Every day is a new adventure it seems. Once we got the phone calls from both genetics and immunology informing us about Cole's results we were also instructed on the next series of steps we needed to take, immediately.
Now that Cole tested negative for NEMOS, there was still the mystery as to what was the root cause of his NK cell dysfunction. Our immunologist explained not only the case studies she had been comparing him to, but her contact with a leading physician and researcher at Cincinnati Children's Hospital. They stated we would need to take Cole for additional function tests as soon as possible. Besides the repeat NK cell test they would also be looking at his perforin/granzyme B functions as well as his IL-2 receptors. Just like the last time, the blood would be drawn here, then shipped to Cincinnati for evaluation.
In addition to the function tests, now that the genetic results were in, the gastrointestinal doctors wanted Cole's colonoscopy scheduled as quickly as possible. With a few calls, OR time was found and the procedure was scheduled for next week.
As I drove to our blood work appointment, I dreaded the draw. Not the screaming I knew was coming, but his face. The absolute look of betrayal when I have to hold him down, then the sheer terror in his eyes as he is pierced while tube after tube is filled with his blood just shatters my heart in a million pieces every single time! Luckily, today's phlebotomist was the best we've had up to this point. Unlike others, the first time was a charm and she was easily able to fill the seven tubes she needed without utilizing the syringes to suck additional blood from Cole's veins. Within a few minutes my baby was back in my arms, twirling my ponytail in his hand, his head lying on my shoulder.
It is truly incredible just how forgiving a little one can be. Here I struggled from the moment I knew he needed more blood work and in an instant it was like he had forgotten that I assisted the woman who had caused him such pain. Immediately I thought about the quote that "having children is to decide forever to have your heart go walking outside of your body."
Initially I realized what this meant not long after our first daughter, Paige, was born. She was colicky and I just had no idea what to do to soothe her. After a few days when nothing was working I felt like I was doing something wrong. Unless we were hiking it seemed like she cried 24/7. My heart ached terribly when I saw my friends with happy babies while mine was so sad. Fortunately, as she grew, she also grew out of her colic. About that time, I needed to return to work and leave her which caused me a worry like I had never experienced. After a few weeks, I knew she would be ok, after all, she was home with her dad. Still, the idea that as her mom, I could not always be there each and every second she might need me broke my heart. I wanted to be able to keep her safe from anything that could cause her pain, like when she was safely growing in my belly. In the end I knew I could not shelter her from the world, that in order for her to grow and learn she would have successes and failures, and in both, joy and pain. So while I would worry and share in her disappointments, I would also be proud of her achievements as she grew into an independent child, one learning to make choices and live with the consequences, with and without my help as the situations would allow.
While more of my heart left my chest with babies two and three, I realized this feeling would not subside and was a natural one for any parent. There is nothing like the love a parent has for a child not to mention the lengths we parents will go to keep our children safe and free from pain.
While I still ache when I can't stop Cole's agony or afflictions, I know he is surrounded by love and in good hands, which is the most I can ask for, not just for him, but for all my kids. No matter what they may endure in their lives, whether I am with them physically or not, a piece of my heart will always be with each of them wherever they may roam. For this week, it means mine will be walking around a few classrooms and in a hospital operating room while I sit nervously in the waiting room, anxiously hoping for answers.
In addition to the function tests, now that the genetic results were in, the gastrointestinal doctors wanted Cole's colonoscopy scheduled as quickly as possible. With a few calls, OR time was found and the procedure was scheduled for next week.
As I drove to our blood work appointment, I dreaded the draw. Not the screaming I knew was coming, but his face. The absolute look of betrayal when I have to hold him down, then the sheer terror in his eyes as he is pierced while tube after tube is filled with his blood just shatters my heart in a million pieces every single time! Luckily, today's phlebotomist was the best we've had up to this point. Unlike others, the first time was a charm and she was easily able to fill the seven tubes she needed without utilizing the syringes to suck additional blood from Cole's veins. Within a few minutes my baby was back in my arms, twirling my ponytail in his hand, his head lying on my shoulder.
It is truly incredible just how forgiving a little one can be. Here I struggled from the moment I knew he needed more blood work and in an instant it was like he had forgotten that I assisted the woman who had caused him such pain. Immediately I thought about the quote that "having children is to decide forever to have your heart go walking outside of your body."
Initially I realized what this meant not long after our first daughter, Paige, was born. She was colicky and I just had no idea what to do to soothe her. After a few days when nothing was working I felt like I was doing something wrong. Unless we were hiking it seemed like she cried 24/7. My heart ached terribly when I saw my friends with happy babies while mine was so sad. Fortunately, as she grew, she also grew out of her colic. About that time, I needed to return to work and leave her which caused me a worry like I had never experienced. After a few weeks, I knew she would be ok, after all, she was home with her dad. Still, the idea that as her mom, I could not always be there each and every second she might need me broke my heart. I wanted to be able to keep her safe from anything that could cause her pain, like when she was safely growing in my belly. In the end I knew I could not shelter her from the world, that in order for her to grow and learn she would have successes and failures, and in both, joy and pain. So while I would worry and share in her disappointments, I would also be proud of her achievements as she grew into an independent child, one learning to make choices and live with the consequences, with and without my help as the situations would allow.
While more of my heart left my chest with babies two and three, I realized this feeling would not subside and was a natural one for any parent. There is nothing like the love a parent has for a child not to mention the lengths we parents will go to keep our children safe and free from pain.
While I still ache when I can't stop Cole's agony or afflictions, I know he is surrounded by love and in good hands, which is the most I can ask for, not just for him, but for all my kids. No matter what they may endure in their lives, whether I am with them physically or not, a piece of my heart will always be with each of them wherever they may roam. For this week, it means mine will be walking around a few classrooms and in a hospital operating room while I sit nervously in the waiting room, anxiously hoping for answers.
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