We saw Dr. Connolly at the Center for Advanced Medicine today downtown. Dr. Connolly is affiliated with Wash U and has come highly recommended by several other physicians. We felt we were in good hands today and were very happy to be visiting her for a second opinion. Our appointment started at 8:30am and we didn't get home until 1:00pm. We were there all morning discussing thel details of Ryan's history. In the room was Dr. Connolly, the neuro fellow, and 2 medical students. After the history was done (we also discussed some of Charlotte's history), the team examined Ryan. They deliberated for a short period of time after that and then Dr. Connolly came back into the room to discuss the assessment.
We were told again today that of the possible 4 diagnosis that come to mind for Dr. Connolly, none of them have any treatment and that her prognosis for Ryan is the same as what we have already been told. She did have some other thoughts about the level of dysfunction in the neuromuscular pathway. She observed that Ryan has good "sensation" in his extremities, meaning, if you brush something soft on the bottom of his foot, her reacts some by flailing his toes. However, Ryan has no deep tendon reflexes in his lower extremities. (When they hit your knee with the hammer). The original thought was that the nerve was dysfunctional, the part of the pathway that transmits and recieves signals. But, since he seems to be able to "recieve" signals, she thinks it is possible that the dysfunction may be higher up, in the spinal cord itself. She said that of all the tests she feels is most important in his situation, the SMN gene test (one we sent out for last Wednesday while in the hospital) will help guide her further in the attempt to uncover an actual diagnosis or name for what has happened to Ryan. That test result should be available any day now... So, either way the result goes, will help us rule in or rule out this disorder, but doesn't change the fact that no matter what we learn about a name, it will not change his prognosis.
Hearing this from the physician, the guru, the person who should know all about neurodegenerative disorders was painful. Even though the information we were given today wasn't much different than what we have been told in the last 2 weeks about our son's life, it made the gravity of the situation strike home again. I know that I left the appointment feeling numb, in disbelief all over again. Were we really just told that there is nothing they can do to help our son? We are those people... the people no one envies. As we walked past the other people in that building, I wondered to myself, how many other people here are feeling the hurt that I am right now, but are walking aimlessly, trying to go on about their day, putting one foot in front of the other because that is what you have to do? How many other people are thinking to themselves that no one can imagine the thoughts in my head right now? I wish I was able to be carefree and pretend that I am not in such a state of uncertainty. I knew that I was probably not alone in the thoughts I was thinking about our lives, the way they have been turned upside down so suddenly. But, this isn't the first time. Anyone who has known us for the past 3 years knows that we are all to familiar with having our feet swept out from under us and being left with the challenge of finding someway to get back up.
I am not satisfied with just getting up though. I want to stand tall, to learn from what has happened, to help others, to be there for my husband, daughter, family, as they also deal with the hurt. I know that right now, it is important for me to be there for Ryan, as his mother that loves him, plays with him, smiles, talks, sings as if nothing is wrong. He needs me to be nothing less. I can only hope that I am able to do that for him and for me. I am not pretending that none of this has happened but just trying to make the time we have the best that it can be. Simply put, but oh so much harder to do as most difficult things are.
Chris and I have turned to eachother a lot in dealing with all of the feelings that have surfaced in the last 2 1/2 weeks... (ONLY 2 1/2 WEEKS!) So much has happened, but because of Chris, I am able to express feelings much deeper than I could ever type, feelings that I can share just by a look, a hug, an incomplete sentence that makes perfect sense to him. God has given me strength through him and the phrase "God doesn't give you more than you can handle" I think that if that is true, then that is why he gave us eachother. He knew that we would need eachother most and that the bond, the laminin that holds us together would have to be stronger than no other. He has always known we were meant to be.