And the best bet is...

The best bet for the three option is going to be C, ignore the upper back and focus on straightening her back from the hips to the effected part of the upper back.

How they plan to do this is by placing a rod connected from her hip to somewhere around where the two red dots are in the photo. Basically then forcing her spine to straighten out and hopefully then that fused section should not fan out so much. That's the plan anyway, the doctor apparently has performed this operation many times.

The two vertical lines represent where her spine should be.

All this aside she is still a happy and playful little girl, she is quite petite, but is still a little bundle of joy. If you have ever seen her you can barely even tell that there is all this going on inside of her.

This pretty much brings everyone up to date. Carrie will have access to this as well, may even edit some or make her own posts. As soon as we know more, we will make sure to keep you updated. Her next appointment is not until March I believe. Thanks all.

Roger

An explanation... Finally

So in September of 2010 we finally got an explanation of what was happening. If you look at the photo posted here, you can see I have outlined something in red, all I did here was retrace the doctors outline. What you are looking at here is a solid piece of bone fused to the 3-4 vertebrae it touches(which are also fused) causing the spine in that area to "fan out" causing the curve, which will get worse as she grows. Some ideas they threw at us, some good, some they said they could do, but will not at this point are: A) Take out that bone, but chances are it is actually a part of the spine and will expose her spinal cord. B) Saw the bones apart, but chances are that the body will just heal it and mend the bones, which will then render the surgery useless. C) Ignore that area and focus on straightening the spine from the hips up the the affected area.

Roger

2010

2010 has been a pretty uneventful year as far as Morgan's issue. Two appointments is all we have had, one in March and one in September. March's appointment was pretty cut and dry, they brought us in for x-rays and a consult with the orthopedic surgeon, he told us pretty much what we have heard since 2009, "Watch her and report any issues, we will see you back in 6 months."

September's appointment was a little different. The doctor said that we can make it 6 more months for sure, and "hopefully" we can make it another year before we need to do the surgery. So it is coming... and coming fast. A little nervous.

Roger

2009

The year for 2009 was pretty slow appointment wise. No more than 2-3 appointments relating to her back. Unfortunately we have misplaced a few of these photos, but they are relatively the same. Minor increases in her spine curvature, but nothing to be to concerned about.

The doctors still want to wait at least until the age of 3-4 before her surgery, she is still to little. For a rough idea at 3 years old, most children turning two are bigger than she is.

During 2009 she really gained a personality. She started fighting back against her sister Hailey. She started joking around more. She thinks she is funny. She can dish it out but has yet to learn to take it. She will sit there and hug her mommy and then look at me and say "I love my mommy" then I will ask her "What about daddy?" and she will just say "Mommy" back to me until I go and tickle her. Again, she has really come into her own in 2009.

All-in-all she is a normal little girl. Despite the hole in her rib cage, the twisted back, fused vertebrae, and missing shoulder blade. Nothing seems to be bothering her.

Roger

The rest of 2008

So for the rest of 2008 we had appointments about every 3-4 months. These appointments were pretty much just for observation. Not a whole lot to say about them, just photos.

If you look at the x-ray taken in June of 2008, you can see I have circled a portion of her spine. This is the main area of her issue, in this area her spine is pretty much fused together. Meaning it is pretty much one vertebrae instead of say 5 or 6. We will get into what they want to do to fix it later. As for right now, the doctors just want to monitor her and check up on her every 5-6 months. They say she is to small for any procedure to be done at this time, not enough meat on her bones to cover the rod they would have to put in.

As for the white lines in the photos, that is the degree in which her back is bent. They call it scoliosis for lack of better terms. It is not scoliosis, but it has the same spine curvature. It is a birth defect.

As for what they plan to do at this time(key words are "at this time" in 2008) is to take an adjustable rod and screw it into her hip and hook the other end to her deformed ribs, giving it a little more protection in the open area. The issue with this though is that from the time of her surgery until she has finished growing, every six months, they will need to bring her in and do a minor surgery to extend the rod. I did not like this idea... but what other choice is there. Thank god this idea has since been thrown out(at least I think it has because it has not been brought up for a while), while other ideas have been laid out before us, but more on that later.

Roger

The next few months.

The next few months were pretty crazy. There were many trips to Marshfield. A lot of X-Rays and ultrasounds, we even had to come back once because Morgan would not sit still for an ultrasound, so we came back and they had to knock her out. It was so weird and scary at the same time... seeing our little baby just laying there motionless. There was also an appointment to do a CAT scan but they could not get an IV in her tiny little veins, so they had to cancel. We even had to see Genetics, they wanted to see if maybe it was hereditary. Their Findings are on this page, you can click them to make them readable.

Morgan did very well during all the appointments, especially for a 6-12 month old who had been fully examined from head to toe. She did get quite tired of all the people and it took her quite a while to calm down when she knew we were going to the doctor.

The main reason for a lot of these appointments were to make sure her insides were fine and working correctly. They were very worried about this due to the fact that since her ribs are so deformed on one side, the body adapted to it by moving most of her vital organs(heart & Lungs, along with others) to the right side of her chest, away from the unprotected side. Being she is so small, they were quite compressed. Her left lung is very compressed in there and naturally they worried. It turns out her heart is strong, and she has shown no signs of lung issues(blue lips, heavy breathing, constantly sick) So from here, the doctors have us monitoring her, and they shift focus from her chest, to her back.

As a side note, it is kind of funny watching a new nurse(or one that has not seen her yet, or read her file) try to find her heartbeat. Some of them have really struggled.

Roger

Findings...

Here are the doctors findings from the first X-Ray. You will probably need to click on the images to make them readable.

Roger

The photo that started it all.

It was a meant to be a regular checkup for then baby Morgan, her six month checkup to be exact. I had taken Morgan in, the checkup had gone relatively smooth for most of it until the very end. The doctor apparently had not felt right about something and wanted to check the motion of her arms and legs again, no big deal for me... after all I was missing work for this. Anyway, the doctor had spent more time on her arms than anything, then she started to feel her(Morgan's) chest and said she was not comfortable with the way it felt, and asked if we could do some X-Rays.

Morgan did very well, as she always has, for being a baby and needing to lay still. After all was done we were shown back to our examination room and had to wait... and wait... and wait. Finally after what had seemed to be close to 45 minutes, the doctor came back in. She said there definitely was an issue and she was going to refer us to Marshfield Clinic Pediatrics for a closer look. The pictures on this page are of the X-Ray and the findings.

You can click on the image to get a better view.

Roger

Introduction

This blog was made to keep friends and family in the loop about our Morgan. It is very hard to make sure that we keep up with everyone, so I figured, why not start something that everyone can easily view at their own convenience.
I know this opens up her issue to everyone in the world, so I ask please do not post anything unless you are a friend or family member, and also remember this blog is about a three year old girl. Please, if you must post, keep it civilized.

Thank you,
Roger