So Cole's Facebook page has kind of taken over for short posts. I really have so much to update here, and will be a bit more diligent in doing so. I have to thank you all for being so loyal as followers and really commenting a ton on Cole's Facebook page. :)
Yesterday we ran a few errands because the weather was miserable here again. I'm a sucker for a clearance, and happened to see some Cars sneakers on the rack. Cole was so excited...they are the perfect size for fall, just a little bigger than he is now. He put them on, saw they lit up and exclaimed, "Yeah!!! My sneakers for school!"
School. School is something we still don't know if he will be able to do. School is something he asks to do each time we drop the girls off or pick them up. This fall is supposed to be preschool. I'm not opposed to having to homeschool, but as a former educator, there is a big part of me that would like him to have the school experience, academically and socially.
At his infusion two weeks ago, more blood was sent down to Houston. Doctors are once again evaluating his nk cell function and hoping there might be a change. For now, preschool is off limits, which makes me a little sad. My girls both had incredible experiences in their programs, thus one of my big reasons for wanting the same for Cole.
Cole does have teachers that come to him. Luckily, we have been assigned an amazing speech teacher and will be working with her again in the fall as well as an occupational therapist. He loves to see his teacher and is not only excited about his time with her but demonstrating what he practiced with her once she leaves. Far cry from the worry I had whether or not he would want to work with her, this summer he has been missing her!
Until then, as we start gathering supplies for the fall, I will keep my fingers crossed for Cole. Even if he can't go to "school" he will have school, and I will do my best to create as much excitement as I can, even down to his new sneakers and his very own backpack only for school, not the hospital, just as he asked.
Showing posts with label waiting. Show all posts
Showing posts with label waiting. Show all posts
Wednesday, July 8, 2015
Tuesday, July 10, 2012
Long
Doing what I do when I'm stressed - cooking. Planning to make spanakopita and cannolis. I know, odd combination. But one I love, the other should put some more meat on Cole's bones.
After spending the morning at the hospital, supposedly for blood tests, we were sent on our way. According to the technician, there was an issue with how the specimens were to be transported that needed to be worked out before the draw could be done. Really? They've been coordinating this draw for two weeks, we have our out of network approvals and were told to show up today. We have been jumping through hoops for a year now, still with no end in sight. At this point if I could wave a wand to get answers other than "we need more tests" I would. Actually, I'd settle for driving the blood to Philly and Cincinnati myself!
Honestly, my overall frustration level at being backed into a corner where I can do so little for my child is beyond words. I know and appreciate that the doctors are doing what they can, especially by seeking other experts and looking into all their suspicions, but inside I'm irrationally screaming because when it is a child it nothing should take this long.
Needless to say, we are still waiting, not for answers, but for the draw itself. Then the real wait starts. For this moment, while my girls play and my boy sleeps, I will cook. Hopefully the kids approve of today's treats.
After spending the morning at the hospital, supposedly for blood tests, we were sent on our way. According to the technician, there was an issue with how the specimens were to be transported that needed to be worked out before the draw could be done. Really? They've been coordinating this draw for two weeks, we have our out of network approvals and were told to show up today. We have been jumping through hoops for a year now, still with no end in sight. At this point if I could wave a wand to get answers other than "we need more tests" I would. Actually, I'd settle for driving the blood to Philly and Cincinnati myself!
Honestly, my overall frustration level at being backed into a corner where I can do so little for my child is beyond words. I know and appreciate that the doctors are doing what they can, especially by seeking other experts and looking into all their suspicions, but inside I'm irrationally screaming because when it is a child it nothing should take this long.
Needless to say, we are still waiting, not for answers, but for the draw itself. Then the real wait starts. For this moment, while my girls play and my boy sleeps, I will cook. Hopefully the kids approve of today's treats.
Sunday, February 12, 2012
Walking Outside
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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