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!

March 13, 2015
Bingo Night!
We had a friend put together a Bingo Night Fundraiser for Graycee in our hometown of Cleveland, UT. There was Bingo, Dinner, Root-beer floats, Silent Auction, Live Auction, and a Gun Raffle. We received donations from many companies and individuals for the fundraiser as well as in the mail for Graycee's donations account. The night went so well and I was in compete shock at how many people showed up to support us. The community we live in is so amazing! I can't express or say enough just how Thankful we are to all that helped us out in every way possible.

March 16, 2015
Appointment with Dr Heflin.
Her x-ray showed her to be 5 degrees worse than the last appointment she had. He thinks she is now big enough for the smallest VEPTR that there is but is wanting to wait til she is 16 months now to do the surgery just to allow a little more time for her because she is so tiny. There is also the possibility of her spine being fused to itself as well as her ribs but can not be certain of it until later on. Her heart has also adjusted and is more on the right side of her body, which just shows that her body is adjusting and doing what it can with the room that it has right now. As far as the centimeter of her lungs she is about half way of what he would like it to be so she has a long way to go. He explained a little more in depth what is going on with her ribs and what they will be doing. They will be cutting apart every other rib and the ones in between will be cut from her spine and be a floating rib to allow for more room for her lung. Her incision will be from her spine down and clear over to the her side in an 'L' shape. She will have the procedures done every 4 months and then as she gets older they will do every 6 months as well as using a magnetized VEPTR when she is big enough so that when it does need adjustment it can just be done in the office. They will be waiting as long as they possibly can to put the rod along her spine. When she has that in she will not be able to bend very much so they like them to be older. As far as being able to play and do kid things he says she should be alright just does not want her jumping and bouncing around. He told us on the outward appearance just looking at her she doesn't look to bad and is actually very well balanced for what she has but when looking at her x-rays she is a very complicated case but feels confident that they will be able to help her out. Lungs only have one shot at growing and stop growing when you are 6. The lung itself grows but the air pockets don't expand anymore then what they have at 6. When she has the surgery she will have to learn to breathe more with her stomach then her chest and he says looking at her that she should have no problem adjusting to that. She will have the procedure done at Primary Children's in Salt Lake and will stay there for at least 5 days with the first 2 days being in ICU. He left saying that they have had amazing results with the VEPTR and He wants to get together with his partner to discuss exactly when and what they would like to do with her and will give us a call within the week. They won't be able to set an exact plan because they only have a general idea from the x-ray.

March 26, 2015
We have a set date for her first surgery. June 29th! It is a 4 hour procedure and she needs labs done the day before and she will have a pre-op appointment on May 18. Thanks again to all those that have supported us! Thanks for reading about her update :)

January 3, 2014
Graycee Mae Jensen was born! She is our youngest and has 2 older sisters. She is the happiest most care free little girl. She loves animals, babies, other kids, and playing with her siblings. She is so strong and so loved by all those who know her.

When Graycee was a few weeks old I discovered that she held her head to the left alot, noticing it the most in her car seat, Anytime we put her in it I would try to put her head straight so she would be more comfortable and it wouldn't really go straight. I thought that it was just the way she liked to lay so didn't think a whole lot about it. As she became a few months older I noticed her head was becoming flat on the right. She would always lay the same way no matter what and was concerned about her getting too flat of a head. I also noticed that on her back on the left she had this bump that had always been there. And again didn't think too much about it at the time. Well Graycee  had a doctor appointment and when the nurse was checking her height and she tried to get her head to go straight I mentioned that's just how she holds it and pointed out her flat head as well. She immediately said that she probably has torticollis. The nurse told the dr and she looked at her and agreed that she did indeed have torticollis and showed me some stretches to do with her throughout the day. I was told to try it for a few weeks to see if it helped. It seemed to start helping at first and was relieved but then her head just started going back towards the left. Graycee had another appointment so I told her doctor that it was starting to go back and she referred us to a physical therapist.  I was actually relieved, I wanted someone to help out more so that she could get better and was worried if I didn't do it right it would be my fault. I also asked her about the bump on her back and she said it would all fix and be fine with the therapy. So I made the appointment and got her in that week.

May 29, 2014
Graycee's first physical therapy session.
The physical therapist looked her over and said she has scoliosis and torticollis. He showed me some stretches and which ways to have her look as well as how to lay when she is asleep as well as in her car seat, he then measured her flat head to determine if she needed a helmet as well as to have a starting measurement to see if it got worse or better. She wasn't in need of a helmet just yet but was getting pretty close.

June 3, 2014
Physical therapy session #2.
Her therapist came in showed me some special pillows and things that we could buy to help out with her flat head. He also brought up her scoliosis and told me he didn't want to worry me but her scoliosis is the worst case he has ever seen. Now all you probably know that telling a mother to not worry just makes her worry more right? Haha so needless to say I got a little more stressed out after that visit. He wanted her dad and anyone else who took care of her to come to her next visit so that they could learn the proper way to handle the stretches and things we needed to do with her.

While living our crazy busy life waiting for the next therapy session I had daily questions and concerns going through my mind..... Am I stretching her right? Am I hurting her? Am I doing it long enough? Am I doing it too much? Am I laying her right? Am I holding her right? I had family asking if they were holding her right and doing everything right. I was praying that we all were and that everything would be fine. I have a friend who is a therapist and I would constantly bug her daily and text and ask if I was doing things right. I just had a constant nag and concern. We went swimming one day with family and friends ( and I am sooooo thankful that we did) my sister in law and friend told me all the wonderful things about primary children's hospital and pushed me towards calling and making an appointment. My friend even had a number for me to call. So I decided that day that I was going to do it, I was going to call and make an appointment as soon as I got home that afternoon. Instantly upon thinking that, I just felt this HUGE weight lifted off my shoulders and instant relief, I had a moment of no butterflies in my belly and the anxiousness was gone. I immediately knew that it was what I was suppose to do and was making the best decision that I could for Graycee!  

June 9, 2014
Physical therapy session #3
Marc came with to this appointment. The therapist asked if we had any questions or concerns. Marc said he was more concerned about her back then anything. So the therapist grabbed Graycee and decided to really look over her back. He sat and examined her for awhile then turned to us and said that we should take her to primary childrens. The bump on her back was actually her ribs and that they were twisted. That she had a severe case of scoliosis and wanted us to have another opinion and someone looking over her that deals with it more on a daily basis and would best know what to do for her. I told him I was ahead of him and had already made the appointment.He wanted to put off anymore physical therapy sessions with him until we hear back from primary's and how they would like to proceed. 

June 30, 2014

Graycee's first appointment with Dr. John Heflin at primary childrens. 

As we were driving to the Riverton office for the appointment Marc and I were pretty nervous and anxious to see what they would have to say. We discussed it before hand and figured she would probably just be in a back brace to help straighten her out and she would be just fine. I didn't really want her to be in a brace I was worried about it and just obviously made me sad. But figured if that is what she would need then it was fine by me. We got to the office and they took her back to do an x-Ray. Then they took us to a room to wait for the doctor to look at the results and come in. He came in with his laptop and showed us her X-ray. He told us that she has fused ribs, and her left lung is not able to grow because of it as well as scoliosis but wasn't sure how bad that in itself was due to the ribs. He said she would need to have a VEPTR, Vertical Expandable Prosthetic Titanium Rib, put in her and she would need surgery every 4-6 months until she was about 10 years old. He said as the procedures went on that we will see how her back does. Having what she has used to be lethal not even 10 years ago but today we have the advancement in technology and she will live to adulthood now! He also told us that the following day he had a conference with a bunch of doctors around the world, they get together and they discuss such rare cases like this. He didn't want to give us a bunch of information about the procedure until after his conference and he would give us a call.
So we left that appointment totally speechless and so many things going through our minds. We kept to ourselves the whole ride home just trying to process it all.

I received the Dr's phone call a few days later and he told us they decided they thought that it was best to wait until Graycee turned 18 months old before doing her first procedure, to call if we needed anything, and to make another appointment in about 4-6 months for a check up.

December 1, 2014
Graycee's second appointment.
She had another x-ray done and again the doctor showed us the results. As far as the angle of progression with her bending to the left it hasn't changed that much from her last appointment. You could better see what was going on because of her growth from the last time, she has a cluster of ribs stuck together on top and then another cluster stuck together on the bottom with a few in between that are fine. He would like to do the first surgery when she is 14 months old. He said that he wants us to be mentally prepared for everything when it comes. It is not a matter of  IF things are going to go wrong but WHEN. She has a long road ahead of her. He also is going to put a rod along her spine to help out with straightening but he met with colleagues again and decided to wait til she is around 2 years old to do that one. We need to keep her away from people that are sick and keep her has healthy as possible. Some positive news tho is she is pretty healthy for what she has. Generally those that have this problem are constantly sick and she seems to be doing just fine.

We have another appointment set up in March and we will see if she is big enough to do the procedure. She is right there with being big enough for the smallest VEPTR that they make. We will meet her Dr's partner (he will also be in on the surgeries, with such intensive surgeries they both will perform it) as well as he will show us the VEPTR and give us more details of all that is going to happen. If she is big enough at the time of her appointment we will be doing the surgery within a couple weeks after.

It's quite a struggle for our family knowing what this beautiful little angel has to go through. But I know that she will be fine and she is so strong and will make it through it all. I know our Heavenly Father is there with us and will help us make it through it. I am SO SO thankful for the advancements our generation has made and for the chance my little girl has to make it through life today! She is healthy and growing good she is walking all over and getting into everything. We also just celebrated her 1st Birthday!!!!! She brings so much joy to our lives. I can't imagine life without her. Thanks to all the support from our family and friends! Thanks for reading!