Settling in with KFS . . . or not so much

Its settling in that Thomas has Klippel-Feil Syndrome. Doing more research, finding support groups, message boards and talking with our orthopedic surgeon with additional questions.  We were relieved that there are no apparent issues at this time, but the reality of it all is that he does have KFS and will always have it.  Its rare, which makes it more difficult.  Some of the most important points that I have learned is that not only are you dealing with abnormal building blocks for his spine but they are also degenerative.  This means that even if he makes it through the complete development cycle and through puberty with no issues his bones will break down quicker than that of a normal persons bones.   Again, each case is highly individualized which makes it extremely difficult to compare one case to another but the general behavior of the bones seems to be quite consistent.

Another research study ~ Thomas has been invited to participate in another clinical research study.  This one is based out of Madison, Wisconsin.   I have received the consent form information and will be moving forward from there.  There primary focus is on the KFS and other spinal anomalies. 


His doctor would like x-rays at least every 6 months and a MRI once a year.  I think he is extremely competent in his field and trust him completely.  However, we are also looking into other options.  Obviously, finances are becoming more of an issue as these syndromes are brought into light.  We are going to move forward with the application for Katie Beckett, something I have personally had a hard time pushing through the emotions and the overwhelming paperwork required.  We are also looking into being referred to the Shriners hospital in regards to the KFS.  At the very least they will have him on monitoring and use them on an as needed basis when surgery may be needed.  I will keep you updated as we move through both of these processes.

The pediatrician and I will be setting up a meeting soon to review all of Thomas' medical case to see where we are and where we need to be.  As a mother, I don't want to make mountains out of mole hills.  If fact, right now I want to pull the covers over my head and pretend this all isn't our life!  But I want someone with the medical expertise to review it all and help me make informed decisions about my child's care.


I don't know how to do this.  I was hoping the good news would bring me some relief but that really hasn't happened as the reality sets in.  So, I just push through it the best that I can with the hopes that I will eventually get back up again, I will eventually get to a place where everything is okay.  For now, I have moments that I play with the boys and pretend we are normal.  Sometimes hours, rarely a day.  I am reading about ways to turn your brain off and handle stress, neither of which I am good at.  I try to not think about it and then I am consumed with it in a blink.  My stomach is starting to cause me problems and sleep is hard to come by for the most part, I feel like freshman year of college all over again.  I am trying to work through acceptance of this new syndrome and the impact that it is making now.  I don't want to even consider what this will mean for him in the future at this time.  Its too overwhelming and its not definite.

God is still sending me blessings even when I didn't think I needed them anymore.  I have come to realize that being a Type A personality and having Faith in our heavenly father seem to have its own set of complications.  Its a constant tug of war of who is in control, only I am the only one tugging at the stupid rope.  Its such a balance, because you need to loosen your grip of the rope and let it lead you.  I want to be proactive and do all that I can for Thomas, provide him the best medical care and prevention of anything that we can.  I don't want finances or doctors or anyone to prevent us from finding or doing something early to prevent further issues or complications down the road.  I realize it is impossible to detect or predict anything, but the medical field is always pushing for early intervention.  I am also not trying to miss my life, my kids growing up and enjoy them.  There are times that I stop everything, just drop it and am engrossed completely with my kids.  I fill their tanks up and they fill mine.  Its such an amazing feeling and it takes you away from the real world even if its just for fifteen minutes.

I have been playing with the blog more, adding sites that I visit frequently and organizations that seem to work with cases like Thomas and make it more personal.  When I first started this blog, I had no vision and wasn't sure people were going to be interested.  Now I am beginning to realize that I have quite a following for people have fallen in love with Thomas and are intrigued by his story.  I think it is also a therapy for me to share my story as a mom.  I am thinking I need more therapy at this point. HA!

More updates to come. . . just wanted to update you for now as to what was going on.