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

"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

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. ;)

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

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

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

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!