What does this mean for his future?

Wow, I get this question a lot and I got it again last night. It usually comes with real genuine love and concern for Thomas and I want to answer it.  I want to give you a positive uplifting answer.  I want it to sound promising and reassuring.  However, this question does not have an easy answer.  The most honest answer would be "I don't know". 

Here are the facts:

• He is currently quit growing and is quite small for his age. 
• He has fusion from C3-C7 which will put extra stress on the vertebrae above and below that area which will lead to degenerative disc disease.  This is not an actual disease but the term they use to describe the process that happens to our bones.  This does cause debilitating pain for any individual who experiences it.  Individuals born with fusion will feel the effects of this much earlier than a normal individual.  Consider the process accelerated.  There is no treatment or prevention other than PT that can be done at this time.
• He has scoliosis in his back along with several abnormal bones making up the structure.  Currently its stable.
• He has Duane Syndrome which has no treatment but effects the movement of his eyes, depth perception and possibly causes double vision.
• He does have low muscle tone which cannot be cured but we can keep his activity level high to build strength in the surround muscles to help him compensate appropriately.  We do PT and OT for this.  We also do ST since this also effects the muscles in his mouth. 
• He does suffer hearing loss when the tubes are not working properly in his ears.  He is on his second set and will have another set before the end of this year.
• All of his organs seem to be in tact and developed properly at this time.

I think that covers it, maybe not.   Its even hard for me to keep up at times.  What does all of this mean for Thomas?  We really don't know.  My prayer is that God will protect him with all of his might and be the absolute Healer that he is for Thomas.  In this, Thomas wouldn't have to suffer the pain that I now know so many adults suffer from with similar issues as Thomas.  The majority of the adults I know with KFS are extremely frustrated and marked by their pain, numbness and disorientation daily.  My heart aches for them and then my eyes widen as I look at my sweet Thomas jumping, running and playing keeping up with all the other kids.  I hold 'virtual hands' with the other mothers who have the same look in their eyes when looking at their own children. 

The other question I often get is "How is he doing?".  I take a deep breathe, smile and say "He's good".  He is, isn't he?  He is running, jumping, climbing all over the place just like every mom wants their two year old to act.  He is talking and learning new words, expressing himself more and more each day.  He eats when he wants too, drinks when he wants too and pouts when he doesn't.  He has an infectious laugh and has become quite good at entertaining himself and others.  People seem instantly drawn to him and I hope that is something he always carries with him in his life.  His therapist are amazed at his progress and how well he is doing in his latest challenges, despite his setbacks he is meeting age appropriate goals.  Speech is still a process but we aren't worried, he's 2!  We have no doubt he is intelligent and will get it in time.  We know other issues may still arise during his life and are prepared to meet each challenge as they present themselves.  That is what we have been able to do so far and that is what we will continue to do with the Lord's help.

The question no one has asked is. .. "How are you financially?"  People have been so generous to us.  I just can't say enough about it.  From our own online fundraiser, to the continued support of donations from our church to the latest event by Caring for a Cause.  It has been a long, long journey for us to get the diagnosis of Thomas and figure out what we were exactly dealing with and the extent of it all.  This journey is not a cheap one and our insurance company has done well in most instances but not in all.  Some things are just beyond their comprehension, in my own opinion, but that doesn't mean we aren't still fighting them with appeals.  We had to cut back, our priorities shifted from our own wants to the needs of our child.  I don't think it is necessarily a bad thing, but I do hate the feeling that we must put living our lives and doing for our other sons on hold completely in order to prevent a financial collapse.  Because of your generous donations, we can pay bills for Thomas, budget properly and live.  Live knowing that God is going to provide for all of our needs if we just believe.

Thomas medical fund is helping to support all of his medical needs.  Thomas needs the therapy to be where he is, I honestly believe the investment and early intervention has made a HUGE difference in his quality of life.  We will probably never be rid of therapy and I am okay with that.  He will need a MRI at least once a year to monitor his vertebrae in his neck and back and this will be under sedation until he is old enough to do without.  X-rays are a constant in Thomas' life as well, at least every six months sometimes more.  We will have to continue to pay for his orthopedics to help his feet be stable and in a good position to help strengthen the alignment in his back. Please don't get me wrong, I not complaining or whining about these things.  I am trying to explain how your money helps us.  I think its hard sometimes for others to comprehend since his disabilities are invisible.  I know its difficult for me sometimes to accept it because he doesn't look sick.  If there ever comes a time where Thomas' Medical Fund happens to have more in it than we need, I promise to pay it forward and donate those funds to a worthy cause similar to Thomas or a supporting organization that Thomas has benefited from. 

Phil 4:19 And my God will meet all your needs according to his glorious riches in Christ Jesus.