Wednesday, March 13, 2013

Next Visit

On March 6th we returned back to Shriner's so that they could take another x-ray of Camden's back and we could talk to Dr. Stasikelis about the MRI results. Everything seems to go so smoothly at Shriner's it's never busy and there truly aren't many people there so it's very calm. We got back to take the x-ray, I had warned my husband before we got back there that Camden did NOT like the last x-ray so this would probably go the same way. Little did I know that it didn't. All we really had to do was hold his legs still for about 10 seconds to snap the photo and we were out of there. I was shocked and VERY happy about this!
We sat down and waited in the waiting room for the nurse to call our names, it was very quick because like I said before there really aren't many people there.
We got back to the room, and I felt like we waited ALL day for him to come in. He finally came in and greeted us, then said "Well I hate to bring people bad news, but Camden will have to be casted, his curve has progressed from a 33 degree angle to a 44 degree angle in a little over a month". And once again, I felt that lump in my throat since we had talked about this possibly being "resolving", I was already expecting this but hearing him talk more about it made me sick. I could tell by the way Camden sat that it was getting worse and feeling of his back every single day. I had already prepared myself for this news.
He will stay in the cast for 1 year to 18 months depending on his rapid growth. We will visit Dr. Stasikelis and his team every 6 weeks for Camden to get his new cast placed. Dr. Pete is a perfectionist, he wants the spine to be a perfect ZERO before he stops placing the cast, which is fine by me because I would rather my baby have a good healthy life but what kind of mom wouldn't?
My mother has been doing so much research on Infantile Scoliosis and found a group for mother's that are going through the same thing. I finally looked at it and found just the person I needed to talk to. She is a mother going through the same thing I am but her timeline is ahead of mine. Her son(Jackson) went through the same thing Camden is going through now at the same age! Jackson was placed in his first cast when he was 15 months old, he was at a 50 degree angle. He is now on his 9th cast and is spine is at a 4 degree angle!! I KNOW UNBELIEVABLE!!! His mother(Jennifer) has given me a sigh of relief, she has kept me up to date with how things go and what could possibly happen. She has been very encouraging, just listening to her I know that I can get through this and it's not the end of the world, although sometimes I may get weak it even happens to her STILL but I have to be strong for Camden. Of course I do get scared but I keep thinking to myself "Morgan this could be so much worse" that is when I thank God for giving Camden only this.
I pray and pray for those mommies that go through more than this because this is tough enough to deal with.

Camden's first cast will be placed on April 11th,2013. I pray for my strength and for my families strength to get through the things that we cannot change right now.
Camden's x-ray from March 6th, 2013 at Shriner's

 This is Jackson in his 8th cast! I know most people don't know what a cast looks like and lots of people think it has more to do with the body but it doesn't. Jackson runs, plays, jumps, dances and pretty much anything else that his cast will allow him to, or should I say he doesn't care about that thing he will do it anyways! Him and his mother are definitely an inspiration on us!

Saturday, March 9, 2013

Stressful

We had the MRI done on February 27th at Children's at Egleston this is one thing that I was so stressed out about. I had so many mixed emotions I didn't know how to feel on that day. I couldn't feed Camden after 8:00 that morning so that was scary and nerve racking because those who know the kid loves to eat! While we were out that way we decided to take advantage of this and take a visit to The Varsity(Camden's first trip). He did so awesome! I was such a proud momma because he never whines or fusses about anything especially when he couldn't eat for so long. We finished up and headed over to the hospital to get this over with. His appointment was scheduled for 1:00, we signed in and had to wait to register him. We proceeded downstairs where they took him back to the little baby rooms, with the little baby hospital beds. The nurse had to check all of his vital signs and make sure he was well enough to be put under anesthesia(which he was).
He was in the clear so now they had to stick him with the IV (in his foot since he likes to suck on his fingers and hands), he HATED that and I was just fine throughout that. The doctor came in and talked to us about what was about to happen and that's when I felt that terrible lump in my throat and that nauseated feeling in my stomach. I was about to see my baby be put to sleep and taken away from me for about an hour, this was so scary. No mom deserves that feeling at all. As he laid there asleep I just cried and cried, I was put in the scariest situation I have ever been in. I gave him a small kiss on the forehead and walked into the waiting room.
An hour had passed and the nurse came out to get me. I asked her before I walked back if he was awake, she said "he's awake, but his eyes are still closed" I was so nervous about this. I wondered if he was going to get sick, or be very ill. As I walked back he was lying there rolling around and as happy as could be but his eyes were still shut. I picked him up trying to keep him from his head falling back or forward. He ate his bottle right away, and his eyes opened up and he was back to the happy baby he normally is, so that was a relief after that we were released to go home.
A few days later we got the results it came back NEGATIVE!!! No tethered spine or anything wrong  with it. Just a massive curve! We got all the results and the MRI photos and have to go back to Dr. Stasikelis at Shriner's on March, 6th for him to take another x-ray and read the MRI. And again, I had a lump in the back of my throat.
These are some photos of Camden right before his MRI...




Here are the results from Camden's MRI. They are pretty self explanatory:


Thursday, March 7, 2013

Our first visit

We finally got an appointment to visit Shriner's Hospital on February 6th to meet Dr. Pete Stasikelis and his team. I have heard so many AWESOME things about him and I couldn't wait to meet him and talk to him about this problem.
We made our way back to the waiting room, and everything happened so quickly. First the physician's assistant came in to speak with us for a little bit about Camden's spine, to answer our questions and to take notes. He evaluated Camden and how he interacts with us. He was hoping that Camden's scoliosis would be "resolving" which means to curve would eventually straighten as he grew. Well I got very happy about that. It was a releif to know that he was so positive about this. But still in the back of my head I was thinking that it wasn't right.
After evaluation, Dr. Pete came in to evaluate Camden also. He said that most likely this was Progressive Infantile Scoliosis because of his RVAD(rib verticle angle) and of course my heart sunk to my stomach. I thought that I was going to puke after hearing that. He ordered Camden to have an MRI done so that we could be at ease that is was nothing to do with his spinal cord, and that he didn't have a teathered spine. IF that was the case they would have to treat that before we could take another step further.
Dr. Pete had recommended having Camden "casted" (there is not ONE person that I have spoken to who knows what exactly this is). He explained that this would be a hard plaster cast that would be placed around his torso, he would be put to sleep. The cast would be placed every 2 months because of his rapid growth and this could go on for a year to 18 months just depending on how much his spine would be tricked to grow in a different way and until it was completely straight at a 0 degree angle. This is a very positive pocedure from what I have heard from so many other mom's. It is very effective and is almost 100% curable.  Of course there was a lump in my throat after this was given an option. I was nauseated I would have never thought! This still wasn't 100% yet because we still weren't sure if this would cure itself or not. We scheduled to have the MRI done on February 27th, and I was NOT looking forward to this at all.

This is a picture of Camden's back while he is sitting up unsupported at 5  months old. Notice he leans more to the left and his RVAD (rib verticle angle) is out more on that side.

Wednesday, March 6, 2013

Answers

I guess I forgot to mention in my last post that Camden was born on his due date, September 5, 2012 at 8:10 p.m. Yes, I was in labor ALL DAY. So this post would put him at 4 months old, poor baby. Can't catch a break!
Camden's pediatrician schedule us to go see an orthopedist so on Monday, January 21st since the curve was a 33 degree angle according to Children's Hospital in Atlanta. I was really looking forward to this appointment to find some kind of answer as to why Camden's back was this way. When we got to the appointment, we were the only ones in the waiting room. I felt like we waited FOREVER! We finally got to the back and met Dr.William Schmitt, he informed us that Camden's back was only a 23 degree angle, to do some stretches with him and to come back in 3 months and we would go from there. I was so relieved by this, it made me so happy to learn that my baby didn't have scoliosis and that stretches would help this. Well any mother would want a second opinion from any doctor even if they do tell you the same thing just so you are at ease with the whole situation. Some of these doctors are not as smart as they seem. So a few days passed by and we made an appointment to go to Shriner's Hospital in Greenville, South Carolina to see doctor Pete Stasikelis who is the BEST doctor known to man on February 6th.  I was still in denial about the whole thing because I never thought something like this could ever happen to us but again I knew this is what we needed to do for Camden.  

Tuesday, March 5, 2013

You Learn Somthing New Everyday

On Friday, January 18th, 2013 we had an appointment with Camden's pediatrician a week ago, she scheduled us to take him to have an x-ray done on his back. So, that was the deed for today. Camden had his x-ray done and was not very fond of being held down or to sit still for 2 minutes. He hated that so much! But he was also very hungry on top of that. I've been in denial, my child was born perfectly fine in our eyes. Although he did weigh 9 pounds even, which was hard on this mommy. He stayed in the hospital a week after he was born because he was sick and they had to treat him with antibiotcs so with him being a newborn baby they had to keep him for 7 days. Don't you think that is enough? Well it wasn't. Late December we discovered that he would lean more to one side than the other, that's when the x-ray was ordered and now we are here.
We got to look at the x-ray and the first thing I said "yep, there's that curve". The x-ray was sent back to Camden's pediatrician where she would call me and give me the diagnosis. A few hours went by and I recieved the phone call that was on my toes about all afternoon. "Camden does have a little bit of scoliosis but it will be okay! He will just have to wear a brace and it will straighten his back out". Only to find out that I was about to learn about something that I have NEVER heard of before.

Camden's first x-ray that was done on January 18th, it was measured at a 33 degree angle.