July 14, 2016
Check up appointment.
Her CT scan showed that she has a big clump its fused in the back only and not the front. Her spine is also fused tho, which he was really hoping that it wouldn't be. He is going to a conference to present her case to 200 people to see what their thoughts would be on how to proceed with her and what would be best. He is thinking of having the back part of her upper ribs float which he will do on her next surgery when he goes in to expand. He said he had a lot of studying to do with her case cause she is very complicated and will call me when he figures things out. Her next expansions will be worse then the ones before because he will have to cut her bigger, the VEPTR is just bigger equipment then the rod that was used. The expansions will still be one day surgery tho just more painful. He also said not to put her in activities that we will have to take away later on, he believes that he will be working on her til she is 15 years old. He is not sure exactly how much he will work on her and how much will be done exactly but thinks it will be that long. He is very impressed with how well that she heals tho. He said that with her spine being fused it definitely is worse and he is not sure how they will separate that but when they do they will have to put cement or figure something out to put in between so that they will not fuse back together. Right now everything is pretty soft and when she is about 5 it will all turn into bone and will be a lot harder to get through to separate everything so hopefully they can get it all apart before that happens. So right now we just wait to see what s going to happen after the conference and he figures out what he will do next. The next surgery he will not being doing her spine tho he thinks that that will happen in 6-12 months.

This is her x-ray that was taken today.

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!