July 7, 2016
CT Scan
Well this was completely different then what I had pictured. She was given an IV with couple different medicines to relax her so she wouldn't move and then taken into a recovery room until we were released to go home. She was pretty out of it for a while and was pretty funny lol.

June 13, 2016
Surgery #4
Going into this surgery no one knew what was going to happen. The Doctor said he had 6 trays full of equipment in the surgery room and he wasn't sure what he was going to do. With her they have to just see how it looks and play it by ear.
The surgery went well and they were able to put the actual VEPTR in! He said that it is bigger equipment but it should last longer so they won't have to replace it as often or as soon as they did with the rod they had put in the first time and will be able to adjust it more times. We stayed over night in the hospital this time because it was a bigger procedure to replace the equipment. She is in a lot more pain than the other ones but doing pretty well.
The Doctor wants to get a Ct Scan so that he can see exactly what is going on with her. He also said that he will take the scan and make a 3D mold so that he can mess around with it to see what would be best for her situation and what to do from here.

March 31, 2016

Graycee had her check up/ pre surgery appointment today. They did another x-ray. It showed that her shoulders are square with her pelvis and that's exactly what you want. She is not getting worse, which is also obviously the goal. He was unable to tell if the lung was getting any bigger though. One of the clusters on her ribs stayed apart where they cut previously but the other one looks like it fused back together so they will actually cut it out and her ribs will float. Her next surgery they will replace the current rod with a new one, which means they will have to cut the full length again so we will be staying the night in the hospital to watch her and make sure she does well. We won't know until the Dr is in there if they are going to do her spine as well. He will have all the equipment that he needs for it and if he decides she is big enough and needs it right now he will go ahead and do that, which will turn into a 3-4 day stay at the hospital. All in all he said she is doing good and they just have to kinda make it up as they go. He wants to get smaller equipment that is more low profile for her because she is so tiny and he thinks he found some smaller hooks for this next rod. Her next surgery is scheduled for June 13, 2016.

February 12, 2016
Surgery #3
When the Doctor went in and released her rod her ribs actually kind of sprang apart a little bit so the rod was preventing her from stretching this time, which shows that she is growing. Good news! So he pushed her shoulder up and expanded the rod 8 mm. He is really happy with the outcome. He said that you can never actually catch up with something like this but if you can prevent it from getting worse that's really the goal and so far we are preventing from getting worse.  This will be the last time he can use this rod for an adjustment. The next time he will have to switch it out for another one. He wants to do her Vertebrae the next surgery. So she will have a rod along her spine as well as along her ribs that he will just adjust at the same time. He wants to get a ct scan done, he will discuss her at another conference,  and we will go back and see him in 6-8 weeks.

December 28, 2015
Graycee had her check up appointment today. Another x-ray was taken and all was in place and looked good. He wasn't able to tell if the expansion is actually separating her ribs or if it is just from her growing. she is so tiny and the x-ray positions were different from the time before but all in all it was good. He is hoping to get at least one more expansion out of this current rod. She still has clusters fusing her ribs together and he believes that when we do the rod along her spine that will help it the most to straighten her out. He is just waiting for her to grow and get a little bigger so that we are able to do the rod along her spine. There is a magic rod where they can adjust it by using a magnet and it would be an office visit to expand. He is going to a conference in January to discuss her complicated case with more doctors to make sure that they are doing all they can and doing things right for her right now.  

October 23, 2015
Surgery #2
Graycee had her second surgery today. She Loved playing in the waiting room before hand.
























They gave her some medicine to calm her down before they took her away from us and it made her super loopy. She just thought that everything was so funny!











The surgery was scheduled to just take an hour. They had to go in and expand the rod. Everything went real well and they were able to expand it 8 mm. The Doctor was impressed and happy with how well things went.













We were able to go home that day as soon as she was awake. She woke up happy and very excited to be able to ride in the wagon!
When we got her home she was instantly up and running and jumping. We couldn't keep her down and she was so excited to see her sisters! She is so strong and brave and doing very well!

May 18, 2015
Had one last appointment before her surgery! Took another x-ray just to double check to make sure that she was growing and big enough for the surgery to be successful. Went over any last minute questions we had and then headed home. Below is the picture of her x-ray:

June 29, 2015
Surgery Day!
We had to check in at 12:30 she needed some lab work done first and to get her IV in. There is a fish tank in the waiting room and she went crazy over it, loved watching all the fish swimming (which definitely helped with passing the time, we all know how waiting is, right?) Finally our turn and we went back to get her IV and blood work. She was not happy at all with them doing this. We then had to scrub her down and get her gown on her. She was still so very unhappy a nurse finally came in with some bubbles and got her to calm down a little bit.

They took us to another waiting room where she finally fell to sleep. Her surgery was suppose to be at 2 pm but they were running behind in the operating room that she was scheduled for. During our waiting time the Neurologist came and spoke with us explaining that he will be in the surgery to make sure that no nerves would be damaged, he would be right at her head watching the whole time, they were going to have monitors hooked up so that they don't have any damage to anything. They especially needed to watch her shoulder to make sure that when they jacked the ribs apart and pushed up a nerve didn't get pinched and cause damage to her arm. We then spoke with her Orthopedic surgeon he went over the basic procedure with us again and explained that instead of using the actual VEPTR that they were going to use just a smaller rod with some hooks which would be better for her because the VEPTR is so big in comparison to her she is just so tiny as well as he would not be able to get another adjustment with it so using the rod he will be able to use it longer. We then spoke with the Anesthesiologist and he explained he would be in there as well and that they were going to give her something before hand so that she didn't remember being taken from us and have anxiety leaving her parents. Which I really wanted to ask if I could have some, lol! Well they finally took us back at 4:00 pm we walked her as far as we could go with her, they gave her the medicine to forget and I couldn't believe how fast it worked she instantly didn't recognize us and was scared which broke our hearts! Then the wait began.....
Her Dr came out about 6:30 pm to show us a picture of what they had been able to accomplish. They were able to get three different spaces between her ribs! She still has 3 different clusters that didn't break apart like they were suppose to and not sure why they didn't but will deal with that later. He said that she did really well! He was surprised at how much straighter she already was and it was such a relief to hear it.  Everything went well and we were all happy with the good start. We had to wait a little longer to see her which we were then taken to a different waiting room in the ICU. Marc and I went back to see her first, it is the hardest thing seeing your little girl laying there with wires everywhere.

She had an IV in each arm and one in her foot, and then all the regular monitors. We were able to have our family take turns and come back to see her. Loved having the family support we did during that difficult time. After everyone had their turn and said their goodbyes Graycee started to wake up, she opened her eyes and said mom and reached for me! I was had a little anxiety with not knowing how to hold her and what to do but the nurse was amazing and instantly went to get a rocker so that I was able to sit and rock her! Graycee would only let me hold her and would not let me set her back down in the crib. We both trying to rest and of course she had peed through her diaper and all over my lap, oh man it was pretty funny! After getting changed and sitting back down we tried to get comfortable in the rocker but she was tossing and turning and getting all tangled up in the monitor wires unable to fully get comfortable and relax for very long. The nurse finally switched out the crib for a twin bed where I was able to sleep with her the whole night. Marc was also able to spend the night there with us on a pull out bed they brought in.

The next morning she woke up her happy little self! Moving around, eating breakfast, feeding her teddy bear, talking. We couldn't believe it! She was moved from ICU and brought to her room with the goal to be on her medicine orally so that she could get rid of the IV's. She was doing really well until that night. The worst night we had. She was in so much pain and could not get comfortable. She spiked a fever and was breathing so hard and they put her back on her oxygen. The pain team came and seen us the next morning to see how she was doing and helped us figure something out to make her more comfortable. We got it under control but she was still needing oxygen and still had a fever. They finally decided to do an xray to make sure that her lung hadn't collapsed. which thank goodness it had not. so they figured that she was just in so much pain and not wanting to take long deep breaths that it was due to her body working itself up. As the day went on and the pain started to get controlled again she was happy and able to go on walks! Loving every visitor and every moment of being out of her bed! Every time the door opened and the nurses or Dr's came in she would instantly tell them HI! And give a big smile! She would help the nurses out by sticking her leg out there so they could get her vitals! LOL Back to herself and so happy!  As the week went on we could hardly keep her in her bed! She wanted out of there. Sitting in the chair, going for short walks (because still on oxygen so couldn't be gone very long) by the time Friday came she was not staying in her room. We would go for a walk and as soon as we would try to take her back to her room she would freak out lol not wanting to go, so we stayed in the hallway looking at all the pictures. Well We got to go home on Friday the 3rd! With the only restrictions being that she is not able to jump! She should be able to play and do what she wants. Her Dr said to just let her be a kid and have a normal life! What a relief!

July 6, 2015
We had a check up appointment with her regular physician! Everything looked great, her incision was healing good. Her Dr said she had never heard more air flow in her lung then she had that day. It's truly amazing and so exciting!

July 16, 2015
Check up appointment with her Orthopedic.
Had another x-ray done and he just wanted to make sure everything was healing and that all was well! She looked amazing and again was impressed with the accomplishment. He said that she is 15-20 degrees straighter! He is going to make up a surgery schedule and call me with the next surgery. He is thinking in 2-3 months will be the next one!

Thank You again for everyone's love, support, prayers, comforting words, thoughts, donations, everything!!! We appreciate it so very much!