's and were preparing her for tomorrow's departure but tonight the Dr's wanted her IV reinserted and they put her back on IV antibiotics. They will come and assess it again tomorrow morning. There is a chance that we will not be going home tomorrow....she's pretty upset about that. Please pray that it will get better. Thanks so much!
Day 5
I think we've turned a corner. Emma is feeling much better today! Her fever has been down all day, she got her hair washed and is wearing her own clothes! Today is spa day here so she will also get her hair trimmed later too! ( I might even get my nails done at the same time. We should be coming home tomorrow if everything stays as is.
Monday, July 23, 2012
Day 4
Emma is much more comfortable today. She was given a muscle relaxer last night and that helped with the muscle pain. She is back on morphine. She has been pretty sleepy from the
meds and has been struggling with a fever all day. She did however take a fairly long walk with physio around the halls here even stopping for a free Blizzard! There are a few perks to being in the hospital. She likely won't come home tomorrow since the fever is still on board and they have yet to determine the cause of it. Anyhow, please pray for the fever to subside but more importantly for the reason she has the fever to go away. Also, for her extreme muscle pain. Thanks so much!
<3
meds and has been struggling with a fever all day. She did however take a fairly long walk with physio around the halls here even stopping for a free Blizzard! There are a few perks to being in the hospital. She likely won't come home tomorrow since the fever is still on board and they have yet to determine the cause of it. Anyhow, please pray for the fever to subside but more importantly for the reason she has the fever to go away. Also, for her extreme muscle pain. Thanks so much!
<3
Sunday, July 22, 2012
Day 3
Well, here we sit 3 days out from Emma's surgery. In some ways the time goes really fast and in other ways it goes so slow.
Today Emma was removed from her mophine IV which she was aiming for because she really wanted to get rid of some of her tubes. Especially the catheter. So, at about 6:30 this morning they took her off after gradually weaning her over the day before. As it turns out the this may have been a tad too early because she has struggled with pain management today. She has been up to go to the bathroom a few times today but can't get comfortable when she gets back to bed. Her muscles are SO sore!
In the early afternoon a orthopeadic Dr. who was on today but also saw Emma yesterday came to see her so we discussed her pain issues. He ordered some more meds for her and some muscle relaxants to help with the muscle spasms. He said that it may take a day or two to turn the corner. He said, that this was not a regular scoliosis surgery. He said it was like that times 5! ( I didn't even know that!) They did ALOT of work in there. The muscle pain is to be expected too because they have taken her very crooked spine and made it pretty straight.
She is well medicated now and is much more comfortable. Stay tuned for day 4.
Blessings
Today Emma was removed from her mophine IV which she was aiming for because she really wanted to get rid of some of her tubes. Especially the catheter. So, at about 6:30 this morning they took her off after gradually weaning her over the day before. As it turns out the this may have been a tad too early because she has struggled with pain management today. She has been up to go to the bathroom a few times today but can't get comfortable when she gets back to bed. Her muscles are SO sore!
In the early afternoon a orthopeadic Dr. who was on today but also saw Emma yesterday came to see her so we discussed her pain issues. He ordered some more meds for her and some muscle relaxants to help with the muscle spasms. He said that it may take a day or two to turn the corner. He said, that this was not a regular scoliosis surgery. He said it was like that times 5! ( I didn't even know that!) They did ALOT of work in there. The muscle pain is to be expected too because they have taken her very crooked spine and made it pretty straight.
She is well medicated now and is much more comfortable. Stay tuned for day 4.
Blessings
Saturday, July 21, 2012
Day 2
Emma had a pretty good day today. She saw a few more visitors, recieved about 5lbs of chocolate, enjoyed winning a new umbrella from EA Games, (they were here doing a special event) had a yummy turkey bacon sandwich and walked 2 times today around the block.(at least on this floor)
She is very tired this evening and they had decreased her Morphine but had to give her a little boost this evening and she wasn't coping with the pain as well. Now she is resting comfortably on her stomach!
So, I suspect that she may have to be careful not to rush things, to enjoy the care that she gets here and mom's undivided attention, all the visitors for a few more days.
I'll keep you posted.
Corinna
Friday, July 20, 2012
"There were just all the right people in the room...."
Day 1
Today was a busy day and Emma did not sleep much. This morning during my choppy hours of sleep at about 6:45 Emma woke me up by throwing her stuffed dog and bunny at me. :) She was whispering because there were others sleeping in the room and I was still not waking up. She said, "Mom, you better get up because the Dr's are coming in 20 min." Only a resident came but I was up and dressed.
Emma watched a movie today (sort of), sat up in bed this morning, dozed on and off, enjoyed a coconut Frappe and stood up with physio this afternoon. It has been a good day of movement for her. She has been having a bit more pain this evening so she maybe has overdone things a bit.
We had a few visitors today too. Some baring good food so that Keith and I didn't have to eat another days worth of cafeteria food. (Thankyou! ) If you come to visit make sure I take your photo and that you sign Emma's white board! :)
This evening around 6:30 Emma's surgeon popped in to see us. We weren't expecting him but he stopped in after another long surgery and still treated us as though we were the only
ones he was here to see. He checked on Emma who at the time was feeling a little more pain than she had been. After hearing all that she had done today he did say to take it easy. I asked him about her curve now and how much correction that he was able to get. He said goodbye to Emma and took Keith and I down the hallway to have a look at her xrays. Seeing those xrays blew my mind! When he first discussed having this surgery he really wanted to do it to make some space for Emma's lungs and heart however he didn't think that he would be able to make her straight, he would just do the best he could. Well, he compared her last xray taken just a couple of weeks ago to the ones from the OR yesterday.
Her top curve 2 weeks ago was 87degrees and the bottom one in the 60's. Yesterday's xray
shows 15 degrees on top and less than 25 on the bottom! Chills. We had no expectation that they would get anywhere near that correction and frankly, neither did he. He told us that "There were just all the right people in the room"! That they just kept little by little cutting away bone, and packing in the gauze and the bleeding was so minimal that they kept going. Everyone in the room was shocked that she hardly lost any blood (too much and they would have stopped where they were. ) and that she didn't need a transfusion. Everything just went right, amazingly right! Keith told our Dr. that lots of people were praying. He said "Thanks, it sure made my job alot easier." God did it....all of it. We have no doubt. It is a special gift to see God's care in such a way. We know this and that is why we have to testify to His faithfulness. To God be the glory great things he has done!
"Now to him who is able to do far more abundanty than all that we ask or think, according to the power at work within us, to him be the glory in the church and in Christ Jesus throughout all generations, forever and ever. Amen" Ephesians 3:20-21
Today was a busy day and Emma did not sleep much. This morning during my choppy hours of sleep at about 6:45 Emma woke me up by throwing her stuffed dog and bunny at me. :) She was whispering because there were others sleeping in the room and I was still not waking up. She said, "Mom, you better get up because the Dr's are coming in 20 min." Only a resident came but I was up and dressed.
Emma watched a movie today (sort of), sat up in bed this morning, dozed on and off, enjoyed a coconut Frappe and stood up with physio this afternoon. It has been a good day of movement for her. She has been having a bit more pain this evening so she maybe has overdone things a bit.
We had a few visitors today too. Some baring good food so that Keith and I didn't have to eat another days worth of cafeteria food. (Thankyou! ) If you come to visit make sure I take your photo and that you sign Emma's white board! :)
This evening around 6:30 Emma's surgeon popped in to see us. We weren't expecting him but he stopped in after another long surgery and still treated us as though we were the only
ones he was here to see. He checked on Emma who at the time was feeling a little more pain than she had been. After hearing all that she had done today he did say to take it easy. I asked him about her curve now and how much correction that he was able to get. He said goodbye to Emma and took Keith and I down the hallway to have a look at her xrays. Seeing those xrays blew my mind! When he first discussed having this surgery he really wanted to do it to make some space for Emma's lungs and heart however he didn't think that he would be able to make her straight, he would just do the best he could. Well, he compared her last xray taken just a couple of weeks ago to the ones from the OR yesterday.
Her top curve 2 weeks ago was 87degrees and the bottom one in the 60's. Yesterday's xray
shows 15 degrees on top and less than 25 on the bottom! Chills. We had no expectation that they would get anywhere near that correction and frankly, neither did he. He told us that "There were just all the right people in the room"! That they just kept little by little cutting away bone, and packing in the gauze and the bleeding was so minimal that they kept going. Everyone in the room was shocked that she hardly lost any blood (too much and they would have stopped where they were. ) and that she didn't need a transfusion. Everything just went right, amazingly right! Keith told our Dr. that lots of people were praying. He said "Thanks, it sure made my job alot easier." God did it....all of it. We have no doubt. It is a special gift to see God's care in such a way. We know this and that is why we have to testify to His faithfulness. To God be the glory great things he has done!
"Now to him who is able to do far more abundanty than all that we ask or think, according to the power at work within us, to him be the glory in the church and in Christ Jesus throughout all generations, forever and ever. Amen" Ephesians 3:20-21
Surgery Day and God Answers Prayers!
Well, here we sit on the other side. The other side of one of the longest days of our lives. It is difficult waiting and waiting and waiting knowing that your child is face down on some crazy apparatus for hour after hour and not really knowing if things are going as intended. However, we were fairly relaxed and trusting God that He would do what is best for Emma. (Romans 8:28)
We arrived here at the hospital at 6:30 am and were quickly seen by several different Dr's and nurses and the monitoring team. (They put markings on her head to later attatch electrodes to that they use to monitor Emma's spine function. Essentially to make sure her spine is still passing signals to all of her body parts.) She was so brave this time and was able to say goodbye to us in that area. Then the long day of surgery began.
While Emma was in surgery Keith and I walked, talked, shopped for a few things for Emma, waited in the waiting room, found out it would be longer, drank coffee, walked some more, read everyones messages of encouragement. (What a blessing to us! )
Emma surgeon came out to speak to us at 6:40pm or so. (We had said goodbye to her at about 7:45 am. and she was done at 6:30pm) Long surgery. Emma's surgeon is a superstar! We know that it was a very intense and long day for him too but he still came out
to speak to us like we were the first people he talked to that day! He told that everything went very, very well. He said that he thought she would be pleased with the results because her chest and shoulder blade deformity should be much less pronounced. The reason the surgery took so much longer irs because some of her vertebra were naturally fused solid, which we already knew, but removing some of that bone and separating them was more involved than he had anticipated having to go all the way around the vertebral colomn. As you can imagine this takes place right around the spinal chord so they had to move very slowly. There were no problems with her monitoring and he is happy with the results so far.
We finally got to see Emma in recovery at about 7:45 or so. She actually looked much better than after her last surgery though her face was very puffy. So puffy that she couldn't open her eyes without using her hands to open them. She was very frustrated by this because she really wanted to see us. The morphene also makes everything blurry. She also had great Angelina Jolie lips. The swelling has gone way down today. :) It was also difficult to talk.
Emma has done very well changing positions through the night and she has even sat up with physio this morning. Everyone is very pleased with her progress.
I am doing fine but suffering from a great amount of sleep deprivtion but I know that the Lord will sustain me through this too. Keith will be coming back today to stay with us.
God has been compassionate and gracious towards our family! We couldn't have asked for a better outcome and Emma is doing so, so well. We are so thankful to the Lord and all he has done. Our (and your) prayers have been answered in the most amazing way! We are acutely aware that God may have not answered our prayers in the way we had wanted but HE did! May He be glorified in all of this.
"I will give thanks to you, O Lord, among the peoples; I will sing praises to you among the nations. For you steadfast love is great above the heavens; your faithfulness reaches to the clouds." Psalm 108:3&4
ps. I think Emma is a little taller now. ;)
We arrived here at the hospital at 6:30 am and were quickly seen by several different Dr's and nurses and the monitoring team. (They put markings on her head to later attatch electrodes to that they use to monitor Emma's spine function. Essentially to make sure her spine is still passing signals to all of her body parts.) She was so brave this time and was able to say goodbye to us in that area. Then the long day of surgery began.
While Emma was in surgery Keith and I walked, talked, shopped for a few things for Emma, waited in the waiting room, found out it would be longer, drank coffee, walked some more, read everyones messages of encouragement. (What a blessing to us! )
Emma surgeon came out to speak to us at 6:40pm or so. (We had said goodbye to her at about 7:45 am. and she was done at 6:30pm) Long surgery. Emma's surgeon is a superstar! We know that it was a very intense and long day for him too but he still came out
to speak to us like we were the first people he talked to that day! He told that everything went very, very well. He said that he thought she would be pleased with the results because her chest and shoulder blade deformity should be much less pronounced. The reason the surgery took so much longer irs because some of her vertebra were naturally fused solid, which we already knew, but removing some of that bone and separating them was more involved than he had anticipated having to go all the way around the vertebral colomn. As you can imagine this takes place right around the spinal chord so they had to move very slowly. There were no problems with her monitoring and he is happy with the results so far.
We finally got to see Emma in recovery at about 7:45 or so. She actually looked much better than after her last surgery though her face was very puffy. So puffy that she couldn't open her eyes without using her hands to open them. She was very frustrated by this because she really wanted to see us. The morphene also makes everything blurry. She also had great Angelina Jolie lips. The swelling has gone way down today. :) It was also difficult to talk.
Emma has done very well changing positions through the night and she has even sat up with physio this morning. Everyone is very pleased with her progress.
I am doing fine but suffering from a great amount of sleep deprivtion but I know that the Lord will sustain me through this too. Keith will be coming back today to stay with us.
God has been compassionate and gracious towards our family! We couldn't have asked for a better outcome and Emma is doing so, so well. We are so thankful to the Lord and all he has done. Our (and your) prayers have been answered in the most amazing way! We are acutely aware that God may have not answered our prayers in the way we had wanted but HE did! May He be glorified in all of this.
"I will give thanks to you, O Lord, among the peoples; I will sing praises to you among the nations. For you steadfast love is great above the heavens; your faithfulness reaches to the clouds." Psalm 108:3&4
ps. I think Emma is a little taller now. ;)
Wednesday, July 18, 2012
Tomorrow is July 19th!
Tomorrow's the big day. We will be up very early as we have to be at Children's by 6:30 am. Thanks to everyone for keeping us in your prayers. I will post here again tomorrow evening once Emma is out of surgery.
Blessings
Blessings
Friday, June 29, 2012
Pre Op June 28 (Emma said to call this post.....I'd Rather Be at Sports Day!)
Well, it has been many months since I have updated this blog but I know that the word is out that Emma is preparing for another major surgery and some of you are wondering what is going on. So, here it is.
Over the past years Emma's spine curve has been steadily increasing. She is now over 80 degrees curved in her thorasic spine and I believe the lumbar curve is over 60 degrees. This has not been a surprise to us or Emma's surgeons as this is a typical progression of scoliosis and they had told us from the start that it would worsen as she grew. She has progressed now to a level where the surgeons want to intervene to protect her internal organs from damage. The S curve she has makes her quite compressed and they do not want her lungs and heart etc to suffer damage from lack of room. So, Emma is scheduled to have this delt with on July 19th Lord willing.
Yesterday we spent the day at Children's going through pre op. This, just like before consists of meeting with the nurses, physio, anasthetic, having blood work done, doing pulmunary function tests, signing paperwork and seeing her surgeon. Everything went smoothly and we met some of the same people that we saw before Emma's last surgery in 2008.
The scope of her surgery (I appologize if you are squeemish.) is to surgically lessen the curve in Emma's thorasic and possibly the top one or two lumbar vertebra. They will do this by removing some bone around her genetic defects that consist of a couple of verteba that are naturally fused together to help to provide a bit of mobility there before he does the surgical fusion as the birth defect fusions in her spine are not the type of fusion that he is trying to achieve. There is another hemi-vertebra that will need to have some bone removed as well. Then, he will try to straigten out the top 80 degree curve as much as possible without compromising the integrity of her spinal chord. He won't know how much this will be until he is in there. We are happy that the Dr. anticipates that her bottom curve will follow suite and that surgery will not be required in that area. We are hopeful that this is the case but again, he will not know for sure until he is doing the surgery. Then they will fuse her thorasic spine using bone which will hopefully grow together. To hold it all in place they will use pins and rods but it is the bone fusion that is essential for a successful surgery. (There is a slim possibility of a failed fusion which could cause the rods to break because believe it or not it is the bone fusing that provide the stability that is neccessary. The Dr. describes the pins and rods as a cast but it is the strength of that the bone growing together that gives Emma the stability she needs.)The surgery is expected to take somewhere between 6 and 10 hours.
Emma will be in hospital for 5 to 7 days depending on how fast she recovers but she is a bit of an overachiever so she will likely get to go home day 5 or so. I will be staying with her in hospital during that time and my mom will look after our other kids when Keith can't be here.
Some of you have asked how you could pray:
1. Please pray for Emma and our family's health over the next few weeks. Emma will not be able to have the surgery if she is sick.
2. For a peace that passes all understanding for Emma and for our family.
3. For our kids and their grandma who will be looking after them.
4. For the surgeon and others that will be helping with her surgery. For wisdom, health and a good night's sleep before the surgery.
5. For a success both in the taking of the fusion and the best possible outcome for Emma.
6.For God to be glorified.
"Beloved, do not be surprised at the fiery trial when it comes upon you to test you, as though something strange were happening to you. But rejoice insofar as you share Christ's sufferings, that you may also rejoice and be glad when his glory is revealed." 1Pet. 4:12-13
Thank you all so much for your prayers and love and care for our family.
Love the Grooms
Over the past years Emma's spine curve has been steadily increasing. She is now over 80 degrees curved in her thorasic spine and I believe the lumbar curve is over 60 degrees. This has not been a surprise to us or Emma's surgeons as this is a typical progression of scoliosis and they had told us from the start that it would worsen as she grew. She has progressed now to a level where the surgeons want to intervene to protect her internal organs from damage. The S curve she has makes her quite compressed and they do not want her lungs and heart etc to suffer damage from lack of room. So, Emma is scheduled to have this delt with on July 19th Lord willing.
Yesterday we spent the day at Children's going through pre op. This, just like before consists of meeting with the nurses, physio, anasthetic, having blood work done, doing pulmunary function tests, signing paperwork and seeing her surgeon. Everything went smoothly and we met some of the same people that we saw before Emma's last surgery in 2008.
The scope of her surgery (I appologize if you are squeemish.) is to surgically lessen the curve in Emma's thorasic and possibly the top one or two lumbar vertebra. They will do this by removing some bone around her genetic defects that consist of a couple of verteba that are naturally fused together to help to provide a bit of mobility there before he does the surgical fusion as the birth defect fusions in her spine are not the type of fusion that he is trying to achieve. There is another hemi-vertebra that will need to have some bone removed as well. Then, he will try to straigten out the top 80 degree curve as much as possible without compromising the integrity of her spinal chord. He won't know how much this will be until he is in there. We are happy that the Dr. anticipates that her bottom curve will follow suite and that surgery will not be required in that area. We are hopeful that this is the case but again, he will not know for sure until he is doing the surgery. Then they will fuse her thorasic spine using bone which will hopefully grow together. To hold it all in place they will use pins and rods but it is the bone fusion that is essential for a successful surgery. (There is a slim possibility of a failed fusion which could cause the rods to break because believe it or not it is the bone fusing that provide the stability that is neccessary. The Dr. describes the pins and rods as a cast but it is the strength of that the bone growing together that gives Emma the stability she needs.)The surgery is expected to take somewhere between 6 and 10 hours.
Emma will be in hospital for 5 to 7 days depending on how fast she recovers but she is a bit of an overachiever so she will likely get to go home day 5 or so. I will be staying with her in hospital during that time and my mom will look after our other kids when Keith can't be here.
Some of you have asked how you could pray:
1. Please pray for Emma and our family's health over the next few weeks. Emma will not be able to have the surgery if she is sick.
2. For a peace that passes all understanding for Emma and for our family.
3. For our kids and their grandma who will be looking after them.
4. For the surgeon and others that will be helping with her surgery. For wisdom, health and a good night's sleep before the surgery.
5. For a success both in the taking of the fusion and the best possible outcome for Emma.
6.For God to be glorified.
"Beloved, do not be surprised at the fiery trial when it comes upon you to test you, as though something strange were happening to you. But rejoice insofar as you share Christ's sufferings, that you may also rejoice and be glad when his glory is revealed." 1Pet. 4:12-13
Thank you all so much for your prayers and love and care for our family.
Love the Grooms
Wednesday, May 11, 2011
Accepting God's Plan
Monday was a full, full day in the Groom household. Sometimes I am amazed at the pace we keep here. No wonder I often crash hard in the evenings. In the morning we made the hour plus treck out to Children's for Emma's 6 monthe checkup which I think was technically more than 6 months. (I am always amazed that it feels like we have just been there yet, another 6 months have passed.
It was not our regular clinic day becaus a few days earlier the hospital had called and asked us to come a day early due to a surgery that her surgeon had to do on Tuesday. Tuesday in ortho at Children's is always the spine clinic. I'm not sure what Monday is, but it was packed! We had to wait 20 minutes to check in! I was thankful for the Disney movie that was playing the X-ray waiting room because on this particular day I had to take Karys and Naomi with us. I had packed school work to do with them but it was so busy that there was no where to work.
Eventually, we got out of X-ray into the other waiting room and in to see Emma's surgeon. He asked a few questions about Emma's physical activies, any changes and how she was feeling in general. She has been well and has been do lyrical dance (She won a year of lessons with a great essay she wrote!), joined the school dragon boat team, and started Taekwondo with the other kids in January! On a good note, her prior fusion "looks great", and the other area of previous concern remains stable and has not changed since last time. Her upper curve has increase almost 10 degrees to 75 degrees and her lower curve is now 53 degrees. She also has a small curve near the very top going the opposite way of the 75 degree one. A true S! Anyhow, her surgeon noted that 10 degrees in 6 months is quite significant which I knew though this increase was not unexpected as he did say that she would get worse as she grew. She has only grown 1/2 cm since last visit but most of her growth has shown in her curvature. He told us that normally at once someone gets to 50 degrees they begin to look at surgical options for straightening but because of her S they feel that if they striaghten out the worst of her curve near the top that she will appear much more crooked than she does now. This would make her X-ray look straight but her body look more crooked. Right now the 3 curvatures are compensating for each other which makes her appear to the eye less crooked than she is. So, her Dr. feels that now we are looking less at straightening her out in the future and more at prohibiting the the curves from getting worse. If, when we go back in 6 months she has increased in curvature another significant amout they will have to intervene and do surgery to prevent her from getting any worse. They are concerned about her lung capacity and will perform a lung capacity test at that time to make sure her curvature is not affecting her breathing. In the mean time he said to watch for any noticable shortness of breath etc. Emma's Dr., who we love, was kind to fill out Emma's papers for her therepeudic riding so she can begin that in the summer. We will see him again in 6 months.
If you have been following Emma's blog for some time, you will know that we (including the Dr.) were optimistic that Emma could be straightened out quite significantly at some point when she stopped growing. The news we got this visit seems as though that is no longer the road to be taken. Emma didn't seem to mind the news but I on the other hand feel sad for her. As a mom, I want what is best for her. I want her to have the opportunity to live in a straight body, to grow taller, to carry babies without pain, to be able to live a full life. I found this, probably one of the hardest visits at Children's. I know I have to let go of those plans I have for her and embace the one that God has for her.
"For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you a hope and a future. - Jeremiah 29:11
It was not our regular clinic day becaus a few days earlier the hospital had called and asked us to come a day early due to a surgery that her surgeon had to do on Tuesday. Tuesday in ortho at Children's is always the spine clinic. I'm not sure what Monday is, but it was packed! We had to wait 20 minutes to check in! I was thankful for the Disney movie that was playing the X-ray waiting room because on this particular day I had to take Karys and Naomi with us. I had packed school work to do with them but it was so busy that there was no where to work.
Eventually, we got out of X-ray into the other waiting room and in to see Emma's surgeon. He asked a few questions about Emma's physical activies, any changes and how she was feeling in general. She has been well and has been do lyrical dance (She won a year of lessons with a great essay she wrote!), joined the school dragon boat team, and started Taekwondo with the other kids in January! On a good note, her prior fusion "looks great", and the other area of previous concern remains stable and has not changed since last time. Her upper curve has increase almost 10 degrees to 75 degrees and her lower curve is now 53 degrees. She also has a small curve near the very top going the opposite way of the 75 degree one. A true S! Anyhow, her surgeon noted that 10 degrees in 6 months is quite significant which I knew though this increase was not unexpected as he did say that she would get worse as she grew. She has only grown 1/2 cm since last visit but most of her growth has shown in her curvature. He told us that normally at once someone gets to 50 degrees they begin to look at surgical options for straightening but because of her S they feel that if they striaghten out the worst of her curve near the top that she will appear much more crooked than she does now. This would make her X-ray look straight but her body look more crooked. Right now the 3 curvatures are compensating for each other which makes her appear to the eye less crooked than she is. So, her Dr. feels that now we are looking less at straightening her out in the future and more at prohibiting the the curves from getting worse. If, when we go back in 6 months she has increased in curvature another significant amout they will have to intervene and do surgery to prevent her from getting any worse. They are concerned about her lung capacity and will perform a lung capacity test at that time to make sure her curvature is not affecting her breathing. In the mean time he said to watch for any noticable shortness of breath etc. Emma's Dr., who we love, was kind to fill out Emma's papers for her therepeudic riding so she can begin that in the summer. We will see him again in 6 months.
If you have been following Emma's blog for some time, you will know that we (including the Dr.) were optimistic that Emma could be straightened out quite significantly at some point when she stopped growing. The news we got this visit seems as though that is no longer the road to be taken. Emma didn't seem to mind the news but I on the other hand feel sad for her. As a mom, I want what is best for her. I want her to have the opportunity to live in a straight body, to grow taller, to carry babies without pain, to be able to live a full life. I found this, probably one of the hardest visits at Children's. I know I have to let go of those plans I have for her and embace the one that God has for her.
"For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you a hope and a future. - Jeremiah 29:11
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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