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!
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!
