Pushing through it all. .

First and foremost, thank you.  Thank you for all of the notes, messages, hugs and support that we have received from all who have read our story.  If I haven't responded its not because you didn't touch me or I didn't read it, they all have in their own special way.  Its always a humbling experience to expose those things that are heaviest on our hearts to others and feel them lift us up in prayer.  It is true that our God knows every detail and is watching over us with love.  I have always learned that God only gives us what he knows we will have the strength to handle. I also believe God gives you enough that you have no other choice but to lean on him for the strength that you must have to push through it.  So, thank you for reminding me of how much you love me and Thomas and that we are not and never will be alone.

As for the medical update, still waiting to hear from the Urologists scheduler to set up his surgery.  I am just hoping to get it done before the new year.  I will let you know as soon as I have it scheduled.  I was able to confirm that his Pediatric Orthopedic doctor has not taken an x-ray of his cervical spine (neck).  So, our pediatrician is going to go ahead and put the order in for that instead of waiting for the PT evaluation with the order.  So, in the next couple of days we will head to Children's at Mt. Zion.  My hope is there is no curvature or fusion within his neck.  We are also getting a new referral for a Pediatric Neurologists.  The last one we went to was over a year ago and she was out of network.  Money is tight enough without making it worse by not staying in network.  The pediatrician and I discussed the issues at hand and both agreed that she may be able to provide some missing pieces to this very complex puzzle.  I am looking forward to meeting her and get her analysis on our situation.   The final thing we discussed that has been brought to my attention is the idea of getting genetics counseling.  While we know his issues are all congenital, which means create before birth, they may or may not be genetically tied.  However, genetic counselors have great knowledge of being able to look at all of the different parts and connect the dots in ways that other doctors are not.  They are also more knowledgeable about particular syndromes and can advice pediatricians on what other issues may arise and to be on the look out for.  Its another level of reassurance that nothing is being overlooked and they get the best health care for their particular situation.  This sounds fabulous!! I would love for someone to connect the dots for us.  Our insurance company on the other hand doesn't seem to have benefits to cover this type of analysis.  But I have a name of someone and I am looking deeper into it.  While I will still give all of my other doctors a chance to do their very best with Thomas and determine the best course of action with each issue, we may still figure out a way to have him evaluated for more information.  It just might not be right away.

Its not necessarily that I want it labled or to have a definite diagnosis, which is only nice when having to describe to others what is wrong.  My concern is not knowing all of the possibilities and their prognosis.  If there is a chance that I can have a clear picture of where we are and where we are going then I feel like I would be in a better position to get him better health care to ensure the best quality of life he can have.  One piece I have been considering is that most people with Duane syndrome do having hearing issues.  The hearing issues are usually fluid in the ears and that they still cannot hear or detect certain frequencies.  I am not sure, but I don't think even the best ENT doctor is going to be aware of that and therefore as my son's advocate I need to be aware of that.  So, that at each appointment when we are having his ears checked and meet with the audiologists they are aware of the potential problems so that we can correct or avoid them if at all possible.  I do realize that there are never any guarantees and sometimes its good not to read the possible warnings or side effects to cloud your judgment.  But I am willing to try if there is a chance, especially considering that this journey has been nothing but an uneasy, slow unveiling of itself.

Many of you have shared the poem with me, Welcome to Holland.  So sweet and so touching to any mother who has a child who has issues that are out of what we consider to be the norm.  The thought has been resonating through my mind this last week, "Am I in Holland?"  If I am in Holland, then what does that mean for me or for Thomas.  It seemed so daunting and surreal.  I mean, I know I wasn't in Italy but I wasn't sure where I really was.  I finally talked to a dear friend and put into words these thoughts that had been beating me up in my head.  That is when I finally realized, Holland is not a bad place to be as the poem says in the end.  I was focusing on the wrong part of the poem, I had forgotten to think about how it ended.  It simply means you are not where you thought you were going to be, you are in a different place with different challenges and different hopes and dreams than before.  This was not a part of the plan, not my plan anyway.  Its always God's plan.  Everybody's Holland may look different, but we were all derailed and put there for a purpose.  Yes, I thought I gave birth to a perfect, healthy little baby boy and I did.  But with each visit and each doctor something different has been revealed in small bites.  I am not sure why but it wasn't until last week that it all hit me that things really are different with him, but its going to be okay.  No matter what they mean, he is and always will be my sweet Thomas.